Mask Free Dances and More!

On July 17, I had an awesome visit with my Stanford bone marrow transplant doctor, Dr. Robert Lowsky.  The date of the appointment was exactly nine months since I was diagnosed with leukemia; now the cancer is gone and the doctor says I’m doing great! I am grateful beyond belief.  Here’s the update:

Sometimes it takes turning life upside down to get a new perspective.

Sometimes it takes turning life upside down to get a new perspective.

  • He says my blood counts and chemistry are “excellent.” The white cells are still below “normal” levels but that is because I’m on the immunosuppressant Prograf to keep my donor’s immune system calm and happy inside my body.
  • I can go to dances now without my HEPA filter mask— yee-haw! Ecstatic dancing is one of my main forms of being social and exercising. It is so much more fun (and easier to breathe) without the mask. I took full advantage of this new freedom last weekend by attending the Dance Camp reunion and Open Floor dances. These DJ dances are free of alcohol and drugs; we use dance as a form of meditation; there is no talking on the dance floor.
  • I still have to stay out of the sun to avoid getting a rash, and I’m still using the cortisone cream, but I don’t have to go on oral prednisone. Staying out of the sun should keep it that way.

    Yoga - reverse side angle

    Yoga – reverse side angle

  • I’ve had a weird “electric” type of sensation in my lower spine when I look down for about a month now – my doctor said I should start exercising more to rebuild my muscles. The sensation is still there, but exercising more seems to be lessening the feeling. I ride my bike or walk at dusk each evening, dance a couple of times a week, use my stationary bike, and am doing yoga regularly.
  • I have permission to start the next level of yoga teacher training (500 hour program) in October; Dr. Lowsky encouraged me to start doing more yoga now to build up to this, so I’ve been practicing for an hour each morning.

At this point – on Day +127 since the BMT – I seem to have regained about 50 percent of my energy level.  I still get tired, nap each day, do a lot of resting, and have some stomach issues, but I’m definitely improving!  I have a confidence now that the leukemia is gone forever.

I’m meditating on harmonizing my body with my donor’s immune system, bone marrow and blood. It’s amazing to realize that at this point in the process all of the blood in my body is from the cells of my donor, “Mr. International.”  While I’m still restricted with what I can do right now, I’m visualizing myself fully healthy, thriving and able to go out in the sun again someday.  In the meantime, I have the curtains drawn and I’m doing a lot of reading, watching movies, enjoying short visits with healthy friends at my house, and happy to be alive.

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9 Responses to Mask Free Dances and More!

  1. Brooke says:

    Such an inspiring update, Deb! Yay!

  2. I’m so happy you’re alive, too! I’ll think of you as I do my daily morning yoga. Much metta…

  3. Joan gerard says:

    Wonderful report, Deb. Always thinking of you and so happy to hear of your amazing progress.

  4. Cindy Winter says:

    Hello Deb, thank you for keeping us all up to date, the difficulties and the tremendous rewards. Sounds like you’re doing everything that is just right for you, physically, spiritually, and vocationally (this last on the back burner). I follow your progress with awe and confidence. Cindy

  5. Lydia Voigt says:

    I am so Happy for you and also very proud of your positive attitude. You are an amazing gal!!!!

  6. Chris Hirtzel says:

    Great news Deb. I am very happy for you. Christine Hirtzel

  7. Glenna and I send you healing energy. It so wonderful hear that you are now cancer free.

  8. David Burwell says:

    Hi Deb– Great article and great news from your doctor! I plan to take yoga lessons myself as soon as I have the energy. I remain deeply in your debt as the pioneer who prepared me for my own journey through AML. Thank you! I am now at day 67 post BMT. I was discharged from the out-patient clinic last week–on precisely day 60 after my BMT and exactly five months after my first attack on Feb 17 . My first appointment with my “following” (long-term) doctor is tomorrow. His name is Mark James Levis and he is the Director of the Leukemia Department at Johns Hopkins Medical Center–I was very lucky to draw him as my long-term care doctor. Like you, I am champing on the bit to get out, go everywhere and do everything. However, I know I am still weak due to low blood cells counts and I also get a slight rash if I have too much sun. I lost 25 pounds in the process, which was fine by me–I didn’t need the extra weight. However, I lost muscle, not fat, so I have a lot of exercising to do. When we are both back t 100% I hope we have a chance to meet. Look me up when you are at the next bike or SRTS summit in DC. I would like to talk politics going forward for making the US a bike and pedestrian-friendly country–a tall order given the car-focused transportation policies we adopted a long time ago. But, as Will Rodgers said “Stupidity got us into this mess, it can darn well get us out!” I know I still have a long way to go–thanks again for shining the lamp on the road (trail) before me. You are a true inspiration for me to trot–if not run–towards the light. warm wishes, David

  9. Risa Wilkerson says:

    Nice update, Deb! Risa

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