Donor Found!

Well, you all must be some high level pray-ers. The first person that was tested came back a 10 out of 10 match. She is a 37 year old woman. I don't know if she has had children, which is less than ideal. They are also waiting for test results from a 26 year old woman. The next step, with at least the one potential donor, is to see if she is available soon enough. We are asking for the first week in June. I will have two more bone marrow extractions before then to make sure I am still in remission. Much more for all of us to continue to pray for, and I remain very blessed and grateful to have the support from all of you.

I am feeling a little better than at first on the mylotarg. With the help of Lucy's boyfriend David, and Dennis, I have planted a garden in the back. I won't be allowed in it after the transplant, but will receive much pleasure and sustenance from looking at it.

I have lots of appointments keeping me busy, and am trying to use the rest of my time to process and center and prepare (a big job), and to be with loved ones. There really isn't anything else that seems important. I wish I could say I am living every moment in the joy of the present, but I am not there yet. It is a lovely goal to aspire to however.

And may you all be blessed with such enjoyment.

Anne

Thank you Ruthann, Sharesa, and Ellie for your comments and support on the last post. My email, if anyone wants to write directly, is annebocc@sonic.net. Then I could answer personally.

Since it costs about $2000 to test as a donor, insurance only covers immediate siblings, who are the only real statistical likelihood. I do encourage people whose interest has been sparked to get on the registry - I will find out what that entails. The first test is just a blood test, and to be a donor for stem cell is mostly a couple hours of pharesis, where they take the stem cells from your blood and return your blood to you. The young make better donors.

I had the mylotarg last Thursday, and did have a reaction this time (chills, nausea, fever). I have really noticed my liver since, and have been a little queasy. I go back to the clinic tomorrow morning. I will see a local oncologist next week and hope to be able to have bloodwork and transfusions done up here.

My mental/emotional process is complicated, and somewhat subterranean. Last week I was processing mortality a lot, but I seem to have mostly moved on from that one. I am looking into a few practioners as alternative/integrative support, although around here that is a Pandora's box. I am also making more time to rest, meditate and listen to my guided visualization CD's.

My mother has sent me water from Lourdes.

Thank you all for your prayers. Please hold the vision of me in perfect health.

Anne

Biopsy results

I had my bone biopsy done Thursday, and had a Dr. appt. Friday with the doctor I wanted to see. The bone biopsy showed 6% leukemia - not the all clear I wanted, but still in remission. I am going to Sea Ranch in a few hours with Dennis, and will go back to the city with him Wed, and spend Thursday in the clinic receiving my dose of Mylotarg. It will be double the dose I received last time. It runs the risk of liver toxicity, but I did very well last time. I will have to get my blood checked 2-3 times/week and probably need at least platelet transfusions. And I will be neutropenic again. My conversation with the doctor convinced me of the necessity of the stem cell transplant, which my mind was still trying to wiggle out of due to the huge risks.

Meanwhile, I met with the transplant coordinator, and found out my 11 preliminary donors is a very small potential number. I feel like I am at a gambling table and the stakes just got way higher and the odds much worse. If there is not a live donor, they will search the baby umbilical cord bank, where the match does not need to be so precise.

So your prayers seem more important than ever. I go through many feelings, but I think developing is a sense of surrender to that which is out of my hands, whatever is meant to be. Living fully in the moment becomes more of a necessity.

I hope you are all well, and that spring comes very very soon to the Northeast.

Anne

Hello, my public

Oh ye faithful, that are still checking this, thank you. I went to UCSF yesterday - descent back into the disease model - though in fact it was another gorgeous spring day and in part a fun lark to the city. Lots of waiting and frustration - the clinic is clearly on overwhelm. My blood work was good - all counts in normal ranges except a little anemic still, and no cancer cells seen. I will have another bone marrow extraction next Thursday. Even if it shows complete remission, my doctor wants me to do the targeted chemo - myolarg - again the next week, and left the room before I could ask important questions like whether it will put me into needing daily blood work and every other day transfusions, which is of course a big deal. I am trying to change my follow-up appt. to the doctor I like better the next day, and will hear his answers to these questions. The computer search for a donor has found 11 possible matches, and insurance needed another screening test before they could proceed to contact them. It seems to me they move far too slowly in this process. I am trying to stay in the center of this process as a decision maker, though it is unlikely I will deviate from the doctor's recommendations.

Dennis and I are going to spend three days at Sea Ranch, up the coast, the next week, for our one year anniversary, so the chemo would wait until the next week. Life continues to need to be very go with the flow for me, and I am learning to do that at last.

I worked three hours at my bookkeeeping job yesterday, which I enjoyed, and will do again next week. My brain actually worked, which was gratifying.

I exercise a little more each day, building my stamina and my leg muscles up again slowly. I gained seven lbs in a week, putting me at 135, which is a very low end of normal for me. I eat voraciously and frequently, but I think I am slowing down a bit. I feel pretty good. It is all relative, and simply being alive, and not in the hospital, makes me quite happy.

Happy spring to you all - even my Northeastern cousins should at last be there. Such a lovely time of rebirth.

Love,
Anne

Home again!

I was sprung yesterday! And spring had sprung as well in my month in. I had to change rooms to a double for the last day, followed by an almost sleepless night - the last endurance test of this hospital stay. Home is less of a shock this time, and I am stronger, appendectomy and all. I really hope to be feeling good in about a week. I still wasn't making platelets when I left, but get to just go to my local hospital to be tested and transfused if necessary. Next Monday I will go to UCSF clinic, starting, unfortunately regular treks down there. As soon as my blood counts are normal they will do another bone biopsy, and this will establish whether I am officially in remission. I think I am, and most hopefully will need no more chemo until the stem cell transplant. As for that, tomorrow I think they will have the insurance OK to begin to contanct the 4-5 possible matches that the registry yielded on first pass. It could be as little as a month until I am in again, for the transplant.

I have been frightened of the stem cell transplant, but was very inspired to hear that a 74 year old man was going home the same day as me - 2 1/2 weeks! after his stem cell transplant.

I see Dennis's last post he spoke again of the importance of everyone's support, and he always speaks the matters of the heart better than I can. But I will tell you that virtually every card I received brought tears to my eyes.

Well, Lucy just arrived, not in school as she should be - she swears her grades are not suffering from her frequent absences. She was accepted at all the colleges she applied to, and will go to UC Santa Cruz in the fall. I will be glad to have her nearby.

Much love and gratitude to you all,
Anne

Homeward Bound

Anne called me at work yesterday in the late morning with great news. Dr. Wolfe had just met with her and said her white count was climbing ( it was six on the latest blood work) so he thought she could go home by Monday. He even said, maybe this weekend, but it doesn't seem likely since she needs to get off all the antibiotics. This past week has been a mixed bag for Anne with some moments of feeling more herself, then back to those feverish bouts of nausea. But now things seem to be settling down more consistently so we are ready to make a break for it. As Steve noted in his comment Anne is receiving IV nutrition, liquid steak and potatoes directly into the veins. That should be finishing today as she starts eating regular meals. She is still a bit sore from the surgery but that seems to have healed nicely and is no longer a concern.

When I asked Anne last night if she wanted to write something for the blog so I could enter it for her she said her thoughts were too scattered at that moment. She has talked constantly about the outpouring of love she has received and how life changing it has been for her. This entire experience has certainly created a bond between she and I that could probably only come with many years of sharing. We are both so grateful for the incredible support that has been given and sustained over these past few months.

Namaste

Dennis

Never a Dull Moment

Yesterday afternoon at work, I got a message to call Anne. I figured she needed me to bring some thing to eat for that evening. When I called she said " I have appendicitis . They are going to operate tonight "..... "I'm on my way". I arrived at 6:00. She looked scared but managed to make a joke about it all. We ended up waiting about 3 hours before they took her down to surgery. We met with the surgeon and the anesthesiologist. Both were seasoned veterans. Anne seemed comfortable with their description of the procedure and their competence. Surgery began around 10:20 and was completed just before midnight. It turned out to be a more difficult then the usual, as they call it, "lap appy ". The appendix had adhered itself to the colon and they spent along time trying to find it. She returned to the room at 2:30 awake and feeling pretty good, mostly from the drugs that were floating around in her system. The rest of the night went well and in the morning she was sore but OK. There was still some fever which the doctor said was part of the post-op picture.

I am now fast forwarding to today Sunday as I didn't get to finish this post yesterday. I had to get back to the hospital because Anne was feeling worse. Her temperature spiked and the nausea returned. She was unable to eat much and was in some ways just plain fed up with her circumstance. I guess the hard part is that she had been doing so well this round with a very positive result. Now this...
I spent the night. She had some chills and spikes but did manage to sleep . The resident, Dr. Chen, was in this morning to say they were keeping an eye on her blood work which so far was good. She said they may do a CT scan of the abdomen for possible fluid collection which could cause the fevers. I just called the hospital and spoke to Nancy, Anne was sleeping. Dr. Wolfe had been in and so far the blood work is OK so they are waiting to see if the antibiotics will do the job. If she does have fluid collection or abscess then she will have to have it surgically drained.

That's all there is for now. As always your prayers and thoughts are much needed and appreciated. I'll try to post again tonight.

Love to All

Dennis

P.S. Anne just called (12:45 ) to say she thinks the fever has broken. She was in a big sweat and is now a little above normal and feeling better.