Superstitions and good luck charms

I wouldn't say I'm terribly superstitious, although I think some (ahem, Greg) might disagree. I do know that my mind plays games with me during difficult times, and having items or routines or explanations sometimes get me through those difficult times. As an example, last night I realized that today's appointment with Dr. Atallah would be a big one with potentially lots of scary decisions made, based on information that I did not yet have. I knew that all along, but what I realized was that I was not completely panicked about it. I'd been sleeping pretty well and able to function somewhat normally. And the fact that I wasn't freaked out freaked me out! Whether it's guilt or something else, I made myself think of the bad stuff that could happen at today's appointment as a way of maybe warding it off. (Messed up, huh?)

The other thing that I started with my breast cancer diagnosis is the inclusion of good luck charms (for lack of a more encompassing term). It started with my Buffy the Vampire Slayer visualizations, aided by the fact that Greg and I binge watched the entire series (and Angel) while I was going through treatment. And I also visualized Joan of Arc, and wore the Joan of Arc charm that my neighbor Tracy gave me. Later, my friend Jim gave me a book about Joan of Arc's life. I didn't carry the book around with me, but it held a place of honor in the mini shrine that I created with cards from everyone, and other good luck items from friends and family.

This time around, on important appointment days, I wear an assortment of good luck charms, talismans, memory objects, whatever you'd call them. But I have so many that I can't wear them all at once!

Today I wore:

Three bracelets: "Badass" that matches my amigas; STRENGTH HOPE COURAGE from Coach Kristin; keep fucking going from Cara 

My mother's necklace

One of my Cadence shirts, in honor of my biking friends

My Team Phoenix tattoo :)

My PUT 'EM UP tough girl socks

And I put on ginger essential oil from Meredith.



Some of the other awesome socks and shirts that rotate in include:

hell raiser biking girl socks--one pair from Ashli; one from Meredith

Five Card Studs tee, reminding me of happier times, from Kim

A fat tire tee, from what should have been my first fat tire race, from Mitch

An awesome Buffy tee, from Sarah

At any rate, all my good luck charms seem to have worked, as I had a good visit today.

First of all, every single appointment was not only on time, but early! Greg brought me but had a noon online meeting, so I got to the Cancer Center over an hour before my lab appointment. I was called back fifty minutes early! Then we went up to the Grace Clinic and I got in to that appointment half an hour early. Finally, I got to the Day Hospital for my chemo infusion and was brought back twenty minutes early. I feel bad for complaining in the past (but so happy to not have to sit in a germy waiting room as long). I also was so lucky to run into my Team Phoenix sister Luz at the lab. I wish I'd thought to take a picture of us.

My hemoglobin is up to 10.7
My platelets are up to 87K (Class of '87 rules!)
Unfortunately my white blood cells (and neutrophils) continue to drop, making me neutropenic again, and they will only continue to drop. That means that I need to stop going out in public unless absolutely necessary, and need to curtail visits. The state health department reported this week that we have not yet hit the peak of flu season, and it takes a month after peak to really taper off, so that's kind of scary. I'll be as good and safe as I can, and I believe I can still continue to walk and bike outside--and I intend to do my socializing that way!

The bone marrow biopsy results were back, and while not perfect, they are also very good. Here's a page that describes what tests are done on the marrow.

One way they examine the bone marrow is by flow cytometric analysis. Flow shows only 0.1% residual disease (MRD), keeping me in remission, although any MRD is not good and increases risk of recurrence.

The cytogenetics were also examined, and all previous abnormalities (the 14 mutations in December and 8 mutations in January) were gone! However, there is a more sensitive test done when the initial cytogenetics are clear (Fluorescence in Situ Hybridization, or FISH). Unfortunately my FISH test still found that 1.5% of my cells had an extra copy of chromosome 8 (trisomy 8). A quick search of research articles tells me that Trisomy 8 is one of the most common genetic mutations in AML, and that it puts me in the intermediate risk group for recurrence, and it is recommended that those with Trisomy 8 AML have an allogeneic bone marrow transplant. Luckily, I already have that (somewhat) lined up! :) (A quick note that many AML research papers that compare outcomes don't take into consideration a transplant--they refer to remaining in remission with "only" chemo or other meds.)

Dr. Atallah said that we are "heading in the right direction." While he said he couldn't guarantee it, he expected the transplant would happen in 6-8 weeks(!!!). That means this should be my last round of Vidaza infusions, I should only need one more bone marrow biopsy before the transplant, and because my hemoglobin and platelets look good, that I should only need labs twice a week (those have been added to the google spreadsheet). I will keep taking the Venclexta every day. I also dropped my pre-med Zofran amount by half (I feel better now--hoping it's enough to hold off any nausea and cut back on the icky side effects), and I made an appointment to see the dentist for a check-up before the transplant. Shit is getting real!

And I credit all of my good luck charms because they hold the love, concern, and positive thoughts from you all.