Life at Star's Rest

2011-11-13T15:00:00.000-08:00

With very heavy hearts, we must tell you that our beloved Carmon slipped quietly from this life on Friday evening, 11/11/11. Her earthly struggle is over. As her longtime friend Susan says, “We will all miss Carmon and the beauty and courage she brought to everything she did, including her final struggle. It is comforting to know that she is free of pain and reunited with the beloved ones who have gone before her.”

Soon, Mike will add his personal thoughts to this blog. In the meantime, we extend heartfelt thanks to each of you. You have stood by Carmon through her brightest and also her darkest hours, and in so doing you have helped lift and carry her (and by extension, us) with your support and affection. As she often said, love to you all.

2011-11-07T05:39:00.000-08:00

Hello, friends and followers of Carmon and this blog. This is from Mike, Lucy, and Anne on behalf of our beloved Carmon.

We are deeply saddened to tell you that Carmon slipped into unconsciousness on Thursday morning, November 3, 2011. She is not expected to awaken or to survive this episode.

This comes as a shock to those of us who've stayed current with her condition. The plan was that she would be taking 3 weeks off from treatment to gain strength to do another round of chemo as a preventative measure. All of us, including Carmon, believed that she would be one of the few who could be a long term survivor of melanoma. She's been an exception to just about every rule all her life.

But that was not to be. On Wednesday, Carmon and Mike received the results of a scan showing that the cancer had moved aggressively into her liver. The doctors quietly said that more chemo would be the next step, and had her check back into the hospital on Wednesday to begin treatment the next day. Mike drove to Mora that evening to tend to their animals. Carmon called him at about 7pm to say that she was settled into her room and would talk with him the next morning.

On Thursday morning, she didn't answer Mike's calls. Then the hospital called Mike, telling him that he should come right away, as she'd become less and less interactive and alert through the morning and was now unresponsive. When he arrived, he was told that an MRI showed that the cancer has also invaded Carmon's brain and spinal cord. As far as we know, she never got that devastating news before something caused her brain to shut down.

She is now in an unresponsive state in an inpatient hospice facility. She is not on medication, nor does she appear to be in pain, for which we are grateful. Her wishes were that she not be put on artificial life support. Her body is in the process of shutting down. If indeed her true self is still inhabiting her body, she seems at peace. We are sitting vigil for her as much as possible, hoping to have the privilege of being there when she departs this reality.

Your kind thoughts and prayers are appreciated.

2011-10-28T18:25:00.000-07:00

I'm doing alright!

I know folks have worried at my silence again and I apologize. I have been working hard in therapy, both to improve and because I knew Mike would soon be on his way back home.

He got home this last week to puppies who I am sure were beside themselves with joy. I've heard just a little about their happy antics and wish I could hve been witness to more ... ;)

I know the horses were both glad to get back to routine and angry to have to do everything correct at feeding time once the BIG BOSS was back in town.

Mike brought himself and the dogs to visit this evening, along with some warm clothes and a list of the wonderful equipent he found to upgrade the house with.

I still smell of woodsmoke from where he hugged me and I'll wrap the scent warm and close around me through the night.

I love you Sweetie and I'm so glad to have you home for a while again.

2011-10-13T05:28:00.000-07:00

Another catching up.

As some of you already know, I completed radiation treatments on my lumbar spine on October 10th. I also met with my medical oncologist that same day to discuss further treatment options.

What everyone has agreed on (medical, radiological and our own assessment), is that we should continue with at least one course of systemic chemotherapy as a cancerous cell mop up. At the same time, a full set of scans will be done to create a new baseline for disease.

Since I tolerated oral temodar well over the winter and it is effective in crossing the blood/brain barrier, that is what we decided on. I will take three weeks off to rest, recover, and give my immune system a chance to bounce back a bit. It is a 28 day cycle with five days of pills followed by recovery. If you remember, it was on day seven that I got that craving for a cheeseburger and fries that let me know I was on the road back.

At that point we may do another course of temodar - it just depends on what the scans show. What will definitely happen is a monthly visit with my medical oncologist to determine each next step.

Rehab has been going very well in spite of pulling some muscles in my upper body. I switched PT and OT times so that I would have the more strenous work in the mornings before breakfast and the fine motor skill work after lunch when I am more tired.

As of now, insurance will boot me out on October 21st. That has to do entirely with legal limits per year. I am checking into staying on as a self-pay but it is prohibitively expensive and does not include therapy. Our best bet for now is continuing to look like in home care from one of the good close by facilities in Mora.

I'm sure that more will be revealed soon. What will be held in reserve is a four cycle course treatment of ipilimumab (now named Yervoy by the FDA). This is the melanoma miracle drug that was finally approved by the FDA last spring.

Why wait on it? Nothing will prohibit ipi following other treatments since it works on the immune system. Plus, it is unbelieveably expenzive - $160,000 for the four courses of treatment.

2011-10-09T06:11:00.000-07:00

Scorched Butt Syndrome

That, my friends, is what I have determined I have.

Like with the radiation treatments mapped to my upper thoracic/lower cervical spine back in August, beams of radiation have been piercing the flesh of my rearend deeply in order to destroy the cells in the three lumbar spinal fluid lesions that were mapped and targeted.

Of course healthy cells are being destroyed along with lesions so it's like sitting on the worst sunburn of your life - one that starts from deep inside and travels outward. Along with that comes the intense sciatic nerve pain that sent me screaming to the ER at St Vincent's. Most recently I've added right arm pain ... most likely from too much PT on Friday.

Now that I have the staff here better trained, I find myself watching the clock, waiting for the next dose of IR morphine. A sweet tech brought me a freshly made cup of good coffee this morning.

I know it sounds silly but I love those old thick, white, china mugs that used to be used at cafes and diners everywhere. They feel good in my hands wwhile I wait for the sun to come up and for the breakfast I selected from a menu. All symbols of some kind of normalcy.

I am still deeply haunted by the events of the last few months - just as Mike is. At least we have the benefit of direct access to a staff of excellent therapists via UNM with both cancer and PTSD experience to fall back on. The UNM Cancer Center is certainly wise in making sure that kind of service is available to us via one-on-one, phone or email.

2011-10-08T09:26:00.000-07:00

Doing my best to continue.

As Mike knows, I spent over an hour yesterday with the medical director for this place. Mike finally had internet service and called just as I was trying to get my lunch and the doc surprised me with a visit.

I'm pretty sure that the doctor (Medical Director for this facility), only expected a`'Hi. How are you.' kind of meeting. Instead, he got to hear exactly how I was after the previous night's lack of pain management support. Plus, he had what I'm sure he knew to be a very angry spouse on the phone. And...he's 75 years old.

As soon as he heard what had happened with pain medication after the promises I had been given, he bounced his 75 year old self up from my wheelchair, went into the hallway and physically brought the night charge nurse into the room.

She protested that she had given me the breakthrough meds when they were due. I pulled out my log and medical orders copy and showed exactly when meds had been given and explained to her what the written orders meant with'two hours on demand.
The doc backed me up 100%, correcting her in front of the nursing staff. I had very good service the balance of the day, other than not really getting to talk with Mike and having a lunch that was more than an hour cold. The good chicken fried steak, mashed potatoes and gravy plus apple pie for dinner helped make up for that though it still didn't give me phone time with Mike.

That was all good until last night at 7:20 when I was due for morphine elixer after winding up my 9th treatment and dinner. A different nurse apparently needed to be educated when she insisted that she had given me 'my pill' at 5:20 and I couldn't have more for twelve hours and I could talk to her about it in the morning when she came back on shift.

Well...I became so angry, so loud and so mean that I scared my roommate and probably everyone else who could hear me yelling. The poor night nurse was brand new last night and just trying to get up to speed. I told him I didn't care when 'the pill' (MScontin) had been given, I was talking about breakthrough meds.

He blanched when I asked him if he really wanted me to call the doc at home to wake him up on his private phone line which I had been given for just that purpose should I have any trouble getting meds on time.

So Mike, I'm sorry that you didn't get to rake anyone over the coals yet but I'm sure there will be another time come available before I leave here.

Breakfast should be coming up soon along with morning meds etc. I haven't been able to complain about the food which has been hot, good, and served on heavy old diner service ware insted of cheap plastic.

Hopefully soon I'll start seeing a break in pain levels like I did after they moved me to UNM and before that first radiation mapping session took me down with all of the sciatic nerve pain wiping me out.

I feel a very small glimpse of relief and according to the radiology team, Im' pretty amazing at what I have been able to handle. I have no frame of reference other than the earlier treatment so how can I know? I just want this to stop at least for a while and give me some relief.

2011-10-07T07:07:00.000-07:00

Another morning rises in fits and starts.

Yesterday evening started with small promise when the dietitian offered to make my roommate and I mashed banana and peanut butter sandwiches with ice cream on the side. Not for everyone but a sweet home comfort treat for us.

That was before I knew I was starting another 5.5 hour wait for additional pain medication plus xanax in an effort to educate the night nurse on how to read medical orders and that I am a cancer patient dealing with relentless pain, not a drug addict.

By the time I got some relief I was shaking, crying and sweating from the beginnings of withdrawal. These weren't helped at all by the ignorant comments I heard from the nurse in the hall.

Today will be spent with my various social workers to try to stop this before I call an ambulance again.

I am pre-emptively posting a large shhet on my lap table showing my med distribution history, when I ask for meds, and when I actually receive them.

If this place is the only choice I am to be given, I will sqeek and scream as loudly as I can.

2011-10-06T16:22:00.000-07:00

The infinite wisdom of insurance companies.

On Tuesday, my medical team came into tell me that United Health Care had decided to pull me from UNM and place me back in a residential skilled nursing facility. Yes, I cratered and drug a few people down with me.

I arrived last night to a smaller but much cleaner facility than Mike and I found at Casa Real. So far, we are moving forward in a truce and I've only cried a little. Up until this evening they have been totally on top of pain management but so far tonight, two hours late on morphine and I am near tears as I type. I also need xanax.

I'm too tired and worn from going to radiation treatment via a wheelchair and van to make another transfer and repeat chasing nurses down halls, but they will hear about it tomorrow.

Enough. Enough for tonight. I'm tired. I'm too tired in this moment to find something to be happy about. I need drugs to calm the pain and I need rest. And the breaks just keep on coming.

2011-10-04T05:44:00.000-07:00

PTSD

I realized that what woke me at about 4:00 AM this morning was nerve pain in my left hip and leg rather than gut wrenching emotional PTSD. Odd to be grateful for pain over terrors.

The herd in the arroyo. Even if I can only sit in my chair above them on the deck, it will be enough for now.

My always sweet tech/aide eagerly brought me a second cup of fresh coffee early this morning even though she was missing her own daughter's birthday today. I think that the reason for the manageable PTSD this morning is having both my nephew and our gift of a hired local person to help us out has taken a huge amount of that burden from all of us.

"Come on Dulce; don't be such a slow poke!"

With Mike still unable to set any kind of firm date to get home, it can seem impossible to keep me feeling safe. Impossible but beginning to feel doable. My nephew, our good friend/neighbor, and our hired local friend have all banded together to make things safe at home. A first start with amazing results was to locate a good spot in the yurt for a regular hospital bed. The entire medical team feels this is the best and safest option.

I can't wait to run my hands all over Dewey to give him sweet skritches. I'm sure he is much bigger now.

I would like to feel completely generous with my feelings about this but I must be selfish after I failed so badly at keeping everyone, myself included, feeling safe.Now I am beginning to see the clues and processes that I need to make all of this work well.

You might say that Dulce is a significant lump in the road.

First, communication that is as clear as possible must be maintained at all times. Everyone close to me has given a significant part of themselves and their lives to keep this happening and my gratitude is unfailing. Where we go next, I can't know. All we can do is to keep moving forward, one cautious step at a time.

I will pray that these mornings of respite not only continue but become easier to achieve as time passes. I sit here in my bed, typing this entry and imagining how wonderful it will be to be home again, sitting on the couch with the two puppy girls faces smooshed up into my lap. Life will begin to feel good again.

Having a morning so much less dominated by fear has allowed me to visit and hold onto beloved images.

2011-10-03T03:37:00.000-07:00

In spite of how it might seem at times, life does continue, finding its own level and pace once again.

The last few days have been brutally difficult. The hospital floor is surprisingly quiet, such a far cry different from Casa Real where 4:00 AM meant crashing and yelling in the hallways as aides attempted to move dementia patients back to the wings they belonged in.

There were screams from patients asking for help, that they were being killed. Others who threatened to do the killing, or cause harm at the least. I did my best to stay low and in the shadows.

For me, 4:00 AM meant trying to find an aide who would not only answer my call light; but would also assist me to the restroom commode before it was too late.

There is no way to describe the humliation of being a 58 year old woman,nearly paralyzed from the waist down, who has to ask one twenty-something young man to hold her suspended in mid-air while a second one wipes her behind. To say 'humilitiating' could never come close to the actual experience.

And all of it done while trying to manage ever-escalating nerve pain that I may or may not get help with depending on what nurse was on duty and how invested they were in convincing me of the evils of opiate drug addiction for a cancer patient's agonizing pain management.

Now, a truly caring nurse or tech slips into my room to gently wake me up with a quiet word or rub on my shoulder. Often, my pain and anxiety levels are starting to climb out of control already. I eagerly take the morphine and xanax in an effort to keep my PTSD reactions under control. If we can all time things just right, I get that first sip of coffee just in time to hold gut clenching fear at bay.

One blessing at Casa Real was an Occupational therapist who was as addicted to sunrise as I am. She would help me to dress and roll me down to the therapy room in my chair where we would share a fresh pot of coffee and visit with her 'therapy dog in training' while we waited to start the day.

These days it often feels like a race between heart, soul and practical life as we all do our best to manage in circumstances that sometime feel insurmountable. Just never forget that I love you all.

2011-10-02T03:50:00.000-07:00

The loss of my mornings.

I still wake up well before dawn, usually around 4:00 AM. It has always been a glorious, quiet and private time with the sun rising to the east in the heart of stunning southwestern colors. Sometimes soft pastels that set gentle on my soul, and sometimes in a riot of intensities that lead me to grab my coffee mug, coerce the lazy dogs, and walk out to share the morning with the horses...something I learned from Mike.

As summer progressed, I had my roses and herbs, both on the deck and the slope gardens. It could be hard to divide myself between the quiet of sunrise and getting my hands buried in rich, moist soil.

That has changed now and at least for the moment, I feel as though my blessed mornings have somehow been stolen from me. I would like to go into this further today but I missed my small window for writing in peace this morning and I am only trying to keep my pulse and blood pressure at reasonable levels.

Perhaps tomorrow will be more gentle on my spirit.

2011-10-01T06:01:00.000-07:00

Where the darkness began.

After I completed the first ten rounds of High Dose, Focused Beam radiation that treated the cervical/thoracic lesion in my spinal fluid in August, Mike and I knew we were in for a fight.

In spite of not being able to use my left leg and extreme weakness in my left arm and right leg, our insurance company felt I didn't need rehab at all. Even though it took several people just to move me from one table to the next or to even hold me up on the bedside commode. No thought at that point of managing a walker or even a wheelchair.

My entire neurological/oncology team fought for a high end residential rehab facility as did Mike and our UNM Case Manager. What we finally got was Casa Real Care Center in Santa Fe which is called a 'skilled nursing facility' but is in actuality, a nursing home with a population consisting primarily of elderly people with dementia. If you would like to read about some of their recentcompliance issues and fines, follow this link:
http://www.santafenewmexican.com/LocalNews/Nursing-home--back-in-compliance-

When Mike had to finally drive away and leave me there that first night, I have never felt so terrifyingly alone and lost. Already the cries of dementia patients were echoing up and down the dark hallways.

I can't even imagine what it was like for him to make that drive back to Star's Rest without me after seeing what a hell hole was being provided for me. And at that point, we were seeing only the mere surface of the darkness.

Enough for today as I can feel my pulse beginning rise.

2011-09-30T04:00:00.000-07:00

The Price of Being Broken

I've been through so much since August 2008. People have admired my courage, stubbornness and comittment to survival. After an emergency craniotomy, gamma knife surgery, six months of high dose chemotherapy followed by ten courses of focused beam radiation, I truly believed there was nothing that could take me down. That I could not only be the source of my own strength; but I could also support my friends and family on this journey.

My posts have been practically non-existant since I went into residential rehab in August to recover the use of my legs and left hand. There has been a reason for that and it hasn't been good.

What no one but immediate friends and family know as yet is that I am no longer in rehab; I'm back at UNM in Albuquerque via St Vincent's Hospital in Santa Fe. I fled Casa Real for literally my life on September 19th when I asked a friend to call me an ambulance to get me out of there.

As of yesterday, I am needing to acknowledge that I have full blown PTSD resulting from the things that happened at Casa Real. The difference is that as soon as I went into distress here, the psychologist from the Cancer Center was brought over to help me. She acknowledged me, comforted me, and made the medications necessary to keep me inside my own skin immediately available. I know that she will be here for me again next week too.

You see, just thinking about it enough to write it down sends my pulse and blood pressure up to dangerous and life threatening levels. To get this far just now, I had to take both xanax and morphine. I have to tell the story though.

That place broke me and now I have to nibble away at it in bits and pieces so that the light of day and the love of friends ad family can help me to find healing again. I know that people hesitate to 'bother' me but this time you need to. According to the psych, in order to heal, I must talk. So this is me asking that if you don't see a post or hear from me, bug me with an email or two. You can always reach me at griton.corazon@gmail.com .

Now I need to drink my coffee and rest again. I'll do my best to write every day, even if it is just a sentence.

2011-09-10T08:00:00.000-07:00

Three and a half minutes.

That's how long I was able to stand with Mr Walkies yesterday. The goal is five minutes, unassisted, and able to let go of Mr Walkies instead of gripping him with both hands for dear life. That five minutes will allow me to have the indepence of going to the bathroom alone.

I said to Mike the other evening, "I don't remember learning to walk being this hard when I was a toddler." He responded that I didn't have as far to fall back then either.

For a long time there, I thought I was doing pretty good on the walker until I learned how damaging using just my upper body strength is. Now, my sessions go something like this:

I get myself all situated in the wheelchair, Mr Walkies sitting securely in front of me. My wide web safety belt around my waist with a therapist behind me, hanging on to it.

Previously, I would power lift my body up in the air with my arms alone and keep myself up on Mr Walkies with upper body strength. Now, I have the following dialogue...

"Okay feet, you're the foundation here so wake up and get ready!"

"Legs, you had way too much time off and you have to do your part too."

"All together now, everybody UP!"

And with that, I manage to stand up in Mr Walkies by primarily using my legs instead of my arms. As we start walking, I can measure how tired I'm becoming by how much of my weight is shifting to my arms instead of my legs.When I reach the point where I start to wobble, the therapist is there to help me sit back into my wheelchair in a controlled way instead of a crash.

That, my friends, is pretty much what standing and walking look like for me these days. When you consider that when I arrived here five weeks ago, I was all but helpless and unable to use my left leg at all, it really doesn't sound so bad.

2011-09-06T10:31:00.000-07:00

Hello friends ~

I'm sorry that posts have been so few and far between. This has been the roughest part of this journey so far, for Mike and me both.

Mike and UNM fought for a high end residential rehab facility for me but what insurance would pay for, is essentially a nursing home with a bad reputation. That first night here was the worst yet for me and I'm sure it was just as hard for Mike to leave me here.

My time is spent fighting to get my pain medication on time, reading, resting, and working my way through rehab. One thing that we are grateful for is that the therapy staff is skilled and dedicated.

On an uplifting note, I've gone from not being able to use my legs at all, the left more than the right, to walking 50 steps with the walker today. I have to be able to walk 200 steps in order to be released so I am 25% of the way home.

Mike is back working in ND and my nephew is here from TX taking care of the animals so that lets us rest easy for them.

2011-08-10T16:14:00.000-07:00

Greetings, everyone (Anne here),

Carmon has asked me to post this message for her to let you all know that she is doing well but does not have access to the internet at this time. As you know from previous posts, she has been in the hospital since early July with one thoracic and two lumbar spinal fluid lesions. For much of that time she was at UNM Medical Center, where she received 10 High-Dose Focused-Radiation treatments.

She says: "There is every reason to believe the Melanoma Whack-a-Mole machine will continue to do its job of bashing in Mel's ugly head! I am in residential recovery now to try to restore my strength and walk on my own again. In fact, today I walked using the parallel bars!!

"As soon as I get home, I will start sending out BHD refunds again. Customers can really help me out by sending the following if you have *NOT* yet received a refund via check or Paypal. Note that I do not receive the same information from Paypal that customers do, so this is important!
> Date that the order was placed with Paypal
> Email address to which Paypal sent the receipt
These two pieces of information will help me to quickly and easily find your order.

"My thanks go to everyone for your prayers, your words of support, and especially, for your patience! I'll be blogging about the entire experience as soon as I have internet access again."

Carmon

2011-07-30T05:44:00.000-07:00

Small but HUGE accomplishments!

Besides standing up twice on Friday and taking two steps of Half Pass (as Marjorie pointed out!), I topped the night by being able to turn onto both my left and right sides during the night without assistance! It felt incredible to feel and use my body that way again.

Again, that may seem like nothing but it is HUGE to have my body responding to my requests and to see that the only thing holding me back now on the road to walking again is building muscle strength and getting rid of all of these IVs that act as pain management lifelines.. Just like watching my brain build new pathways after trauma, it is fascinating and exciting to see my body begin to recover itslf.

It was fun on Friday to have the physical therapist play 'weebles wobble' with me by having me sit at the edge on the bed while she tipped my torso in different dirrectons. The goal was for me to use core balance and not hands to recover so that I didn't fall over. When she expressed excitement over how well I did, I explained about years of dressage and riding from a strong centered core. I guess someone needs to let Brillo know what an important healing partner he will be this fall. Maybe we can take up where we left off last September!

My amazing, beautiful and beyond sweet horse!

2011-07-23T15:07:00.000-07:00

The Melanoma Whack-A-Mole Machine strikes again!

My love and thanks to Anne for getting a post up for us...it's been a profoundly rough two weeks so far with at least two more to go before we have some real results. Please bear with me ~ this ain't easy!

Three craniosacral lesions that grew up from that nasty brain tumo last year. The thorasic one is what has caused all of that unbearable nerve pain. The two lumbar ones came on very suddenly with loss of function in my legs, the left almost completely.

I'm back in UNM Cancer Center receiving my usual stellar care. The 20th was spent mapping out these suckers and starting very focused beam radiation. Since I was such an amazing responder to chemo, unusual for melanoma, they hope I wll respond just as well to radiation.

I've had three treatments of a total of ten and already I can lift my left foot today which I couldn't do yesterday. We're all excited about that! They don't do radiation on the wwekends so I have a break till Monday when we start again.

Apparently my response has been so atypical and weird, they have asked me if I would be interested in being a case study...what the heck! Let's hear it for science! I just want to beat the brains out of the damn melanoma every time it sticks its rotten head up and then unplug the Whack-A-Mole machine for good.

Pain is still a major problem but they have me on self-administered morphine now and it's making all of the difference in the world. I will be here for at least two weeks and I'll try to keep things updated as I can, depending on pain levels and fatigue from the radiation.

Mike is at home taking wonderful care of all of the critters and hopefully himself too. Seeing him walk in last night to visit and bring me a new netbook was heaven. I love you more than I can say Sweetie! Wish so much you we could be curled up in a great big, person, puppy, horsie and goatie puddle!

2011-07-22T08:45:00.000-07:00

Greetings, Folks,

Carmon is without her computer at the moment, and she asked me to add a brief post to let you all know what her situation is and to assure you that she is fine.

This past Monday (July 18) Carmon and Mike met with her medical oncologist at UNM to discuss her scans from the previous Monday and also her current symptoms (see her earlier posts). As she wrote previously, last week during Carmon's brief hospital stay in Las Vegas, NM, the doctors discovered two lesions in her lower spinal canal. This Monday, she and the UNM doctors agreed that she should be admitted to UNM Hospital for additional testing and then development of a treatment plan. This week's tests revealed a third lesion, in her cervical spinal canal. These spinal lesions are considered treatable, and indeed the team began treatment on Wednesday: a course of targeted radiation on all three lesions. I spoke with Carmon last night, and she sounded great! She is her usual positive, indomitable self, and she wants you all to know that she is OK and is receiving superb care in every respect. As soon as she has her computer, she will resume posting and will fill in the details. Until then, rest assured that she is in good hands and is doing well.

-Anne T.

2011-07-16T10:06:00.000-07:00

Standing between shadows and light.

Well I won't lie, this has been a rough week. I've been whining for a while now about severe nerve pain so when I began losing strength in my legs over the weekend, I assumed it was progression of what I have come to learn is known as Paclitaxel Induced Neuropathy. Ms Stubborn to the end, still insisting 'I'm fine!' as I staggered around trying to feed horses and take care of chores.

By Monday morning though when I was feeding the horses before Anne came to take me to UNM for my three month follow-up full body CT scan and brain MRI. I was so unstable when we got there that I opted for a wheel chair for the day.

I was hoping that I would see improvement on Tuesday morning but I was actually getting worse. I made the unusually adult decision of calling both my medical oncologist at UNM, Dr Shaheen, and my local Primary Care Physician, Dr Green. When they heard how quickly the loss of sensation and function was advancing, they both told me I should go to my local ER.

I imagine for a lot of folks that would have been an easy decision. For me, I asked Dr Green for a list of symptoms that if I experienced them, I should get right to the ER. When he finished, I realized I had passed all of them several days earlier. I said to him, 'You know that almost anyone besides me would have been at the ER two days ago.' He responded, 'Yes, that's one of the things I appreciate about you but you have to stop trying to be the hero.'

That was a lot for me to take in and I sat here on the couch for a while and did it. Once again I made the hugely adult decision and called Anne and asked her to take me to the ER. It was such a good thing I did because things were just getting worse. Once the ER doc assessed me, he managed to get Dr Shaheen on the phone and after consulting with the UNM radiologist who read the scans taken on Monday, they decided to focus on an MRI of my lower spine and that is when they spotted those two cranio sacral lesions that have somehow hidden from all of those PET/CT scans.

They admitted me in order to immediately start administering IV steroids to reduce the inflammation causing me progressive loss of function. It was 1:30 AM by the time they got me settled into a room and medicated. I lay there in the dark with tears running back from my eyes. I have been in so much pain and now suddenly and definitively losing my mobility was crushing. I felt so tired - I could find a thousand reason to keep fighting for others, for Mike, for my God Daughter and her family, for our friends and the animals who are part of our lives, and for life itself here on this mountain. But for the first time, I couldn't find reasons for myself.

I'm not afraid of death, never have been, The idea of letting myself slip into that place of peace and bliss was very attractive yet along with that thought was a deep aching sadness and feeling that I would be betraying everyone who loves me. I had been very heavily medicated for pain so I didn't lie there long before I fell asleep.

When I woke up the next morning expecting to be washed with that same sense of loss and sadness, I had to wonder just what manner of being I have become because those feelings were all gone. It is as though there is no room left in me to live in the negative anymore. The only space I seem capable of living in now is one of optimism, happiness and hope.

I don't know when exactly this transformation occurred in me but I suspect it started the day I was diagnosed and reached some sort of soul merging during those timeless days that the horses carried me and kept spirit connected to body. Whatever has led me here, I wish that I could bottle and share it with everyone whose heart is heavy.

Fighting this disease is so much easier when you live in a place of joy. From joy we can be proactive and look forward to gathering information and making decisions about treatment instead of feeling helpless. Like with AIDS, we have to look at melanoma as something that can't be cured but can be managed. Each time it resurfaces, we will just find a new way of dealing with it. Many others have lived twenty and more years this way.

I'm very tired now and this is more than enough to write for today so I am signing off to rest. We'll have more information to share over the next week.

2011-07-15T19:04:00.000-07:00

Another ER extravangaza.

I'm not going into the details because I was just released from the hospital this afternoon. I'm exhausted and my left hand isn't functioning too well on the keyboard. I would put this off till tomorrow but I haven't posted in a while and people are getting in touch asking how I am.

Over the weekend I began losing strength and sensation in my legs. It progressed so fast that both of my doctors felt I should go to the ER. I went on Tuesday evening and things were steadily going down hill. An MRI of my lower spine showed two cerebra-spinal lesions in my lower spine and the pressure caused by them has been causing the problems. I was immediately admitted so that they could start me on IV steroids to start reducing the swelling robbing me of lower body function.

They are undoubtedly cells that migrated from last year's brain tumor. I don't have any details yet other than that they should be very treatable. Right now we are choosing to look at this as just another step in mopping up after the big, bad brain bleed.

I had improved enough today to get around with a walker so they let me come home. Mike will be back home early Sunday and we'll see my medical oncologist on Monday and radiology oncologist on Thursday. After that I'll have more concrete information and we can begin a new treatment plan.

Hopefully tomorrow I won't be so tired and my hand will be working better and I can fill in the details. Just another twist in the road, my friends!

2011-07-02T16:13:00.001-07:00

I'm sorry...

Another one of my new roses, Distant Drums.

To have left everyone hanging. For the last couple of weeks I've been dealing with nerve pain that has literally taken me to the floor. It's been really, really bad. I'm beginning to get a small grip on it but this will still be short.

The fires around us are still growing and the one near Los Alamos is now the biggest wild fire in the history of New Mexico. It's been all over the national news so I'm sure anyone who has been paying attention knows a good bit about it already. The good news here today is that it is raining right this very minute. It isn't heavy rain and probably won't be more than showers but at least it has brought moisture to the air and cleared out the smoke and ash.

Prickly pear cactus blooms.

Here is another bit of news. Yesterday I heard from my disability attorney that the Social Security Administration has approved back dating my disability back to November 2008 when I first was treated for surgically caused neuropathy causing me to have to close Black Horse Design. More than anything else, that qualifies me for Medicaid now instead of a year from now.

I was waiting for a court date and dreading the whole idea of that. I'm not sure who changed their mind after turning me down twice and I'm not going to argue with them over the change of heart!

Check out my singing goldfish!

2011-06-21T05:50:00.000-07:00

A fire break.

Smoke beginning to move in over clear skies last Saturday afternoon.

I'm working on a draft about the changes brought about by this last year but feel the need to talk about the new fire just west of us right now. It has been named the Pacheco Fire because it started in the Pacheco Canyon in the Santa Fe National Forest. These fires impact us on such a deep and personal level that when we have a season like this, they tend to consume our thoughts and emotions.

Ash began falling like snow.

This fire was spotted at 3:40 last Saturday and the winds brought the smoke and ash over us at about 5:00. As soon as I smelled the smoke and saw ash falling like snow, it triggered a PTSD California wildfire reaction in me. I called my friend, Anne, whose house was burned to the ground in May to see how she and her husband were doing. My PTSD goes back to the 1990s but theirs is only months old and I was concerned for them. As it turned out, it was a good move and Anne and I were able to calm each other down and go over plans for evacuation should we need to. We agreed to be each other's support person since Mike is back up in North Dakota working again.

The sun trying hard to shine through thick clouds of smoke.

The fire is about 40 miles west of us and not likely to move this way but as of this morning it is over 3,800 acres and 0% contained. The majority of these fires are started by thoughtless people doing stupid things in areas where there has been no rainfall, not enough snow during the winter, and high winds on top of single digit humidity. It baffles Mike and me both when we hear young people complaining that they were given a $25 fine because highway patrol caught them throwing a cigarette out of a moving car window. To me, there is no punishment severe enough for people responsible for fires due to such total stupidity.

On Sunday I needed to get a load of water which also meant going into town to put fuel in the water truck and to pick up the mail at the post office. As I came over the ridge that drops down into the Mora Valley, I was shocked by the heavy haze of smoke that had settled into the valley. Our normally friendly local folks were quiet and watchful. We all know that our entire lives are at the mercy of careless campers, tourists who don't understand the explosive danger, and even longtime residents who just don't seem to get it. So we watch and we make plans and we pray that we are spared again for another year.

And on a more fun note!

Brillo the Caped Crusader! Horse and deer flies just eat up his thin thoroughbred skin so Brillo gets the total fly treatment. The mustang boys have such thick hides they are far less bothered.

Coli and Dulce...how adorable are these girls?

'Dulce, let me eat your face!'

Dewey is a pretty precious little guy. I call him our dog with horns!

2011-06-18T18:11:00.000-07:00

It's been quite a year.

This time last year I was in surgery getting my skull opened up and a large hematoma from a bleeding melanoma metastasis scooped out of my brain. The first thing that I clearly remember from that experience was waking up in the ICU and seeing Mike walk through the door. For me, it was still the 16th, the day I was airlifted down to UNM's Neurosurgical ICU after I called friends for help, experiencing the proverbial 'worst headache of my life'.As Mike came through the door, I wondered how it was that he had gotten from North Dakota to Albuquerque in the same day.

There is so much of the conscious world from those three days that is lost to me. There are flashes of memory, bits and pieces. Apparently I was present enough to have appeared conscious at times but I don't remember it for the most part. I know I had several brain and full body scans that I have no memory of. I must have been talking though because according to hospital records, I told them I was extremely allergic to IV contrast, which I'm not. Why would they believe someone whose brain was bleeding anyway?

I've thought about going back to those early blog posts and reading them now that a year has passed. I won't though because I think it might be too disturbing for me. I remember in those first days when I was trying to get some sense of control back, that it seemed very important to put all of the pieces together and figure out just what had happened to my physical self every minute of those three days. Now I understand that what was important was what happened in the space in between, when I was 'carried between shadows and light'.

I know that I intended to write about that three day yet timeless experience and I have a feeling that I never did. I know that I started numerous drafts but I could never get it quite right. Now I understand that was because I was trying too hard to explain something that really can't be explained in words. The last thing I clearly remember was being put on the helicopter, then waking up three days later in a private room with IV needles in every possible vein.

What happened in between was that I drifted away...somewhere in between life and death and yet I felt completely loved, held up, and safe. I knew I wasn't dying, but also that it could go either way and yet I was never afraid. I was content to be in that calm space. And then somewhere in the shadows I saw Griton's beautiful eyes shining, surrounded by white lashes in his loving face. Griton, the ground of our healing circle, whose spirit runs so deep into this mountain that his eyes pulled me back like a magnet and I was held in his gaze.

Corazon, our healer, was there in the circle and I felt that he would give me whatever it was that I needed to hold spirit to body. I was safe, held, loved and healed by our herd. Each time I began to drift away again, there was Brillo to carry me back. With Griton it was his eyes, and Corazon's immense healing presence, and with Brillo I would feel myself on his back, his mane like fine silk in my fingers as he would carry me back to the circle. The other boys, Llego, Valeroso and Mio were there as well, providing support with their presence.

And there, finally, is the story of what I experienced in those days when I was not truly present in my body. Other people that I've told this to have asked if the herd treated me any different after that and the answer is yes. All of last summer and through the winter they understood that one of their members was weak and injured and they were very careful with me. I feel closer to them than ever before.

It was a timeless place and experience and one that I can touch back into just by remembering. I have been forever changed by this last year, in every possible way. We are on fire watch right now, with a new fire in the forest just to the west of us. There are things I find I want to say about what is different in me and the next few days as I watch the news may be the time for it.

2011-06-16T06:12:00.000-07:00

WHERE does the time go?

I thought I put a post up just a day or two ago and it's been more than a week!

I've been having a terrible time with intense nerve pain in my left arm and upper back. To make it at all bearable, I've really doubled up on the oxy and so I'm more out of it than usual. I have to say that typing really hurts too so this will be short and I'll just post some recent photos.

Because I really expected to be feeling just about like my old self by now, I've done a lot of reading on recovery from chemo. It turns out that it takes up to two years for your body to rebuild itself, especially your nervous system, from the types of chemo that I had. As long as my next scans on July 11th show that I'm still in remission, I won't complain about it though! Mostly it just means that I'm not doing things yet that I had dreamed about all winter, like riding Beautiful Brillo.

First, here is my darling Dulce! Other than her continuing need to make large things into very small things, and a desire to bark at the moon, she is just about perfect. How could anyone resist that face?

Getting in some nap time with her buddy, Duffy. I don't know why but that position always cracks me up.

My first rose of the year to bloom, Henry Kelsey, a Canadian bred climber with a delicious fragrance.

Number two to bloom, J P Connell, another one with the sweetest fragrance ever.

Little crippled Valeroso is clearly still doing great! It's hard for me to believe but Valeroso, Corazon and Griton are all eleven this year. As I said, where does the time go?

I've been trying to get more photos of The Wild Boys but this arm thing has really gotten me down. I think they all look better this spring than they ever have. Sleek, strong and healthy even after one of the coldest winters here on record. Even Brillo, the rescue thoroughbred, came through winter beautifully.

CottonLady asked about smoke from the fires in Arizona and yes, it has been really bad here. Now we are also surrounded by huge fires here in New Mexico. We are all praying for the monsoon rains to come before the entire state is on fire. It scares me because I know that if we have one near us, I am at a huge disadvantage in strength and ability right now to get everyone out safely.

2011-06-07T10:26:00.000-07:00

My hard drive crashed!

For the last year my little pink netbook computer has faithfully served me by coming along to oncology appointments so that I could immediately update friends and family of my health status. I used it with a free kindle PC app to read my current book during those five hour chemo infusions.

Then Saturday night, right in the middle of writing for this blog, it crashed and burned. I couldn't even start it in Safe Mode. When I ran a diagnostic on it, 38% of the drive was destroyed! It took me a while to get my toshiba graphics laptop back up and running after it sat idle for a year but here I am. It you are someone I regularly exchange emails with, please send me a short note so that I can get your email back in my contacts!

Now here is what I intended to post over the weekend:

Last year my slope runoff gardens were completely abandoned as I managed serious health issues and ongoing medical treatments. This year I couldn't stand it and even started working on them before I finished chemotherapy.

I lost quite a few of my rose bushes to those extended periods of -20s winter weather we had and I replaced them all with Canadian bred roses, good for down to zone 3! I also planted them in the ground and I'm creating rock walls around them to act as heat sinks during cold weather. Here are some photos of my efforts!

This is the primary central garden that has a water feature with water plants and fish.

The same area showing all of the beautiful plants starting to take off and bloom.

The upper part of the water feature with moss roses planted around it.

Coli enjoying one of the new planting areas I made this year.

The view from the yurt door. Eventually there will be paths and a nice bench up there.

Five of our six beautiful horses trying to convince us it's breakfast time!

One of my beautiful new columbines.

2011-05-29T16:48:00.000-07:00

Our newest family member!

Those who follow this blog will remember that we lost one of our goats, Huey, last winter in what we think was an accident with the horses during the night. Poor Daisy struggled being the only goat and was very lonely. Being the only goat forced her to connect more with us though which was a sad benefit since she had always been flighty and unfriendly.

Adorable little Dewey who is so much like his brother.

I had an opportunity to get Huey's full brother who was born in January and I took it. So please help us welcome Dewey into the family! When we brought him up and Daisy saw him, she did the goaty dance of joy with leaps, bounds and head tosses. It was very clear how much she has missed having another goat for company. Amazingly, after torturing Huey, she is nothing but kindness to Dewey. Daisy watches out for him and the two of them lie curled against each other when they settle down to chew their cud or nap.

Daisy is taking her 'Auntie' duties very seriously!

Dewey has Huey's same curiosity and outgoing personality and he is also the sweetest kid I have ever known. He loves people and being touched by them. The other morning I was sitting on a stump, keeping an eye on a horse that wasn't looking quite right, and Daisy came up behind me and pressed the flat part of her head against my back and stood there in total comfort. Dewey came up and leaned against my legs like a dog begging for pets. I sat there rubbing and scratching his back and he all but went to sleep. It was such a peaceful space...horses happily eating and surrounded by sweet goats.

Daisy has become a beautiful and sweet goat as an adult who genuinely likes people now. Both goats are wearing ID collars and have bells on in hopes it will help the horses to keep track of them in the dark.

2011-05-27T06:58:00.001-07:00

Following doctor's orders.

I know that posts have been scarce for a while now, even when I no longer have the excuse of chemotherapy to give you. A year ago I wasn't posting because I unknowingly was growing a few brain tumors. I had no idea that my inability to gather or focus my thoughts to write was a symptom of the brain trauma that was happening in there. There were many things in my life that ground to a halt and writing was a big one.

Now, almost a year after the tumor that began bleeding into my brain and started this whole adventure, I'm not writing because I'm following doctor's orders to 'Go out and enjoy life!' After spending the better part of the last year having or recovering from some sort of awful cancer treatment, that means being outdoors and taking absolute joy in all of the things I couldn't do for so long!

On calm mornings, instead of sitting at my computer and writing, I'm out on the deck drinking coffee, enjoying my fish and watching the sun come up. I love sticking my hands in the dirt without gloves on because I am no longer worried about infections taking off due to a chemo compromised immune system. I admire my beautiful plants that are coming up everywhere and my lovely fish that managed to survive my erratic care all winter.

The dogs are doing great and Dulce finally finished shedding out her winter coat so that the rugs and furniture are staying clean for a while. She and Coli and Duffy are still having the best time ever with each other, wrestling, running and playing. Happy, happy dogs!

On Wednesday, the horses got their feet trimmed and I can tell that riding Brillo is on the horizon. I'm thinking that might happen next week if the weather holds out. I can't manage the wind right now as it really kicks up this nerve pain, and the entire state is praying for rain. I will put off getting on my horse for the first time in nearly a year if it means we get some rain!

So that's pretty much what's up here...I'm loving life and feeling blessed. I am so aware of what a gift this reprieve from cancer is and that it could disappear at any time. That means embracing every single moment with open arms!

2011-05-14T12:20:00.000-07:00

I figured it out.

I really expected that I would be gaining weight back fast once I completed chemo and no longer mostly fasted for ten days each month. To my surprise though, when we went to see the specialist last week, I had lost another three pounds. Then as I was looking in the bathroom mirror I figured it out. Everything I eat is going to hair!

Having eyebrows and eyelashes again is nice but I really could have done without those hairs on my chin this time around. I have to confess that I can hardly keep my hands off of my head because that new hair up there feels just like kitten fur...I'll probably rub it off as fast as it grows in!

Seriously...besides growing hair, I am getting stronger every day. I can walk without stopping every twenty feet to catch my breath again and on Tuesday I helped Mike load, unload and stack nearly fifty 120 pound bales of hay for the first time in almost a year. And it not only didn't kill me, I felt very proud of the accomplishment.

I've been working on the gardens a little bit every day in spite of one freeze last week and a couple of near freezes the last few nights. I've also been working on my big new deck fish pond and water garden. It is basically finished now except for waiting for the plants to grow and mature! I have to say it's even better than I thought it would be!

My new HUGE deck fish pond and water garden! All it needs to be finished is to conceal the feeder hose at the top, finish planting around it, let everything grow and then sit outside with a good cup of coffee and enjoy!

The top level creating the waterfall is planted with blue corkscrew rush, aquatic four leaf clover and floating hearts. The big pool has floating water hyacinths, corkscrew vals, amazon sword plants, onion plants and hornwort. The planter across the back has bog iris, lizard tail and aquatic forget me nots.

My ever so happy goldfish enjoying their new home and huge space to swim in!

The horses are all looking fantastic this spring, near perfect weights and the only winter hair left is on their bellies. When we had that late April snow I did have to blanket Brillo but other than that, he is beautiful, sweet and wonderful. I told my doctor that my goal to start riding is when I'm strong enough to carry my saddle out and lift it up on his back. After helping with hay on Tuesday, I don't think that day is very far away. When he asked me if the neuropathy in my feet would affect my riding, I told him that I can feel my butt and being able to feel my feet is totally unnecessary to riding a horse!

Mike had to head back to North Dakota on Wednesday and we all hated to see him go. Having him home for a month with most of that time knowing I am currently No Evidence of Disease with no need for surgery or any more treatment for now was the most beautiful respite I think we have ever had together. It wasn't that we did anything special...what was special was what we didn't do, worry about my health. It was a peaceful and sweet time with neither of us wondering when the call was going to come and he would have to frantically pack up and hit the road north. I am as grateful for this time with Mike as I am for getting my health back. I feel that the last two and a half years that could have broken many relationships has shown us both just how strong we are together and I am more grateful than is possible to say.

So I'm finding I have things to say here again. I realized Thursday morning when I fed the horses by myself again for the first time since Mike got home in April, that I'm really not even a month away from the last chemo nadir point which means I'm only touching the surface of getting back to who I am. Seeing those layers of drugs slip away and adjusting to being cancer free should be an interesting process.

Photos of the new step gardens tomorrow!

2011-05-07T06:52:00.000-07:00

No more treatment for now!

Thursday Mike and I met with the radiation oncologist and we both really liked him. Dr Schroeder is young, energetic, interactive and very up to date with his knowledge of current research and treatments for melanoma. Best of all, he was on the same page as Mike and I regarding whole brain radiation (WBR) and radiation therapy.

His feeling also was that WBR should be held back as a last resort treatment if I should have recurrance in my brain that cannot be managed with gamma knife surgery. He talked about with the size of the tumor that bled last year, I most certainly had other melanoma cells in my brain. The fact that I have had no recurrance in nearly a year is an excellent sign and to him means that my body has handled them on its own. This hardly ever happens.

On using radiation therapy on the adrenal site as a prophylactic treatment, I was on the fence on it and would have agreed had he thought it was a good idea. But he didn't. He said with no active disease there or anywhere else, there was nothing for him to focus on and since the adrenal gland is located in the middle of a lot of organs including the bowel and spine, it would be too easy to also damage organs that either couldn't be repaired, or repaired with great difficulty and all of it life threatening.

So the decision we all agreed on is that I should enjoy the summer with a break from any treatment! And he will continue to follow my case with consultations after each of my three month scans. I feel very good about that as I was impressed with his level of knowledge on melanoma and that he isn't a doctor who wants to jump into treatments just to be doing something.

So there you have it! My next scans will be on July 11th and we all hope that closing notation of 'No evidence of metastatic disease.' continues to show up on those scan reports too.

2011-04-24T07:16:00.000-07:00

I'm growing eyebrows and eyelashes!

And I've been checking out cute super short haircuts, even though I'm probably three months away from having enough hair to get a hair cut! But still I can plan for it. Amazingly, I feel attractive and girly again for the first time in quite a few years. I think it's partly because my skin feels reborn after six months of chemo. It's incredibly soft and smooth and the dark spots that came out during treatment are fading away. Also, the weight loss makes me feel like I did in my forties before menopause hit. I have dreams many nights where I'm running again like I did in my twenties. Running dreams for me are like flying dreams for other people - glorious and full of freedom.

True to my nature, once I got enough napping in to feel recovered from that last week of pre-surgery and recovery prep, I was feeling good for the first time in almost a year and I did too much. I wound up with a muscle spasm last night in the portion of my back that was damaged again sometime during the whole 'unconscious brain bleed/craniotomy' event. Fortunately Mike had some really good muscle relaxers and that with my oxycodone last night seem to have done the trick.

But how can I help myself? Growing things are calling me! The slope gardens are more beautiful every day and I have seeds sprouting that will soon be ready to plant up there. I ordered heirloom tomato plants that have all arrived and will soon need to be planted. I have rainbow Swiss chard that is in the ground and growing like crazy. My roses that survived a week of -20s temps are budding and there is the deck garden to plan!

My 150 gallon deck pond is all set up and my fancy goldfish are in residence. All that is waiting there is for my bog plants to arrive so that I can plant them. The deck will be wonderful this year with that big fish and water garden to enjoy. Plus a few select fragrant roses and lavender because I found I would miss having some on the deck too much.

It's Spring, Easter, Oestra...whatever you celebrate at this time...life is well worth celebrating. I sit here watching the sun come up over the slope gardens, horses up above the fence watching for breakfast, and I begin to pull the strings of my life back together again. Mike is home with me and it isn't to wait on me as I recover from major surgery. Together we are rediscovering how to live fully instead of in the gaps between treatments.

2011-04-22T10:18:00.000-07:00

Adjusting to life without treatment!

It's been nearly eleven months that I've been undergoing some kind of treatment ranging from brain surgery to Gamma Knife Radiation Surgery and then chemotherapy. Talk about living in the moment. Every day was something to 'get through' to be one day closer to the end of treatment and now I'm there! It kind of keeps taking me by surprise that I'm feeling better and stronger every day and it isn't about to go away with the next dose of chemo drugs.

It's quite a shift in my thinking to not hold so much of myself in reserve all of the time. I've been walking around with a bounce in my step and a smile on my face. I'm afraid that cheeseburger and fries craving has vanished though...along with thoughts of steaks and liver. Instead, after six months with nothing raw, it's lettuce I'm having fantasies about! Yummy fresh green salads filled with greens and spring herbs!

We've made a decision about Whole Brain Radiation even though I haven't seen either of the specialists yet. The only form of cancer that actually responds to a prophylactic use of radiation to prevent brain metastasis is small cell lung cancer. There is no evidence that it improves either recurrence or life expectancy in melanoma brain metastasis. Worse, the permanent long term side effects are completely unacceptable.

One to two years after WBR, the majority of people experience wonderful things like permanent dementia, loss of memory and speech, along with other significant neurological damage. One of the reasons I've been able to deal with the brain trauma I have so well is that I am still me. Sometimes I even think that I am a better version of ME. What I can't abide or risk, is that I could put Mike in the position of losing me long before I actually died. Since I intend to live much longer than two years, Whole Brain Radiation will ONLY be gone to as a last resort after everything else has failed. That was easy!

When I found out the neurologist that I will be seeing next week is the one who did the craniotomy and who wanted to do WBR on me even then, I got a little bit upset. I can remember so clearly coming fighting out of a semi-conscious state to tell him NO, he would not be doing WBR on me! Then I remembered that no one can make me do it and since Mike is on the same page with me on this treatment, I don't even have to worry about permission being given if I'm ever unconscious again. Whew!

I'm leaning towards doing the low dose prophylactic radiation on the adrenal site because studies with melanoma using radiation on the body where a high risk of recurrence is likely to occur show a 40% improvement over a two year period with no difficult or long term side effects. That I can deal with because...it's NOT MY BRAIN!

I really didn't expect to be thinking about this stuff so soon or making decisions but when I got the call to confirm consulting appointments, I decided I would look at it now to be prepared for next week. Then I can get back to Mike, the garden, my fish and the horses! Even though we are under constant extreme fire danger here, it is still a beautiful and warm spring and I have seeds sprouting everywhere. Life is good!

2011-04-18T18:45:00.000-07:00

The best news EVER!!!

Instead of being in Albuquerque waiting for surgery I'm home because there won't be any surgery! My medical and surgical oncologists came in doing the doctor version of the Good News Happy Dance to tell us that there is no more tumor to remove! Mike and I were stunned in the best possible way and just sat there grinning at them. We so needed this good news!

They felt the risks of a difficult and complicated surgery are not worth the possible benefits just to remove a tiny bit of inactive tissue. I was a complete responder to the clinical drug trial I participated in and the best words I've ever seen written were on the bottom of last week's scan report, " No evidence of metastatic disease." Do you have any idea how rare this is??? Everything they were watching is gone, even the little oddball things and both the brain MRI and the PET/CT scans were completely clear!

This doesn't mean I'm cured, there is no cure for melanoma but it's the best break Mike and I have had in a year! Since this melanoma responded so well to DNA damage, both oncs suggested a course of radiation at the adrenal site to improve my odds of not having a recurrence along with a reduced dose of whole brain radiation for the same reason. My medical onc is setting up a consultation with an oncology radiologist to discuss these options. When I expressed concern about adding another layer of brain trauma to what I already deal with, he agreed to also set up a consultation with a neurologist so I'll have a better idea of what I might be up against.

But we don't have to think about any of that now cause tonight we gots a HUGE celebration going on here in New Mexico! So much thanks to all of you who have sent me words of encouragement and support...you're the best!!!

2011-04-17T07:17:00.000-07:00

Getting ready for surgery! I know I've been terrible about posting this last month (responding to emails too...) but that 'cumulative' effect of the chemo really took me to my knees. Then when I was off my knees I was working to get ready for being strapped to my recliner for six weeks. So my apologies for not posting and also for not getting back to emails yet. I actually have a folder of emails that need a thoughtful response so I will get to them! So Tuesday is the big day and Monday we will be heading for all of the pre-op stuff. We've decided that Mike will come home to sleep in our own bed and keep animals happy. Then on Tuesday I'll call him when they take me back to prep so that he can wind things up and head to the hospital. It will be a four to six hour surgery so he'll be able to get there well before the surgery is over. Last Friday all sense of anxiety left and I felt a strong sense of positive excitement about this surgery. It's the right thing to be doing now. Since the tumor has become so tiny and is clearly not attached to the adrenal gland, a number of people have asked me why remove the adrenal gland at all? Because it is the right next step. I had this same feeling of positive excitement when I chose the clinical drug trial I just completed...that it was the right next step. Even when I felt my absolute worst, I held on to that sense of knowing that it was working. So I guess just trust me that I'm doing the right thing just like I trust that sense of knowing. I'll have my netbook with me and will put up a post here as soon as I'm conscious and able to so that you will know I made it through with no problems. I had my pre-surgical brain MRI and full body PET and CT scans last Wednesday. I'll get the results from those tomorrow when I see my oncologist and surgeon and I'll put up a post with that update when I can tomorrow. In the meantime...back to getting ready for the big event!

2011-04-06T06:50:00.000-07:00

Mike's home and it's my birthday! What could be better than that? You know...I don't think of birthdays as getting older anymore...I think of them as one more year of beating the statistics! And if having a serious surgery means I get Mike home for over a month, then it sure is worth it! We might even get some rain this afternoon and I would consider that a wonderful gift from the rain spirits. New Mexico and been on high fire alert for weeks now because the mild winter followed by weeks of high winds has left us a tinder box. There have already been numerous fires in the south that destroyed many homes and took the lives of countless wild animals. I'll go for some birthday rain! Mike and I and friends who have done so much to help us get through the last winter of chemo are all meeting for lunch at a favorite restaurant today to celebrate! These friends also include my chiropractor, acupuncturist and Doctor of Homeopathy who have done so much to support my body's healing and advise me in how to get through chemotherapy and the upcoming surgery. It will be wonderful for us all to be together for a celebration. So hooray for birthdays and being here another year to celebrate them!

2011-04-01T07:55:00.000-07:00

A much overdue update! Sorry to be so slow in getting a post up...that darned anemia really laid me out. Besides being bone weary, there simply wasn't enough oxygen to be had in the air, made doubly so by living at nearly 8,000' altitude. The good news is that after eating a lot of liver, acupuncture and chiropractic treatments, I'm on the way back! I have one last nadir (low point from the chemo drugs) to get through this weekend and then there is no where to go but up! Spring seems to finally be making us a visit and yesterday was so beautiful I spent time in the slope gardens planting five new columbines I found surprisingly at Walmart when I went to do the grocery shopping. Three of them were to replace ones that Dulce so kindly 'helped' me in the garden with by digging them up. What can I say? She might weigh nearly 80 pounds but she is still a puppy. The two extra ones I got just because they were so darned beautiful! I've also got the slope water feature cleaned out and up and running. It is much more beautiful this year than last, mostly because I have learned so much more from when I set it up. Now the water is just warming up and I have a few bog type plants coming to plant in it. I moved my pygmy water lily into the large pool portion of it where I think it will do very well. This year I'm going to get some Least Killies to live in there which are a very interesting native US fish. They sound like fascinating little guys who are basically pygmy mosquito fish that stay less than an inch long. They are also livebearers but only give birth to two or three fry at a time several days apart. They should be a very fun addition to the fishy family up here! Mike is expecting to have this well done over the weekend and then he will be heading back home. I'm keeping my fingers crossed because it's looking like the timing might work out that he will be home from now through the surgery and the three weeks after when he will be in charge of keeping me from hurting myself. We all agree that with my stubbornness combined with spring, this six week recovery will be the hardest part of treatment for me yet. My friend Anne figures by the second week home Mike will have a hard time controlling me and will probably need to tie me to my recliner (Hmmm...sounds kind of fun Honey!) Seriously, the threat of having my belly open up like a faulty zipper is more than enough of a threat to keep me behaving. Plus, the promise of an amazing summer if I just stick out six more weeks of doing nothing but walking makes it not too hard to take. Then there is the fact that my hair will start growing back in May to look forward to. I haven't minded being bald at all because the truth is, I've been sick so much of the winter that having to deal with hair too would have been quite a burden. It was hard enough to just get a shower in without passing out and one of those handicapped shower chairs that was loaned to me was a Godsend. So there you have it...all is good here at Star's Rest. Dogs are good. Horses are good. And all of them are shedding like crazy. Especially Dulce who has that dense Australian shepherd undercoat that is now coming out by the handful. After having nothing but short haired dogs since my twenties when I had collies, dealing with so much hair is a bit of a shock. Now that I'm back on my feet and have enough air to breathe again, I promise I'll be better about writing!

2011-03-20T09:18:00.000-07:00

Empty pill bottles in the trash.

Last night I took the last of the oral temodar and I hope so much that is a forever kind of statement. I knew there would be a bit of glee in tossing those bottles but I really didn't expect the short, sharp flash of anger. It didn't last long but it was definitely there.

All of my doctors and the protocol nurses have been telling me what an accomplishment it is to have gotten through six courses of this kind of chemotherapy and still be on my feet, still fairly healthy and still making jokes and looking for the joy. A month ago I would have responded with something to the affect of 'It hasn't been such a big deal.' and that's because I'm one of those people you want around in a rough spot. I get clear headed, strong, take charge and fake my way through. Then when it's all over, I let go and let down and that's where I am now. Today my response is, 'Yes. It's been a little piece of hell and I acknowledge myself for that.'

No matter how bad the previous courses have been I've pushed through and kept moving so that I could hang onto that image of strength. Now that it's almost over, I'm giving in to the complete marrow deep exhaustion I feel. I slept almost all day yesterday which I know my body needs even though it made me feel like a lazy slug. I just might do the same thing again today.

The pain has been really brutal again this time around and if the day stays warm, I may go and sit by the step gardens that are starting to sprout and see if the cool spring sun can start to leach the pain from my bones, joints and nerves. I have so many wonderful spring things I'm looking forward to including my big, new goldfish pond and water garden out on the deck. I loved what I did with it last year so much that it needed to become something powerful and permanent for us to enjoy.

I have wonderful flower seeds on their way and in fact they may already be at the post office. On the first I'll order our heirloom tomato plants and start seeds so that they will have good growth before our official last freeze date. My roses are even beginning to bud and even though it is still a bit too early to prune them, they are strong and healthy. So much life to surround ourselves with this spring and summer!

2011-03-14T04:36:00.000-07:00

I'm starting the count down! ~ UPDATE AT BOTTOM!

By this time next week I'll be feeling the first inkling of feeling better and by Tuesday I'll get a glimmer of a cheeseburger and fries craving!

I got up at 5:00am (my body still insisting that it is really 4:00am) so that I could have a cup of coffee and a breakfast bar before the labs/blood work food cutoff time. Our friend, Anne, will be here at 7:00 to take me down to UNM for my LAST, yes LAST chemotherapy infusion!

I am so proud of myself that I have made it through most of winter and five months of chemo with my hope and my sense of humor still mostly intact. It hasn't been easy and those weeks of being deathly ill and the intense bone and nerve pain have done a number on me but the end is so wonderfully in sight. I will laugh in the face of sickness and pain this time knowing it is the LAST time.

I know I kept promising photos of the darling Miss Dulce and here they are. She has and is becoming one of the world's most loving and sweet puppies, right up there with Miss Coli. I was sitting on the ground the other day beginning the process of cleaning all of the winter debris out of the in ground fish pools when she came up and sat right behind me, leaning against my back. Then she hung her head over my shoulder and wrapped one of her big paws around my arm. We just sat there together for a while, totally content to be quiet and cuddle. What a sweetheart!

She and the other pups have been taking turns sitting next to me on the couch to keep me warm and make me happy. So without anything further, here is Miss Flubber Face!

All worn out from too much play with Coli.

Wearing her pink camo waterproof snow suit. She's got that smokey eye thing down pat!

Three very happy dogs.

I'll update from the hospital if there is any news to report.

~~~~~~~~~~~~~

It must be some kind of crazy gift from the Universe! Everyone at UNM has been early today and I started the infusion an hour early! I met the surgeon and *loved* her! Unfortunately she feels she will have to open me up down the front to do the surgery because the tumor has gotten so tiny and is separated from the adrenal gland and they are afraid they will miss it if they do it laprascopically. She goes in from the front instead of the back though which is much less difficult to heal from. You've got to love an oncology surgeon who walks into the room laughing! She's fantastic.

I will be going for pre-surgery on April 18th and surgery on the 19th. I will be in the hospital 3-5 days. Recovery is absolutely NO lifting of anything heavier than a milk carton for six weeks. They said Mike should plan to be home with me for three weeks after the surgery because they will be cutting the muscles down my mid-line which is pretty serious. I should do nothing but rest and be quiet for those three weeks or I will risk developing a hernia.

I also met my new medical oncology doctor and really liked him too. He was very knowledgeable but also approachable. I said something about hoping he could handle my sometimes twisted sense of humor and he responded that patients like me light up the doctors' day! So I think we are good with him too!

Well typing is hurting my IV, just wanted to give everyone an update that all is goiNg well and that I should be home around eight this evening! Love you all - Carmon

2011-03-03T12:49:00.000-08:00

Five down and one to go.

Well, only ten more days and I'll have that sixth and final infusion. I'm not going to say that it can't be any worse than this last one was because I've been taught the hard way that it certainly can. The big difference will be that it really is the last one!

The siren's call of spring has me in its grip, even though we are actually nearly three months away from our last freeze date. I have needed the smell of dirt and the excitement of planting so much that I ordered a batch of flower and vegetable seeds this morning. The first of April I will order my heirloom tomato plants because the only way you can get a crop of tomatoes here with our short growing season is to keep them in peat pots and carry them in and out according to the temperature until it is safe to plant them.

Last years veggie crop was interrupted by a brain tumor so this year I hope things go a bit smoother! Now that all of my roses have been moved out to the slope garden, the deck will be devoted to a veggie and herb kitchen garden and annual flowers. Besides tomatoes and salad greens, I will have two kinds of beans, broccoli, rainbow chard, spinach and sweet peppers.

Those and getting my other gardens back in shape are really all that I want to take on this year. If everything goes well, then next year I will add carrots, onions, garlic and maybe potatoes. The dream is asparagus and maybe, just maybe that will happen next year too. After six months of eating nothing raw, I am SO craving fresh homegrown veggies and salad!

Mike made it home last Monday but he came with a really bad cold that he picked up from someone he works with. I've had to keep my distance from him because I can't afford to catch a virus so close to the end. He's been really sick with a fever but seems to be at least a little on the mend today. Hopefully he won't be down the entire time he is here. At least the weather has been lovely and spring like this week and I'm sure going from where the highs have been below zero to highs near 70 make recovery from being sick just a little bit easier.

So that's where we are. I'm loving the sun, sticking my hands in delicious smelling dirt to start working the garden, and counting down the days to number six. And Mike is doing his best to get over being sick.

2011-02-22T07:15:00.000-08:00

Tired. Yes. Very.

No one has any real idea of what this takes out of you until you have experienced it yourself. My mother had breast cancer back in the 70s when chemo was a whole lot worse than it is now. I was 18 and came home from college to help take care of her. One of the things that amazes me now is that I took her to see 'The Godfather' just a week or so before she died. How did she do that? We also went out to lunch together fairly often as she was recovering from a radical mastectomy.

For those who know me personally and my nearly six foot tall frame, you would have been shocked at my mother who barely cleared five foot two. I used to call her My Little Mama. She was heavy and the steroids that came with the chemo made her bloated. Still, she got out with her youngest daughter to eat lunch, shop at the mall and go to a movie. It wasn't until the end when all of her children had made it home that she went down and stayed down.

I think about these things when I hit this emotional and mental low point of each cycle. My mother stayed strong for us because she was a mother before anything else. I stay strong because it is programmed into my genetics. And because I'm really, really stubborn. My internal motto from the time I was a child and told I couldn't support myself as an artist has been 'Just watch me.'

That attitude carries me through each of these cycles and I find myself getting irritated with people who insist on thinking they know better than I do what I'm capable of. As I told my oncologist at my last infusion, I just push through the fatigue and pain. I've always been strong and independent and I'm sure not going to let a little chemo take that away from me. If I do, then the cancer has won. So please accept that I know myself better than anyone else ever could and if I actually need or want help, I'll ask for it.

All of that said, I truly hope that Mike will be able to be home for the last infusion next month. His quiet, calm presence means the world to me and he knows to just carry on, trust me, and let me pace myself. I know that he will take care of everything exactly as it should be done and that I can lie back and truly rest in that place of comfort and peace. I'll need a real respite this time to get my body ready for surgery and he is probably the only person who can really give that to me.

The pain has been extremely bad this time. Every bone and joint in my hands has spiked with pain and my feet feel thick and swollen with it. The B12 shots have really helped with my energy levels but the pain goes up and down each time. This cycle has been a bad one but I took the last of the oral temodar last night and you have no idea how much I enjoy tossing those two very expensive bottles into the trash when they are empty. The sun is shining, it's going to be another beautiful, warm day up here today and I may even set up a chair and sit on the deck for a bit.

2011-02-21T10:45:00.000-08:00

Bouncing back already.

A whole day ahead of schedule. I went out and helped Jodie feed the horses this morning and I'm pretty tired, but it always feels so good to start moving again. I was hungry when I came in, again unusual, so I heated up a can of black beans with cheese and ate two small bowls. That is pretty amazing. Because of the impact the chemo has on my nervous system, tastes are really screwy and anything sweet tastes awful. The only things that taste good are salty, spicy, meaty and so on. Those spicy black beans with cheese tasted pretty darned yummy.

The balance of today will be resting, then getting the afternoon chores done and a shower to wash off the smell of medications coming out on my skin. The taxil bone and joint pain has settled down and now the peripheral neuropathy in my feet and hands has really hit. Somehow that is easier to manage though and I just took some more oxy and it should settle soon.

Yesterday smelled like spring and I realized how hungry I am for it to arrive. Still another couple of months but we will have more of those days mixed in where sun, wind and humidity carry the scent of pines, wet soil and the first sprouting of plants up to us. If I could cover myself in it like a perfume, I certainly would.

2011-02-19T17:10:00.000-08:00

The sledge hammer effect.

I did pretty good yesterday...made it to the post office, got my last cheeseburger, french fries and a chocolate shake, then picked up feed for the horses to be sure our helpers wouldn't run low before I get back on my feet again. I even thought I was doing pretty good this morning right up until someone started pounding my bones and joints with a sledge hammer.

Now I'm just trying to sleep my way through the next few days as much as I can with the help of oxycodone for the pain. I'll start to bounce back around Tuesday so please don't worry about me between now and then. I'm just doing my best to get through this second to last rough spot.

2011-02-17T06:38:00.000-08:00

Can you give me a big WAA! HOO!!!

Yep, yesterday's scans showed no new tumors and that adrenal tumor is now 30% of it's original size at 0,72 centimeters! If it continues this reduction rate by the time I have surgery to remove it, it will be less than .5 centimeters!

Here though, really, is the best news of all! I asked if they could tell me how the rest of the trial patients are doing and the protocol nurse told me that every one of them has shown the same kind of results! For metastatic melanoma patients, this is incredible news because not much works for us. Unless you have a mutant gene pattern, no one really knows why a treatment works for one patient and not another so I am really hoping this treatment will work for many, many people!

My last infusion will be on March 14th when I will have a full body PET scan which is far more sensitive to small clusters of cancer cells just to make sure nothing has been missed by the CT scans. Then I will have a consulation with the oncology surgeon who will be removing my adrenal gland...for those who have wondered, you have two adrenal glands so I have a spare that will take over the extra work!

That's all for now - yesterday was a 16 hour day and I'm beat but very, very happy!

2011-02-10T15:47:00.000-08:00

Thank you...

When I read comments like Robin's, CottonLady's and others, it reminds me how much you all mean to me. Yes, I am tired but it's more from winter than anything else. One of the advantages of having a memory that slips is the time passes very quickly. I can't believe that it has been almost five months since I started this drug trial. When I look back, it's really just a haze and I'll be through these last two months before I know it.

There has been quite a thread on the melanoma forum that I'm on about whether there should be a place on the board just for inspiring 'success stories'. While that may sound like a good idea at first glance, think about it a bit more...who decides what is a 'success'? The truth about melanoma is that no matter how many years you are No Evidence of Disease (NED), you are never cured. For many of us, myself included, success becomes about how well you learn to live your life with melanoma.

Looking at it that way, in spite of two recurrences and how much I hate what this disease has done to Mike and our friends, I see myself as a success story. The first year was filled with fear and anger that spilled out onto a lot of people and rather consumed me. Yet here I am, post brain bleed, brain surgery, brain radiation and almost five months of chemotherapy, and I am truly happier and for the most part, more filled with Grace than I ever have been in my life.

As I told Mike last summer, I feel like I got a great big Do Over when I survived that brain bleed. I fell in love with him all over again and I look at him with the same passion I felt when we first met. I love my friends completely, even though some of them have taken the fallout of me coming off the steroids I am pumped full of before each infusion. That stuff makes me as irritable as a teenage girl with PMS!

I hardly think about cancer at all and it often takes a moment for me to figure out what they mean when people ask me how I'm doing. Well of course, I'm doing fine! I think about the chemo because the cycle of it affects me daily but it isn't with any real distress. After four rounds I know I can get through it and each one is one less I have to do.

So success isn't so much about whether or not you live, it's about how you choose to live. And hey...you don't have to wait to get hit with a life threatening illness to choose to start living well!

A very sad note to share...Huey the goat died last night. When I found him this morning it looked as though he had either been kicked in the head or run over and then froze. Even when the goats jump right into their feeders to steal grain, not even Mio has ever acted aggressive towards them. My best guess is that they all were running and playing in the deep snow and he just wasn't able to get out of their way like he normally would. They all seemed pretty shocked and distressed and kept coming back to smell him. Daisy was very subdued and depressed and it wasn't until this afternoon that she finally rejoined the horses.

The ground is much too frozen to try to bury him so a friend helped me to get his body into my truck and I drove him up into the woods and left him far from anyone's livestock. I kind of like the idea of continuing the life cycle by letting his body help to feed the predators who have a hard time in the winter and are so important to the ecology of our mountain. I also needed to move him as quickly as possible so as to not attract those same predators in close to the house where they might decide to attack a cat, dog or Daisy.

A lot of loss this winter and I hope this is the end of it.

2011-02-09T16:03:00.000-08:00

Like millions of other folks,

I am so ready for winter to be over. And up here in northern New Mexico, we've hardly had winter at all until the last two weeks. Still, in spite of the overall mildness, this has been a winter where my body has fought the after effects of surgery and radiation to treat brain tumors; followed by a monthly onslaught of chemotherapy. It doesn't help that I'm hitting a chemo low, trashed with nerve pain, right as a second snow storm arrives

Normally I love the quiet of winter. The slow drift of falling snow. Moonlight on crystal white spaces between shadowed pine trees. Steamy breath of horses moving slowly with the soft click of icicles hanging from manes and tails. Winter is a time for rest and introspection. A time to rediscover myself. This year it's just a matter of getting through it and hoping that the next one won't fall at a time when I'm sick and make it impossible for anyone to get up here to help me.

Just like always though, I'll manage and I'm down to only two more infusions. The next one is on the 16th and will include my latest full body CT and brain MRI scans. I'll be happy with news that the adrenal tumor hasn't grown any and of course hearing that it has shrunk more would be delightful. And no new brain tumors would be a bonus too. So lots of stuff to take care of before next Wednesday and hopefully, the weather guys will be right for once and we are back on a warming trend until I'm back on my feet.

These two puppy girls have kept me in laughter in spite of a new foot of snow. Coli taught Dulci how to climb up to the top of the hay stack and since the tarp on the hay is covered with a layer of snow, they were sliding back down on their bellies like seals this afternoon!

2011-02-05T17:34:00.001-08:00

We finally have answers about Willie

This is one of my favorite photos of Willie, when he discovered his handsome self in the bathroom mirror.

I finally felt up to talking with Willie's vet about what he found during the necropsy. As he and I both suspected, Willie's entire intestinal track was filled with diffused hemangiosarcoma. When it began hemorrhaging, it bled both inside and outside of his intestines causing him to bleed out very quickly. Even had we known about the diagnosis, there would have been nothing that anyone could have done to prevent his death with such a widespread invasion of cancer.

It is a comfort for all of us to know that we did everything we could do, as quickly as possible, to treat and keep him comfortable. I am also grateful that I stopped on my way home and spent time with him less than an hour before he died. He knew he wasn't alone and that he was dearly loved. Since we know that Willie is my last greyhound Hearthound, I have decided to have him cremated so that he can be nearby. He never knew the other dogs who are buried down in the orchard so keeping his ashes in a nice urn in the house just feels like a good thing to do.

It's also a relief to know that it wasn't anything that could possibly affect the other pups.

Rest well sweet Willie. It wasn't nearly long enough.

I finally got the water pressure pump and pipes thawed and have water in the house again. Yay! And I took some photos this morning of the girls playing tug with each other and I'll try to get editing done tomorrow and post them. I also got Dulce's new pink camo rain/snow coat in the mail which she looks adorable in and I got photos of those too.

2011-02-03T08:30:00.000-08:00

Dealing with Arctic storms!

Like most of the rest of the country, it has been incredibly cold here. Not too much snow, only about six inches, but much colder temps than we normally get up here. Our high yesterday was -6, low last night was -16. When we got up this morning it was only 48 inside the yurt and that was after me getting up every two hours to stoke the wood stove.

Our pump room froze up for the first time ever yesterday so I had to move a large electric space heater down there to thaw out the pump. It's working this morning but I've still got frozen water pipes going into the house that I'm trying to thaw. This all may sound like a big hardship but when you consider we've only had these conveniences for a few years, it isn't that hard to buck up and manage for a few days. It makes it even easier when I consider that Mike is up in North Dakota where the wind chill was -60. That makes a measly -16 not that big of a deal!

Now for the puppy report! Dulce and Coli are best friends and two of the funniest girls together. They both adore the snow so much that in spite of trying, I couldn't get any photos of them playing because they were moving too fast! Just imagine two beefy girls running full speed through the snow, straight at each other, leaping into the air and body slamming each other, just to hit the ground and take off to do it all over again! While it was actually snowing, I had to lock the dog door just to keep Dulce inside for the night.

Last night the girls discovered playing tug with each other which was a great way to get rid of some of that puppy energy. It's safe to say that Coli might be missing Mike but she sure isn't depressed this time!

The horses are handling the cold really well. I always expect that of the mustangs who are fat and furry and happy if they just have plenty to eat. I was worried how Brillo would handle cold this intense but he stayed warm under his blankie and doesn't seem any the worse for wear. Temps as low as -16 are a little rough on a thin skinned thoroughbred but he's managing well.

And that's the report for Star's Rest...we'll be back up in the 20s today which sounds an awful lot like a heat wave, and back above freezing tomorrow so life will be back to normal up here.

2011-01-28T06:52:00.000-08:00

Criminally cute!

I gots me a new sister!

I think Dulce and Coli got themselves a life sentence in the cute department! These two girls fell in love at first sight and they are totally thrilled with each other. Just like with Coli two years ago, Dulce was waiting patiently for us to arrive to get her and promptly sat on our feet and gave us smooches! It was beyond adorable to see the two girls sprawled in the cab, nose to nose and giving each other kisses on the long drive home.

She wants to stick her tongue in my ear! Yuck!

We've been calling them The Big-Head, Fireplug Girls and then when they discovered wrestling with each other they became The Sumo Ladies! Dulce walked in like she had been here forever last night, immediately started using the dog door and much to Duffy's irritation, she claimed his favorite spot on the couch! Just like the black dogs, she slept in without a peep until she heard us stirring. Dogs who sleep in! Who knew it was possible?

Mmmmmmm...good chewies!

Seriously, she loves, loves, loves people and when she turns that baggy faced charm on you, you better plan to melt! We are both amazed at how smart and sensitive she is. The vet who did her spay says she is only six months old yet she is very mature. It only takes a very soft voiced 'No' to get her to stop something. She comes when you call or whistle and loves walking along with us and the other pups. She sits, she stays and she sprawls really well!

I think I'm gonna like it here!

Are we in love? Absolutely yes! Every single one of us thinks that Dulce is just about the perfect fit! I'm still really wiped out from yesterday but I'll add more photos and stories over the next couple of days.

2011-01-25T18:25:00.000-08:00

Another one done.

Last night was my last dose of oral temodar...thank God. Next time they will have to give me prescription strength acid reducers because I am feeling like that stuff is burning a hole right through my esophagus. Oddly, anything sweet triggers the reflux horribly, along with terrible tastes in my mouth. So none of my favorites of chocolate, tapioca, ice cream and so on.

Today has been slowly better, still a lot of nerve pain and fatigue but I can always tell when that last pill has gone down. I just maybe, might possibly, find myself thinking about a cheeseburger tomorrow.

Mike is driving in as I type and should be here in about another hour. Miss Dulce went in for her spay this morning and Janelle emailed me that the staff immediately called to see if she was still available for adoption because they wanted her. Sorry! She's coming home with us on Thursday. I'll be sure to take photos and tell the whole tale of our new girl's trip and first days home.

The schedule for February if I haven't already said, is a full body CT scan and brain MRI on the 16th followed by my last appointment with my oncologist and my fifth infusion. My doctor is taking a position in Vermont and February will be the changing of the guard when I get my new doc and treatment plan.

Am I worried or upset about that? No. I'm a pretty good self-advocate and irritating patient with a bizarre sense of humor and the new oncologist will either get that, or she won't!

2011-01-24T07:36:00.001-08:00

Another rough trip this time but happy news too.

There is definitely a cumulative effect with this darn stuff. They've been giving me a B12 shot with each infusion and amazingly, I held my appetite up until yesterday and the 'bones and joints turning to ashes' wasn't quite as bad as previously. Unfortunately, the peripheral neuropathy last night was the worst so far. It took 20 mg of oxycodone to get it to a level where I could stand to lie still in bed. One more dose of temodar tonight though and I'll slowly start moving past that phase. I keep telling myself that this stuff is killing the cancer cells too so me and my healthy cells just have to get through a little more!

Once I hit the 'too sick to do much' phase, catching up with Nita slowed down but I have a much better idea of what has been happening in her life for the last nearly thirty years! And I've been brought up to speed on her daughter and what a lovely relationship they have with each other. Best of all, how happy she is with her husband after so many years of making all of her decisions for her daughter. In a few days, I'll be feeling better and she won't have to sit staring at me as I moan in my recliner!

This cute little girl kept calling me back to look at her photos again!

Now here is the happy news! One of the rescues I made donations to in Willie's memory is Coli's home rescue. While I was on their website, I saw a photo of a charming blonde girl. I was very, very sad right then but after a few days, found myself going back to visit and look at her photo again. Finally, I contacted Janelle who began telling me about her and sent me more photos. So to cut to the chase, this week we will have a new girl joining our little family!

Look at those beautiful, sparkling eyes!

Tomorrow morning she will be getting all of her vet stuff done and after Mike gets back home this week and I'm feeling better, we will be driving down to Albuquerque to bring our new girl home. Her mother is a purebred English Bulldog and her father is a fence jumping Australian Shepherd. I am naming her Dulce both because Janelle tells me how sweet she is and because her color reminds me of dulce de leche.

She is being so serious about sitting correctly that this photo reminds Mike and me both of Coli's need to do things just right.

She will be about Coli's size and will be nine months old in March. She is housetrained, cat safe, kid safe, horse safe and submissive to other dogs. Just about perfect! Duffy will be in heaven to have two girls to dote on him. Like most of Janelle's rescues, she went through a journey before she wound up at the ABQ shelter with her brother and finally found a safe haven at Almost Home. I'm just incredibly grateful to have a warm, cuddly puppy to look forward to this week!

2011-01-20T17:37:00.000-08:00

Everything's fine here!

I had my fourth infusion yesterday and my friend Nita arrived safely. It's been really great to visit and start catching up on two lives that were once intensely close with so many years of distance in between. It's also wonderful to discover that the same deep core of friendship is still right there!

Today was pretty good and I felt well enough to have lunch with friends and to introduce Nita to them. I'm starting to crater now though so probably won't be on here for around five more days...don't worry about me! I'll be back as soon as the tough part passes.

2011-01-17T07:33:00.000-08:00

Lately I feel like my thinking brain is coming back.

It's been so subtle and slow that I didn't really notice at first. And of course the chemo and oxycodone I take for pain management have kept me a bit on the fuzzy side. But lately I have been able to manage Walgreens, Walmart and restaurants without my brain shutting down from input overload. Also, I'm finding it easier to string sentences together in conversations and I lose words less often.

If I let myself get too tired, all of that still comes back though. Last Tuesday I had an appointment with my Primary Care Doctor to ask him to take over my pain management so that I'm not depending on doctors who are nearly three hours driving time away. By the time I saw him it was after four and I was pretty much mental toast. Which was good in a way, I guess, because he got to see me at my mental functioning worst.

He is the doctor who removed the original lesion on my arm and who had to give me the diagnosis. I hadn't seen him since before the brain bleed back in June so it was good to catch up and give him all of my recent blood labs and scan reports. I never know what the labs mean but he told me my white cell count is really good, not much below normal. Which must be why I haven't had some of the other chemo side effects that people have like mouth sores and infections.

We are all still adjusting to Willie not being with us anymore. It hits me at odd moments, especially when I go somewhere in my truck because Willie was my 'go with' dog. We are waiting to hear what caused his death and I am expecting to get a report along with the bill. It will be a relief to know what happened to him.

That first day or so I kept thinking I can't do this again. I can't manage the loss of another dog who I am so completely bonded with. The truth though is that as soon as things warm up again, Mike will be taking Coli with him for long periods of time and Duffy is not the sort of dog who can manage being alone. And for me, all of my life I have had a 'go with' dog who was bonded to me and my constant companion. Mike has that with Coli and bless Duffy's silly heart, he has never been that kind of dog. When the time is right I know the dog who is meant to fill this space will show up for us.

2011-01-13T16:28:00.001-08:00

My dog, Willie, died today.

My sweet, sweet Willie.

I'm not going to go into details because there aren't any solid answers yet. It was sudden and even his vet is baffled. He asked to do a necropsy and maybe then we will have answers. Right now I am feeling so deeply sad. First Ellie died after my first cancer surgery and now Willie. I will miss so much having him curled up next to me when I am so sick next week.

I need a break to grieve. I'm doing really well here this last week of the cycle other than this new emotional crash. I'll write more soon.

Rest well my dear dog. Run the Heavens, free of hurt and pain.

2011-01-04T08:39:00.000-08:00

It's been really cold here.

Mike will be heading back to North Dakota soon because one of us has to earn some money! He has been such incredible support through this last treatment that left me so sick through Christmas. I'll really hate having him go but we each do what we have to do. And he has to head where the weather will make our cold look like a heat wave!

We are slowly starting to warm back up again and I hope we don't get too many more of these extreme cold fronts moving through. Mike spent two nights in his recliner so that he could constantly keep the fire hot in the wood stove. It's amazing how much wood we can go through when the lows drop to single digits. He spent a good bit of yesterday using the log splitter to split the last of the wood he cut last summer. I kind of doubt it will be enough to get us through spring but we can always buy a cord if we have to.

Last week, right before the snow storm moved in, he got a flatbed worth of hay moved up, stacked and tarped so now we have enough hay up here to see us well into March. Last winter we had such deep snow that we couldn't move the trailer up here and had to bring small loads up on Mike's truck. This makes it much easier!

I'm at that point where I'm feeling really good but still tired and short of breath. I did some research and each of the three chemo drugs I'm on has a different low point as far as bone marrow is concerned. One hits me at day 10, one at day 14 and one at day 23. That means my marrow doesn't really recover until the last week so I have overlapping fatigue from not having enough red blood cells moving through my veins.

That also means I am very sensitive to cold, something that has never bothered me in the past. Those days where it was still in the teens when we went out to feed the horses were almost more than I could manage. Thank goodness Mike was here to carry on when I had to go inside to warm myself up.

One on my old friends from back in my early 20s is coming to spend two weeks with me during my next infusion since Mike will be back up in the frigid north. Nita and I were crazy young women who danced a lot, drank a little too much beer and always had a good time together. She is also the person who helped me to buy both my first and second horses that I bought myself as an adult. The first one was an 18 year old gelding named Carrigan's Fancy. He was a wily old guy who taught me a lot.

Fancy and my skinny young self.

The next one was an off the track thoroughbred named Oh Henry (because he was mostly nuts I always told people!). I bought him because like so many twenty-somethings, I had a fantasy about riding the jumper circuits. I kind of ignored the fact that I didn't start learning to jump horses until I was 23 and as much as I came to love Henry, he didn't have a lot of desire to jump and I didn't have a lot of talent in that area. I did get introduced to dressage riding Henry though and later on, he became an outstanding endurance horse.

Henry and me at last looking the part!

Nita and I lost track of each other after she married and had a daughter with a developmental disability. Caring for and raising her daughter became her life's focus and I got drug off in my own directions as well. These days Nita's daughter lives a happy, productive and independent life in her own living space and with a job near enough to her mother that they can spend regular time together.

I'm so happy that Nita now gets to have a chance at focusing on her own life with the high school sweetheart she discovered again, fell in love with and is now married to. It will be so much fun to catch up, remember our crazy good times, and hopefully rebuild a friendship into something we can enjoy together in the coming years. This time she is coming to help me through the sickness of chemo and I'm hoping that next time she will come with her husband for a real vacation for all of us and maybe I can even get her up on a horse again!

2011-01-01T07:24:00.000-08:00

Yep, it's a new year!

I could go into everything I hope 2011 brings for me, but I think you all know what that is!

Instead, I'll pray that Mike stays strong, healthy and happy and has no more reasons to worry about me and that next June is completely uneventful for us both.

I'll ask that our friend Carolyn never has to rush me to the hospital again. Some things are just awful hard to put on friends. And that very soon, none of our friends will need to come over after doing their own chores to help me with mine!

I pray that our horses stay sound and strong and continue to live their lives here on the mountain with joy and freedom until they leave us from a rich old age. The same for our dogs, cats and those wily goats.

I pray for the health and happiness of old friends and new ones and very old friends who have recently reconnected with us.

I pray my God-daughter and her family experience only joy and prosperity and I hope that in 2011 I will finally get to meet my five God-grandchildren and God-son-in-law. Now wouldn't that be a great gift for 2011?

Well, that about does it for me. I intend to greet the spring finished with chemo, done with surgery and free of cancer. I plan on being one of the 20% who not only become No Evidence of Disease but stay that way for many years to come. That's my plan anyway!

And to all of you out there who have so steadfastly sent me prayers and words of encouragement...I pray that for each of you 2011 is the best year of your lives so far! My love to you all ~ Carmon

2010-12-29T16:53:00.000-08:00

The measure of a cheeseburger.

Yes, it's definite. On the morning I wake up with an irresistible craving for a cheeseburger and fries, I'm on the way back. It hit me yesterday...must...have...cheeseburger!

Mike took me into our little town to a cafe called The Cowboy Kitchen. Their claim to fame for me is juicy home style burgers and hand cut fries. I was practically drooling when the waitress finally brought out my half pound burger and that big heap of fresh out of the fryer fries. Oh my but they were good!

Eating that first burger seems to set the stage for recovery even though I am still as tired and week as a day old kitten. I found lots of things to be amazingly funny last night leading to gales of giggles and laugh out loud cackles. It's hard to make Mike laugh out loud so I settle for a crooked grin and a glint of infectious humor in his eyes. Hey...you take what you can get!

What is really amazing is that I can go from the depths of 'I'm not sure I even want to live through this' back to finding the humor in the most ridiculous of things. I'll take the humor, thank you very much.

2010-12-23T16:56:00.000-08:00

Happy Holidays Everyone!

I hope that the preparations are nearly over and that everyone is getting ready to settle in for a peaceful and loving Christmas with their families and friends. I'm just about at the bottom point with this round of chemo which means there are just a few more days to get through. By Monday I'll be feeling so, so much better.

Mike has been taking wonderful care of me and all of the animals and I never lack for a dog cuddled up next to me on the couch keeping me warm and cozy. I wish you all a wonderful holiday, however you choose to celebrate it, and I thank you with all of my heart for the wonderful words of support, love, encouragement and prayers you have sent me this last year.

You truly have made a difference...Carmon

2010-12-21T07:29:00.000-08:00

The most excellent HOLLY JOLLY Christmas news!

And a Happy Solstice too!

So here are the details from yesterday: the brain MRI shows no changes which is very good. The tiny tumor is still tiny and the big tumor is stable but hasn't done any more shrinking. That's fine because that can take years as cells die and wither away. There will always be a scar there that will show up on scans with mild metabolic uptake of trace.

The CT scan was the outstanding news though with zero new tumors and that nasty old right adrenal tumor shrinking from 2.4 X 2.4 centimeters down to 1.2 X 1.0 centimeters! That is just beyond outstanding and after only two infusions puts me into the remarkably strong responder category.

There is also a small spot on the left lobe of my lung but those spots are notoriously difficult to diagnose without a biopsy or rapid growth. This spot only showed small metabolic uptake consistent with the scars left from the lymph node dissection and the brain tumors as well as a syinovial cyst that shows up every time. My oncologist isn't worried about it and it went from 9 MM in September to 6 MM now so whatever it is is healing and is most likely some sort of natural lung trauma.

This was such a confirmation for me because I had felt with a deep inner sense of 'Knowing' that this drug trial was the right choice for me. I was even secretly happy that the c-kit protein dna test had not come back in time to get into that trial. Even though this is very rough on my body, I felt from the beginning that I had made an internal agreement that what I am doing is helping it with something it doesn't have the tools to do on its own. I believe that the strong, stable lab tests of my blood prove that. My LDH levels have barely even risen above normal ranges and my red and white blood cells as well as platelets are staying in healthy ranges.

Sure I had a bad week last week, feeling sick, down and in pain but that is totally normal when you are floating around in a bit of real world limbo waiting for some sign that the sickness and pain are all worth while. I've gotten that message now and it will sustain me through this current infusion with a very sick Christmas. I may be lying in my recliner moaning but inside I will be filled with joy.

This infusion puts me halfway through the six course treatment and I will do it with resolve and when it comes time to remove that adrenal gland surgically, I know I will be dreading the effects of surgery and recovery, but I will get through that too with hopes that by fall at least, I'll be able to enjoy riding my sweet horse again and maybe have hair long enough to comb!

2010-12-20T10:43:00.000-08:00

It WILL be a Merry Christmas!

This will be fast because I'm waiting to be called in for chemo; but I just left my oncologist and the scans done last week show nothing new and the adrenal tumor has reduced by better than 50%! Finally we have some outstanding news and I'm so glad Mike was here to share it with me immediately instead of long distance!

I'll write more later! Wooooo! Hoooooo!

2010-12-18T06:47:00.001-08:00

No word on the scans yet.

Something very odd happened with the CT scan on Wednesday. Apparently when I was semi-conscious at best while I was in the neurosurgical ICU back in June, someone decided I was allergic to the IV contrast and they pre-medicated me for it. That is an involved process starting 24 hours before the scan with a series of doses of benedril and prednazone. So that is now in my medical records and when I showed up for my CT, they would not give me the IV contrast without being pre-medicated. Even though I pointed out that I had been given it with no problems in September, since it tends to make me nauseous, the radiologist said I always have to have the pre-medication as a safety factor.

My only option was to come back for another CT with the pre-medication or do the CT without the IV contrast. Coming back was not an option. That trip with it's five plus hours of driving takes too much out of me. Not to mention the wind storm we were having and the snow storm on its way. I opted for the non-IV contrast CT. I have no idea if it will show my oncologist what she needs to see but I figured if it didn't, she could order another one with the pre-medication protocol when it wouldn't put so much of a driving stress on me.

Surprisingly, I'm not feeling any more anxious about the results than I ever was. Worrying about it won't change what it is and I'll find out the results on Monday regardless. I also seem to be over that bout of sadness. Those things never last long with me because I live entirely too much in the present these days. I think more than anything, it was triggered by the awareness that I will be knowingly walking into the hospital on Monday to allow them to make me horribly sick right through Christmas.

I've always loved Christmas. Not because it was a particularly joyous time with my family of origin, but because I made it a joyous time for myself. I'm not really an active Christian so I guess for me, it is more about the rebirth of the seasons and the earth. I've always loved the idea of the Hopi tradition of being silent and doing no work for a period of days after the Solstice to let Mother Earth rest and sleep before the start of the new cycle. I love that sense of hush and peace this time of year brings.

I love finding gifts for people I love and receiving them in return. I get this child sort of glee around unwrapping presents and it excites me just as much to see my loved ones unwrapping gifts I've chosen for them. That will be delayed a bit this year, at least with our friends, because each of them will be receiving baby roses from us in the spring. I wanted everyone to have something living and beautiful from us that would be with them for many years and give them as much pleasure as my roses give me.

I love hugging furry horses and watching them play, run and snort in the new snow. It gives me such pleasure to see our strong, healthy and happy horse boys thriving even in the heart of snow and cold. Yesterday morning when Brillo got down for his after breakfast roll in the snow, he leaped straight up in the air, kicking, bucking and striking out with his front feet before he ran out of the orchard. He was so filled with joy that Mike and I both burst out laughing at him.

I found a stunning white fir Christmas tree and had planned to have our friends over today for hot drinks and cookies and for them to help us decorate it. As it turned out, our first real snowstorm came in on Thursday and we postponed the gathering until New Year's Day. The snow was very welcome as we have been having fires all around us and this will help to get things back under control again. With Mike here, it won't be such a terrible burden for me to try to get things done by myself so let it snow!

My God-daughter and God-grandchildren sent me a box of beautiful ornaments they had made for me and I'm looking forward to adding them to my collection. I'll do my best to get photos of the tree to post when it's done. Mike and I will be having a turkey tomorrow to make up for both of us missing Thanksgiving and because I will be too sick on Christmas to either cook or eat a wonderful dinner.

And by the way...all three dogs are using the dog door with complete confidence! It's the first time since we moved here that I have managed to sleep through the night without getting up to let dogs out or in.

2010-12-15T07:14:00.000-08:00

I'm sorry I haven't posted in a while.

Mostly, time just gets away from me as a result of 'chemo brain' adding to my already damaged memory and thought processes. Also, not much has been going on. We've had really warm weather, unlike the rest of the country, and I have just been trying to stay on top of things. As I was warned, the fatigue and pain levels are higher this time and I haven't had that last week of the cycle where I felt almost normal.

Mike is taking me into UNM in Albuquerque today to get my follow up full body CT scan and brain MRI. This set of scans will determine whether or not I continue on with this drug trial. If there are no new tumors and the adrenal one has remained stable or better, reduced in size, then I am up for four more cycles with the next one on the 20th. If it has grown or there are new tumors anywhere, then we regroup and make new decisions.

Apparently it's going to get harder each time and at the end I have surgery to remove the entire adrenal gland to look forward to. It's all the price of survival. I haven't talked about the reality of the statistics here because, well, it's important that I don't buy into them and that the people who care about me don't either. But here you go: the median survival for people with my stage of disease and with metastasis to the brain and other parts of the body is measured in months, not years.

I know I sound a little more down than usual and that's okay because it is my reality for today. I'm sad today for what my body has already been through and for what's ahead for it. It's not going to get any easier and I will have to rely on my spirit and resolve to get me through the next six months. I have no fears of death but I also have no intention of giving up the fight. If nothing else, my struggle might lead to answers for someone else.

I've asked my oncologist via email to please let me know the scan results as soon as the reports come in. She has done this for me in the past and I told her I'm not sure I can handle any more office surprises. Hopefully I'll be able to share here, either tomorrow or Friday, what the results are. I'll be seeing her on Monday the 20th before my next infusion, assuming I have one. If the beast has spread then it will most likely be a meeting to determine the next course of treatment.

Like I said, I know I sound down today but it's just part of the process. I'm feeling really tired both physically and emotionally and it's hard to think about what next week is going to bring all of the way through Christmas. I'll bounce back again like I always do but for today I am letting myself be sad.

2010-12-05T06:32:00.000-08:00

Just in case you've wondered...

Yes, I am bald except for a bit of stubble and have been for a few weeks now. I live in soft knit caps in the house and even when I sleep. For outside I have some really warm rei fleece hats that Mike got me that come down over my ears and the back of my neck. If I have to run into town, I have some more stylish hats that I pull on over a knit cap if it's cold and of course for really formal occasions, I have an assortment of beautiful soft scarves that I tie on. My most precious hat is a beautiful soft knit one that my God-daughter made for me with love and prayers in every stitch.

Does losing my hair bother me? I don't even think about it. It's not like it was a surprise! And trust me, having a bald head on those really bad days is a whole lot easier to deal with than dirty hair would be. Showers are a quick and easy process with my bath mitts and no long periods spent standing with a blow dryer. I have a lot better things to do with my time these days than to get up an extra hour early just to wash and dry waist length hair.

My eyebrows are down to just a wisp which is kind of funny but having no leg hair is pretty nice!

Oh, this is pretty cool. As of last night, Willie is both letting himself out and back in with no assistance. I think it was probably because every time he came through the dog door yesterday he got a bite of beef jerky. Now all I have to do is convince Duffy that he doesn't need my permission to let himself out!

2010-12-03T07:13:00.001-08:00

Back on the upswing.

Now I know that about three days after the last dose of oral temodar I'll start to recover. I managed to make the drive into town on Wednesday because I needed more kerosene for the space heater and also to fill some prescriptions. It feels like I do everything in slow motion so I drive very carefully and with absolute focus. Of course when I got back home, I was pretty much trashed for the rest of the day. My energy levels won't really come back for another week.

It's always such a relief when my appetite returns. While I was in town I had a cheeseburger, fries and a strawberry shake and ate every bite! It's really kind of funny but all of the chemo diets tell you how to add calories to everything! Things you would never do with a normal healthy diet, like adding butter to everything, whole milk and milk fats, lots of red meat, ice cream, milkshakes and so on. Fortunately I have very healthy cholesterol levels with naturally high HDL so I don't have to worry about that end of things. Also, it's fortunate that I'm one of those odd people who actually love liver since it is such a great blood builder.

One of the difficult things is that they advised me to stay away from raw fruits or veggies because any bacteria not washed off could be catastrophic with my immune system impaired. So I gleefully eat all of those foods I would normally restrict because not losing too much weight is really important. Since June and the big brain drama, I've lost about ten pounds and I'm trying hard to keep it there. I feel I could lose ten more without it becoming an issue but I'd rather not have to deal with trying to recover weight during treatment.

We are back to beautiful, warm weather again, at least for this week, and I'm hoping that Mike will be winding up this job soon and he and Coli will be heading home. Coli will get to discover our beautiful new dog door that got installed this week so that I'm not getting up and down all night taking care of doggie needs. Both Willie and Duffy have gotten good about letting themselves back in during the day through it but they still think they need permission before going out. I think we will need to install some led lights in the dog door for the night because in the dark, they really don't seem to believe that they can push the door open unless I get it started for them. Still, it's a fantastic addition and something I wish we had done years ago!

2010-11-30T07:12:00.000-08:00

Pretty much slammed.

I'm sorry I haven't updated sooner but this round took me to the floor and held me there for about five days. Seriously. I expected it to be a little bit worse but not that much! I was extremely sick through the entire five days of temodar, never actually throwing up but with nausea and no desire to eat. Body pain kept me fairly paralyzed, crawling from one reclining spot to the next, and I had to deal with my normal low blood pressure dropping like a stone.

Saturday was the last dose of temodar and by Monday I was interested in food again but still weak and shaky. Mostly I spent yesterday napping, snacking and napping some more. My game plan has been 'move a little, sleep a lot'. Thank God for our friends who have shown up every morning to feed the horses, carry up firewood, and make sure I'm alive and don't need anything. One of the biggest blessings was Anne bringing over one of those handicap shower stools so I could safely take a shower. Sweating out chemo drugs is not a pleasant thing and I could no longer stand to be near myself.

Of course we had to get a winter storm and our first snowfall as part of the picture but thank goodness it hasn't been like last year when we already had feet of snow on the ground by now and the daily highs were in the teens. We'll be back up near 50 in another day or so and with me feeling a little better each day, I should be out and moving around again by then.

Mike is expecting to be back home again before I get full body CT and brain MRI scans done to see how I'm doing and before the next round on the 20th...oh boy...sounds like a really fun Christmas this year. There were a few days in there where I questioned my resolve to get through this four more times if it continues to get this much worse each time. You can't beat down an optimist though, I guess. As soon as I regained an interest in food yesterday my whole attitude shifted again. No wonder people used to get so annoyed with me - talk about the glass being half full all the time!

I've reconsidered something. Stubborn woman that I am, I hereby acknowledge that I can't make it through this initial week plus after each treatment by myself. Mike is doing his best to be here but he also has to keep us financially afloat and he doesn't always have a say in the timing of when he works. Several of my old friends around the country (and a few new ones) have offered to come to stay with me for short periods and help. I declined because truthfully, I'm a very private person and it is a huge strain for me to feel I have to entertain someone. And no matter how well meaning the situation is, I will feel I have to take care of you. Now I admit that I can't do it which is a darned big deal for me.

So please, if you made the offer in the past and are still willing, get in touch and we can work out a schedule. We're talking about the fourth week of each of the next four months though I'm pretty sure Mike will be here through Christmas. And you need to know it isn't an easy job. We live at nearly 8,000' in altitude and it's winter and cold. If you aren't used to that it will take you down. We have six horses that need to be fed every morning which means mixing their bucket feed, carrying it out to them and then stuffing 12 slow feeder hay bags with two big bales of hay to last them through the next day. Just filling the water trough is a chore because of the extreme temperatures.

There's keeping enough firewood carried up to the deck plus kerosene for the space heaters. Making trips to the water hydrant we rent in order to keep the holding tank filled. And you can't think of yourself as a guest. You will have to jump in and take care of yourself because on those days I can barely function I won't be cooking for you and what I will be doing more than anything else is sleeping. You'll have to think of me as someone trying to get through an extreme case of the flu. And speaking of flu...if you have a virus or cold, all bets are off because my immune system would not be able to fight off anything you might bring in.

Once I start bouncing back I'll be glad to have you and to catch up and visit. I just don't want any misunderstandings about what I'm actually capable of during those days when I just want to crawl into a hole somewhere and disappear. There are people from my past who have only known me as a strong an unbreakable person who have had a hard time seeing me in this place and it has led to misunderstandings of what I'm capable of. It's my nature to do my best to rise to the occasion to my own detriment so you have to not expect that of me.

We're talking about January, February and March and the only reason I'm not contacting folks individually is because the last five months have been such a haze I really can't remember who made the offers...though Nita, I think you were one of them! Just email me and we'll see what can happen. For the record, January and February are brutal weather wise which I guess is true most places, though if you ski you would have nearby opportunities for that. March is a fickle month of wind, brilliant sun, some of our deepest and wettest snows, but with a blessed promise of spring. If I can make it to March through all of this with my resolve intact, I will feel blessed indeed.

2010-11-23T05:50:00.000-08:00

Round two down ~ four more to go.

Anne and I went down to Albuquerque yesterday, through cold, wind and light snow flurries, as our winter storm passed through. Since Mike took his Coli with him to work, both of the dog boys, Willie and Duffy, came with us. They were of course very happy to be on a road trip and they love their Auntie Anne who took them for walkies!

The infusion was easy again, other than the nurse having a hard time getting the IV into the vein on top of my hand...painful. She explained that they use the hand because it is much less of a problem if the drugs leak into that area than at the elbow. In the end, she found a big vein that wraps around my thumb and that worked very well.

Once again, my words began to slur about the time the benedril in the pre-med hit and I settled in for a long nap. I asked what I could expect from future infusions in the way of side effects and unfortunately, the fatigue and neuropathy are likely to get worse.

I had an appointment with my oncologist before I headed up to chemo and she told me my blood levels are all really good so I am cleared for the full six treatments allowed on this trial. The exception to that will be if the PET/CT scans I have scheduled for December show the adrenal tumor has grown.

I told her about the neuropathy nerve pain and weakness that I have had in my left leg and both she and the protocol nurse said it didn't sound like chemotherapy neuropathy at all. Of course her first concern was the right temporal brain tumor. She has been gone for four weeks so didn't remember that we just did a brain MRI in October that showed the tumor had shrunk.

Still, she did a neurological exam of both legs and as I expected, I have no response in my right foot and diminished in my right knee...expected because I have had nerve damage from a ruptured disc in that leg for years. My left foot had diminished response and my left knee had abnormal response which is new. She said none of the exam showed any signs of the problem being a result of the tumor but she is scheduling another brain MRI in December just to be safe.

Her feeling is that the nerve pain and sensation I am having in my lower torso and left leg is new damage to the ruptured disc which most likely happened somewhere between being loaded on the helicopter and during the craniotomy which I had been suspicious of too since the new low back pain had started after I came home from the hospital. Of course my concern is a spinal lesion so I need to ask her if that would show up on the PET/CT scans and do we need to take another look at them.

Also, my mistake! I misunderstood and the deep bone and joint pain I'm expecting to hit Wednesday and Thursday is from the taxol, not the temodar! Still, pain is pain no matter what is causing it. I also asked if it would be a problem for me to go back on cymbalta while on this drug trial, which it isn't. The reason is that cymbalta worked really well on the neuropathy pain in my upper body that was from surgeries, plus, it took my anxiety levels down to nothing. This new and more intense nerve pain has started me back into a cycle of anxiety that has been escalating so I'm going to stop that business before it has a chance to get a stronger hold on me.

2010-11-21T13:49:00.000-08:00

The Social Security Disability Process

A couple of weeks ago I finally pulled myself together around the need to apply for SS disability and medicaid and found an attorney to jump through the hoops for me. Even though most people don't use an attorney, I knew my mental glitches would make it too difficult to do alone.This is something I really should have started two years ago but I just couldn't get my head around it. Once I got into the process I began to understand why. It's the finality of saying that I believe I will never be an income earner again.

Two years ago I refused to accept that idea. I was completely okay with closing down Black Horse Design and letting go of my identity as an artist. That was when I started working on the idea of expanding my teaching role with the riding school and teaching healing classes. I think all of that would have worked out fine if the beast had remained sleeping. Unfortunately, June's events brought even that to a screeching halt. My brain no longer functions in a way that will allow me to teach. I process things too slowly and the glitches in my language skills make it too hard for me to communicate quickly. Plus, that is no longer where my heart lies. Though if things ever settle down again, I would like to resume the healing classes for which there was no fee charges, just an exchange of knowledge and experiences.

It's partly a matter of pride, of which I have more than my fair share. I have always taken great pride in my ability to be a good income earner. Then there is the matter of filing for SS disability under the new 'Compassionate Allowances' rulings. Basically what that does is say that your chance of living long enough to jump through the usual six months to a year or more of hoops by applying, getting turned down, reapplying and getting turned down again, and finally taking the whole mess to court, is something you aren't likely to live through.

Instead, they came up with a list of cancers and rare diseases that require compassionate allowance to fast track you through that whole process, giving you approval in weeks rather than months to years. It's a really good thing and even though I refuse to believe the dire prognosis this disease has given me of late, there is a crawling of my skin and a clenching of my stomach every time I think about the rulings that are making it possible to get this process done quickly. Basically by their terms, I am 'terminal'. But then, aren't we all?

On Tuesday I spent several hours putting together a huge amount of information that my attorney needs for the process and I was so grateful for this blog. All I had to do was go to my archives starting in September 2008 and work my way forward. Every single process and date was right there for me to record. The only thing I actually had to look up for her was each of my doctor's contact information. I was even able to list every scan, where it was done and the dates.

What I hope will be the final step for me was a phone and email interview with a Social Security representative. If things go as they have with other Stage IV Melanoma patients, I might have a check in my account before Christmas. I am hoping that by doing this, it will take some of the income pressure off of Mike. It won't be a huge amount of money each month but it will cover our land payments at least and when Medicaid kicks in for me, it will take a some of the insurance pressure off of him too. So it has become another of those things that I might not want to do, but I do it because the demands of this disease make it something that needs to be done. Like getting through the next round of chemo on Monday.

Mike had to head to Louisana to work this time around and I won't have his moral support to get me through the next infusion tomorrow. Our friends have stepped in once again and I have a much better understanding of what I am up against this time. It doesn't help that we have a winter storm coming in tonight but I'm ready for it. Besides having plenty of firewood up on the deck, I have two kerosene heaters moved up and plenty of kerosene to burn in them. I also stocked up on plenty of easy to prepare foods for the next week.

Unfortunately, making it to our neighbor's annual pot luck Thanksgiving dinner will be out of the question. Thursday will be the worst day for me for the oral temodar side effects. Friends will be bringing me plates of food though and hopefully, I'll feel well enough to eat them and share a bit of company!

2010-11-11T09:49:00.001-08:00

The great mustang + 1 migration to the winter grazing grounds. (At least that's what I call it!)

In the spring after the majority of the snow has melted, and before the spring rains start, we move all 12 of the slow feeder hay bags up the slope of the mountain to an area that is well drained due to excellent run off formations. This gives the guys a place to eat their hay without standing in muck.

Unfortunately, that same good drainage and run off turns that area into a dangerous ice field in the winter. So in the fall, before the snows come, we reverse the process and move the hay bags down to an area on the low side of the road. This year after Mike pointed out that I could use my toyota 4WD truck to drive the hay to the bags and stuff them once a day, we moved the bags down along the road to the arena.

This is the sunniest and warmest part of the property all winter long so the guys will have a warm, sheltered, and relatively snow free place to eat all winter and I won't be trying to drag a hay cart through the snow in my current weakened state!

It's good to share!

Llego and Brillo

Corazon and Valeroso

Or not!

Griton

2010-11-05T11:09:00.000-07:00

An inspiring anniversary!

Just look at this beautiful, sweet, kind and loving face! Happy and safe in his world after overcoming terrible and life treatening treatment. Remember this photo taken on the day Brillo came home to us last year?

He was so sad, weary and beat down we weren't at all sure he would be able to survive.

Brillo was emaciated and had clearly been living on his own muscle tissue for quite a while.

Today Brillo is sleek and round with healthy and well defined muscles. His frame is no longer dominated by the shadows of spine, hips and ribs.

His joy and contentment are clear and he charms every visitor with his happy nickers of greeting. I love seeing his beautiful face watching for me as I come out to feed him.

Sharing lunch with Huey the Goat.

It was a bit hard for me to walk back out this morning to take photos because I seem to have hit the low point in red blood cells. Walking that short distance was tough and left me panting. It was oh, so worth it though. I miss taking photos of the beautiful and inspiring things here and then writing about them.

This photo...wow...I think this has to be my favorite! I'm going to hold on to this one as inspiration for getting through this rather difficult winter to what I know will be a beautiful spring, filled with growing things and riding my beautiful Brillo!

2010-11-02T15:22:00.000-07:00

An emotional and spiritual check in.

I've been so focused on observing and participating in the physical process of all of this that I haven't spoken much about matters of spirit and emotion. I'm still feeling very much that all of my emotions are right on the surface...shoot...I cry at commercials on TV! It's a bit amusing and also kind of nice to feel things so immediately and freely, even silly things.

Am I afraid? No. What would the point be in wasting energy and feelings on fear? I don't know when or how I will leave this body. I could have died any number of ways just walking around up here over the last eight plus years. Then what about all of those years Mike and I drove around the country going to art events? I think my odds against cancer are better than they were with east coast or Texas drivers.

Sad? Sometimes. But only when I see what a toll this disease takes on the people who love me. A friend made a comment to me about how I manage to find the positive in the middle of so much that could be seen as overwhelmingly negative. Every time I start to feel the least bit sorry for myself, I only have to look over at Mike, look out at this beautiful mountain that I have been blessed to live on for eight years, feel the presence of our horses and dogs and our caring friends who are unfailingly here for us, and there is no room for me to feel anything other than held up in love and faith.

The bone pain wore me down, as did that horrible tumor and biopsy pain, but I knew there was an end for both of those. I can get through it, one step, one day, one hour or even one minute at time if I need to. And I'll do it with as much grace as I can manage, both because that is who I am, and because it is a small thing that I can give back to those who are giving so much to support me.

I can live my life without feeling sorry for myself or indulging in wailing or moaning that life isn't fair. No, life seldom is fair but that's what free will is all about. We may have little control over the obstacles we meet on our path, but we have every choice in how we perceive and deal with them.

Yesterday was another rough one with nerve pain running through my body like getting hit with a cattle prod. I think it spiked because the weather turned cooler. Thanks to Mike, I spent most of the day indoors napping after a really hot shower and trying to rest. Today I feel spaced out, like I'm very stoned. It's almost like being in a constant semi-dream state.

I'm cold most of the time now and have on many, many layers. I guess that is something to be grateful for losing weight around since my jeans are loose enough to manage many layers. My head is cold and I guess will be even colder when Anne comes over later in the week and helps me cut the remainder of my hair off. Soon hats and scarves will be as constant as wearing underwear.

So today's state of the union is that I'm getting through each day as it comes with peace and gratitude.

2010-10-31T07:55:00.000-07:00

One round down.

Yesterday I took the last of the temodar, dex and zofran for this round. I had graduated from bone and joint pain to peripheral neuropathy but that's an old companion for me from lymph node dissection two years ago and I know how to deal with it. This morning I'm feeling better than I have in days and I'm hoping I can even avoid being oxycodone unconscious most of the day since I am not feeling compelled to go take any pain meds yet.

I feel very blessed that I still have had no nausea, especially since Mike made the best Texas style chili yesterday and we had it heaped over freshly baked cornbread with lots of grated cheddar. We love New Mexico chili but we both sometimes really miss and crave the good old Tex Mex version we both grew up with. I was afraid it might upset my stomach or give me acid so I held back on how much I really wanted to eat; but fortunately it only left me with a very happy mouth and I'm looking forward to round two for dinner tonight when it will have even more delicious flavor.

I have been losing weight but it isn't from not eating. I've been doing my best to eat every high calorie favorite food I love along with a healthy diet too. I'm sure the weight loss is due to the chemo drugs and what is happening in my body so as long as my digestion can handle the calories, I'm piling them in so that I don't get too thin. What a great guilt-free opportunity to eat those foods I would normally ration myself. If Anne can find me some good gnocchi, I'm planning a hearty pasta dish of fresh gnocchi with spicy turkey sausage and asparagus. YUMMM!

The chemo nurses told me staying hydrated was very important to keep my kidneys flushed and functioning right and that bladder infections are common so I have some very good pure fruit juices including pure cranberry that I add to all of my water. Since cranberry has that magic ingredient that prevents bacteria from attaching to the bladder, I figure prevention is my best bet.

As I come off the need for oxycodone to manage pain, it will be interesting to see where my blood based fatigue levels are. Like neuropathy, fatigue has been no stranger to me these last months following brain bleeds, surgery and radiation. I know from all of that I can get through it, one step at a time which always makes me feel more empowered.

The weather has been stunningly beautiful as it only is here in the fall of this area of New Mexico. I have been driving poor Griton crazy grabbing is big curly haired grey butt and hugging it. Can you beat the intoxicating smell of a horse on a cool fall morning? Sweet boy, he indulges me every time!

2010-10-29T08:53:00.000-07:00

Temodar has officially kicked my butt.

I'm sure glad that chemo nurse warned me about what was coming with temodar. Fortunately, only today and tomorrow left on the dosage. And thank goodness for oxycodone and xanax because I did manage to get some good sleep last night. I'm better this morning, less grinding ache in my bones and joints and hopefully that won't change when I take today's dose. When that nurse heard what I have been through since June...brain bleed, craniotomy, Gamma Knife...she also told me there was nothing this chemo could throw at me that would be even close to what I've already been through. That was reassuring!

Still no nausea at all, the thing that is usually worst for folks on chemo and for that I'm grateful. Mike took Coli for her vet check up yesterday since we've been concerned she might have a bladder infection (she doesn't) and then he did all of the shopping and town errands so I could hide under a comforter in my recliner.

He brought home one of those giant oven bake lasagna trays so we wouldn't have to cook and it was surprisingly good. He has promised to make chili now too. Mike is a fantastic cook and it's always a treat when he gets the urge to make something. His green chili stew is one of the best on the planet and something I always look forward to when winter comes.

So I'll be moving slow again today and hoping my bones and joints continue to settle down. Two more doses as I head towards the low point and then the slow climb back up. Even though I'm down from three doses of steroids a day to one, I'm still feeling very fragile and emotional.

It's looking like it will be a beautiful day today...not even close to freezing this morning and I'm thinking I can manage to sit in a warm truck this afternoon and work on getting our water storage tank filled back up.

2010-10-28T07:29:00.000-07:00

Fuzzy horse update.

Lori asked how the Wild Boys are doing and I have to tell you, they are fat, furry and fabulous! That mustang genetics is so well programmed that as soon as the days start to get shorter everything they eat goes to fat and fur. I love watching the biestie boys go from sleek hunks to cuddly teddy bears over just a few weeks.

The exception, of course, is our winter coat impaired TB, Brillo. I knew lugging around the heavy wool lined canvas turnout rug that he wore last year would be rough on me this winter with chemotherapy going on so I ordered him a purple plaid, completely waterproof, hollowfill winter blanket for this winter. It fits him perfectly and is light and very warm. It also has a stitched in extended neck piece so our less winter hardy boy won't even have water running down his collar.

I'm hoping to feel well enough to go out and take photos of Brillo on his one year anniversary date. It is so amazing to see the difference in one year in this boy. Those photos I took on the day he arrived still stun me. He was so sad, weary and starved that day. Today he lives up to the name Mike gave him with his brilliant spirit, heart and zest for life shinning through in every way.

I realized that all of our horses except Llego and Mio have their own survivor's story. Their abilities to live joyfully in the moment, forgiving and releasing the weight of their pasts are a constant inspiration to me. I love nothing more than going out and sitting with our boys and soaking up all of that strength and desire to live. There's nothing better than burying my face and hands in Griton's curly winter coat as I give him a hug.

Lori also asked about snow - the higher peaks around us are all covered but nothing at our nearly 8,000 foot elevation yet. We only started getting our first night freezes this last week so the promise of a warmer, dryer fall has been true so far. This time last year we had already had our first four inches of snow. This year we have had two nice late rains which have kept us from being too dry and I'm very grateful for the easy warmth as I get through these treatments.

And speaking of treatments, the temodar body pain hit me yesterday afternoon with a vengeance. It's a dull, constant ache in my bones and joints, mostly my pelvis, hips and knees. I didn't get a lot of rest last night in spite of oxycodone and xanax so hopefully today will see it easing off.

2010-10-27T07:12:00.000-07:00

Day three ~ how it's going.

For the first time in more than two weeks, I abandoned the recliner (sorry Willie!) last night and slept peacefully with Mike in our own comfy bed! The steroids have me feeling weepy, emotional, fragile and occasionally a bit tense, but I'll take that any day of the week to be free of that relentless pain.

I was able to climb into bed and get comfortable on my back with no immediate knifing of pain through the tumor site and radiating down through my torso. I could turn on to my side without the pain slamming into me, locking all of my muscles into reactive spasms and leaving me whimpering with it as I tried to turn over to get out of bed, make it down the loft steps and pace the floor holding myself. The only thing that would help at all by then was sitting in the recliner with a large ice pack on my back.

Because those nerve pathways at the tumor and biopsy site lead right to the intestines and bowels, the pain would spike a few hours after I ate so I found myself unconsciously skipping meals and only eating the most bland of foods to try to stave off those attacks. My doctor had even prescribed dilaudid to see if that would help but the only thing that got me through the last brain MRI on my back in the tube was 20 mg of oxycodone and that was just to make it bearable.

So, bless the steroids for getting me free of that relentless, searing pain that was dismantling my mind more completely than anything else has been able to do. Being able to feel safe and loved next to Mike all night was some of the best medicine I've had to date.

I haven't felt a bit of nausea so those meds must be doing a good job too. Now that I'm not afraid to eat anymore, my appetite has come back big time, probably with the help of the steroids. Unfortunately my taste has been affected and foods don't taste quite right but I haven't let that stop me!

Maybe because the carbo and taxol were infused right into my blood stream, I haven't felt much from them at all. Mostly it was a long, boring and tiring time in a not very comfortable chair. Of course all of that benedril they gave me in the beginning probably helped to make that a smooth ride! Someone asked what would have happened if I had of had an allergic reaction to the taxol - I was assured that doctors were standing by and they would have just upped the antihistamine protocols to find a level that would work for me. It would have meant more intensive follow up blood work to make sure I was staying stabile but the majority of people can continue with the treatment.

I am 'feeling' the temodar that I take orally once a day the most. I'm feeling pretty great when I wake up the mornings then I take steroid and nausea meds at 10:00 followed by temodar at 11:00. An hour or so later I feel heavy, like I have lead in my veins and I get a mild headache. Nothing serious or troublesome but it does slow me down for the rest of the day.

All three of these drugs work by stopping fast growing, fast dividing cells which not only includes cancer cells but also bone marrow, the lining of the mouth and digestive system, and of course hair follicles. Each of these drugs work at a somewhat different phase of cell division, one during the active phase, one during the resting phase and so on.

Today or tomorrow, I will be hit with the temodar body effects - an aching in the bones and possibly a mild fever and chills. I was assured it wouldn't last longer than 24 hours and as long as I didn't have a fever over 100, I should have no problems. My bone marrow is already being affected and I will hit the low point in white and red blood cells at about day 14 of treatment which will be around November 8th. After that my non-cancer cells will begin to recover and by the time of my next treatment, my red and white cells should be back to a level where I can resume infusions.

That mid-period is when I will feel the most fatigue and will have to be absolutely careful about preventing infection sincy my body's ability to fight anything off will be at its lowest. That means always wearing gloves, constantly washing my hands, using antibiotic gels, wearing a mask around anyone with a possiblity of a viral infection and avoiding groups of people. I also have to avoid raw fruits and veggies for the duration because bacteria that my body would normally have no problem with could lead to a serious infection. It's all a small and temporary price to pay in order to continue being here for my loved ones and the life we have created.

That 14 day mark is where my hair will also begin falling out in earnest. I intend to avoid the idea of 'wear a hair net so you don't wind up with hair in your food!) by having it buzzed before I get to that point. I've already stocked up on a nice assortment of soft fleecy caps and pretty scarves that I can artfully tie around my soon to be bald head! I don't think the bald look is for me, especially since we are already getting up to lows in the 20s!

If this treatment is working for me, which we will know towards then beginning of December, I will probably stay on it for six months which means I'll be bald all through winter. I was told the American Cancer Society would give me a free wig but I just can't see myself doing that. My mother wore a cheap wig all through chemo and my father insisted she wear it when they went anywhere and I guess I have that image stuck in my memory of him being embarrassed by how she looked.

I intend to proudly and openly carry my fight with the honesty I have tried to maintain through this entire journey. Mike has shown me over and over again that he loves me, not the beautiful waist length hair I used to have. Maybe my ability to maintain my identity will help someone else to find that strength as well.

A short doggy update - we took Duffy to the vet yesterday for his persistent diarrhea and he didn't have a fever and all vitals were good so he is simply on a five day course of antibiotics. After just two doses he is no longer gassing us out of the house and I didn't have to get up and let him out even once during the night. Plus, he thinks he's pretty darned special that he got to go for a ride in the truck with no other dogs and get lots of pets and attention from the folks at his clinic!

2010-10-26T09:32:00.001-07:00

One down!

For the most part, the infusion yesterday was a piece of cake, other than being about three hours longer than I was told. Several reasons for that which shouldn't have to be repeated next time.

First, the medical orders hadn't made it up to the oncology floor so my protocol nurse had to be tracked down and a doctor lined up to enter the orders into the system since Dr V is now gone on her three week trip. After that, the meds themselves had to be prepared by the pharmacy which took a while.

Then, I hadn't been told there is a one hour pre-med infusion where they fill you up on anti-histamines, anti-nausea meds and steroids in hopes of avoiding any problems during the drug infusions. After that infusion, they did a one time allergy test for the taxil since 10% of the population is allergic to it. All that involved was pushing a small amount through the IV to see if I would have a reaction. I didn't.

Next was the real deal...a three hour infusion of taxil which I slept through thanks to the benedril in the pre-med. Mike went down to walk the dogs about then since we had brought all three with us. Unfortunately he discovered that Duffy still wasn't quite done with a bout of diarrhea which he had left on the dog beds and Willie had laid in.

What followed was a story that would have been funny if he hadn't still been exhausted from his stint in ND, the drive back home and beginning the process of trying to get things caught up around here. He took all three dogs out on leashes, never an easy job, and walked them but no action from Duffy. When he brought them back to the truck, Duffy refused to get in, slipped his collar and took off.

Mike said he slipped Coli and Willie's leashes over the trailer hitch and took off chasing Duffy around two parking lots while Duffy ignored him. Finally Duffy found the spot he must have been looking for and left a huge deposit. Then he was willing to come back to the truck. When Mike got back there, he discovered Willie had chewed through or broken his leash but some nice person had tied it back to his collar.

Finally, he got everyone back where they belonged with only a minimal amount of poo on the dog beds and Willie to clean up when we got home. After that, he took Willie and Duffy out separately with perfect Coli off leash in the parking lot since she is the only totally trustworthy dog we have!

Mike has had to be gone for so many of these appointments and procedures and I understand that, since he has been thrust into being our sole provider. It has been hard for both of us though, and I can't even express how much it meant to me to have him there, sitting in an uncomfortable guest chair and holding my hand as I slept through most of the procedure.

I love you sweetie...I know this is just as hard on you as it is on me, maybe even more so, and I wish so much that neither of us was going through what we have been for over two years now.

2010-10-22T18:12:00.000-07:00

Dang!

Well, now we know why my doctor was so concerned about whether or not our insurance company would approve the chemo prescription, and if they did, what our co-pay would be. If we didn't have good insurance, those 10 pills I picked up today would have cost us almost $3,000. Geez.

Mike got home around 5:00 pm. Can we all say YAY!!! I am thrilled he is home and so are all of the puppies, especially his own puppy, Coli. He is going to ask for two full weeks at home so that he can be here with me all the way through this first week of chemo starting on Monday and then a week beyond.

We just got through eating a really nice dinner with dogs eagerly waiting for their table treats. Mike is worn out, as he always is after a difficult project followed by that very long drive. I'm waiting for pain meds to kick in and then we'll all be falling asleep.

2010-10-20T20:15:00.001-07:00

It's show time! And other odds and ends.

Well, our insurance company approved the prescription for temodar and my first infusion will be next Monday. We're still waiting to hear what time but we're on the way to a treatment! Odd how excited I feel to finally be making a move, even though I know it means nausea, fatigue and total hair loss for up to the next six months.

I feel really good about this, the same way I did about the Gamma Knife Surgery. True, Gamma Knife turned out to be tougher than I expected and this may be too, but I know I'm strong enough to handle it and I have a wonderful world of support in Mike and our friends to help me get through this.

My doctor told me that an adrenal tumor biopsy is one of the most painful because of all of the nerves that radiate out of the spinal column in that area. Plus, they have to go through the lung to get to the adrenal gland to remove the samples. Ever since the biopsy I've had intense acute pain that gives me the feeling of an ice pick stuck in my back and twisted every time I move or breathe, and mostly at night which has kept me from any kind of real rest.

After trying several other things, this last appointment she gave me a prescription for 10 mg of time release oxycodone to be taken every eight hours and I think we are finally getting a grip on the pain levels. I really wanted that to happen before the first infusion because as high of a tolerance for pain as I have, this constant level of nerve pain has worn me out physically and emotionally. And...I wanted to feel better before Mike gets home again on Friday!

Yep, Mike just finished up the well he was working on in North Dakota and will be heading home in the morning! He'll be here to help me get through this whole first chemo treatment which is such a relief for me. Once I get through the first one I'll know what to expect and my Healing Team will be going full throttle and it will be that much easier for me to manage future infusions if Mike has to be back up north.

Something a bit amusing, before I left Dr V's office on Monday, she told me that this drug combination would go into my brain. I was pretty brain tired as it was late in the day and I couldn't quite figure out what she meant. I was immediately imagining more weird brain effects. I started laughing and asked her if that meant just when my family and friends have finally gotten used to my current mental loopyness, would there be more surprises for them?

She explained no, she meant this combination will cross the brain blood barrier and if effective, would knock out any remaining tumor cells that might be left in my brain. Cool, because there are very few drugs that will do that, especially with melanoma. Then she did something that I thought was really sweet. Dr V knows that Mike hasn't been able to be here with me because he has had to be up in North Dakota keeping the bills paid and keeping us with good insurance.

She turned to Anne who had driven me down that day and was in the office with us and said, 'Keep taking good care of her!' I don't know how it made Anne feel, but I was so touched that Dr V acknowledged what our friends have done to help while Mike couldn't be here to do it himself. It still makes me a bit teary!

Thank you Anne and Carolyn for helping us to keep things going up here on the mountain, and for being my own personal shuttle service without question or consideration every time I've needed it. It's been long days of driving and hours spent waiting with me and I hope someday I can be able to show my great appreciation in even some small way. I love you both, my friends!

2010-10-19T14:05:00.000-07:00

Finally, some positive news. And a game plan.

So let's get to the positive news first because I am ever so eager to finally share some! As you may remember, I had a brain MRI last Saturday which turned out to be the least eventful of my many recent appointments. Carolyn picked me up, we headed to UNM and I was immediately checked in, managed the MRI with the help of 10 mg of oxycodone for the still intense back pain I am experiencing. We headed home and even got here before dark.

Yesterday Anne and I left early so that I could have my last fasting blood test done and go and get lunch before my appointment so that I didn't have to sit, wait and starve. When we were finally taken back for my oncology appointment, the first good news we got was that Saturday's MRI showed that the primary lesion, the golfball tumor as we call it, had shrunk by 50%! The smaller lesion has remained stable at less than 4 mm since the Gamma Knife Surgery was done and my oncologist feels that it is now most likely just a bit of scar tissue still reacting to the contrast.

The next bit of great news was that the pathology done on the biopsy material collected from the adrenal tumor on the 11th showed only sparsely scattered tiny amounts of melanoma cells. There was even question if there were enough cells to send to France for DNA analysis (there is, it only takes a couple of cells).

For a long time I haven't even thought about receiving bad news at these visits; but after the last few months, I admit to having a bit of a clench in my stomach when I walked in. I was very afraid I would hear that what was brought out was tissue from a dense mass of rapidly dividing cells. Yay body!

Now the rest of the story...

Unfortunately, the samples had not yet been sent to France for analysis so we still don't know if I am c-kit positive or not. Also, my oncologist is leaving later this week and will be gone for three weeks. That means I would wait at least three weeks to start treatment even though the samples were sent out yesterday.

And then, what if I am negative? I would wind up waiting at least another month to start some kind of treatment and we all agreed that wouldn't be a good idea. The last couple of weeks have been oh so not fun. The pain from the biopsy and back issues have kept me sitting here fairly immobile, mulling and fretting instead of being able to do the things I had planned to do 'while I still feel good'. Not to mention that all of this waiting has been even harder on Mike, being so far from home and not able to do anything proactive to help me.

The decision we made was to immediately start the carboplatin, paclitaxel and temozolomide drug combination study. Right now I am waiting to hear when our insurance company will cover the prescriptions for the temozolomide, also known as temodar. As soon as that is cleared, I will be scheduled for my first four hour infusion of carboplatin and paclitaxel, most likely next Monday. The temodar is a pill taken on the 2nd, 3rd, 4th, 5th and 6th days after the infusion. Twenty-eight days later, the cycle will be repeated.

After two 28 day cycles, I will get another set of scans to see if there are any changes in the tumor. If it is either stable or reduced, we can continue for up to six cycles or until the tumor has regressed enough to remove the entire adrenal gland and tumor. If we don't see positive change and I am c-kit positive, I can go to the masitinib trial at any time.

Yes, I will lose ALL of my hair. There will be nausea and fatigue to deal with and maybe a few other side effects but those are the ones we know of for sure. So for the balance of this week, I am trying to rest and get ahead of this constant pain in my back and hip from both the biopsy and a disc problem. I sure don't want to be strapped in a chair for four hours and feeling like crap with intense back pain on top of it all!

That's the plan and it's amazing how much better I feel just having a plan to follow and action to take.

2010-10-14T09:04:00.000-07:00

Cancer certainly isn't for the faint hearted...or for those with a low tolerance for pain.

The biopsy on Monday was far more difficult and dangerous than I ever expected. I had to fast from midnight on the night before because I would be lightly sedated for the procedure itself and I found out when we got there, also because of the potential hazards that might require full sedation and surgery.

I got there at 10:00am and shortly after that I was taken in to the CT scanner where they put me on my stomach and immediately started me on IV fentanyl so that I could tolerate the pain of staying in that position unmoving for an hour or more. I had nagged everyone so much about whether or not they had everything they needed to get the samples to France that finally, someone pointed out two nurses who were standing by waiting with the canisters and media necessary for shipping it off! I'm glad I was so persistent because as it turned out, doing that procedure over again is absolutely something I never want to have to do.

Shortly after the first CT scan to locate the adrenal tumor, the doctor explained to me that due to the location of the tumor, there was a chance they might pierce my lung, causing it to collapse. I was so out of it by then from the fentanyl that all I said was 'What would you do if that happened?' She responded that they would have to put in a chest tube to keep me breathing...all I said was I guess we better make sure that doesn't happen.

Well, after being slid in and out of that tube for nearly four hours while they took multiple samples, I discovered that almost exactly that had happened. They did nick my lung but only collapsed a small portion of one lobe. When I was moved into recovery at 2:00pm, a nurse came in every hour to take a portable xray of my chest to make sure the lung hadn't collapsed any further.

Finally at 5:00pm I was released to go home, after roughly 18 hours without any food or water. Since Mike is still stuck up in North Dakota working, Anne and Carolyn had taken me on this particular jaunt and after an essential dinner we headed home. We didn't make it back until after 9:00pm. Exhausted? Yes. But still horses and dogs needed to be fed.

I was tired but between all of the lidocaine they injected at the biopsy site, and around four hours worth of IV fentanyl, I was still not feeling too much pain on Monday night. That came later. I woke up with nearly intolerable pain Tuesday night and I have to say, pain from that biopsy and partially collapsed lung didn't beat a tumor bleeding into my brain or a craniotomy, but it was up there in the top five of the worst pain I've ever experienced.

I'm still dealing with a considerable amount of pain, mostly at night, but with bad spikes during the day as well. Part of the problem with sleeping is that I am limited to lying only on my left side due to the biopsy on the right side of my back. Any pressure there is impossibly painful but after a few hours, my left hip and shoulder are screaming too. It got so bad last night that about 4:00 this morning I finally got up and decided to sleep in my Recovery Recliner.

I had Willie snuggled up next to me with his head in my lap and a soft fleecy blanket over both of us to stay warm. I can use pillows to pad things around so that I don't have pressure on the tumor site and I think this might be a good solution for when the pain gets out of control at night. Willie certainly thinks so! It's a relief to know that I can get rest if I'm too uncomfortable in bed.

So one particularly difficult procedure done, the brain MRI on Saturday and finally on Monday we might be ready to get on with things.

2010-10-08T17:49:00.000-07:00

My canary in the coal mine.

That's what I'm affectionately calling this new tumor. Yes...affectionately. What would be the point in hating something that is part of me? Yes, I want it gone and hopefully, it will be, but hate is an awfully destructive emotion.

And this tumor is about to do me a really big favor. It will be helping us to find the key to unlocking this particular melanoma's ability to divide and conquer. Imagine it, just like when those caged canarys died letting miners know the air was bad, when we find the combination that begins to shrink this tumor, all of those potential clumps of melanoma cells that are too tiny now to show on a scan, will be shrinking too before they ever have a chance to be discovered or to do harm. Looking at it that way, I'm actually grateful for my Canary in the Coal Mine.

I have the schedule of events now:

Monday, October 11th I will be having a biopsy taken of this adrenal tumor that will immediately be shipped to France to be genetically analyzed for the c-kit protein mutation.

Saturday, October 16th I'll be back at UNM for a brain MRI to both check on those two tumors treated in July and to check for any possible new ones.

Monday, October 18th it's back for an appointment with my oncologist. By then she will have the results of the biopsy back from France and we can decide on what treatment protocol I will be going into.

If I am c-kit positive it's straight into the masitinib study. Assuming I'm positive, I've been concerned about winding up in the dacarbazine arm of that study because it is some real mean stuff. There is a very small percentage of people who die from it before they ever have a chance to die from melanoma. I asked her how many cycles of the stuff I would have to go through before we could conclude if it was doing anything helpful and I could move on to something else? She assured me it would be no more than two 21 day cycles with two infusions. Whew. I can manage that!

If I am c-kit negative, I will go right into the combination drug trial which is one hour infusions every 28 days. I good span for recovery in between chemo dates.

And now you know what I know so far, other than that I have a really healthy heart and all of my blood labs are in healthy and normal ranges. The only problem I am having is escalating pain from the tumor. It was incredibly bad last night which really scared me and then I finally put it together today that it gets really bad about an hour after I take that new pain med. I have some weird reactions to drugs, like getting severe kidney pain from drugs like advil. The adrenals sit right on top of the kidneys and these intense waves of pain I'm having are an awful lot like what I've experienced with OTC meds.

I stopped taking it and went back to a combination of acetaminophen and oxycodone this afternoon and evening and about an hour after I go to bed, I should have my answer to that little mystery and can relax just a bit.

2010-10-07T05:54:00.000-07:00

We're getting there.

I'm up early but very tired today because those long days in Albuquerque always take so much out of me. Also, the pain at night from the tumor has gotten worse and it has really disrupted my sleep. I asked Dr V for a new pain management prescription yesterday and we'll see if it helps.

With the help of our friend, Anne, who drove me down to Albuquerque, I spent all day yesterday getting a whole lot of pre-qualifying tests out of the way, saw my oncologist, and get appointments set for the balance of what needs to be done. Plus we found time for a really nice lunch, a glass of wine and a bit of fun.

On Monday the 11th, I will be back at UNM for the tumor biopsy, then Saturday the 16th will be the new brain MRI followed by another visit with my oncologist on Monday the 18th. By then Dr V should have received the genetic analysis of the biopsy that will be taken from the tumor next Monday and she and I will finally be able to make a treatment choice and get on with things.

If it turns out I am positive for the c-kit mutation, then the treatment choice will be easy and I will go into the study that has a targeted treatment approach for that mutation. One of the things I had become concerned about was managing dicarbazine which is a really rough chemo if I wind up in that arm of the study. I asked Dr V yesterday how many cycles of dicarbazine I would have to get through before we could determine if it was having a positive effect.

She assured me it would only be two 21 day cycles followed by a PET/CT scan and if there is no change, I would move on to a different study. That was when I found out that she has a second study going which also is a targeted approach for positive c-kit patients. So the hope now is that I do turn out to be c-kit positive so that I can be in one of these two studies with a far less toxic approach to treatment.

If I'm negative, it will be straight into the Phase II study that combines drugs. It's really nice to be able to make these choices based on solid information instead of guesswork which is what so much of melanoma treatment used to be. Once we know what drugs I will be on, my local Healing Team can get to work helping me with supportive alternative therapy as well as a nutrition plan that focuses specifically on how that drug works in the body as well as managing side effects.

So that's where we are today. Mostly I need to rest now because I've had draining, long days and because pain is keeping me from resting.

2010-10-02T13:01:00.000-07:00

It isn't the news we all wanted to hear.

Before you read further, check out my new absolutely short hair! I had actually made the decision to do this about a week ago as a Rite of Transformation. I am not the person I was a few years ago or most of my life; the person whose identity was so invested in having long, beautiful and glamorous hair that other people envied. She would have sacrificed her life to save her hair. Boy was she dumb! Anyway...I am loving this hair so much I wish I had of had the courage to do this years ago.

Some of you already received a personal email from me Wednesday night. I don't have a lot more information since I wrote that one but at least I have had some quiet time to read through the stack of information I received from my oncologist on available clinical trials.

And so that doesn't sound like such a mystery to those who didn't get that email, the PET/CT scans taken on Wednesday showed a new tumor on the adrenal gland on the right side located between my spine and liver. Even though my oncologist said it was still too small to be symptomatic, I had started feeling intense pain in that area on Monday night when I would lie flat on my back in bed. I hoped it was just muscle strain from moving some hay on Monday but I had a feeling it was something more.

That red circle is around the new adrenal tumor that showed up on the newest PET/CT scans taken last Wednesday.

This tumor could be surgically removed but my oncologist is concerned that if more pop up, I would be on a cycle of surgery after surgery until one day we got stuck with one that couldn't be surgically removed. She wants to try systemic treatment (a nice way of referring to chemotherapy) to find something that will stabilize or reduce the tumor and after that it can be removed.

There are two clinical trials I will be looked at for participating in with the goal of finding something that this lesion will respond to. This first one is a brand new Phase III French study that just opened two weeks ago. There will only be 200 people considered for this world wide which says a lot about UNM and my Oncologist as a cancer research hospital and doctor that I am able to have this as an option.

As with all Phase III studies, one half of the group will receive the new drug, masitinib, to half receiving the FDA standard of treatment for metastatic melanoma, dicarbazine. What this means is that if I qualify for this trial, I will have a 50/50 chance of receiving the new drug.

Masitinib is effective only on cancers associated with the c-kit protein genetic mutation. To determine if I have that mutation, I will have a needle biopsy taken from the tumor next week which will be sent to France for analysis. If I don't have the c-kit mutation then that trial will immediately be off the table.

The second trial is a Phase II study combining Carboplatin, Paclitaxel and Temoxolomide for patients with metastatic melanoma. Being a Phase II study means that I will receive those drugs and only those drugs. The purpose is to measure response rates to the combination of drugs. If I do not have the c-kit mutation, I will go directly into this trial. If I do have the c-kit mutation but wind up in the dicarbazine arm and it isn't effective for me, I can drop out of that trial and go directly into this one. Same thing if the masitinib isn't effective. This trial is only open to five people per year with a total of 50 participants.

If neither of these work, it will qualify me for compassionate use of the new drug, ipilimumab, which has received so much press lately for its effectiveness in metastatic melanoma. It has not yet been released for this use by the FDA even though it has been through all phases of studies so compassionate use is all that is currently available.

None of these drugs will be an easy journey but we'll manage with the assistance of our local community of friends who have already been such a huge help to Mike and me. In my usual way, I've read everything I can in order to be prepared and now we are starting to make plans.

I have an acupuncturist who is very experienced in working with the side effects of chemo as well as a Homeopathic Doctor and nutritionist who has done advanced studies in working with cancer and chemotherapy. They will be able to help me through the nausea and body pains and our two friends and neighbors, Anne and Carolyn, are already planning how they can help me to manage with the fatigue through the winter when Mike is off working to keep us financially afloat.

Some people think I'm crazy, and that's just fine, but I'm even starting to find the extreme humor of this new state of affairs by imagining creative ways of taking advantage of complete hair loss...hey, whatever makes us happy is just fine with me!

What follows isn't intended to hurt anyone's feelings. It is only things I have been experiencing the last few months that are really not at all helpful to me. Maybe if I speak out, once again, something everyone should be used to by now, it will make a difference to someone else going through a life threatening illness. ~

Don't say things to me that make me feel like you already see me in a grave. I don't see myself that way so why would you put something like that off on me? Who gives a damn about next week, next month, or even next year and what the odds against me are? I sure don't anymore. I am quite aware of the seriousness of this situation but I live here and now and maybe you should try that too.

Don't project your feelings onto me. No, I'm really and truly not afraid. I've had two years to come to terms with this disease and I got over fear more than a year ago. Sad? Occasionally, but it never takes me more than a few minutes to forget about that when all I have to do is look around and see how much joy I have in my life. Sad because of how this is affecting the people who love me? Of course. But there is only so much I can do to ease the path for them and then I have to get back to taking care of myself.

Don't tell me to not 'act strong' to protect the feelings of you and other people. Guess what...I'm not acting and I'm well aware that I am not responsible for your feelings. I AM strong. I've already survived way more than many other people have since I was a very small child and ever since I was that child, when someone told me I wouldn't able to do something, my internal response always was, 'Oh yeah? Just watch me.' Nothing has changed much about that.

Please don't question, second guess my treatment choices, or tell me what I should be doing. I've had two years to research all of this and thanks to the internet, I know about most news regarding melanoma and its treatment as quickly as the doctors do. I also have access to very educated and experienced alternative medicine specialists. Trust me when I say I doubt there is much of anything you can tell me about that I haven't already looked at and made my own decisions around. Insisting on laboring over those things with me that you have come across and think I should be doing is only losing time that you might be spending with me in more joyful ways.

If I need someone to talk things out with, I have an outstanding counselor who is herself a breast cancer survivor. She really does know how I'm feeling and what I'm going through and has shared this process with me from the day I was diagnosed two years ago. If I want to talk about something outside of counseling, I will initiate a dialog. The time to have been there to 'talk about it' was two years ago when I was first diagnosed and terrified.

We have so many dear friends who have proven themselves by getting me to and from the hospital when I needed it and Mike wasn't here, caring for our animals without ever being asked, offering to shop , cook and do laundry for me, carry up firewood and get hay, all of those little things I used to handle with ease when Mike was gone but can't now.

Those people are our real community and somehow they manage to have the grace and patience to allow me to do things at my own pace as I rebuild neural pathways. You have no idea how insulting it is to have someone take something away from me to do themselves rather than wait as I work my way through a process. The next time it happens, I may have to punch someone.

Our friends are people who respect me enough to believe I know what I can and can't do, and that I will call them when I really do need help. And I think more important than anything else, they make themselves available for the fun stuff too. We go to lunch together and often laugh uncontrollably about silly things. We 'talk horse' and will soon be riding together. In other words, these are the people who are willing to join me in focusing on the joys of life instead of seeing only the potential sadness and losses. Those are the people I choose to have around me now.

2010-09-24T14:03:00.000-07:00

Answering a question...

No photos today! Our slow dialup took forever to load those from yesterday. Robin asked a question from the comments section..."A question and I hope it doesn't offend... When someone pushes too hard or a color is too bright or a sound too harsh, you say your brain shuts down. What actually happens?"

First let me explain a bit about what aspects of my brain are functioning in a faulty manner ~

Vision: I have difficulty focusing. My peripheral vision on the left in particular is about one third of what it previously was. I have pretty serious problems with shape recognition. I am very sensitive to florescent lighting, bright sunlight and bright colors. After spending most of my life as a graphic artist with acute color perception, there are many colors now that I can't distinguish.

Hearing: language comprehension is often difficult for me when I am listening to conversations and particularly on the phone. I feel somewhat like I am in a crowded room where everyone is speaking a foreign language and I can only pick up a word or two here and there.

Comprehension: following higher thought processes can be surprisingly hard. Sometimes I feel like my old self and then I'm back to feeling like it's a foreign language. Written directions are particularly hard and getting instructions over the phone is frustrating on both ends.

Memory: not good. Not good at all. I lose words and train of thought for no obvious reason. I've figured out some tools to help me keep track of dates and other slips but it is an ongoing process. Since I have always been a visual person, I can often access language by visualizing myself typing on a keyboard and seeing the words on a screen. I keep dates by logging them on a mental calendar. I find my way back to objects I set down by taking a mental snapshot of where I put them.

The 'Brain Shut Down' ~ This takes two forms, the slow failure and the immediate crash.

The slow failure most often happens because I'm already tired from not enough deep night rest. It usually occurs when I am in a familiar situation with people I know. An example is Mike and I going into Walmart yesterday morning to get my new glasses and do the weekly shopping.

I had slept well so I started out almost my old self, energetic and clear about what needed to be purchased. As time passed in the crowded disorder of Walmart with bright florescent lighting though, I began to think and move more and more slowly. As I struggle to remember what it is I'm looking for, even with a list, and where those things are located in the store, I become increasingly confused and my brain actually begins to hurt. If I am by myself, I will often stop the shopping at that point and just try to get out of the store and to my truck where I can rest and let my brain recover.

This can also happen when I am in a group of friends, all wanting to visit with me. There are too many words, too many conversations and too many faces. It becomes more than my brain can process and like with Walmart, things slow down until I am really no longer functioning.

It is certain that after a morning of shopping, or lunch with friends, I will be too mentally tired to do much more than mindless chores or reading when I get back home.

The immediate crash occurs when I get a sudden jolt of over stimulation. A good example is every time I walk into Walgreens to get a prescription or some other first aid supply. The bright lights, bright colors, chaos of the store organization and often loud music, immediately sends me into a state of confusion and disorientation. I quickly have no idea why I am there, where anything is, and I lose the words to even ask for help. My only choice is to leave the store and give my brain a time out to sort through and process things.

I am really fine here at home and with Mike since we are used to being quiet with each other. When I have had house guests, or friends come over, one of the most frustrating things is the lack of shape recognition. I try to ask people to treat me as if I were a blind person and be aware that if they don't put things back where they found them, I'll soon be tripping over the furniture. As an example, a familiar kitchen tool left somewhere I don't expect it to be will lose its identity when I see it out of its usual context. I can look right at it and not recognize its shape because it isn't where I expect it to be.

When I have too much sensory or verbal input, my brain deals with the over stimulation or confusion by shutting down, taking a time out. That leaves me needing to get someplace quiet with a minimal amount of stimulation until I recover. This is something I assumed would get better but it isn't. In fact, it may be getting a bit worse. Again, it isn't a problem here at home where everything is so familiar and soft.

I won't allow it to isolate me either which is why I am coming up with these little dialogues to let people know when they have pushed me past tolerance. I have no problem telling strangers and people on the phone that I can't talk to them and why, or why they need to keep repeating themselves until I get it if they are telling me something important. It's not hurting the feelings of people I consider to be friends that has been hard for me. Hard for me to take care of myself first and directly tell people that I can't participate in something and yet not make them feel bad or guilty at the same time. More and more I don't worry about that and figure it isn't my job to make others feel good and it is my job to keep myself safe and unstressed.

Hopefully this is making some sense ~ at its mildest when the 'Closed for Repairs' sign goes up, I just feel profoundly tired, have a hard time putting thoughts and words together, and need to get away to a quiet place. At its worst, the world goes to shades of gray and closes in on me. I don't understand what is being said to me and lose my own access to language. I start to feel anxious with the over stimulation and the need to immediately get away from what is causing it. I know that I will feel profoundly tired for the balance of the day and possibility into the next day.

That is as clear as I can describe it at the moment and if you think of other questions that might help, don't hesitate to ask. Typing on a keyboard with a screen is one of the few ways I can access language consistantly and work through these problems

2010-09-23T06:41:00.000-07:00

I hope I don't regret trying this!

Penelope - one of my beautiful, fragrant climbing roses that managed to survive in spite of a summer of neglect.

We've used Hughes.net satellite internet for at least nine years now. We went to them because the DSL here isn't any better than the antique phone lines...which isn't good. We only keep a minimum dialup service (20hours/month) just as a back up for bad weather conditions.

I would guess up until the last month, I haven't turned it on in several years, if that. It's slow, cranky and frequently dumps you in the middle of whatever it was you were doing. But just to let everyone know I really am doing great, I'm going to risk loading a series of photos through the old nasty dialup service!

I'm still adjusting to having a brain that doesn't work the way it used to, and mourning the loss of some aspects of myself that I probably never will be again. I'm learning to stop worrying about hurting people's feelings and directly tell them what my needs are. That includes memorizing some little speeches to respond to specific situations, such as, when someone insists of laboring over forcing me to understand where someplace is geographically...

'Excuse me (because the person is often so deeply invested in making me understand that I actually have to interrupt); but the portion of my brain that relates to directions, distance, and landmarks, isn't working these days. No matter how many details you give me, I won't know where you are talking about and my brain will icreasingly need to close down.' Maybe it will work! I tell you, it's a process!

I'm hoping that my new glasses will be in today. The optometrist was able to correct my eyes to 20/20 both near and far, and I ordered lens with a permanent tint for indoors and photogrey for outdoors. The reason for that is any strong light, both fluorescent and sunlight, plus bright colors causes a stimulus overload and my brain hangs out the 'Closed for Repairs' sign.Too many conversations and noise also affect me so I'm thinking about trying some of those filter earplugs.

And to let you know just how really well I am doing, here are photos of me riding Brillo and Mike riding Mio! These were taken on Tuesday, a glorious fall day. Some folks have asked me what has happened with Mio and he has become Mike's 'learn to be an outstanding rider' horse until he is ready to move on to his own heart's horse, Llego. Mio is fantastic for that job as he is completely reliable and tolerant. He's doing a great job!

Mike took these photos and I cracked up when editing them to see that Brillo and I have the same expression!

Doesn't he look amazing though, in just one year of living here.

Don't Mike and Mio look fantastic together?

Mike is such a natural with the horses and riding!

I can't say enough about my dear, sweet Brillo! I don't know that I've ever felt as safe on a horse as I do him and it's so appropriate now. We have spent much of our riding time (no more than 20 or so minutes at a time) wandering around in the woods, exploring and enjoying ourselves. It's been perfect for me to let my body remember riding without my brain needing to be involved.

There you have it! All is well here at Star's Rest and we are loving every minute of what is so far, a perfect fall.

2010-09-22T11:54:00.000-07:00

No really, it's just the internet!

I appreciate everyone's concern so much and wish I could speed things up as I have a lot to write. Unfortunately besides having only slow and unreliable dialup, our dialup server has recently decided that it randomly can't connect to my blogger account. Frustrating!

I'm well, Mike is here and next Wednesday I will be spending the day in Albuquerque getting my full body scans to check again for distant metastasis. It will be VERY tiring!

Mike has promised to get Hughes tech support out here so maybe these internet issues will be gone soon.

2010-09-07T14:32:00.000-07:00

Hi everyone!

I'm still here, still recovering, and still cursing the internet! Our high speed internet continues to only occasionally work which means my only option is to use my old computer with the backup dialup which kills my back and is horribly slow.

So forgive me for the lack of posts, hopefully the issues will be worked out soon. Take care all and 'no news is good news'! Carmon

2010-08-23T15:33:00.001-07:00

The fearful judge healer and wounded alike,
But each one wounded has the heart of a healer
And each healer has known a wounded heart.

The liberated soul sees disease
As another remarkable journey.

Fear not, Friend:
There is something to be gained from every illusion.

Isn't that beautiful? It's from The Tao of Healing by Haven Trevino which was given to me for my birthday this year by another dear friend. It was a timely gift as I have been inspired by so many passages from it.

This has certainly been a 'remarkable journey' and other than the terrors that Mike and the other people who love me were put through, I have no regrets at all. I feel as though in three days of unconsciousness, I somehow leaped forward into a place of spirit that might have taken me years to get to otherwise.

Grateful to have had a bleeding brain tumor? Yes, crazy as it sounds, I am. I no longer obsess about survival statistics the way I did two years ago. What would be the point? I know they are bad so why dwell on it? The truth is, I was always Stage 4, I just wasn't diagnosed that way because those little stray cells stayed hidden. There was a part of me that knew and was on hold, waiting for the other shoe to drop. Now that it has, I feel relieved because everyone else knows exactly what I always did. There is a great freedom in that. And looking at it that way, I've already have beaten those dire stats by more than a year. What's to stop me from continuing to do that? Especially now that I and my doctors will be on high alert for changes? And you know what else? Metastatic melanoma brain tumors have become one of the easier aspects of this disease to treat. Good choice, body!

And look at what I got out of it...a much kinder and happier version of myself. One not so driven by past injuries or a compulsion to achieve. It's a lovely, peaceful place to be where I can be accessible to Mike, myself, this mountain and the animals who live here. Who cares if my intellect is a bit damaged? I'm not a student. I don't have a job that demands a high level of creativity or organizational skills anymore. I can more than handle the mental demands of life here and the things I have to give up, teaching and running my own business, are things I was more than ready to leave. Being here with Mike and the animals and caring for this life is more than enough right now.

In the last few days, I am finding that my energy is starting to come back along with my enthusiasm for doing the small things I've always loved around here. I finally went out and pruned and fed my roses here at the end of the season. That was lovely. I feel bad that they were so neglected this summer...a very hot summer last year that stressed them followed by a bitter winter and then lack of attention this summer definitely took a toll. The weather guys are promising us a warm dry winter this year though due to El Nino changes so they will hopefully have a long, beautiful fall to gain strength.

The green beans I planted in May are mostly a failure, but again, it was because I wasn't present to look after them. At least I know they will grow well here so next year, a good crop of blanched beans in the freezer. The tomatoes have managed to do well though and are ripening fast and taste as sweet as eating candy.

The horses are magnificent and I feel such a rush of joy and love when I look at them and think of what they have done for me. The dogs are silly, wonderful creatures and there is nothing better than having one curled against me and smooshed half in my lap while I rest. Willie's leg injury is slowly healing. I never said what happened...he ripped it down to the bone from the hock to his paw. Greyhounds have tissue paper thin skin and injuries like this are fairly common. It isn't possible to stitch that kind of injury and in some cases, it even causes more problems in tissue death. He has been a doll about letting me keep it bandaged and clean and finally, it is beginning to close from the top and bottom but we still have a long way to go before it will be fully healed.

And that is the current state of things here at Star's Rest. We haven't had a tech out yet to see what the issue is with the satellite but I suspect the dish needs to be refocused. I'm currently getting access from early afternoon on which is a whole lot better than nothing!

Even though I knew I wanted to add a photo, I went ahead and published this because I wasn't sure how long I would have access to the net. Since then, a thunderstorm moved in and as I was going out on the deck to close windows, I felt such a sense of warmth and safety here in our round house. Thunder, lightning and rain outside, and the dogs and I snug here inside. The horses are happily eating hay and grateful for the respite from the flies that have been so bad this year. It's all so lovely.

2010-08-16T15:58:00.000-07:00

Internet problems!

While I have a moment of online ability, I just wanted to say I'm doing great other than cursing the internet gods! As soon as we get this current problem straightened out, I'll be back to post more!

I didn't want anyone to worry about me...Carmon

2010-08-10T15:26:00.001-07:00

Some simple requests...

I imagine that most of the people reading this, like me, have had no experience with brain trauma so I thought it might be helpful to share a few things that I've found make life a bit more comfortble for me. I don't know if these things will eventually change or not so I treat them as if they are around to stay. This is a new experience for me too, getting used to a brain that doesn't work quite the way it used to so hopefully, we'll figure it out together and maybe someone else someday will benefit from me sharing these things with you.

~ I lose words when I'm talking. It's interesting that it doesn't happen when I'm writing and it's mostly a problem with verbal communication. Accept that there will be pauses as I try to find what it was I was trying to say and that I may use the wrong words at times. Don't correct me unless I ask you for the word. Give me the opportunity to work my way through to accessing those words myself which is very good brain exercise.

~ I tire easily and when I'm tired, all of these things get much worse. If I say that I'm too tired to respond or participate in conversation right now, believe it and know it isn't anything personal. Trying to push my brain into socializing or interacting when I'm tired is almost painful. Over stimulation is one of the worst things for me right now and a trip into town to do errands and go grocery shopping will leave me brain fried and exhausted for the balance of the day. Please respect that and accept as I have, that at least for now, I am not the highly verbal or high energy person I once was.

~ My comprehension of verbal directions and where place names are located is far worse than ever before. When you say, 'You know, it's north of Such and Such.' or give me detailed directions to a place, all I will do is smile and nod and hope you get through with it soon because I have no idea what you are talking about. Unfortunately if I say I don't understand, too many people feel the need to go through it all over again more slowly and in even more detail. Just believe that I can't orient to these things at all any more.

~ I have large gaps in my memory so if I say I can't remember something, please don't keep trying to 'help me' to remember. It probably still exists somewhere in my cells but I no longer have access to it right now and it only makes me feel frustrated and pressured when you aren't able to hear that.

~ My short term memory practically doesn't exist so please don't take it personally if I don't remember to return a call or answer an email. It's not a problem to send me a reminder. Also, don't expect me to remember something you've told me longer than about ten minutes unless you've given it to me on paper.

It might be that these things will be less of an issue for me over time. All I'm really asking is that like I have, you accept who I am in this moment and don't expect me to be someone I don't have access to right now. I don't need any special care, just allow me to move through recovery at my own speed. I appreciate your support more than I can ever say and I don't know what I would have done without Mike and all of the friends who stepped in to help out. That's all! Just sharing a few things I have found that would be helpful as I move through this next stage of recovery. (Amazing...I just ran spell check and it only found one error! That's certainly a major improvement over previous weeks.)

Also, Velvet asked about the dogs and cats and other than a pretty bad leg injury Willie got after I came home from the hospital, they are all well and as wonderful as ever. It was pretty traumatic for them when I disappeared and none of their humans were here for several days; but a dear friend came to sleep with them every night and they managed to get through it just as we have. She said they really clung to her those nights but were completely different when she stayed while I went down for gamma knife surgery and they had had their humans back for over a month. I'll try to get pictures to post soon!

Love to you all ~ Carmon

2010-08-05T16:46:00.000-07:00

Taking photos and four-legged updates.

Corazon, Llego and Brillo in the arroyo.

I must be feeling a bit better since for the first time in more months than I care to try to figure out, I've actually felt like grabbing my camera and taking some photos. I even managed to sit in my desk chair to size and do some simple editing.

A rare shot of the entire herd together.

Llego and Corazon, best friends forever.

My biggest complaint for now is that I still tire incredibly easily. My day looks like 'do a few things, sit down and rest'. As I was warned, the parts of my scalp where the local was injected, and where the gamma rays were shot, is incredibly sensitive to any kind of touch. I'm better this week than I was last week though. Still having vision and memory problems and I'm going to need to find a way to politely tell people when my brain is too tired to something as simple as formulating a reply.

First, let's get to an update on the stunning miracle horse, Brillo! I am so in awe of him and what an inspiration he is for me! Ten months ago, he was not much more than bones and rapidly depleting muscle tissue. He was so weak he could hardly walk and now he is not only climbing the mountain with the rest of the herd, he frequently leads them! This morning as we waited for them to come in to get their breakfast, it was such a thrill to see him striding down the mountain with beautiful free moving confidence. I managed to snap a couple of photos of him the other morning in the arroyo with the rest of the boys. And a rare shot of the entire herd together! As soon as I can manage to get a helmet on my sore head, I'll be climbing back on his back again, even if it's just to sit quietly and absorb his sweetness.

Now some extremely sad news I have held off sharing. On the Monday the 26th, before I went to Albuquerque for Gamma Knife Surgery, we lost dear, sweet little Louie. It was an internal issue and even though I spent consultation time with vets and tried everything they suggested, he wasn't able to recover. For the first time in all of this, I felt like I had nothing left. Still, I had to go to have the next phase of treatment. I hated more than anything to have to tell Mike when he called me after the surgery because he loved the little guy just as much as I did. It was just so incredibly sad and unfair that his sweet little life was so short.

Louie's two buddies, Huey and Daisy, are still doing fantastic though I'm not sure how Mike will feel when he sees that the buck fence he built has become their jungle gym. They really missed Louie for a while but now they are completely bonded with the horses, eating hay with them and following them all over the mountain. Fortunately, they have learned to bed down either in the yard or right with the horses so we feel they are pretty safe from coyotes.

And that's the current Star's Rest update. Slowly but surely things are coming back to something that is similar to normal. I haven't forgotten that I promised to write about the things I experienced during those days of being unconscious. It's just a little difficult to find the words for; but I'm getting there.

2010-08-02T07:06:00.001-07:00

Just resting and healing.

That's pretty much what I've been up to since my last post. Susan has been such a God Send helping with everything and keeping me on track with eating three good meals each day.

I guess because the part of my brain where the primary lesion was got a bit inflamed again from the Gamma Knife, some of my old symptoms came back again with vision problems, memory issues and fatigue so I've been letting myself rest as much as I need to. Mike tells me he has been really tired too and getting to bed much earlier than normal for him and my best guess is the terrible stress of the last month and two very hard drives have caught up to him as well and his body is finally demanding a break too. I'm still not sure how Mike managed what must have been the worst drive of his life to find me in the condition I was in, then to spend the next weeks taking care of me and all of the chores here. I'm so glad he could go back to an environment where he can get a break from worrying about me and also that, so far, there has been no stress on this well.

Yesterday good friends came over for a pot luck Celebration of Life gathering. It was wonderful to sit and visit with our friends who have supported me and been here for Mike and I every step of the way through this rough journey. We ate wonderful food and had even more wonderful fellowship and these days, that is an incredible gift! We are so blessed to have found a community here that leaped in to help care for animals and take over the essentials so that we could focus on my recovery. My love and thanks to you all!

2010-07-29T19:46:00.001-07:00

Show and tell time!

We picked up Susan in Albuquerque yesterday evening and we have been having a wonderful time catching up, in between eating and resting. Nothing much new to report since I am really just focusing on resting and recovering and Susan's help has been priceless.

So here you have me in the lovely halo frame, right before they took it off which is why I'm smiling! (Notice my eyes already swelling and turning purple!) They added all kinds of pieces to this frame to exactly callibrate my head position in the Gamma Knife dome and then those pieces locked me into place while the beams did their job from three directions!

And here you have my brain scan! The large tumor circled on the lower right is the one that decided to bleed into my brain. The little one on the upper left is the new one found on this scan. Both have been covered by the Gamma Knife and in two months, we'll get a new scan that will hopefully show them gone and no new ones!

Off to bed!

2010-07-28T05:49:00.000-07:00

More of the experience!

I pretty much crashed at 8:00 last night once I got that darned bone pain down to an acceptable level and it was good to sleep so soundly in our own bed again. As usually happens with bone trauma, the pain is almost completely gone this morning but I look a bit like I got into a fist fight with one of those insensitive and demanding former BHD customers! My eyes are swollen and somewhat blackened from the local anesthetic etc. draining down into the soft tissue around my eyes. I suppose I should make up some sort of really good dramatic story for all of the bandaids, bandages and swollen black eyes!

The day went much faster than I expected and I guess that's because of the logistics of everything involved, they can only take on two Gamma Knife patients per day so things are planned out to the minute with a staff that works together like a dance troop. The result was there wasn't a single moment when I could get out my netbook to send emails or to make phone calls. If I wasn't in a tube somewhere, I was resting for the next round!

When I arrived and got registered, I was greeted by the two RNs who were assigned to my case and they were both wonderful, professional and charming women who took great care of me and kept me totally comfortable. Step one was mounting the halo and I'll tell you, it wasn't a pleasant process no matter how hard they tried to make sure I experienced a minimum of pain. I won't go into the gory details, just that four metal screws as big around as my little finger were screwed right into my skull with the help of local anesthetic and some sort of oral tranquilizer.

Just as everyone told me, the pressure on my skull, especially after so recently having a craniotomy, from the halo was the worst part. They kept assuring me that it would let up and eventually it did. They also were right on top of giving me pain medication via an IV as often as I needed it.

Next was the trip to the MRI for an hour long scan to map the existing lesion and to carefully check for any additional lesions that might have been missed. Thanks to the excellent care of the nurses, I slept through most of that process and then back to my room to wait for the radiologist and surgeon to decide how they wanted to approach the assault on the tumor. Once I got settled again, one of the nurses came in to say she was ordering me breakfast and 'How about scrambled eggs! And fresh bagels with cream cheese! And I'll make you some fresh coffee and bring juice!' How great is that?

So I lounged comfortably eating breakfast and drinking freshly made coffee after no food or liquids since the evening before, while the doctors made their decisions and programmed the Gamma Knife. Then they came in to talk with me and brought print outs of the scans. I learned that they had indeed found an additional lesion on the left side of my brain but this one was only 5 mm instead of 2x3 cm like the one on the right which was just within their size capability of treating. The radiologist was quite happy about it, saying 'This is the size we like to find them! That one will be easy to treat and we'll get that other one too!' Then it was off to the Gamma Knife room.

That process was surprisingly easy and I was incredibly impressed at the fail safes they put into everything they did. Before each series, the calibrations were independently checked by three different people. Then I was laid back on a sliding table and moved into position and the halo locked itself into a machine that looked somewhat like an alien colander turned on its side. If I needed more pain medication, which was mostly for my back at that point to manage lying still on it for so long, it was given via IV and I proceeded to nap through that sequence. It was so quiet that I had to ask them to start warning me before they released the halo and moved me out because I was startling so hard out of sound sleep!

The Gamma process to hit both lesions took only about an hour and then it was back to my room to remove the halo and wait a while for observation and for Carolyn to arrive to take me home. Then the doctors came in to talk with me expressing how confident they felt that this procedure was going to be a complete success for me and that I would need to come back in two months for a follow-up MRI to see how my brain is healing and to again check for any possible missed lesions that might continue to grow. The Gamma radiation will continue to have effects for several weeks, expanding slightly around the perimeters which helps to insure that border cells are also taken care of.

What I was most impressed with was the absolute kindness and professionalism of the entire staff. At the same time, they were very comfortable interacting with me in a humorous way and we had a lot of fun laughing and making jokes with each other. It was clear that these people love what they are doing and that they are incredibly excited about the technology they work with. Besides my two RNs, there were two Physicists, the Radiologist and the Surgeon with me off and on all day. It must be an incredible experience for them to work in an area of cancer treatment that saves lives and improves quality of life for so many people that in the past, had very little hope. What a gift to be living here where this is available to me!

So as soon as I can manage sitting at my other computer, I'll have show and tell! Photos of me that they took in the monster halo and...scans of my brain complete with pesky lesions! How cool is that! I even got a disc with all of the MRI scans and my info on it that I'm supposed to keep with me at all times. I was excited about that too and they kept cracking up at my silly enthusiasm! But what the heck else can you do when your sitting half naked surrounded by people with a big metal contraption screwed into your head!

But it's over and I have two whole months before I have to deal with doctors again (unless problems come up) and best of all, no more seizure meds and no steroids unless I start experiencing headaches or severe nausea which would indicate swelling. They don't anticipate any of that though because they said both tumors were very close to the surface.

This is as much as I can manage this morning. We'll be going down to pick up my friend Susan at the airport this afternoon and her timing is perfect as I was told for the next week no bending over and no heavy lifting and so on. Pretty much the same as after the craniotomy but for only a week. So stay tuned for show and tell time!

2010-07-27T17:10:00.001-07:00

Home safe and all went well.

Right now I'm in a pretty significant amount of pain from the four screws put in my skull and I'm alternating ice on the front for my eyes that are already swelling and turning black from the screws that went in above them, and ice in the back for the pain from those screws.

I'm really tired and I promise in the morning when I feel a bit better I will be able to tell everything. The good news is, they were very happy with the whole process and feel they will have excellent results.

Your prayers, thoughts and wishes were certainly felt by me! Good night and the whole adventure in the morning!

2010-07-26T06:07:00.000-07:00

On to my next adventure!

We'll be leaving for Albuquerque this afternoon, have a nice dinner and then I'll check into my hotel to be at the Gamma Knife Center by 6:00 am Tuesday.

I'm ready emotionally and physically and lots of friends have stepped in to drive me here and there and another one will be spending the night here to keep the dogs company and do the morning chores so no worries!

I imagine the hospital will have free wifi so I'll do my best to put an update here after the procedure is done to tell you how it all went. If not then, when I get home Tuesday evening before what I'm sure will be a collapse into bed.

My thanks to everyone for all of the words of support, kind thoughts and prayers that have been sent my way! It's another step in the journey that will soon be behind me!

2010-07-22T09:12:00.000-07:00

A more simple version of me.

Brain trauma has definitely changed me and I'm realizing that for the most part, I don't really have issue with those changes. It was very hard initially because I was confused by how differently I now receive and process information. I kept trying to force my brain back into what I was accustomed to and that is gone. Possibly for good but who knows? Now that I have begun to experience and accept what appears to be normal for me now, I don't at all think it is such a bad thing. A year or so ago I read My Stroke of Insight by Jill Bolte Taylor and I’m glad I did because what I could remember of the book really helped me to understand what was happening to me and why.

My mind no longer makes great and nimble cognitive leaps. Instead, it's more like cognitive strolls! I get there, it just takes me a bit more time than it used to and that isn't necessarily a bad thing. All it really means is that I give myself more time to process and work my way through things. Interestingly, I found when Willie hurt his leg really badly a few days ago, I didn't need to think or process. I instantly went into an automatic healing mode, grabbed the materials I needed and did what was necessary to treat and care for a serious injury. So now I know that I can still trust myself to handle at least a small crisis well and effectively. That is a lot.

I'm 57. I don't need to prove my brilliance anymore. I proved myself to myself and the world many times years ago, not that I ever really needed to. As one wise person said to me recently, perhaps it's time to let go of the need to 'be smart'! I like that. Being where I am now is certainly a lot more peaceful and way less driven.

My memory is shot too. At least my short term memory. That is manageable by making lots of notes and lists, being consistent with where I put things and by finishing one task before I start another. The Queen of Multitasking is dead! Long live the new Queen! You might find me repeating myself here but I'll forgive myself for that and hopefully, readers here will be tolerant as well. My distant memory has been affected only in that it no longer has the hold on me that it used to have. That is blessed and lovely. I can no longer get myself riled up by things that happened 20, 30, or even 50 or more years ago. It's all there; it just has no power over me anymore and feels more like something I read somewhere.

Probably the most difficult thing for me to adjust to, and one that may be resolved after Gamma Knife Surgery, is the problems with my vision and spatial comprehension. From the time I was a child, I identified myself as an artist. I used to think that the worst thing that could happen to me would be to lose my vision or the use of my hands. I believed that my greatest gift was the ability to create something in my mind, hold a form, and then translate it with my eyes and my hands into something tangible. I don't think I can do that anymore but I feel no loss about it, no sadness at all. That compulsion to create physically was part of another way of being.

My core self has not changed, just become more clear I think. I will always create because that is who I am. The difference is that creation for me will no longer be about making things, it will be about life and how I live it. That is pretty wonderful and I feel as though a huge burden has fallen away from me. I don't need to be an artist anymore. What I need is to live well in every possible way that I can.

I feel so profoundly happy and at peace now. Could I have gotten here without the events of the last two years? Of course. Anyone could. Would I have gotten here? Maybe. That's an impossible question to answer but I think I might have always been the kind of person who needed big events to trigger change. I got the road that I got and it's my job to make the absolute best of that road, to see the beauty of the journey and to love the people and beings who are on it with me unconditionally and without judgment.

This has certainly been a trial by fire, a process that has stripped away the non-essentials. As my counselor has said, Mike and I have been through things in the last few years that would have destroyed many couples and marriages. The fact that we have weathered them and come out the other side still together and still loving each other, says so much about who we are as individuals and who we are as a couple. In many ways, I feel that we have been given a ‘do over’ and I intend to take advantage of that as my body heals and life finds its way back to a more settled place. This year was our ninth anniversary of being married and our 10th of being together. How fun to begin exploring each other again as the people we have matured and healed into. Get ready honey…you might find yourself in for quite a ride as my physical strength and endurance comes back. At least I hope it will be a fun ride for us both!

I see this as an opportunity to continue to explore this person I have become. To continue to let go of old ways of being and thinking. To let go of old angers and resentments and judgments. It has been easy to stop judging myself and to find the delicious humor in the situation I am currently in. I was such a sad, depressed and angry person for so many years, who would have thought I would one day find the ability to laugh about almost anything? How on earth is that something to be upset about? I love that I find myself laughing with whole hearted joy about the effects that a brain tumor and an emergency craniotomy have had on me. It is what it is and I am what I am…why not rejoice in the fact that I am still here and still able to laugh?

Judgment is a hard one. I still find myself judging and becoming angry about insensitive things that people say and do. But there isn't a lot of depth to either feeling anymore and it is so much easier to get off that mind loop and come back to peace than it ever used to be. I think as long as I hold on to my awareness of it, eventually, with practice I will one day let go of those two demons as well.

It's all rather fascinating, isn't it? How our minds work and affect us but our core selves still remain firm within that space. Welcome to the journey and the ride.

2010-07-20T15:14:00.000-07:00

The date is set!

I will be having my Star Wars Gamma Knife Procedure on July 27th, just a week from today! I had a very long phone interview with my very own nurse who will be with me every step of the way and I really liked her! She was funny, light and somewhat irreverent, just my kind of person!

She told me everything that would be happening and constantly asked me for questions so I ended the call feeling really excited about getting this done. She told me that the MRI that will be used that morning to map out the cells to be removed, scans in 1 MM slices so they will be able to spot and remove any possible tiny cell clusters that might be hiding anywhere in my brain. How cool is that! My new official No Evidence of Disease date will be July 27th!

Unfortunately Mike had to head out to North Dakota today and I know it was as hard for him to leave as for me to watch him go. I'm just hoping he has an easy spell of work with no human, mechanical or weather problems so that he can have a chance to recover too. I hope he will be just as excited as I will be when he gets to come back home again.

I have to go into the local hospital tomorrow to get blood work done for the surgery but I had to go into town tomorrow anyway so that's no problem. Then Thursday I'll be getting rid of my one quarter mullet the craniotomy left me with by getting a short layered haircut to even out the roughly half inch of hair I have on the right side of my head! I was going to wait till after the procedure but the nurse told me it would probably be better to do it before. The reason being that the local anesthetic under the scalp for putting in the halo screws will make my scalp very sensitive for about a week and having my hair short before would make it that much easier for me to care for! Yay! I've never had short hair and I'm excited! It will get to grow out all healthy and happy again.

So I have to tell you about this because I laughed so hard yesterday that my cheeks hurt. We took little Louie back to the vet to get his cast off and it was shocking to me that three weeks ago he comfortably fit in my lap and this time we had to stand him on the floor in Mike's truck with his back feet between my knees and his front half sprawled in my lap. After checking out the air conditioning and listening to the classic rock station Mike had on, Louie proceeded to tell us all about that 'Bbbbbbaaaaaadddddd! Mmmmmmaaaaaannnnn!' we were taking him to see again! Every time he would throw his head back, open his mouth, stick out his tongue and tell us his sad story, I would crack up laughing!

Then when we got to the clinic and took him into the exam room, Mike balanced Louie on the table while Doctor Brainard worked on getting the cast off. Louie did his best to convince the people in the waiting room to come rescue him by constantly screaming about that 'Bbbbbbaaaaaadddddd! Mmmmmmaaaaaannnnn!' who must certainly be trying to kill him! All any of us heard from the other room was the same wild laughter I was letting out!

When it was all over and Mike set Louie down on the floor, he wandered around exploring, greeting people and acting like nothing had happened. I tell you, those three goats have given me endless joy and laughter from the moment they came home! As soon as my eyes are working well enough to process some photos, I have many stories to share about them. Everyone should have their own pet goat! There was something so precious about on the trip back home when he relaxed with his neck and chin running up the length of my breastbone, gazing up at me with those beautiful gold, horizontal slitted pupils. Gotta love those goats!

2010-07-19T07:09:00.000-07:00

Mike is heading back to North Dakota tomorrow!

No, I'm not feeling at all anxious! I have friends lined up to call me multiple times during the day to make sure I'm alright and my dear friend Susan will be arriving on the 28th. I think for the first time ever, Mike might be looking forward to going to work at something where he feels like he has a little control in the world! I know this last month has been brutally hard on him emotionally and he has been present and caring for me every step of the way. That makes life a lot easier when you are trying to figure out who you are again!.

I sent an email to my doctor this morning to see if she has any information about the Gamma Knife procedure and I promise I will add an update as soon as I know anything.

Shhhh...please don't tell anyone but after researching the seizure medication they put me on, I cut the dosage in half without asking permission! It turns out that 70% of people taking this medication go to a much reduced dosage or different drug because of the side effects which include extreme sedation, loss of balance, ataxia, memory loss and even vision problems! Geez...you think that could be why I've been sleeping roughly 18 hours a day? The neurologist said my chance of a seizure was actually very, very small and taking this was more of a precaution than anything else so I don't feel like I've done anything too bad. And, in two days of a reduced dose I feel so much better! I was awake and on my feet for more time yesterday than I have been in weeks and food tastes good again.

Oh and get this...another serious side effect is mood swings, depression and suicidal thoughts! I haven't had those but don't you think they would tell you or your spouse about that kind of possibility? Especially since this kind of diagnosis creates fertile ground for those feelings anyway. I know all of the doctors are overworked and that is why I always feel that I have to be my own advocate and researcher so much of the time. Plus, I just like knowing stuff!

So I'll be back later if I hear anything!

2010-07-16T07:13:00.001-07:00

Still waiting to hear.

My case should have been presented yesterday and if I don't get a call from the Gamma Knife folks today, I'll send my medical oncologist an email to see what's up. I have to say, email is such an amazing thing for the medical profession. It's got to be so much easier for doctors too as a means of staying in touch with patients. My onc is always great about answering me right away and she now regularly sends me copies of all reports to add to my files.

Of course my 'best case scenerio' is that they tell me I won't be having it now because there is nothing to remove! How wonderful would that be?

I'm feeling pretty good this morning, vision fairly clear and no more nausea so that's a bonus. I have to say I appreciate the blessings of an instant hot shower more now than ever. It is so wonderful to get out of bed and right into hot water coming down on my head and neck. A bit gross but I still have huge crusty incisions wrapping around from above my right ear, behind it and almost down to the bottom of my hairline at my neck on the right side. I don't have pain inside my skull anymore but that area where they turned my head into a flip top and added a few plates still aches and letting hot water soak it is pure bliss. Small, lovely blessings of civilzation.

2010-07-14T06:55:00.000-07:00

See, all I have to do is announce that I'm not feeling well and taking a break and all of you positive thinkers and gifted visualizers out there get me better!

Seriously, the ear sloshing nausea disappeared yesterday morning! I'm still a bit on the tired end of things and my vision is bugging me but at least I can eat again. Now that I know about this response to the contrast, I can insist that they dope me up with preventative meds before the next MRI!

I have a happy thing to share! My dear, dear friend, Susan Gueaneau Mishal, who was coming out in August to hold a clinic here anyway is going to come July 28th instead to stay with me and be my 'keeper'! She has been taking a very concentrated certification program at UT Austin and will be coming when this summer session is over. I am SO looking forward to seeing her! It has been years since we had a chance to spend slow time visiting and talking about life and matters of the spirit. Plus, it will give Mike a great sense of relief to be able to go back north knowing someone will be here with me and keeping an eye on me. I've asked other friends to set up a phone check in schedule to help make sure I'm not only answering, but making sense...at least as much sense as I ever make! So bases are getting covered for us to take those first little baby steps for getting back to something that at least looks like it might become the new Now Normal.

The night before last I dreamed I was riding Brillo and it was really lovely. We were in the arena and picked up the trot. He had a lovely long, floating trot and it felt incredible to sit it, like the best part of dancing. If you are wondering why I haven't actually gotten on him even though I was more or less cleared for riding. I haven't really felt stable enough yet. How stupid would it be for me to rush things and fall off of him because I got disoriented and wobbly? Plus risk starting another bleed since that lesion is still in there. I decided to wait until after the gamma knife procedure and sufficient time for healing from it. Why not live life as though I have the time to do things in ways that are safe and less likely to cause Mike any more crisis than he has already endured? My wish for him is that nothing ever again jerks the rug out from under his feeling of safety in our life together. I can help to make that happen by not doing too many stupid things in any given day!

Multiple small goals set for today...getting our bills paid before any are late; watering plants and pruning my roses; finishing up my deck fish water feature now that the last of the parts are here; spending time with the horses grooming them and giving them some relief from relentless horse and deer flies. Now of course, I may not actually get all of those things done but having a plan helps to keep me focused.

Here is a teaser from the piece I am writing about that day when everything went dark and the first 48 hours that are still mostly missing ~

'How can you not feel bonded to a horse who has carried your spirit between shadows and light?'

2010-07-13T07:11:00.000-07:00

Don't worry about me!

I'm taking a break from writing for a few days. Even though the techs kept assuring me Friday night that the IV contrast for MRIs wasn't the same as the IV contrast for CT scans, I've been sick ever since. It's like having constant motion sickness, right down to the feeling of having water in my ears, so I've been pretty much limp on the couch or not much fun to be around.

Everything is pretty much on hold anyway until my case gets presented on Thursday and we hear the results. So please don't worry about me if I don't put anything up for a few days. My next post will probably be after I hear about the results of the Gamma Knife Conference.

Mike has been wearing himself out cutting down trees, stacking hay and otherwise trying to get all of the heavy stuff caught up around here before he has to go back to North Dakota.

Thank you for all of your caring comments and emails and I'll be back soon!