...and I'm feeeeeeeling good!

I preface this post by saying that I know anything (and everything) can change in a heartbeat. I'm not out of the woods, and there are a lot of really scary things ahead, but right now I'm feeling good.

After a beautiful winter snow storm all day yesterday, the sun is out, the sky is blue, and I drove myself to Froedtert for my lab and nurse visit.

My numbers are still good:
WBC--3.1 (down a little; normal 3.9-11.2)
ANC--2.14 (normal 1.9-7.8)
HGB--9.8 (normal 11.3-15.1)
PLT--55K (down a little; normal 165-366K)

And because my neutrophils are in the normal range (and have been so since January 29), I asked if I could start doing some "normal" things.

The first thing I asked about was eating fresh produce. The nurse said that, yes, with my neutrophils where they are, I certainly could. She then elaborated and said that research has not proven that there is a need to follow the older "neutropenic diet," and that, in fact, newer research shows that elements of it can be detrimental. (Here's a study about it.) She said that there are still doctors who recommend it because that's they way it's always been done. And I instantly thought of my favorite PT, Dr. Leslie Waltke, and the first time I heard her mind-blowing lecture that, even if you've had breast cancer, surgery, lymph node removal, etc., that there is no reason to avoid blood pressures or sterile needle pokes on that arm. That you don't need to wear a sleeve to fly in an airplane, and that most of the lymphedema restrictions are in place only because someone somewhere thought they made sense and now it's the way it's always been done. Anyway, guess who's having a giant salad for dinner tonight?

I also asked about venturing out in public, as I'm growing tired of spending all my time in my house. Again, because my neutrophils are normal, I was given (limited) ability to do social things outside of the house--still wearing a mask, of course! Specifically I asked about attending the knitting group that meets days at Corner Bakery. I received a resounding, "yes--and you can enjoy a cup of coffee while you knit." I also asked about eating out, and she said to avoid fast food, and things like raw fish and cheese with mold on it, but if I knew of a small restaurant and went at a not-busy time... I think I'll probably err on the side of caution there, though, as it is flu season and while I can be a bit more adventurous, I don't want to be foolish!

I'm looking forward to the days getting (noticeably) longer and more biking outdoors. I'm knitting a lot, listening to some great podcasts (if you haven't listened to Dolly Parton's America, it was fantastic!), watching some good TV shows (enjoying Sex Education on Netflix, although I think I liked Season 1 better than Season 2, so far), and cooking a ton.

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I wanted to address all the wonderful comments I received on my Facebook post about days 8-14--specifically this photo:

I guess I had not really used the word "remission" before--and until it was in my chart, I didn't really believe it. When I posted about my first post-biopsy appointment with Dr. Atallah, he said that there was no evidence of leukemia, which is the definition of remission. I do still have cytogenetic changes, which is part of the reason why I did another round of Vidaza and also added the Venclexta. But the cytogenetic changes do not mean that my bone marrow is not hypocellular or that I cannot get a bone marrow transplant. (In fact, I can and will, as soon as a donor is found, and if I remain in remission at my next biopsy, which will likely be next week.) What the cytogenetic changes mean is that, whether I continued now with monthly chemo (maintenance) or if I receive a bone marrow transplant, I am more likely to relapse. Relapse occurs in about 50% of patients who initially achieve remission, and it can happen anytime from months to years after remission. Given that my AML was caused by my breast cancer treatment, that was kind of my one try at staying in remission without a transplant. The only possible cure is through a bone marrow transplant. If the cytogenetic changes disappear before the transplant, the risk of relapse post-transplant drops greatly. But if they do not, transplant can still delay relapse. Either way, I need to get to that transplant.

And that's why I'm sharing that the second bone marrow drive will happen this week. Please continue to share the information with anyone aged 18-44 that you know. If they aren't local and/or can't make it to Oak Creek this Thursday, they can request a kit to be mailed to them by visiting join.bethematch.org/LorisLegion or by texting LorisLegion to 61474.

You have all been AMAZING! I learned today that so far 86 donors have made it through the initial screening and signed up under my code or through the first bone marrow drive. That doesn't include those of you who stepped up before anything was organized in my name. It brings me to tears every time I think about it. So many potential lives saved!

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This song just keeps going through my head. It's getting me through until my transplant. I encourage you to take three minutes and listen:

Feeling Good by Nina Simone