Day +104

Thank you to everyone who reached out to me in one way or the other over the last week or so. I realize it's been a long time since I've blogged. I have had a blog post partially-written for about a week, but just haven't had the desire to finish it. But I'll do it today! :)

Even though I'm not on the traditional path as most BMT patients, I had wanted to post on what is still the 100th day after my transplant. That was last Thursday. But when the day came, I just wasn't feeling it. No celebrations, not particularly good news, nothing worth posting. But I *am* on the other side of those hundred days, and I'm still alive, so that's something! 

This chemo (Decitabine + Venclexta) is supposed to be a milder chemo, but it really knocks me out. The week that I have infusions is actually pretty good (other than the annoyance of hospital trips and infusions and waiting). The weekend after I feel a little queasy and not quite myself, but that's not terrible. Then I have a few decent days before my counts start falling. And this nadir seems to last a full two weeks. I'm right in the midst of it now and if this second cycle follows the pattern of the first, I should start creeping out in a day or two.

I have essentially no WBC (ranged from 0.2-0.4; currently 0.2). My hemoglobin has been crappy (7.4-8.8; currently 7.4). My platelets have dropped since my last post (50K - 8K; currently 19K). About the best thing I can say is that (so far) I've needed fewer transfusions this cycle than last cycle, but I've been close.

I also wanted to share information from my last appointment with Dr. Atallah a week ago. Since my WBC counts are so low, they are unable to check my peripheral blast percentage and we won't know if this chemo is effective until my next bone marrow biopsy, which is this Wednesday. I will get results from the biopsy at my next appointment on Monday the 24th. The absolute BEST case scenario is that my biopsy will show that my marrow is clean (send those vibes!). If my marrow is clean and my counts have rebounded some, I'll start the next round of Decitabine that day. If my marrow is clean and my counts are still low, I'll take a week off to let my counts rebound and continue with Decitabine treatment. But if there's still stuff in my marrow (and let's be honest--this is probably the most-likely thing), then we will talk about clinical trials. 

After that discussion, Dr. Atallah said, "now we have to talk a bit about something else." My heart dropped. And he continued, "I've heard that you have concerns about people not wearing masks in the cancer center." <insert sigh of relief> To make a long story short, he pointed out that some patients (like lung cancer patients) may not be able to wear masks and that is between the patient and their doctor. (I did ask if they couldn't immediately put those patients in a room instead of the open lab and waiting room. He said he'd look into it.) I also said it wasn't just the patients, but caregivers. I said that I am an outspoken person and I had a hard time saying anything and that I finally said something for all the other patients who were also being put at risk. He asked me what they could do to make me more comfortable. My eyes welled with tears, and I said I just didn't know. He asked if I would feel better going to a local clinic for blood draws and I said that I knew Mequon didn't draw from a PICC line. He asked how inconvenient New Berlin would be for me. My amazingly intelligent, busy, kind oncologist then called up Google maps on his computer to see how far of a drive it would be. It turns out that the New Berlin office is closed in the interim. But then he asked about Drexel Square. He told me they can do labs and all treatment except for the doctor appointments there. And I clarified that he wasn't going to drop me as a patient. He laughed. Then he called to have my future lab appointments changed to Drexel Square, effective immediately. And he thanked me for looking out for all their patients.

Last Wednesday was my first trip to the Drexel Square Froedtert Clinical Cancer Center. Travis drove me and was allowed into the waiting room, but not back into a room with me. They stated their policy that only patients are allowed (also the main campus's policy, but I know they've given up questioning guests and almost everyone there has a guest), and that they'd allow Travis that day, but not in the future. The first visit I needed platelets, and it turned into a long day because they had to get the platelets from Versiti and had a new courier who took over two hours to deliver them. The second visit I was dropped off and had to wait 25 minutes for Greg to pick me up. I asked a nurse if there was a more private place I could wait than in the waiting room, and she gave me a chemo bay chair (curtained off). Today I didn't even sit in the waiting room--the same nurse called me immediately back to wait in a chemo bay for my lab results. With very little exception (one man in the waiting room my second day with his nose out), everyone has been good about masking. And the waits are shorter than my extended drive time. It's just a lot less chaotic. Unfortunately, besides the delayed courier thing with platelets, they cannot do red blood cells same-day, so if/when I need those I'll either have to come back the next day or head to the main hospital to get them that day. And my biopsy and appointments with Dr. Atallah will of course be at the main hospital. Still, it is so nice to not be as freaked out over germs!

I did something that I hope I won't regret: got the whole family (except Cara) haircuts. My friend Denisa just started at a new salon and she and a coworker came in an hour early, masked, and didn't let anyone else in the shop. We all wore double masks (surgical with cloth over the top). Ash, Greg & Travis had been good sports about letting me cut their hair, but they all look a whole lot better now! As for me, I got two wigs trimmed/styled. I didn't realize that was something you were supposed to do! Maybe why I hated my last one so much? Anyway, all of this is to prepare for having family photos done later this month. Please cross fingers that it doesn't rain on August 27th since we're (obviously) doing outdoor photos. And Cara will be briefly in town.

I'm not completely sold on either of them, but it would be nice to have photos w/o sun glaring off my bald head!

I have continued to (slowly) bike and walk. I'd worked my way back up to a 13 mile ride, but this week (nadir) I'm more of a 2 mile ride person. Luckily I have people who will ride with me, no matter how short of a distance or slow of a pace.

Other than that, I'm just taking it a day at a time. That part is still a struggle for me, but I guess I'm getting used to it. I probably won't blog again until sometime next week (may not be right away on Monday, depending on what we know). Feel free to send positive bone marrow thoughts (which is actually negative, as in no leukemic cells or blasts) on Wednesday at 9:00 am during my biopsy.