Monthly Archives: November 2013

Well, that was harder than expected

I will tell yhohou no lie–the second couple weeks of my inpatient leukemia treatment were way, way, way harder than I expected. After getting over the nausea of the actual chemotherapy, I thought I’d be sitting pretty here, taking prophylactic meds and enjoying Johns Hopkins’ decent menu and reading novels.

Instead, at some point I started getting fevers and often shaking chills every night, which is not particularly restful. Also, as the fevers kept getting hotter and hotter, I had some throwing up just from anxiety, wondering what infection was going through my body while I had no immune system. At a certain point for a few days I calmed down because the doctor said the fevers could be just my bone marrow gearing up, but then they got high enough to make it clear this was not a compelling explanation. The doctors kept telling me, every time they came for rounds in the morning, that I was on the best prophylactic drugs they had.The worst night I had a fever of 40.1 C–don’t tell me what that is in Fahrenheit, as I don’t want to know.

The next morning, either because 40.1 is how the body says something needs to change, or because that morning I happened to get a new attending physician (they change every 2 weeks), they decided there was a drug they could swap out for something even better, and another drug entirely to give me. That night the fevers started going down, about a degree a day. Last night I didn’t have any fever at all–it was great.

One of the new drugs they have me on, ambisome, turned out to make me pretty queasy–keeping down food was touch and go for a couple days, which can be very tiring in and of itself. You spend an hour nibbling down a peanut butter and jelly sandwich, and then an hour later it all comes up again. (Isn’t peanut butter supposed to digest easily?) However, when I brought this problem up at rounds they added a third anti-nausea medicine. I wouldn’t say I actually get hungry at any point, but at least I can get in the nutrition without it being a grueling, all-day dispiriting enterprise. All the anti-nausea meds make me a tiny bit out of it, but they sure beat the alternative.

Toasted Rice Soup

I cannot guarantee that this soup will work for people in full-throttle chemo, as I have eaten it on Vidaza, which does not make me as queasy as other chemo. However, it’s worth a shot–the flavors are mild except the ginger, which is a good flavor for the queasy.
1 large packet fresh basil

1 jar ginger paste

1 cup brown rice (or white if you want super digestible/don’t want fiber). I recommend jasmine or basmati, which I found at Whole Foods

1.5-2 lbs ripe tomato

half a package of thin tofu skins

5 cups chicken or veggie broth (or water)

Coat bottom of heavy Dutch oven with Pam or olive oil. Spread ginger paste on there, layer on dry brown rice, cook on high for a few minutes until it ginger and maybe rice starts to toast brown. Then add basil, broth, and tomato, and cook until rice is cooked, at least 35 minutes.

If you are lucky enough to be near an H Mart (the giant Asian supermarket), see if you can score some of the tofu skins that are thinner than normal tofu skins, and seem to me a good way to get some of that protein you’re supposed to be packing in. The normal ones come in the refrigerated aisle folded up into packages maybe 6″ x 7″, whereas the thin ones tend to be on an unrefrigerated shelf and be in a larger package (much taller and wider than a sheet of typing paper).

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

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.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.