I probably should stop making predictions

Today was my second appointment with Dr. Atallah and the appointment where I'd get the results from my third bone marrow biopsy and would likely start the next round of chemo. As I'd written last week, unlike the doctors at St. Luke's, the Froedtert doctors like to do more frequent bone marrow biopsies to check on disease progression (or remission) before continuing with a chemo regimen. I *knew* going into the appointment that there was no way that I'd be in remission--especially since, due to insurance delays, it was only one of the two chemotherapies that I was supposed to have taken.

Dr. Atallah walked in and said, "your marrow looks great." I smiled and didn't think much of it. Then he said that the biopsy showed that my marrow was hypocellular with no visual evidence (per flow cytometric analysis) that there was any leukemia present. My jaw dropped and I told my kind, wonderful doctor, "SHUT UP!" My head was spinning and I couldn't believe what I'd heard. He said that there was no reason to start chemo today and since my blood counts were moving upward, he wanted to give them a chance to recover further. He told me to come in in a week, get labs done, and by then he'd also have the cytogenetics from the biopsy and we could figure out next steps. I think I said, "shut up" a second time.

I am by no means out of the woods yet. The cytogenetics are a big deal and given that my first two biopsies both showed the outrageous 14 genetic abnormalities, I'm not really expecting to get a clean report next week. If there are still cells with genetic abnormalities, and my counts have recovered well, then I will start another round of chemo next week. Depending on which genetic abnormalities persist will determine if I just get Vidaza (the hypermethylating agent that works indirectly on P53) or if I add Venclexta (which blocks the BCL2 protein). I'm pretty excited to NOT have to spend my birthday in the chemo ward!

But it is most definitely moving in the right direction and I am, for the first time, daring to consider my future a bit more.

I asked about the timeline to transplant, if I am determined to be in remission from a cytogenetic standpoint as well, since St. Luke's had said that I would likely have 4-5 cycles of chemo regardless of the biopsy results. He said that in addition to insuring that I am in remission (the biggest hurdle), they have to secure a bone marrow donor. My in depth results aren't back yet (insurance approved that procedure last week and I did the cheek swab last weekend), so he said in a perfect situation, the transplant would be two months from now. EEK! Again, everything would have to line up perfectly for that to happen, but we're talking about it, so that's something. Essentially, it seems that Dr. Atallah (rightly) feels that the longer I am walking around immunocompromised, the riskier it is. So build up those blood counts for now, and get to the transplant ASAP. I'm on board with that.

A few other things since my last post:

As I'd said, my blood counts are maintaining and sometimes climbing on their own. After I had the reaction to platelets on January 2, my platelets and hemoglobin went up.
Platelets: 27(with transfusion)>26>43>75>77>73
Hemoglobin: 7.2>7.3>7.5>7.9>7.7>7.9>7.7
All without transfusions. It's like my bone marrow heard that there was a severe shortage of blood in Milwaukee this month.

Unfortunately, my white blood cells seem stuck. In the same time period, they dropped from a "high" of 0.8 to 0.4, 0.5 or 0.6 (essentially all about the same level--and "normal" is 4.2-11.0). Here's hoping that another week off chemo helps with that, too.

I called Dr. Shah's office (my breast cancer oncologist) for a refill of my Femara prescription--the aromatase inhibitor that I take since my breast cancer was ER and PR positive. It's supposed to prevent recurrences. She said that I didn't need to take it now, and it had the potential to interact with some of the chemo/meds I'm on now or to cause more severe side effects. I'm not sure how I feel about that. On the one hand, I'm happy to be taking one less medicine--especially one that had significant side effects on its own. But on the other hand, it was my insurance policy (admitted not a great one...) against metastases. I have to trust that she knows what's best. :)

My insurance finally approved the switch in anti-fungals, so tomorrow is the first day I'll take the voriconazole--the one that can cause hallucinations. I'm kind of glad that I'll be easing into it without the added burden of chemo at the same time. And I'm still hoping I'm in the 70% of patients who do NOT have hallucinations. General problems with my vision are more likely, though.

I probably jinxed myself by saying multiple times that I had no pain, because my knees have gotten steadily worse--especially my left knee. I have no idea what it is or even if it's joint or muscle pain, but they are weak, and it's hard to squat or get up from bending down without pulling myself up by my arms. I've been trying to exercise through the pain, walking when it's safe (not icy) and riding my bike on the trainer. They hurt when I move and they ache when I'm still. But I am not going to let a little pain keep me from keeping up my strength as best as I can.

Finally, thank you so much to everyone who signed up to drive me to appointments, to be on call, and to walk with me. I will be contacting those who signed up to drive me to chemo this week to cancel the rides (hooray!). When I have my appointment with Dr. Atallah scheduled, I'll need a driver for that, and if he says I need chemo after that, I'll need drivers for the following week.

I also decided to add another tab to the spreadsheet. This week I spent a lot of time home alone as everyone was back at work and school and I only had appointments two days this week. And I learned that my mental health doesn't do too well when I spend too much time alone in one location. I know it's going to get colder and be dangerously icy for walking and not everyone likes to walk. So if any of you want to come visit--and are healthy and willing to wear a mask--I would welcome visits of about an hour. You can sign up on the tab to be on call :) or you can suggest a day and time to visit. Please remember that I still don't have neutrophils, so only come if you're healthy.

Karen came to walk with me and pushed me to walk 2.3 miles!

Right now I feel better and more positive than I have since this all began. I am taking the good days when I get them, knowing that there will undoubtedly be more cloudy days. Thank you all for your continued good wishes and thoughts and prayers. They move mountains!