Requuest for Big Prayer

I am feeling really bad. My colonoscopy/endoscopy look like it is GVH. Safest would be to wait for the biopsies to come back in a few days. But Tx - prednisone may bee needed sooner. And possibly aspirating some more fluid off my abdomen.

I am somewhat demented from the dilaudid - nightmarish. Sleep is the only relief, but that is limited to a few hours here and there.

Love,
Anne


Anne is truely struggling, completely worn out. The pain, unbearable at times, comes in waves. She now has a pump which provides an instant dose of dilaudid - and sometimes that's not enough. Her distended belly cries for relief .

The attending physician was just in and it's looking more and more like GVH. The G.I. physician will be consulted and a course of treatment will begin. Unfortunately, the biopsy results won't be back until Monday or Tuesday, at the earliest.

Love,
Nancy


PPS: from Anne - a little nap has made me feel a little better, both mentally and physically.

Thank you, my dears

It is Wed. morning. Hey, I finally have a good room - it is a double, so I could lose it. I think I might be feeling a little better today. Still no diagnosis. My oncologist is not on the floor, so he wants the guy who is - who is not an oncologist, but an internist, to figure it out- and. surgeons pop in an out, and I do not really feel held. "Not conclusive for gall bladder disease", and they talked about doing a test to see if my gall bladder is blocked, but have yet to schedule it. My oncologist doesn't really see surgery as an option, and says the gall bladder will always eventuall calm down.

I have gained 15 lbs of water weight, yet my urine is very dark and I fell very thirsty. It is all in my abdomen, which impedes my ability to breathe, so I am on oxygen. I have the runs, of pure bile. My blood counts have all gone down.

Meanwhile, my doc is finally (said he'd start last week) researching clininical trials.

Well, it is hard for me to be feeling optomistic at this point, but that is probably mostly because I feel so bad. So please intensify your prayers, for both the immediate problem and the long term.

Love,
Anne

they say

They say God only gives you what you can handle. I guess God thinks that Anne can handle a lot.
On top of her going out of remission she is now back in the hospital with an inflamed /infected gall bladder and faces possible surgery if antibiotics don't resolve it. Her symptoms have steadily worsened over the past 5 or 6 days from fever to nausea to severe abdominal pain. I will forgo the details at this time but say that in her typical iron willed style she has faced it and continues to so with great focus, determination and purpose. She has gotten some relief from Dilaudid a powerful pain medication. We'll know more in the next few days and hopefully the pain will subside as the gall bladder calms down. This of course is the very highly edited and shortened version of this past week's events and details but it's all I have time or energy for right now.

Love to all,

Dennis

Well, this last visit to the clinic they saw blasts in my blood, which makes it official that I am not in remission. I am off the immune suppressant and rooting for the GVH. There is a one in three chance that the donor cells, or the GVH, can get the leukemic cells. The only thing more UCSF could offer me would be another dose of the Mylotarg. It would be a bigger dose, and it worries me because my liver enzymes keep rising (possibly GVH), and Mylotarg is very hard on the liver. Stephen (my brother) is researching clinical trials for me - they would all be elsewhere. Oh, this journey is long and hard.

And I have a fever - high enough the protocol is to put me in the hospital, but fortunately, my doctor shared my opinion that we could wait. I only have mild upper respiratory symptoms, and strange crampy muscle pains. I suppose it could be GVH, but it does not usually give such high temperatures.

My equanimity seems only to grow, as the illusion that I am in control falls away. Not that there isn't necessary action and the need for clear intention on my part. But that is not control. And also, I think to be in as much relaxation and joy as possible is what my immune system needs.

Your continued prayers and messages are deeply appreciated.

Love,
Anne

Life in the Unknown Zone

Yesterday was a series of disappointments. I went to the city the night before to be at the hospital at 8AM to have my central line removed. They had me on the table, when my nurse practitioner called and said not to pull it. I felt no matter why, I wished she had called ten minutes later and it had been too late. I also was pretty sure that it could only be the results of my bone marrow biopsy that could have lead to the call. And that it would be hours until I saw her and heard why. I managed to grab her in the hall about two hours later and get the short version. Here is the full version. I have the normal number of blasts (immature white cells), which means I do not have leukemia. However, some of these blasts show an aberration that my leukemic blasts showed, which implies that I could have residual or early leukemia. My doctor says it is simply too early to say. I will be weaned off the immune suppressant by the end of next week, in hopes of giving me more GVHD. They will do another bone marrow in a month. They may give me more of the donor stem cells, to provoke more GVHD, and also tip me more to being 100% donor blood and immune system.

Also my blood counts were the lowest yet, from the nasty anti-viral. I have stopped it, and my counts should recover in about a week. Meanwhile, I am still going to the clinic twice a week.

I feel OK, though tired, and a little low grade sinus/throat stuff. Hard to return to being more careful again, but I must.

So, my dear friends and family, please keep those prayers coming my way. Although I am somewhat bummed and fearful of GVHD's wild unknowns, I am relatively serene and happy.

Blessings,
Anne

Hello Again

It is Wednesday, and I am just back from the city, there since Monday afternoon. Dennis went to my appts. with me yesterday, which was a treat. Alas, I did not have my line pulled - it is scheduled for next Tuesday. My doctor wanted to wait for the the results of my bone marrow biopsy, although the preliminary review was all clear. My magnesium levels have held, and the weaning off the tacrolimus has begun. I continue to have weird skin stuff (prickly, highly reactive, still sun sensitive), which I am not too thrilled about the possibility of having worsen, but the drug cocktail alternative is pretty bad too. Forward I go!

Russell, Lucy and Suzie, chauffered back from the airport by Owen, had dinner with Dennis and me Monday evening, which was lovely. Owen had his wisdom teeth out this morning, impacted and one infected, and he is having a good bit of pain already. Lucy had her first filling today, which she almost made into as big a deal. So I played Mommy nurse this afternoon. So nice to get to do that again.

My response to the frequent question "how are you" is usually "decent" these days. I can't yet say I feel good, but I have some energy, and feel more or less like myself again.

So that's the update! Hard to believe the summer is almost gone. I think for me fall will be like spring.

Love to you all,
Anne

Steady Progress

My bloodwork has continued to improve in all areas, and my CMV is at last negative, and I am down to half the dose of the intense anti-viral. We are seeing if I can get all my magnesium orally, and if I can, my line will be pulled soon - which is good, because it is falling out. I will be ecstatic to get my body back - it has been a source of constant unease.

And my energy continues to improve, and of course, for me that means taking care to pace myself. I'm not doing much really, just a little more exercise and some of my own housework and errands. Dennis and I have had some nice meals out, and our first movie in months.

So things look good, though I have learned to be guarded in my optimism.

Lucy is having fun in France, comes back Monday. I have missed her. But I have been seeing more of Owen, who is always a joy to be with.

I miss hearing from many of you, so when you feel like it, send me an email and let me know how you are doing. annebocc@sonic.net or annebocchino@gmail.com.

Love,
Anne