Saturday, December 27, 2008

Sally’s Adventure at M. D. Anderson

(Or, “Houston, we have a problem”)


Background….

In May 2008, Sally was diagnosed with breast cancer. A small spot on her spine was also found to be cancerous, thus pushing her over to Stage IV, or metastatic, cancer, a situation that is currently incurable.

After months of research, Hank located a researcher (Dr. Naoto Ueno) who is one of a handful in the world conducting research on arresting ‘bone-only’ metastasis. (It is more common to have metastasis in bodily organs as well.)

Sally’s disease progressed to more areas of bone despite surgery, hormone treatment, and radiation (no chemo, thankfully), so she qualified to participate in a Phase II clinical trial at M.D. Anderson, the world-renowned Houston cancer center. She is now the seventh person—on the planet—to undergo this procedure, which involves an injected radioactive element that will ‘zap’ all her bones, followed by a stem cell transplant.

(Note: All of this is rather long, but shorter updates will follow!)



The adventure begins….

December 10—Hank and I head to Houston for final tests before the trial, amid snow flurries!

December 12—A biopsy scare turns out to be a red herring. My cancer is still confined only to several places on my bones. Hurray! We’re cleared for the trial! Meanwhile in Tennessee, Hank’s wonderful parents load up their car. They will mind our three children for the 10 or more weeks we expect to be in Houston.





Above: We're “bubbling over” with happiness. The trial is a go!

December 15—We head to Houston for real, for more tests and to ‘consent in’ to the trial. Hank must also sign a document committing to be my always-present caregiver. More, more, and more tests and procedures as we troop around the huge hospital. It feels as if we’re in a giant shopping mall (although a beautiful, expertly run one), where we must ‘shop until we drop.’ But why are so many people wearing surgical masks?

God-incidence: Moments after our arrival, we run into Jen Mosher, a young woman from Chicago who is currently #6 in the trial. We had been connected through some breast cancer Internet contacts, and we finally meet in person. High five, stem cell sister! What a gift to know someone who’s gone through the transplant smoothly!





Above: Sally and Jen

December 16-18—We have some 12-hour days, often not getting lunch till 2 or 3 o’clock. I comment to Hank, “They sure don’t treat you like a sick person around here.” I have a double-tubed chest catheter surgically inserted, though which the stem cells will be harvested. (“Thank goodness I’m high as a kite,” I think while chatting away to the physician’s assistant doing the procedure.) The bone marrow biopsy wasn’t bad, either. I did NOT look at the giant needle, though.

And to add to the fun, a kindly male nurse teaches me to give myself Neupogen shots, which will boost my stem cell count for the harvest.

I must admit the needles were hair-thin, but the first time I do it I feel muy macho—on a par with Jason Bourne when he had to break into the Russian hospital to inject himself with morphine in one of the “Bourne” films.

I start wearing my face mask in crowded places. The doctors have shaken their fingers at me, declaring I must NOT catch a virus.




Above: Hank really digs Sally's new 'burqa' look.



We escape Cancerland for dinner at the home of a longtime business associate and friend of Hank’s.

December 19—We land an apartment owned by a nonprofit foundation. Quite a coup, considering that one-BR furnished apartments go for $1700 a month in the medical center. I must be no more than 15 minutes away from MDA in case of emergency. My insurance is covering the ~$150,000 experimental procedure (another miracle), but not living expenses.

December 21—Our precious Austin friends Kristen and Mark are in Houston for a family wedding, so we have a gabfest over brunch. This is starting to feel like a social whirl.

December 22—Showtime! The harvest process (apheresis) begins. We’re in the hands of Martin Korbling, a German doctor who was instrumental in INVENTING the process. How lucky is that?

My ‘cable TV’ catheter tubes are hooked up to a machine that will siphon off lots of white blood cells that contain my blood-making stem cells. In January, the radioactive isotope will destroy my bone marrow, along with cancerous cells there and in my bones, so I’ll have the stem cells returned in February to ‘rescue’ (yikes!) my bone marrow.

My entire blood volume is circulated through the apheresis machine three times. A very high-tech type of centrifuge does most of the work. I lay in one position for six hours watching “I Love Lucy” reruns.

The next day at apheresis, Hank and I have a visit from Polly Jo and Jamie Kemler, old friends and neighbors from our Illinois days, who are down from Boston visiting family. I cheerfully sign off on the labeled bag of stem cells that will be frozen and save my life later when they will help my body rebuild its immune system. It sure helps to be distracted!

December 24—I’ve generated enough stem cells to go home for Christmas! A typical session yields 1 million cells, but in two, we hand over generously more than the 5 million needed!

Hank and I jump in the car for several days of “shore leave” back home with Hank’s parents and the kids! How lucky is THAT?!?! The girls have made me a window hanging commemorating the moment when it became clear to me that I should join this trial. Happy tears!

Wishing you a new year filled with love, happiness—and good health.

Stay tuned for updates!


13 comments:

  1. I think "courage" describes the entire family, especially you, Sally. Thanks for giving us the opportunity to keep abreast of your journey. We all wish you the best possible new year in the form of a successful stem cell transplant! We're pulling for you.
    Carolyn

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  2. Clarity and courage! Wonderful words for the whole wonderful family. I love being able to keep in touch with your story. Much love and many prayers for all of you, Sally: family, docs, apheresis techs, needle people. Love.

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  3. Thanks for the opportunity to be an ongoing part of your healing team! I'd love to hear more about the moment of clarity if you would be interested in sharing the story... many prayers.

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  4. Thank you, Sally, for allowing us to join you from afar on the adventure. You know we're all thinking of you and praying for you every day so to be able to keep up with the journey is a great gift. A heartful of love and many prayers for you, Hank, the kids, the great in-laws and everyone involved with healing hands!

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  5. Sally -- I don't think your blog is "blah, blah" at all! Thank you for keeping us all up to date, and we are holding you and your family in our prayers!

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  6. Wow! What a spirit you are Sally, and how brilliant are your children! My prayers are with you and your family many times every day. I will keep checking up on you through the blog. Lots of love, Theresa

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  7. Hi Sally... You are my transplant hero!! I've been hearing updates on your decisions and progress from Marie of the IV League and Hank. My mets are also bone only at this point. My prayers are with you. Ellen

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  8. Sally,
    Thanks for letting me tag along. Since you are #7...my mind won't stop thinking about 007. Much love from one of your fans from the IV. Deb

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  9. Dear Sally,
    Thank you for this gift; what a beautiful way to keep us all in the loop. The kids' wall-hanging is inspired - you are clearly doing your work well.
    Jeff, Helen, and Lia join me in sending you and Hank great hugs and love -
    Karla

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  10. Hi Sally,
    I'm sorry to hear that you are struggling again will illness. You and your family are in my prayers. Courage gives you strength and strength gives you courage. Don't EVER give up. When things begin to feel hopeless, just remember,
    But With God, All Things Are Possible........
    Matthew 19:26
    I will check in with your blog again.
    God Bless for a Healthy and Happy New Year!!!
    Jeannie Cheung

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  11. Sally,
    Your updates are so interesting and informative.
    Thanks for doing the blog for those of us who want to know the ins and outs of a stem cell transplant for the bones.

    You are blessed to have the key creator of this process there with you. That gave me the chills, like you were definitely meant to have this transplant.

    Your attitude is amazing. I think about you often.
    Warm Hugs, Deena

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  12. Hey Sally and Hank
    So happy to see your pix from the holidays. Thanks for going to the trouble to do this bloggy thing. I think about you every day and pray for you even more often. FYI: The Trinity Shepherds are getting involved in the Care Calendar for meals. Love to you both. Cathy

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  13. Hi Sally,
    Thanks for making me privy to your non-blah blah blog. Your support group in Austin is cheeirng you on every step of the way, and we'll be waiting for you when you're all recharged with new healthy stem cells. We're sharing this experience with you.

    Janey and Kim
    Parents with Cancer support group!

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