Tag Archives: leukemia

Why I haven’t blogged in a long time

So, the reason I haven’t blogged in a long time is that, in early December, I found out that my inpatient chemo had failed and that current medical science offers no chance of curing me–sometime in the upcoming weeks or months I’ll die of leukemia.

Well, ok, there is a super long shot chance of remission–I’ve joined a clinical trial, which has put a few people into remission for some period of time. But the odds of that are very, very low–single digit, in my guesstimate based on the nurse’s guesstimate, although my dad and boyfriend persist in being more optimistic. My main reason for participating in the study is that I just really hate leukemia, and what to do what I can against it in general. I can’t deal with the emotional whiplash of getting my hopes up about what the study could do for me–I’m sure if it puts me in full remission, I’ll cope with it just fine without extended preparation.

Anyway, facing very likely impending death, I decided to shift my focus to communicating with my friends individually, telling them how much I love them, and saying goodbye. It’s hard because I do have a lot of fatigue and a lot of friends if you count every era of my life, but I’ll do what I can and just count on the fact that, for those I miss, my friends already know I love them.

I’ve also been focusing on trying to think about Heaven, which is a bit hard because “what we will be has not yet been revealed,” but my sisters found some Bible verses about it for me for Christmas.

So, not much blogging likely to happen here for a while, except I do need to put up that design for a no-sew blouse you can take on and off while attached to an IV pole in the hospital. The world needs to know about that.

Peace and blessings!

 

I am a hummingbird. A very languid hummingbird.

Well, here I am on day 16 of my 4-5 week inpatient chemo experience at Johns Hopkins, hoping to achieve temporary leukemia remission so I might be eligible for a second “mini” bone marrow transplant (from a different donor) whose bone marrow might be able to take out my leukemia.

I’m pleased to say that my day 12 bone marrow biopsy showed no visible leukemia, which is a good sign–let’s just say there are a *lot* of hoops to jump through on the path forward I want, but so far so good.

In other news, it turns out that, just as my hair is falling out from the chemo (which ended on day 10–now they just keep me several weeks to get me through the side effects of the chemo), my villi (those little finger-like projections inside your gut which absorb nutrition) have also taken it on the chin. I’ve been put on a liquid diet for a while, perhaps until day 20 (Wednesday). So I’m thinking of myself as a hummingbird, insofar as I mainly drink fruit juice. But not the kind of hummingbird that actively darts around all the time. More the kind that slumps in chairs during the day and makes herself take a walk round the ward a few times each day to avoid getting deconditioned.

My lack of  blogging recently has been partly just because it takes a *long* time to eat and I like to read while doing it to take my mind off the queasy. But also partly because of the good reason that my older sister has been visiting, and when she leaves my younger sib and her husband are showing up. Thanks, family!

Sometime in the next few days I hope to blog about the wrap blouse I developed that involves no sewing and can be taken on and off while your PICC line is attached to the IV stand–needless to say, they leave the line attached 24/7. Maybe it’s the IV stand union or something.

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