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

Improving

Hello there,

I just got back from the clinic, and the news was good. My counts are holding or rising in spite of the new anti-viral which lowers counts. My liver enzymes, which hit a high at the hospital, are starting to come down. Best, my NP thinks I am a good candidate to start to wean off the tacrolimus (immune suppressant) at 60 days, which is just 2 1/2 weeks off (it is the doctor's decision). Also I get to go down to one visit/week then, providing I stay stable during this time. I went off one antibiotic and my fever came back this week, so I am back on it now. So it still seems like a dicey time period, but with good luck, not for too much longer.

My energy is recovering slowly but steadily since this last hospitalization, but still not as good as even a few days out the last time. We have had foggy mornings, which have made me feel more at ease on my walk. And temperate afternoons.

Dennis comes up tomorrow afternoon for almost five days - a rare luxury for us. It will be a wonderful and needed break and rest for him. And Nancy will take off and go camping, which is her idea of a good time.

Thank you once again for your prayers and support.

Love,
Anne

No real news. My low grade fever is hanging in there at this point, but I am feeeling a little more energy each day. We are in a hot spell, though not horribly so, and I am trying to get up earlier to get my walk in, and walk again in the evening. I am adjusting to a life of high uncertainty and limitation. What a change of a way of being for me.

I hope you are all well.

Love,
Anne