Living with Leukemia

It’s been many weeks since we provided an update on Deb’s health and her battle with acute myeloid leukemia, one of the most challenging and low survival rate cancers.  For the past weeks, we have been waiting for results from the donor cell infusion that took place on April 1st.  Unfortunately, the procedure was not successful.

Deb has become more and more tired since that time and spends much of her time in bed or getting blood transfusions at Kaiser. This is very challenging for her as she has always lived a very active lifestyle dancing, bicycling and walking, etc.  Deb has lost 40 pounds since this journey began further contributing to her weakness; she has difficulty walking without assistance. She is deeply missing her old life and being with all of you in the community.

Deb recently had another bone marrow biopsy and the results are similar to her last two biopsies.  Her bone marrow has a condition called serous atrophy which means the fat cells and stem cells that should be there have atrophied and been replaced with a gelatinous substance.  The biopsy also shows clusters of primitive cells that may or may not be leukemia.  They may be baby stem cells that cannot grow because the marrow is not healthy.  Stem cells need a healthy bone marrow supporting structure in order for them to grow.  There is no benefit to doing another donor infusion now while Deb’s bone marrow is in this condition.  Deb’s doctor said if she can gain about 25 pounds in the next 2-3 months, there is a chance that her marrow will recover. Then she could have the second donor infusion, which could take months to a year to determine its success; the chance of success is between 5% and 15%, assuming no complications.

Deb is trying very hard to eat more, but her stomach can only hold so much and then she sometimes has stomach pain.  But she is eating significantly more than she was a month ago, so we hope her stomach is stretching and will continue to be able to accept more food. Her doctor has also indicated that this weight gain over the coming months is necessary if she is to have a chance of recovering.  Deb is continuing to have platelet and red cell transfusions as needed – this is what is keeping her alive (if you’re not a blood donor, please consider becoming one!).

Deb has recently developed neuropathy (tingling and numbness) in her toes and feet, which is painful, uncomfortable, and makes it more difficult to walk.  We are rubbing Deb’s feet daily with neuropathy oil.

Deb, Andy and I thank you all for your love and support.

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20 Responses to Living with Leukemia

  1. Jonathan Toste says:

    Hi Deb and Andy, Been thinking of your both a lot, especially since I just had a near death heart attack experience in June myself. My healing thoughts are with you both and I will continue to send healing meditations your way- what a brave path you are on. Sharing it gives us all that much more heart fire to shine towards your healing and comfort. Infinite blessings to you, Jonathan Toste

  2. Ken Rose says:

    Thanks so much for the update. My heart, prayers and thoughts are with you all. Deb is an amazing leader and I know she will fight to eat with the vigor that she has fought successfully to create better places for us all to live. I am so thankful for this amazing work and the difference she has made on all our lives. Take good care everyone. Ken.

  3. ariadne says:

    Team Deb,

    Thank you for sharing your challenging journey, may you share in the special power of the summer solstice today, there is a yoga-in at Times Square NY, live stream now, http://livestream.com/TimesSquare/Solstice2015/ thinking of you!

    “Solstice” is a word that means “sun” and “staying,” or the sun standing still. While on other days the sun seems to move in the sky, on the solstice it doesn’t. May you meditate on the moment of the day for the sun to bring you special healing power to nourish your mind and soul.

    Sending love and prayers and strength!

    ariadne

    PS The Stanford Health Library can research any health question for you, this is the link I would be glad to help too, it’s a great resource, they send you the information, http://healthlibrary.stanford.edu/info-packet-request.html

  4. kitkeller54 says:

    Deb, all of the people you have touched through the years with your amazing spirit and energy gather around you now in a loving network of prayer, hope and support. We’re like a giant green lane around the globe, protecting you and cheering you on. Many blessings to you, Andy and Mary Lou. Much love, Kit and all your fans at APBP.

  5. Carolyn Helmke says:

    Wishing so much that the news was better and hoping that Deb is able to gain weight. One of my friends wrote a cookbook for cancer patients who need to gain weight (she wrote it after her husband had radiation to his throat area that made eating really unpleasant) and I would be happy to find the pdf and email to you if you would like. Also, when I’ve had neuropathy, I’ve found that any kind of massage helps, even to the larger muscles where you don’t feel it as much. Finally, love and healing vibes headed Deb’s way. She’s given so much to the world. Want her to return to her normal, healthy, vibrant self.

  6. jward78 says:

    Love and Prayers coming your way for healing and appetite to build back your strength. You are our hero! Thanks also to the exceptional, caring family around Deb. Jane and Steve Ward/Waller

  7. Cindy Winter says:

    Mary Lou, I appreciate your taking the time to write, as I can imagine how busy you are, caring for Deb, and when not doing that, needing rest for yourself. And the same for Andy. It’s hard to visualize Deb at 40 pounds lighter; she was never a large person to begin with. I’m hopeful that with baby bites and sips, progress will start to “snowball.” Alas, I’m not permitted to donate blood. Years ago I had hepatitis and apparently the bugs remain forever. But I am working really hard to carry on Deb’s advocacy and infrastructure work — that is something I can do — though I’m not part of the Alto Tunnel group as I have my hands full right here in tiny Larkspur, strange as that may sound. But the many of us who consider ourselves “Deb’s troops” are persevering, each in our own way, keeping The Cause alive, moving it forward. Love to Deb, with all my heart, and my deepest gratitude to you and Andy. Cindy

  8. Martha Roskowski says:

    Thanks for the update. Deb has such a big heart and so much courage. I am sending healing thoughts and love and wish I could do more.

  9. Mary Beth Powell says:

    Thank you for keeping us posted, Mary Lou. As difficult as this journey has been for Deb, we know that you and Andy and others close to Deb are suffering too. Please know that there are many of us out there who would do anything we can for her and for all of you. I’m going to go sign up for a blood donation this week. Please send my good wishes to Deb and lets hope she can put on a few pounds in the next few weeks. Thinking of all of you and sending hugs and positive thoughts your way.

  10. Brooke says:

    Praying for you, Deb. Especially for increased appetite and weight. I think of you often and always say a prayer when I do.

  11. It is such a tough journey. I’m impressed and continue to be impressed by Deb’s determination and Will to recuperate. Thank you for the update. As the tough days are happening I’m sure that Deb has the courage to face them with strength and joy. Viva Deb!

  12. readingrisa says:

    Thank you for the update, Mary Lou. While it is hard to hear, it is helpful to know what’s going on. I will be praying for Deb to gain weight and strength, to be comforted by the love surrounding her, to keep her spirits up and doubt away and to always know that she is embraced by a huge community. Much love to you all.

  13. Joanne OConnor says:

    II will continuento pray for Deb, She is so brave. God bless all ofyou during thisndifficulttime. Joanne

  14. Ted Barber says:

    The prayers of the Honor Sunday School Class continue along with many others. We specifically are praying that Deb can gain enough weight to allow her to win this fight against leukemia.

  15. jeanieww says:

    You are all amazing and inspiring through this epic battle. Sending Deb all the strength in my soul – and my stomach (!) – to keep healing and build back your marrow. Thinking of you all often and sending hugs. Thank you to Andy and Mary Lou for your steadfast caregiving!
    Jeanie

  16. geotech1 says:

    We had a meting of Deb’s Alto Tunnel group last night, and everyone of the twenty people attending asked about Deb and expressed gratitude and amazement at how much she accomplished. Our hearts are filled with sadness that Deb is suffering so much. We all send our love. Deb is always in our thoughts.

  17. Kath says:

    There is no doubt, that you are a woman of extreme strength. Continue to feel the healing wishes that surround you and know that you have a strong network of faith, love & comfort, supporting you. Sending sunlight through your window, with warm smiles and fondest wishes, daily. xxoo

  18. Thank you Mary Lou for the update. We are pulling for Deb and so sorry that she is suffering so much. She is such a wonderful person and has given so much in the past to the community in Marin and with her Bike work in the US. She is such a special person and it does seem so unfair that she developed this illness. Love and health and prayer for you DEB. Thank you Andy and Mary Lou and Tara when you can for helping Deb.

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