La Familia, GVHD, CMV — Cha Cha Cha

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It takes until 5:00 PM before the predicted “afternoon sun” finally emerges. To be frank, I had given up on it. Still, though it’s been a prolonged gray day, the weather forecasters were right. It is “afternoon sun”. I hope that “beating cancer” and what the doctors and survivors say, that the sunlight of health will show up is true, even if it’s a long time waiting for it.

All the cancer news is good. The last test we’d been waiting for came in saying just what we wanted it to say; that the Philadelphia Chromosome has been eliminated from my body. If you’ve forgotten, since it’s been a while since I wrote about it, this is the once deadly abnormality that causes the cancer cells to grow uncontrollably. So we have the final test back to show that the transplant was successful. But you don’t get very far in the happy dance before other dark forces make themselves known.

CMV (cytomegalovirus) keeps stalking me. The numbers got up into the “ohmygod” region, freaking the doctors out. Mariya’s immune system is still too immature to fight it off. Plus all this immunosupression I am on keeps my body from mobilizing to slam the CMV down. CMV is in 50 % of adults, a leftover from many common childhood diseases. Normally your immune system just handles it. Since I wasn’t responding to the first more mild med, they put me on a much stronger med which injured my kidneys, and required lots of fluids to wash it out–so that was three IV two-hour long saline fluid sessions a day. Luckily I did this at home. The med itself took another hour and a half, so that was a total of nearly 8 hours a day with “mini Herman”, the portable IV pump. The numbers came down to “very high” to “high”. Last week, I entered a clinical trial for a new drug which will hopefully handle the CMV without destroying my kidneys.

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Trying to put my body back into some kind of balance is definitely the battle now. After an endoscopy, I was told I do have GVHD (graft versus host disease) in the stomach. The symptoms are a drastically reduced appetite, feeling of fullness after just a few bites, vomiting and even more fatigue. As the days have gone by, and the pounds with them, I have nearly given up on food and now simply force myself to take in 3 Ensures or protein shakes a day to get calories into my system. The drug they give for reducing GVHD gave me high blood pressure, so now they have had to put me on a drug for that. The other therapy is steroids. The pharmacy compounded a formula which goes into my stomach with a milliliter of corn oil. This steroid is not system wide, so it is preferable to a powerful drug that affects the whole body. If I get better, I may be able to escape prednisone, which has so many side effects that I get sad just looking at them.

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Both girls have gone from our lives like the passing of summer. Mariya has returned to Tahoe and school. And Tuesday, with a mixture of tears and excitement, Elena began her trip to Peru. It took her 2 days of traveling . . .  made infinitely easier by a friend from Friday Harbor, who generously offered his house to her to spend the 10 hour layover in Atlanta. She is now in Cusco, in the shadow of Machu Picchu, an irony which is not lost on us, since that was our destination when all this began.  Cancer gave us the gift of “La Familia”. Now we go back to our lives—but with this profound difference in our collective memories—this shared battle, deep love and mutual experience of the past several months. We are not the same people who began this journey in February. I could not imagine the cancer experience without my generous and loyal husband and children. It frightens me that others do without.

My steps will continue to be a choppy cha cha. On the positive side of things: I can now walk for an hour. Since I had to fight for that, I say it proudly. But today was shaky, literally. My body would have used the words of one of my favorite children’s books: “a terrible, no good, very bad day”.  I—we—are all sick of this and want steady progress, but that’s not how it is. I am feeling strong enough to drive, but the GVHD fatigue is as bad as anything I have yet experienced. And on it goes.

This blog has not been my best writing, but it has always been honest writing. The aftermath of leukemia + transplant is bruising. Every time I start to express it however, a conflicting feeling catches me. I am ever so grateful to be cured of cancer by modern medicine, but also shaken by the treatment. It is difficult writing because it is complicated thinking through thorny feelings. Sorting it out will be the topic of my next blog.

11 comments on “La Familia, GVHD, CMV — Cha Cha Cha

  1. Dear Shann,
    Such a struggle and I can feel it in your words. I send you strength and love with all my heart and mind. Lenore

  2. Shann,
    You continue to awe and amaze me. Your strength and drive is truly phenomenal. Your ability to reflect and express, even more. My heart stays with you. Love to you and Steve. Thinking of Mar and Elana makes my heart swell, and beat a bit faster. You four are such an amazing combination.
    Always,
    Megan

  3. I was in Macchu Picchu just about a year ago and I can see your daughter now, (in my mind) standing under a tree in the central Plaza. I have a picture from my trip that I would attach but this program won’t let me. So you get to imagine it too!

    Now is the real battle although I know you are aching for a truce. We are all still with you and the pipe is still together. Heal, Shann, with all the joy you’ve known and are still to know. HEAL! You’ve had the best doctors and the best medicine and now you get to listen to yourself and HEAL And thanks for continuing to let us know how you are. Maybe not your best writing but right it certainly is, so no need to apologize.

    Wishing you real, true hunger that it feels good to fill. And sweet times ahead. – Marnie

  4. Dear Shann: I can feel your hurt and suffering and also your fierce determination in your still lovely writings. My prayers are always for you and Steve and for your comfort and healing. I really hope for your soon to be body balance and ability to not hurt so badly. I love your writing and look for more with more good news!
    I know you will be enjoying the Fall color changes and describing them in your unique way. Loving you, Shirley

  5. Shann, I think you are much like the Protea flower, unique unto itself, a symbol of strength. The irony that it is named after Proteus, first born of Poseidon, is not lost on you. Being a “Protean” has positive connotations of flexibility, versatility and adaptability according to Wikipedia. You have displayed strength and adaptability throughout this long process; and let’s not forget courage, of which you have much. I’m still praying, still cheering and still celebrating every little foot forward. (speaking of feet – I miss the constant deliveries from Zappos and the fun fashion shows that followed!) Keep on, Shann!
    Love, Susan

  6. Leave it to you, Shann, to dance the “cha-cha-cha” rather than take “2 steps forward, 1 step back” on your aw(e)ful journey. You continue to amaze us all with the power of your written word and the strength of your spirit. I am in awe of you. Still praying for you and all of the family. Margaret & Peter

  7. I liked this writing, it was uncomplicated and straight forward, not much prose and flowers. I think that I or Lois may not have made it through as you have, sobering. I think my kids might. I think we don’t know our strengths and weaknesses until we are in the fires. love chris

  8. Dearest mama, I was happy to see a new blog post from you – writing is like medicine. It is so hard to be away from you and dad, but I know that we all must focus on what is right in front of us. I love you, keep the posts coming.

  9. Honest writing is always easy to relate to and the best route I would guess. It all
    sounds like a lot more positive of a road to be on now than before. It is behind
    you but forms you and yours and it a deeply moving experience. I look forward
    to your sorting it out —–with us.
    I’m sooo very happy when I get a text from Scarlet that she is going to yoga or
    a walk with Mariya. It is comforting to know they have family there too.
    Warm autumn thoughts from Idaho.
    Julie Caldwell

  10. Shann,
    Our thoughts are with you in your daily struggle.

    You were asking for any tips for Elena.
    When we were in Peru 3 years ago we met the most amazing woman called Sonia
    Newhouse. She came to Peru as a 70 year old from England without knowing the language (quickly took classes and mastered spanish) and has founded an organization called Living Heart Peru. This organization helps women and children in the six villages in the sacred valley. One of the things she did was open the Living Hearts café in Ollantaytambo. Here she has taught the local women to cook for tourists and run the café. They also sell products made by the women from the villages. She can check out their website just look up Living Hearts Peru.

    Sonia is still active and regularly posts on the website (she must be in her eighties now and is such a source for good) If Elana gets the chance to visit Ollantaytambo tell her to check out the Living hearts café. if she is lucky she will meet Sonia as we did..

    Sending our love Jilly and Michael Watson (Eliot seabeck)

  11. It is so hard to put into words – and I am amazed that you express so much in words – but I wish for you and your family all the healing you can muster, all the beauty you can absorb and all the love you can feel from your wonderful family and friends. I head to Bhutan in two days. I will hang a prayer flag for you.
    Blessings,
    Kathy Shinn

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