Unknown unknowns

I can't remember- in my last post, did I somehow imply that I was in a tough stretch of my treatment? Did I make it seem like before that I thought I had it figured out, but the second to last quarter of treatment had thrown that whole belief for a loop, with a little cough and sniffle? If so, forgive me. I had no idea what the hell I was talking about.

On the Friday (March 28) after my most recent (9th) treatment, I went to work knowing it would be a rough night. I was fatigued by the time I got to work, which made sense, considering that the steroid was wearing off- I was going from A-Rod to Craig Counsell, and fast. But I made it through, and by the time I got home I was so tired that I skipped the bath that has been my end-of-night ritual ever since I realized it helped with the problems I mentioned two posts ago. I hit the sack, face-down.

I woke up about an hour later, and vomited. Luckily, I made it to the toilet in time. Caitlyn's first comment was a pithy "That's new."

It was new. I had been a little nauseous throughout treatment, but there are pills for that, and they had worked on me. This, though... An hour after cleaning up and going back to bed, a wave of nausea woke me up again, and I spent a split-second too long denying that I was going to need to get to the bathroom. The first time I had vomited- this time, I puked. I puked in earnest, at the doorway of the bathroom, and it was not pretty, visually. Olfactorily, worse. That was how the weekend started.

On Saturday, there was no real stomach sickness, but there was some fever. Caitlyn was committed to going to a neighbor's shower (baby, that is) at 11am, and I promised her that I would call the on-call doctor to see whether I needed to go to the ER. See, a fever in a chemotherapy patient, apparently, is a huge deal; it can be an indicator of an infection, which can kill you dead. So while normally you might think to just sweat it out while drinking a lot of fluids and watching season 6 of Mad Men, the chemo patient has to take it more seriously.

That said, I did not want to get up and go to the ER. My fever was just under 100 when Caitlyn left, right before I called the doc. When he called me back about twenty minutes later, he asked me to take my temperature again- this time, it was 100.3. When I reported that number to him, he informed me that generally, they ask patients with a fever of 100.4 or above to come in to the ER. Meanwhile, I am looking down at the thermometer: it was a Walgreen's-brand oral thermometer that weighs about as much as a Q-Tip, probably cost about four cents to produce, and I'm sure we tossed into our basket one day at the checkout along instead of a blister-pack of Eclipse gum or an issue of Country Weekly. Did I really want to trust this my health to this instrument's accuracy?

I didn't want to, but I did. The slight fever got slighter, and I was fine, though the weekend and much of Tuesday were lost. It's hard to convey the lack of energy that is concomitant with the days about a week after a treatment. I usually lie in bed for about an hour after waking up to psyche myself up to brush my teeth and make the bed. Sometimes these chores seem overwhelming. Sometimes Caitlyn will ask me to help her with the dishes, and it makes me angry, because that minor request feels unreasonably major to me- how can't you see that I can't do that right now? It's not her fault. I usually get up and do it and then go back to bed or the couch with an unexpected sense of accomplishment.

Did I mention that my face gets really tan with just a few minutes of sun, though it is not a "good" tan. It reminds me of the color of a 7-11 hot dog. A few weeks ago we had a great break in a long stretch of cold weather; it was about 75 degrees here, and sunny. I celebrated the weather by taking a towel out back and lying in the warm sun with Lea. It felt great- the warmth, the vitamin D- but my hue was not a healthy or enviable one at the end. Since then, I have been doing yardwork in shorts, long sleeves, and a floppy hat. Our neighborhood kids are good kids, but I wouldn't blame them if they mocked me- I probably would have.

My hands and feet have borne the brunt of a good deal of chemo symptoms: they swell, they tingle, and they throb. However, on Friday I noticed that my right hand- the whole arm, really- was looking a little more hot-doggy than the left. That's weird, I thought. I am out of shape right now, but it seemed more likely to me that the previous day's game of fetch with Lea would cause a little muscle soreness- but not swelling of the whole limb. I spoke to Caitlyn at noon and casually tossed in that my arm was swollen. We agreed that I should email the nurse practitioner- she always gets right back to me, whereas messages to my doc always seem to be returned by someone else.

The nurse asked me a few questions, and I answered them back. I went to work and asked Caitlyn to look online for an urgent care clinic that I could possibly visit the next day. That was it, until Caitlyn showed up at my work a few hours later, intent on taking me to the ER. Doc's orders, she said, as the hot dog appearance of my arm could mean infection or blood clot. So off we went at 8 pm to spend Friday night at the ER. They told me it could be a couple of hours before I could get the ultrasound I needed- it didn't take that long, but then I needed a CT scan, and that was when the waiting really began. Caitlyn and I spooned on the tiny bed, and I imagine that when I was out of the room undergoing the tests, she stretched out and slept and luxuriated on that padded plank like it was a king-sized Hastens.  After enough fitful sleep to give her a some kind of energy, Caitlyn went out to get me FourthMeal, but Taco Bell was closed (4am, fyi), so she returned with Jack-in-the-Box egg sandwiches, hash browns (a term I use very loosely when referring to any fast-food breakfast "potatoes"), and a Sprite so big you could skim a rock on it. But by the time I had my CT scan and the results, it was 5am. The ER is like Costco on a Sunday with one cashier open.  Caitlyn was set free around 6 to go home, then pick her dad up from the airport. I ended up getting home at 1pm, more than 14 hours after we'd arrived.

Long story short: blood clot. A big one, in my shoulder/arm, thanks to the port. I don't feel different, I don't feel worse, but now I have to spend three months on a blood thinner. The one I am on now has to be injected, twice a day. Luckily, I have been strategically adding subcutaneous fat for several months- but only just now have we learned the mission of Project Butter.

These things pile up. See, I knew I would feel shitty. I knew I would (most likely) lose my hair. Those were the known knowns. And I knew there were some x-factors: neuropathy, fatigue and depression were the known unknowns- would I have to deal with these, too? But now, at this late point in my treatment, the unknown unknowns are popping up- stuff I didn't even wring my hands over because I had no fucking clue that these were things that could happen. I mean, a week ago the neuropathy in my feet, my continuing GI challenges, the fatigue, remembering to take my Voriconazole twice a day; these were my problems. Familiar. Predictable. But now I have a shopping bag full of dosed syringes and a gut purple with bruises, and it makes me long for the good old days of last week, before I knew that arm swelling, blood clots, and injectable blood thinners were even in the cards- or in the deck at all.

But, as annoying cable news hosts would put it, this is the new normal. Being bald is also normal now, and I have lopped a ton of drying time (maybe 1 min./day, subsequently then just wasted again, not just because of head-hair) off of my post-shower routine. Real quick- here is the order in which I miss my hair:
1- Eyebrows- eyebrows, it seems, are what keep us from looking like reptiles. I am looking more and more like Rick Scott every day, though I think he looks like that with brows. Caitlyn always made fun of the several blonde (she says grey) eyebrow hairs I had, but she has a new appreciation for them, since they are hanging the toughest.
2- Face- If I don't shave for a few days, I look like a seventh grader that hasn't shaved for a few days.
3- Head- I have embraced this style before, but it was always my choice. It looks nice freshly shaved, but sad and depressing when it's not. I always put off shaving my head, which is stupid since it only takes 2 minutes. Gotta be honest- it will be nice to have it back.
4- Buttocks- these are disturbingly, distractingly smooth, but it's not nearly as glamorous as it sounds. I remember an episode of Cheers when Carla, wagering on Sam's (allegedly waning) seductive abilities, said, "I bet that Sam still has some hair on his butt" This meant yeah, that's the manly thing to have, and he still has it, and he can still get laid. As a kid, I knew what she meant, but I had no idea why they would use that as an indicator of machismo or virility, or use it positively at all. Now, I get it.
5- Chest- I am just not myself without it, though I did delight in wearing a suit with unbuttoned shirt and no undershirt. That's not something I usually do.
6- Eyelashes- I have seven of these.
7- Legs- The limbs, for some reason, have hung onto a decent amount of hair, but I think my jeans are making my legs patchy. Luckily, it's linen season.

PH