The time has come

It's all a go. My donor has cleared, and I will go in on Wednesday. I am getting my central line put in on Monday, so I think the chemo will probably start on Wednesday. I am calmer, resolved to put myself in "the key of healing". I am having a small healing circle here today.

I do believe it is your prayers/thoughts that will bring me through. Please hold the image of me in perfect health and returned to vitality. Some specific issues: a quiet room, preferably with a Golden Gate view; healthy liver and kidneys as they work hard to clear the chemo; healthy mucosal tissue post chemo; protected from infections - for the next six months of immuno suppression; the clean end to my marrow and immune system and the rapid and successful acceptance of the stem cells into my marrow; the new immune system quickly accepting me as host and not fighting me more than a little; my new immune system successfully doing in any remaining leukemia cells (also the chemo destroying remaining leukemia). I would like to be back home in three weeks or so, enjoying my garden again. I am releasing all ideas of my suffering and letting myself be a living miracle - why not?

Thank you, thank you, and may all beings be freed from suffering, and may you my family and friends be blessed with good health and good thoughts and joy.

Love,
Anne

Almost Ready ...

to give up all illusions of control or knowing. The female donor "declined", no more info. Suddenly the 25 year old man looks so promising they tell me they might get me in the hospital in a week for the transplant. I hope they give me a day's notice or two. I must go get all my tests done again, including bone marrow extraction, the day of Lucy's graduati0n. My stem cell coordinator is in the Amazon, so communication is even sketchier than usual.

Here is what the process will be: seven days of intense chemo to kill my bone marrow, and hopefully any cancer. A day of rest to clear it out of my blood. The donor's stem cells are transported to me by courier, and dripped in via the IV. They figure out to go to my bone marrow and bring it back to life. In the period until they engraft, I am most at risk for infection. But I will be immuno suppressed for at least six months, with the immune system of about an AIDS patient, pre-cocktail. The other major risk besides infection is Graft vs. Host Disease (GVHD) in which the stem cells recognize me as a foreign body and attack me - hence the immune suppression. 70% get at least a light case - skin and intestinal disturbances. GVHD can help fight any residual leukemia, so a little is OK. About 15% get severe cases, perhaps chronic, and let's all just pray I don't go there.

I will most likely be in the hospital 4-6 weeks. Then I will have a very active outpatient status for some period of time. I will probably be intensely fatigued and rather brain dead.

Every minute some part of my being is at work learning to surrender. There isn't much else to do at this point. I am enjoying time with family and friends, still eating up a storm, and I hiked two hours in the virgin redwoods the other day. I really feel quite well.

Keep you all posted.

Anne

Still Waiting

I am sorry I have gone so long without a post, but there has been little news. I should find out this week that the stem cell transplant is a go, and when I will enter the hospital. Most likely the first week of June. Somewhere along the way they shifted to donor #2, who is a 25 year old woman, no children. This is as good as it gets in the unrelated donor realm.

My parents and my brother Steve and his wife Pat were out to visit me this week. It was a fun and whirlwind four days of socializing and eating. Steve and Pat and six friends and family went to UCSF for a two hour meeting with the doc and the stem cell coordinator describing the process, as well as legally having to tell me odds and side effects in order to get me to sign consent forms. To balance all that, I have been in touch with three women who all had very successful transplants.

I am still having to get my blood tested twice a week and get platelet transfusions. It is anxiety provoking as well as frustrating due to medical bureaucratic snafus. My white blood count is somewhat low, but I remain healthy. I fatigue easily however. Emotionally, it is the expected roller coaster, although on the whole I remain positive.

I will post as soon as I know more.

Anne

The garden looks lovely. Dennis did much of the work, including putting in a sprinkler system.

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