Monday, June 29, 2009

A new update in which our fearless patient gets to spend 3 days watching cable TV while all doped out on Percocet:
The really short version of this story - I spent 3 days in the Mount Nittany Medical Center, because I had an infection and a really low white blood cell count. I'm out now but I can't be in public for a week. The drawn out version, with more quips, is below.

I'm not sure of the best place to start this story, but I've decided to take the long view and talk about my entire chemo experience. As I reported on chemo day, actual chemo and the next few days were a breeze. The Thursday after chemo (day 2), Don and I went to Pittsburgh for a wedding. I managed the car trip, the rehearsal dinner, and the wedding with little trouble (although daily naps were needed). Saturday, the day fatigue was supposed to set in, we drove back to PA for Aaron and Marissa's lovely wedding. I had a short nap before the ceremony and felt great until around 8 pm. Feeling a little tired and achy, I decided to call it a night.

This was followed by 4 days of feeling mildly fluish. I also had a nice rash, and my mouth hurt. Since nearly every malady under the sun is listed as a side effect of chemo, I didn't think much of it until Wednesday when my temperature (which I have to take 4 times per day) exceeded the critical threshold of 100.5. It was 100.6. Being a good little patient, I called the oncologist on call in Hershey, who, after some hemming and hawing, decided I should go to the ER in State College, just in case. Continuing to be a good patient, I did just that.

It was the opinion of both the doctor in the ER and the doctor in Hershey that I was probably just fine, but we should check my white blood count to make sure my immune system wasn't shot (known as being neutropenic). Turns out, my white blood cell levels were nearly undetectable, and, for all intents and purposes, I had no immune system. As a result, I'd gotten what's known as a neutropenic fever, which is when basically anything in the environment causes an infection. While I was freaking out about the possibility of getting a staph infection from being in a hospital with no immune system (staph infections being one of my biggest medical fears, up there with cancer, anterograde amnesia, and shingles), I paused to self soothe by thinking of the positives in this situation:
1) Having no white blood cells means my tumor should fear me like the fist of an angry god, because the chemo is slaughtering all of my quickly dividing cells.
2) Maybe all of this wonkiness I've been feeling is not a result of chemo itself, but a result of a subsequent infection.

While I was thinking these things, the hospital staff was admitting me and took me to a nice room with a view of some cattle. At this point, it was 5:30 am and I'd spent all night in the ER, so I was hoping to get some sleep. Instead I got a nice migraine. (As some background, I get what are known as classic migraines, which means any pain is preceded by a half hour of warning in which about 50% of my vision gets filled with patches of what looks like TV snow.) So, I stumbled around the hallway until I found someone who could find a nurse. While I was waiting for the nurse, I self-soothed by thinking, "This is the hospital. They get patients with migraines all the time. They can just give me a shot in my port and it will go away." Instead, the nurse came by and told me I was only approved for Tylenol. Once again, I'd met my old nemesis Tylenol. I told the nurse in that Tylenol was not an appropriate pain reliever for a migraine, and she needed to find a doctor to prescribe something different.

Also, during my aura, I met with an infections disease specialist (or, from what I could see, about half of an infectious disease specialist) who told me that the crazy rash was....wait for it...shingles. Yes! I have managed to acquire not one, but two of my most feared medical maladies within 2 months!! Way to go me for facing my fears! He also said I had oral thrush (like a yeast infection for your mouth!), and I needed to be in IV antibiotics until my white cells came back up. Then the nurse came back and told me the doctor had prescribed percocet for the migraine. Now, percocet is not really an appropriate treatment for a migraine either, but I could no longer muster any righteous indignation.

So, Cassie came by, and I spent the rest of the day doped up on percocet, hooked up to an antibiotic IV (through my port, which I've come to really appreciate), watching Millionaire Matchmaker on the cable TV and taking Valtrex (which, thanks to their genital herpes commercials, made me feel slightly skanky). The next day, Friday, my WBC was up only marginally, so the oncologist overseeing my treatment decided to give me a shot of a drug called neupogen, which makes my bone marrow produce more white blood cells and causes really weird, terrible bone pain (that means it's working). While the bone pain sucked, it did entitle me to more narcotics, which really help to pass the time in the hospital. So if you replace Millionaire Matchmaker with Housewives of Atlanta/New Jersey and add a few antifungals in with the Valtrex, you basically have my Friday and Saturday. The neupogen worked like a charm and by Sunday, my white blood cell count had gone from .02 to 12! They let me come home, where I have no cable or addictive prescription drugs.

I'm at home now, armed with prescription antibiotics, antifungals, and antivirals (and magic's magic!). My immune system and everything else is on the mend, but I'm not allowed to go to public places for 5 days, after which point, I'm supposed to get permission from my oncologists at Hershey before returning to work. (at least according to my little form).

So, some frequently asked questions:
1) What does this mean for your clinical trial?
Apparently, clinical trials have mechanisms to handle "adverse events." Essentially, two things can happen. I may either get a lower dose of the chemo drugs in my next infusion/pill, or I may get a neulasta shot (similar to the neupogen shot) the day after my infusion. I'm hoping for the second option since the current dose of chemo is kicking my cancer's butt (I can already feel changes in the tumor size), and neupogen was so successful for me.

2) Have you lost your hair?
Not yet. It is supposed fall out 10 to 14 days after the chemo dose (although it sometimes falls out only after multiple doses). Monday will be day 14, and my hair is currently firmly attached to my head. I've run out of shampoo (I'm currently using the Suave we bought for the dog), and I've spent a lot of money on cute hats. I think the value of the cancer card goes way up once the bald head is involved, and I'm going to be pretty upset if I don't get to enjoy every last perk that cancer has to offer.

3) Is there anything you can do?
Since Don works from home and Cassie left the Philippines to come take care of me, I'm pretty set in terms of actual manpower. However, things like mixed CDs really help on the car rides back and forth from Hershey. And old books and magazines have been fantastic for mitigating the waits at various doctors appointments. So, if you'd like to help, but you're at a loss, these sorts of things have been great. And of course, just hearing from people is really, really nice!

I think that's it for this novel of an update!

1 comment:

  1. I have tons of old books! What do you like? i'd love to mail you a care package. and EFF Tylenol! I hate that they stick it in all my pain pills because it makes me throw up all the time. ugh. face book me and I'll send you some readin'