Day +72 Update and National Cancer Survivors Day
Today is Day +72 post transplant, and I've felt physically better the past two weeks than I have since before the transplant. We finally got the Epstein-Barr Virus and CMV under control with medications, and both tests came back negative!
Despite our success with the viruses, I had another setback two weeks ago and was re-hospitalized for four days. I had some stomach issues that became so bad they were diagnosed as acute graft vs. host disease (GVHD) in my upper and lower gut. At the time, I felt like it was a huge blow because I didn't want to be re-hospitalized after my very isolating four week hospital stay in March, and I was nervous about being put on steroids for treatment. At the same time, I was barely eating one meal a day and couldn't get out of bed most of the time because of stomach pain.
Once admitted, my endoscopy and colonoscopy showed no signs of infection, and I only have mild GVHD of the gut (yay, it's not the really bad kind!). We've since slowly tapered the steroid dosage over the past two weeks. The goal is to drop the dosage as low as possible before day +100 (June 30th). At that point, I will likely remain on the same dose for at least six months to keep any GVHD at bay. The most common predictor for chronic GVHD issues (which arise after day +100) is contracting acute GVHD during the first 100 days. And I also have a higher GVHD risk because my donor was a 9/10 match instead of a 10/10 match. Ultimately, we hope the steroids will keep the GVHD under control. The medication will, however, along with my anti-rejection medication Tacrolimus, keep me immunocompromised until I am completely weaned off of both.
Otherwise, I've had some good news this week. Besides the negative viral tests, my blood counts improved significantly. For those interested, my white blood cell count was 5.37, platelet count was 123, hemoglobin was 10.9, and neutrophils were 4600. For reference, most of those counts were at or close to ZERO right after transplant.
In addition to my regular clinic visits this month, we are also taking steps to transition and move back to Louisville by early July. I will have another bone marrow biopsy (my fifth!) in a couple of weeks to check for any lingering BPDCN cells. Although my doctor says she normally wouldn't check it given that my platelets are doing well, we're going to anyway since I had a small population of BPDCN in my bone marrow in December when my counts looked normal. I'll also have a pulmonary function test and probably a few other tests tacked on, and I will meet with my physical therapist to review my post-transplant progress.
Of all of my upcoming appointments, I am most excited that my port will be removed on June 22nd. That will be the first time in SIX MONTHS that I won't have to shower with a huge waterproof bandage over my entire chest. I CANNOT wait until it's out! The daily care has become routine and easy, but nothing says cancer patient like a port bandage peeking out from the top of your shirt. And I think I'll feel like I have my body back again since I won't have a foreign object with tubes hanging out of me. Again, I cannot wait for this procedure.
Finally, I wanted to ask that you each take some time to help me celebrate the 30th annual National Cancer Survivors Day on Sunday. I have been a BPDCN survivor since the day of my diagnosis, but as I continue to progress through treatment and recovery, the emotional and physical issues don't just disappear and will take time to work through. Please celebrate with cancer survivors like me and help bring awareness to survivorship issues with us on Sunday.
P.S. I'm wearing my wig and makeup in the photo! They truly make a world of difference. Most days it's still a bald head (well, maybe a centimeter or so of hair) and no makeup around here!
