Tag Archives: chemotherapy

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.

I Do Not Want What I Haven’t Got. Well, Not All That Much.

At almost exactly the same time that my ‘phils finally started coming up to measurable levels, my hair finally started to fall out. I knew this would happen, and frankly it was a bit of a relief to think that I could finally get through that and start growing the hair that, Lord willing, I will get to keep.

Old hair, this is the last day of our acquaintance.

It’s still not a nice feeling to run your fingers through your hair and put lots of it into the wastebasket, though. After the first day of this, my hair just looked flatter, but by day 3 there were only wisps left and I started to look like Gollum. Clearly, it was time to take action.

So I went to the “Image Recovery Center” here and got my head shaved, thus moving from Middle Earth to the early ’90s. That’s right–I went Sinead. Came home and listened to a couple of her albums on my headphones, as my caretaker sister inexplicably doesn’t like O’Connor’s music.

Since then I have been feeling a little more headachey, but I guess that will pass once I figure out the right mix of warm-but-not-too-tight scarf or hat.

Oh, and it’s only the head hair that falls out, not the leg hair. I’m very grateful that Cytoxan killed off the specific kind of donated marrow cells that would otherwise have launched a full-out attack on my liver — but the drug is kind of a petty bastard, side effect-wise.

There Will be Beeping. Oh Brother, Will There be Beeping.

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The orientation nurse assured me and my caregiver sister that most everyone gets at least one fever during the you-got-no-immune-system part of the transplant process. My sister and I immediately developed a plan to, if I got no fevers, be smug.

So I felt some chagrin when on *Day Zero*, right smack out of the gate, the very evening of the day I got transfused with the donor cells, I got a fever.

Into the hospital I went, which meant that I was surrounded by caring and skilled medical professionals offering me lifesaving treatment and round-the-clock monitoring; that I had the ability to phone up and order surprisingly decent food delivered from the hospital kitchen to my room; and that I was chained by thin plastic tubes to an IV machine that WOULD NOT STOP BEEPING.

More precisely, it would go along for some time merely making whiffling noises as it metered out my saline solution or medicine, and then it would inevitably break into a beep loud enough to wake the dead, or at least the hospitalized. There were several annoying characteristics of this:
a) It was the same beep regardless of what was wrong–possible obstruction in my line, maybe getting to the end of my bag of chemotherapy, or whatever else the machine had a problem with.
b) It was clear that the loudness of the beep was not in proportion to the urgency of the problem, as it never summoned nurses to run in with a look of concern. Instead, it would just beep away as I found my nurse call button and pressed it so that the main nurse desk could hear my beeping, and at some point a nurse would walk in and press some buttons to make the beeping stop. To be fair, this meant the machine was already doing a great job of keeping air out of my line, so kudos to the machine makers there.
c) Every time I needed to go to the bathroom–and, as my time in the hospital included Days 3 and 4, when you get serious chemotherapy, I needed to go a lot–I had to not only tie on my shoes (my self-imposed strategy for not tripping and falling on my head), but also unplug the IV machine and chivvy it along with me, making sure not to stretch the IV cord that connected it to the catheter in my chest. It was not a fun contest to see if I could make it through all these steps in time. They literally never detach you from the IV machine while you are inpatient.

Long about Wednesday my fever broke and they released me back into the little apartment my sister and I are staying in next to the hospital, so I’m only attached to a machine for a few hours a day in the outpatient unit, when I’m actually receiving medicine. This provides me with a better vantage point from which to contemplate the amazing medical care I am getting.

Thanks, caring and skilled medical professionals!

Chemo multitasking–not so much

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Well, my caregiver sister and I are settled in here in Baltimore, I got my catheter in Friday, and I started chemo yesterday. Today is day T-5, meaning that my transplant will take place on April 12.

I had been planning, once settled in, to immediately start catching up on email and blogging, but it emerges that, while the catheter placement was a walk in the park (twilight anesthesia is like the best yoga class ever), multitasking during chemo is not as easy as I’d thought. In order to keep my eating and drinking going ok (as there is some definite queasiness going on already), I’ve found it best to just read novels (or watch Downton Abbey) rather than engage in the slight amount of mental concentration involved in email or blogging right now.

cherish each moment, even the ones that suck.

thoughts about surviving cancer. also, other things.

Tag Archives: chemotherapy

I am a hummingbird. A very languid hummingbird.

I Do Not Want What I Haven’t Got. Well, Not All That Much.

There Will be Beeping. Oh Brother, Will There be Beeping.

Chemo multitasking–not so much