All in all I am doing really well. Truly.
Those old horror stories about chemo and nausea? They have pretty much solved that one by developing better meds to control / prevent nausea. For myself, for 48 - 72 hours after I get chemo I take a medication called Ondansetron HCL (also known as Zofran) every 12 hours starting about 12 hours after I presented for chemo and got my pre-meds. (Pre-meds are medications given before chemo to prepare you for the chemo itself).
That means tonight I will take the first dose at about 9 PM. Then I will take it every 12 hours through Tues and Wed and probably, depending on how I feel, on Thursday morning.
I also have another medication that prevents nausea called Prochlorperazine (also known as Compazine) that I can take every 4-6 hours when I need it.
I take the Zofran every 12 hours religiously. I take the Compazine only if (but immediately when) I get even a hint that I may be vulnerable to nausea. This means that I take the Zofran every 12 hours at 9 AM and 9 PM, and for the first day or two after chemo I take the Compazine usually at what I think of as change of shift for the 12 hour pill. By about 7-8 PM its effect is starting to wear off. But I am not supposed to take it again for another hour or 2. So I take compazine instead, and it eliminates any nausea during the period of time when the prior Zofran dose is wearing off or the new Zofran dose is building up its effect. All in all it works very well.
The only problem was one morning when I made the mistake of taking my pills before I put my glasses on. No problem taking the Zofran. But when I intended to take the Compazine, I mistakenly took a pain pill (oxycodone) instead. Dumb mistake, and potentially really dangerous.
In this case it was not so bad. When I vomited I immediately suspected my mistake. It was easy to correct that part by taking the Compazine. But I could not remove the effect of the pain med and had to stay home from work because it was not safe to drive.
I am no longer allowed to take meds unless I have my glasses on. A really dumb and dangerous mistake that I do not intend to repeat.
So put aside those visions of having to stop by the side of the road to vomit outside the car. That is historic, and really no part of my chemo experience. Which is terrific to date.
Some of this maybe because of my meds. I find that the nausea was stronger after the first dose of the first cycle (day 1 Dec 7 when I got flower power Taxol plus alkylating metal salt Carboplatin) than it was after the second dose (day 15 Dec 14 when I got only flower Power Taxol alone) or the third dose (day 21 dEc 20 [today] when I again got Taxol alone).
My primary symptoms is fatigue, which varies from day to day and hour to hour and is a bit unpredictable to me. While I like to go into work and try to do so on Tues - Thurs as long as possible - the irony is that I am actually probably more productive when I work from home because I can adjust my work schedule to accomodate the fatigue. (work a couple of hours, nap for a while, then work a couple of hours again, then nap for a while).
Since I was producing this special report for months before I had surgery and chemo, we know it is a reasonable expectation that updating and distributing it takes about 2 8 hour working days. But I produce it over more than 2 days - basically as soon as I distribute one I make a new draft for the next one and update it a little bit almost every day, including working on the weekend since I distribute it at the beginning of the week. But however many days I work on it, it all counts for 2 work days of production. The third work day is split between various short term tasks - consulting for PDU, performing a peer review for the medical literature, whatever needs to be done. This works pretty well so far and I am able to take 2 days medical leave a week (mondays for chemo and fridays for lab) and work the other 3 days.
As the chemo progresses I understand that the fatigue may get worse. As that happens I may need to switch to 3 days of medical leave a week and only 2 days of work. And I may need to work more from home either because of the fatigue or because my blood counts go low and there is too much risk of infection if I go in and work with the crowd.
I am lucky that my employer and the terms of my employment will accomodate this. Any CDCers who are following this blog, you might think about whether you have tasks that I could do for you as time goes on to make that 3rd day productive, or if the H1N1 flu response declines to a level that makes my special report no longer of value, or reduces the time needed to produce it to less than 2 working days.
I do want to carry my share of the load as much as possible. it is good for me and hopefully also good for the agency.
But so the chemo itself has not to date been a major problem. However, I also get pre-meds - medications given before the chemo to prevent problems with the chemo. Ironically, these drugs, intended to protect me, have been a problem.
Day 1 cycle 1 I was pretty dehydrated when I arrived at the office. I got a large dose of steroids but began to have an allergic like reaction to the Taxol, so I was also given benadryl by vein. That made me pretty loopy and caused me to sleep most of the time. My dear high school friend RN Ginny had accompanied me, and I understand she took the time while I was dozing to discuss our high school days with Elizabeth, the wonderful chemo nurse. All I can say is, other high school RN Friend Elaine will accompany me to chemo on Dec 28 and can use that time to clear her name and improve her reputation... (Actually it probably is true that Ginny and I were hopeless do-gooders and Elaine always got us into trouble (minor trouble)- and into fun ... but since the adult Elaine has a reputation to maintain....) (Actually it occurs to me, maybe it is Ginny and I who should be worried about correcting our reputation as hopelessly dull do-gooders....Elaine frankly is probably not going to be a great deal of assistance with that, but I will work on it. After all, adult Ginny and I also have reputations to maintain).
Since I hardly slept for 2 days after chemo, I deduce that steroids make me hyper.
Apparently Elizabeth instructed me to take Zyrtec daily in advance of my next chemo to prevent allergic reactions. Unfortunately I had no memory of that and so did not.
So when I arrived for Day 8 cycle 2 dose 2, i got premeds of steroids but also, as a precaution, a large dose of IV benadryl - an antihistamine meant to combate allergic reactions. Shortly thereafter I was unable to keep still and had to keep moving my legs. I recall shaking them out a bit and frequently shifting positions. But the nurse tells me I was standing up, shaking them out, and other things that were generally disruptive.
So I got a dose of IV Ativan - a drug related to valium. the last thing I remember is calling Karla the playwrite who drove me to chemo that day to tell her we were a little behind schedule and asking Elizabeth if I could have some additional Ativan since my legs were better but still not quiet. That was about 1 PM on Dec 14.
The next thing I remember is being awakened at 8 o'clock by a phone call from Aunt Rita from Arkansas. I was home in bed in my PJs and underwear. This was puzzling because normally I (and most of the world) do not wear underwear under PJs. One dog was inside but the other was outside. This was puzzling because they usually hang together. My glasses were missing. And I tried to use environmental clues to tell me whether it was 8 AM (in which case I needed to be getting to work and preparing to take my Zofran and compazine). Or if it was 8 PM in which case I only needed to take the meds. Eventually I gave up and had to ask Aunt Rita "What time is it in Arkansas right now? YEs, but is that AM or PM?"
It was 8 PM. Even now, a week later, I am completely amnestic (have absolutely no memories) for the time between 1 PM and 8 PM on Dec 15. And I still have not found my glasses.
But I know a bit about what happened, because other people have filled it in for me. When I called the clinic to ask about my glasses the receptionist started laughing and said "You were not entirely with it when you left last Monday", a clue that whatever was going on was more entertaining than annoying.
Elizabeth the chemo nurse responded tactfully to my inquiries, assuring me that I did have a, uh, bit of a reaction to the meds but was able to leave under my own power with assistance from playwright Karla, but no, she did not find my glassses there. And she reminded me to get Zyrtec and take it religiously in the evening in advance prep for next chemo.
Karla was also tactful. She assured me that I was able to get into the house, the PJs and the bed under my own power. No, it had not been necessary to call her husband or the neighbors to sling me over a shoulder and haul me inside. She also assures me that while I was rather incoherent the entire way home, I was consistently polite and solicitous of her well being. She assures me that I did not drool on my shirt (or anything else) and rarely outright babbled, ... although it was frequently rather difficult to understand what I was saying when I attempted to be politely solicitous. She once stated that she did not understand me and apparently I assured her that was OK, I did not understand myself.
She also has no idea where my glasses are, but noticed they were missing at some point on the ride home. I suspect they are lying somewhere in the grass outside the clinic.
But she did volunteer to drive me again on Jan 4. From this I deduce that either (1) it was not all that bad; (2) it was every bit that bad but funnier than anything else recently encountered; (3) it provided great subject matter for her next play; (4) since her husband is a brilliant physicist who specializes in chaos theory, it was useful insight into the matter with which he occupies his professional days; or (5) Karla is a very very nice person. Well, we already knew that part 5, huh?
The most revealing information came from people who had no ongoing responsibility for me and therefore felt no need to be tactful. When I arrived for chemo today an older woman was there with her daughter. She looked very very down cast, as she had just learned that she could not get chemo that day because her white counts were too low. She seemed very discouraged and seemed to fear that this meant she had done something wrong or would have a poorer outcome. I felt badly and tried to cheer her up by assuring her that every one's counts go down at some point or another, but it did not seem to really help.
Then I asked Elizabeth about last week and my pre-meds. The other patient's face brightened up and she said "Was that you? Are you the one who was lying with your head down here and your feet up there?"
Apparently at some point I decided that the recliner chairs were improperly positioned and took it upon my self to reverse the pull of gravity. Apparently at some point I also decided the window shades needed improvement and took it upon myself to wander over and readjust them. Apparently I was so bad that Elizabeth, the chemo nurse, had had to solicit the assistance of all the other Chemo patients to keep an eye on me and let her know when I needed intervention.
Apparently it is not always an advantage to be a self-starter.
And apparently it was very very entertaining, deduced from the way the other patient's face brightened up and she could not help laughing when she described the previous week to her daughter. At least she left feeling better about how she was handling her own Chemo. Low counts? That could happen to anyone. Rowdy drunk sitting upside down in the recliner chemo chair and requiring the assitance of all the chemo patients combined to remain contained? Hey, she had not stooped that low yet.
How embarassing - apparently I am a cheap but entertaining drunk.
Well, at least I brightened someone else's day. And made her feel more competent about how she was handling her own chemo experience.
Today (dose 3 cycle 1) between the daily pre-treatment with Zyrtec and an additional oral dose of antihistamine we were able to skip the IV benadryl and the chemo when smoothly and without complications. I remained upright in my chair and left the shades alone. In fact I tried to remain as inconspicuous as possible, which possible did not benefit the other patients as they were left with only magazines and TV for entertainment. I was perfectly pleased to remain anonymous and to entertain nobody.
Well, at least it is no mystery how I lost my glasses.
And that settles the question of whether, as time goes on, I will be able to drive myself to and from Chemo. To possibly, from never.