Update: Bone Marrow Transplant Next Month

6 Mar

By SULEIKA JAOUAD 

For almost a year now, I have been waiting to undergo a bone marrow transplant. It’s been right around the corner for nine months. Every month I do a round of chemotherapy, and each time I am told to wait. At my last appointment, my doctors caught me off guard by setting a tentative date for transplant: April 2. I feel extremely lucky to have a donor and to have access to some of the best medical care in the world, but my sense of waiting — a terrible anticipation — has become more acute as the date approaches.

The results of my latest bone marrow biopsy still show evidence of the disease. Although there have been some positive developments since I began treatment late last spring (the number of cancerous blasts in my bone marrow has decreased from 30 to 3 percent), I worry that I will not be in total remission by the start date of my transplant. I am hoping that my current round of chemotherapy (Vorinostat and Vidaza — the Vicious V’s, as I call them — the drug combination that constitutes the clinical trial I have been doing since August) will get rid of these remaining blasts as well as multiple chromosomal abnormalities and deletions in my bone marrow. It’s those abnormalities that the transplant aims to eradicate with fresh donor cells.

Instead of focusing on the curative possibilities of the transplant, I find myself thinking about all that might go wrong. This is my only chance for a cure, but my transplant doctor’s words won’t stop ringing in my ears: “for someone with your medical profile, the transplant has a 40-50 percent chance of success.” Actually, “percentages” are not that predictive, given all the factors involved: my form of myelodysplastic syndrome (MDS), my reaction to the donor cells, complications that can occur during a transplant, and on and on. But I’m finding it difficult to feel optimistic about a live-saving procedure when the odds seem stacked against me — or at the very least, even.

My world of waiting is split between willful distraction and a morbid kind of myopia. I fluctuate between two extremes: wanting to pack in as many adventures and diversions into the next four weeks, and losing myself in thoughts and fears about the future.

How do you “suck the marrow out of life” when you’re counting down the days to a bone marrow transplant?

It’s difficult to imagine that in only one month, I’ll be on all the necessary medications for my transplant — the intensive chemotherapy and radiation, the antibiotics and anti-nausea pills, the immunosuppressants, and the rest. I’m confident in my doctors’ abilities, but I don’t have any prescriptions for the waiting. Just the journals I’m filling up, stacked next to my bed, and my greyhound dog calendar, a gift from a friend. Soon I’ll flip it over to April.

You can find more information on the bone marrow transplant process here.

Follow @suleikajaouad on Twitter and on her Facebook Page.

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10 Responses to “Update: Bone Marrow Transplant Next Month”

  1. Sheryl March 6, 2012 at 2:27 pm #

    I so, so wish that I could wave a wand and make this all go away for you. Magical thinking, to be sure, but thinking I am powerless to avoid. My very strongest wishes for healing and good come your way as you face this.

  2. mainelyhopeful March 6, 2012 at 2:52 pm #

    Fingers crossed all stays on track for a successful transplant in April.

  3. mary March 6, 2012 at 4:24 pm #

    Do remember that statistics (and percentages) are just that. 13 years ago my forecast was grim but I’m OK.

    But it was hard to accept the odds peacefully then. I recall rage at seeing a guy wash his car, as immersed as if he was bone setting. How dare he – what a shallow, moronic guy! I was reckoning with Life! Of course, since then I’ve heard ‘you are NOT unique’ more than once. HA!

  4. Sergei March 6, 2012 at 10:39 pm #

    Perfect donor, young age should shift odds higher. I close my eyes and see you happy and healthy 10 years from today. We will be praying to different gods for your recovery.

  5. Jim and Jan Gallagher March 7, 2012 at 9:12 am #

    I read post and also the link to the medical center’s description of the process. Thank you for writing your truth so that we can learn from you. I see you years from now, still a masterful writer, still wearing big hats…and dancing. Jan

    • Nicolette & Maurice Asselin March 7, 2012 at 11:46 am #

      I had a picture of good friend’s daughter that I did not get to share at Christmas visit. She went through the same and now has 2 beautiful children. That is what I came to bring you that day..

  6. sue sanderson March 7, 2012 at 10:57 am #

    I am sending you my heartfelt best wishes…I am in month 9 of a 2 year intensive “fast-track” for breast cancer, so I have a sense of what you might be enduring. On reading this entry, I had 2 thoughts:
    ~”50/50″ the movie
    with your mention of your own doctor’s quoted percentages; I especially appreciated the commentary section by the people upon which the movie is based; and
    ~my cousin who underwent an autogalous bone marrow transplant back in 1994 (now considered primitive when compared to today’s advances in BMT) and is the picture of health and high energy almost 17 years later!
    That said, I have found that my day-by-day/hour-by-hour/moment-by-moment “worry loops” have been melted away by a (small) book & cd set, “Getting into the Vortex” by Abraham-Hicks (available through Amazon) with Esther’s soothing voice instructing me to “breathe in…breathe out” while she says her positive and loving messages; I have this set for “replay” on my MP3 player and have utilized it for surgeries (pre-, during, & post-op), adverse reactions to drugs, and especially throughout the night… Otherwise, my favorites are the chants by Krishna Das (“Live on Earth”, “Breath of the Heart”, “Pilgrim Heart”) which serve to remind me of how chanting has helped many overcome great challenges throughout the ages, and around the world; I know I am returning to having more energy when I want to hum along – and then sing along – and then sometimes even start dancing! Whatever musical genre can help YOU escape and go into a joyful place is the way to go – and I trust you have discovered this!
    It’s fine to delve into the “what if’s” in your own mind, talk about them, journal & blog about them…and then know when it’s time to shift gears and go into healing modalities, giving your busy mind a rest – and your body as well….
    In the spirit of healing, I send you love and light,
    Sue

  7. kbeamish March 9, 2012 at 6:32 am #

    My Sweet Chloe sent me your blog, when she read about my recent diagnosis of cancer. I too wait in limbo – after a month on tender hooks ( not near as long and scary as your experience), I find out today if the alien invader has metastasized somewhere else in my body. If so, the odds of surviving this scurge will plummet. If not, I remain hopeful that I will live to see my children grow into old age and have babies of their own. This cancer is teaching me alot. My own blog of this adventure can be found on http://karencan.wordpress.com/2012/03/06/the-big-c/

    Namaste, Karen

  8. Ali March 30, 2012 at 4:16 pm #

    I know this is an older post, but I just found your blog. I was diagnosed last May with AML and went through the whole deal with chemo as well. The chemo was unable to completely get rid of my cancer as well. I was lucky enough to have a sister that matched so they did the transplant at the beginning of September anyways. Although there are quite a few differences in our disease (I don’t have MDS, and I didn’t have as many infections) I wanted to let you know my transplant was a success and I have been in remission since early December. I hope that you have great success with your treatment.

  9. John Miranda March 30, 2012 at 6:04 pm #

    I found your site via your recent NYTimes article. I am sorry you are going through such a challenging test at your age. My wife had a BMT two years ago, on reflection, one small thing that helped was personalizing the room she spent ~25 days in. We carried in our large home flat screen TV, DVD, and many old movies (she likes old fashioned movies) – the hospital didn’t object. We put up pictures of Hawaii, her favorite place. We brought in an iPod + speakers to play soothing music, helping set up a better ambience.

    We found the medical staff amazing, and based on your comments your transplant team will provide great care to you as well. The recovery took a few months, but she regained her life, from walking a half marathon in Sedona this Spring to visiting Switzerland last Summer. I hope that your life, interrupted, will richly resume after completing your BMT. Best Regards, John

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