Category Archives: Blog

White counts have tanked to critical levels. Platelet counts are plummeting. (Needed a platelet transfusion last night.) GI tract is in a general state of rebellion and/or malaise. Food is an unpleasant chore that must be accomplished without an iota of  joy or relish.

We’re heading full speed into the nadir of side effects hell. Going to be a few more days of getting worse before I’ll start getting better. Fortunately, my health care team is not stingy with the drugs.

More drugs, please.

On the side effects count:

• My white counts are beginning to tank, taking my blood pressure with it, so they hooked me back up to my IV stand and are giving me extra fluids. Sigh. It was nice not having to haul around an IV tree wherever I went–not that I go very far anyway, but still.
• GI tract is beginning to express some unhappiness. This is a warning of what’s to come, and I’m not looking forward to it.
• Blurred vision still in evidence. Having a really difficult time finding the sweet spot for reading.
• Fatigue hitting hard–although that could be the anti-nausea meds they’re feeding me round the clock.
• Oh, and hiccups. Yes, can’t forget the @#$!& hiccups.

During my daily ambulation around the floor for exercise, I spied a little lending library and a stained class windowed alcove. Charming:

I’ve had my nummy nummy stem cells re-infused (as well as a transfusion of two units of blood). That was very anticlimactic. Except for when the nurses came in singing happy birthday to me. They have a tradition of doing that for Stem Cell Day 0. There are balloons.

However, now the side effects of the BEAM chemo are beginning to kick in, mostly nausea, heartburn, fevers, dry mouth, absence of taste (what else is new?), and various aches and pains.

The side effects will get much worse. I’m only on Day +1 (they do a countdown to Stem Cell Day, so Day 0 is when I get my stem cells and Day +1 is the day after I get then), and I’ll start my hard crash tomorrow dipping down until Day +7. Then I’ll, hopefully, start plateauing and recovering.

On an up note, I no longer need to be tethered to an IV tree, so I have as much freedom as my small hospital room allows. I’m not allowed to walk the halls for exercise anymore because of my fevers. They did a barrage of cultures and tests to make sure I don’t have anything that could endanger my floor-mates. We’re still waiting to hear back from those, and I am VERILY restless and bored.

I’m sleeping better now, thanks mostly to all the drugs their pumping into me. IV Zofran, Ativan, and Benadryl seem to be doing a good job of knocking me out and keeping me that way.

A drugged sleep is better than no sleep, I sez.

Been getting some pretty hefty IV drugs–Ativan, Zofran, Benadryl–to keep the nausea at bay. The meds have also been doing a good job of keeping me knocked out in a semblance of sleep, which leaves me sorta refreshed, although with a pervasive sense of brain fog. I hear that I needed to get a blood transfusion a night ago–two bags of red–but I totally slept through it. I have vague memories of people coming in, fiddling with my lumens, and then falling back to sleep before they finished.

Another rather distressing side effect has popped up, though. My vision’s gone somewhat blurry. It’s not as bad as it was in April, when I couldn’t read my laptop or tablet, but it’s quite an annoyance. My healthcare team thinks it’s from the chemo and the steroids. It may or may not go away. I might have to get a new corrective vision prescription. Sigh.

I’m slated to get my stem cell infusion in about an hour. They’ll bring little plastic plasma-esque baggies taken out of cold storage, containing my life, to rescue me from the brutal nature of the chemo. I have this incredibly morbid mental image of them coming to hang these bags and then having an “oops” moment, with the bags slipping out of someone’s hands and spilling my life on the hospital floor. That won’t happen, of course, but I still have anxiety.

The stem cell infusion promises to be pretty anticlimactic, all in all. Just another bag of goop dripping into me. I also get another three days of kepivance (yuck), and I’ll start sliding into hell week as the side effects from last week’s chemo start hitting around tomorrow.

One day at a time.

Day 3 in the hospital, on day 2 of 4 of twice daily infusion of Etoposide (over two hours) and Cytarabine (over one hour)–for a total of six hours of infusions a day for four days, spaced about 12 hours apart. So far, the infusions of chemo meds haven’t been hitting me all that hard, but they’re not expected to until next week. Had a little bit of unsettled stomach yesterday and a reaction to the first day’s alcohol-infused carmustine, but that’s been it.

Interestingly, my sense of taste is still coming back in teeny dribs and drabs, despite the kepivance. Still can’t taste my food, but really, really close to almost being able to taste my food.

But what’s really getting me right now is the sleep, or rather the lack thereof. They’ve got me scheduled for these twice daily three-hour infusions at 10AM and 10PM (with pre-meds about an hour before), so the infusions don’t finish until after 1AM.

Between being woken up in the early AM for pre-meds, vital checks, labs, etc., and awakened in the PM by by squawking IV pumps, med bag changes, and more vitals checks, I can’t get more than a few hours, if I’m very, very lucky, of shut-eye at night. And since I’m also a morning person–an extreme morning person, honestly–it’s really hard for me to go back to sleep once I’m awakened in the AM, no matter how bone-weary-exhausted-sleep-deprived I happen to be (stupid human suit).

I got all of four-and-a-half hours of sleep last night. Kept trying to doze off this morning after my 6AM vitals check wake-up, but every hour someone else would come in to give me something, check on something, or ask me something. I finally gave up, out of sorts and groggy, and demanded some coffee. If they won’t let me sleep, then by god, I may as well be caffeinated about it.

I…I think I might be getting kinda surly. I yelled at the poor lady who wanted to clean my room to “PLEASE COME BACK LATER!” Then I felt so guilty, I couldn’t go back to sleep.

And I’ve only been here for three days.

In the process of checking into Emory hospital after a long wait–as per usual–for them to clear out a bed, find me a room, generally get all the paperwork squared away.

Tonight’s med schedule is a two-hour infusion of carmustine. Of note, carmustine needs to be administered via an 8% alcohol solution. Yep, I’m getting booze. By IV.

Some of the side effects include a flushed, red face and sense of warmth. Ya think?? I haven’t had alcohol in over a year, and even when I was having the occasional cocktail or glass of wine, I had no alcohol tolerance.

Gonna be a party in my hospital room tonight.