Going Home Soon!

Good news! The plan is that I’m moving home soon!

I left Marin on March 9 to come to Stanford Hospital to have my bone marrow transplant (BMT) and to be cured of AML forever. I was discharged on April 8, and my Mom and I have been living in a very nice townhouse on the Stanford campus since that time. Because I’m doing so well healing, we recently got the green light that I’m ready to live at home again!  The moving date is planned for June 18 which is +91 days since my BMT.

There are a few important things that have to happen before I go home though. On Wednesday, June 11, I will have a bone marrow biopsy (to ensure that there is no cancer left in my system), and that same day I will have my central catheter removed.  My Mom and I will be at the infusion treatment area (ITA) at the hospital for most of the day.  It will be my seventh bone marrow biopsy since last October, and the first without my boyfriend Andy holding my hand — but my Mom will support me!  Bone marrow biopsies are never fun, and have usually been quite painful for me – so I’ve asked for pain killers this time…

The catheter was inserted into my chest three months ago.  During the month I was in the hospital, it was used to deliver chemotherapy, blood transfusions, antibiotics, IV food and hydration, and the stem cells from my anonymous donor.  The catheter has also been used twice a week since I left the hospital at the ITA to draw blood for the complete blood count (CBC) which measures my levels of white cells (fight infections), red cells (carry oxygen), and platelets (form blood clots).  The doctors and nurses are pleased with my blood counts, which are all slightly below a “normal” person’s levels, but they say my counts are “normal” for a BMT patient at this time in my healing process.

I have an appointment with my bone marrow transplant doctor at Stanford Hospital, Dr. Robert Lowsky, on June 18, and afterwards, Andy, Mom and I plan to hit the road back to Marin County.  I will learn the preliminary results of my bone marrow biopsy at that appointment and am anticipating and praying that it will be cancer free, now and forever!  If you’d like to support my healing by envisioning a clean bone marrow biopsy with only healthy cells, I would greatly appreciate your support. I intuitively have felt since the BMT that the leukemia is gone, but it will feel really good to have the biopsy results to confirm that hunch.

June 27 marks the magic Day +100 when I can start to go outside in public without my mask.  I’m thrilled to be approaching day 100, as the first 100 days are the most critical for BMT patients.  It’s a landmark to be post day 100!  However, I will remain at increased risk for developing infections and the post-transplant illness called graft vs host disease, and will still be taking numerous medications, so the healing and doctor appointments will continue.  I’ll be seeing both my Stanford and Kaiser Permanente doctors for some time after I move back home, and bone marrow biopsies will be scheduled for every 3 months.

The only sad thing coming up is that my Mom will be flying home to Pennsylvania soon after we return to Marin.  She’s my amazing caregiver, Mom and friend, and I will miss her, our evening walks, night-time movies, cooking and companionship.

Celebrating my “45 and Stayin’ Alive” birthday!  (No, my hair hasn’t grown back yet, I’m wearing one of my wigs).

Celebrating my “45 and Stayin’ Alive” birthday! (No, my hair hasn’t grown back yet, I’m wearing one of my wigs).

Throughout this entire process, I continue to be so grateful for everyone’s love and support, and for the skill of the doctors and nurses who have been treating me. So many people are still sending prayers and good energy – thank you! This is very helpful. I definitely have a lot more healing to do to strengthen my new immune system, and increase my blood counts and energy.

I recently had a birthday, and my motto is, “45 and Stayin’ Alive!”  Does that make you want to start dancing to the 70’s Bee Gees’ song?  “Ah, ha, ha, ha stayin’ alive, stayin’ alive…!”  Hope to see you on a dance floor soon.

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8 Responses to Going Home Soon!

  1. Tara says:

    Cute, i love your reference to the Bee Gee’s! We will miss you Mary Lou…! 😉 Love you Deb…

  2. Joanne OCConnor says:

    I’m so happy for you Deb! God bless you and may you continue to feel stronger each day…. We’ll look forward to seeing your amazing Mom . Joanne

    Sent from my iPad

    >

  3. Michele Uy says:

    I LOVE the Bee Gees! And yes, I am dancing right along with you all the way on the other side of the country! This news is beyond wonderful! I will absolutely continue praying and sending positive thoughts and tons of love your way. You got this girl! Big, tight, GIANT hugs to you! XOXO

  4. Joe says:

    That’s terrific. I cannot wait to hear the news of a clean biopsy.

  5. Cindy Winter says:

    Hi Deb — Happy, happy news! Only thing, those bone marrow biopsies. I’ve always heard they’re painful. Why isn’t some simple painkiller available? Even a codeine pill might take off the edge. I’m betting the medical staff have never had that procedure themselves. Anyway, make a fuss! And…the future beckons!!!!

  6. David Burwell says:

    Hi Deb, Congratulations! I so much enjoy reading your posts as they track my journey as well–except that you are ahead of me so you are my “scout” as to what lies before me. I am only at day 25 but am fortunate enough to live at home (came home on Day 19) and go to the In-patient/out-patient (IPOP–same as your ITA) clinic at the Johns Hopkins Medical Center in Baltimore (JHMC) for daily IVs and tests. My latest post on my journey is at http://www.caringbridge.org/visit/davidburwell. How I wish I were at day 100! so good you have made that milestone. I face several challenges, not the least of which is the key window for GVHD that runs from Day 30–90. My wife Irina is petrified–me less so since we have such an excellent team at JHMC and my brother was a 100% match. Your GVHD sounded scary–so glad you are past that now. I will continue to follow your progress with interest–and let’s agree to meet sometime–you, Andy, me and Irina–to celebrate our new freedom. In the meantime let’s embed Safe Routes to School and Complete Streets in title 23 of the US Code. Best wishes, David

  7. Dear Deb – you will do very well with the whole check up procedure and check up and removal of the catheter. BEST OF LUCK and GREAT KARMA!!!! YOU ARE SPECIAL AND ALL THE VERY BEST AND LOVE FROM US ALL in the CHEESEMAN FAMILY INCLUDING TARA AND TED AND GAIL AND I.

  8. Brooke says:

    This is awesome news, Deb! Yay! Praying for great results on your next biopsy. I know Marin can’t wait to get you back in town. And yes, I do feel like dancing 🙂

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