Because I was a math geek in school, one of these emails had to have a fraction in it. By the time I leave the hospital on Sunday (hopefully morning, I don’t want to mess with my Lollapalooza schedule), I will have spent 21 of the previous 38 nights in the hospital. Most of those nights have been relatively uneventful, but this time around the chemo gods decided to mess with me.
I can handle a lot. I can handle not eating all day. I can handle massive doses of pain killers (sortof). I have figured out allergic reactions and broken bones and punctured lungs in foreign countries and hangovers the size of Mount Everest (a cheesesteak and self-loathing rehash of the evening with chaperones helps) and the death of all grandparents. What I cannot handle by any stretch of the imagination is less than eight hours of sleep. Everyone in my family knows and just has come to accept this about me, because, honestly, they’ve had no choice. Slightly interrupted, like getting my vitals quickly checked, or husband rolling over in bed, is fine. Keeping me up for two hours is entirely unacceptable. I turn into a cranky, demanding, high-maintenance monster, and I am totally okay with it and manage by biting my tongue and going to bed early the next night UNLESS someone else I can blame caused the lack of sleep. Nurses have caused my lack of sleep for the last two nights, and as much as I know they are my friends, they are totally reaping the benefits of it today.
So here’s the problem. My chemo regimen involves:
1. a few hours of hydration;
2. IV drip of one drug for a few hours;
3. two hours of hydration;
4. half an hour of pre-meds (like Zofran for nausea);
5. a 96-hour continuous drip that comes in 4 bags each for 24 hours, each of which gets the half an hour of Zofran before going in, making the switch last about 45 mins to an hour;
6. a final IV drip of the last chemo that takes an hour;
7. prednisone given twice a day…unclear if it’s supposed to be given at the same time as the bag switch, and then 12 hours later or just at 8am and 8pm or whatever.
When I checked in at 1pm on Tuesday, chemo was supposed to start at 3pm, making the 96-hour process start around 8pm. Unfortunately for me and my nurses today (one real nurse, Mary, and one student nurse, Katherine — I’ve been thinking of them as Mary-Katherine, referring to them as the Catholic school twins, and can’t tell them apart), my PICC line was giving me some pain, so the doctor ordered an ultrasound (two possibilities for pain: clotting or infection) to check for clots, but wasn’t worried about it enough to delay chemo. BUT DIDN’T TELL MY NURSE TO START CHEMO. So at 5pm on Tuesday I walk up to her and informed her that we need to start chemo NOW or we’re delaying until Wednesday because I’m not putting up with 3am bag changes. Unfortunately for me, things just don’t work that way in the hospital, so we started the regimen at 8pm, which placed the bag changes at 3am on the dot. Which is why I was ridiculously tired yesterday and why I’m ridiculously cranky today and Mary-Katherine has been informed that if I’m unnecessarily disturbed heads will roll, and I’ve got the hospital CEO on my speed dial to prove it.
Good news, I have neither an infection nor a clot in my arm (ultrasound happened on Weds morning). Bad news is that I now hate everyone who walks into my room.
By the by, some of you have expressed some concern about how I described my weight-gaining project. To reassure, I’m not, in fact, eating mac and cheese for every meal (even though I made it with rice pasta and goat cheddar and milk). I have Garden of Life protein powder that I mix with almond milk, and I had about three peaches for breakfast with some scrambled eggs. Calm thyselves. Although I do plan on trying BOTH recipes that involve puréed Krispy Kreme donuts sent to me by two people that don’t know each other once I’m actually cancer-free. I’m not too worried about sugar (cancer LOVES sugar, but my theory is everything in moderation and you’ll be great, or end up with a lymphoma tumor in your chest), but those recipes just looked like dancing with fate. And I thank you for them.
Although one of my friends brought me McD fries and chicken nuggets yesterday, which was spectacular. I drew the line at a Big Mac, though, because I try to avoid red meat that has been dipped in bleach, or ammonia, or both. Which is sad because that special sauce is tasty.
5:30pm update: I drafted this email around noon. Since then, I’ve had a nap, and my oncologist dropped by. First thing out of her mouth? “I spoke to pharmacy and we’re moving your bag change to 7am. I don’t know what the hell those nurses were thinking.” Have I mentioned how much I love my oncologist? Then I took a shower. One of the best things about being bald is the ability to feel the shower really on my head and scrubbing behind my ears. My ears haven’t been scrubbed like I just scrubbed them since my grandmother used to give me baths when I was nine. Spectacular.
Much love,
Lydia
PS: Things I contemplated at 3am while hoping the process would take less than two hours (that did not go as hoped):
1. Do I have enough time to meditate before the horrible harpy comes back into my room with bags of drugs? (Nope.)
2. My sister never got the tinny flavor in her mouth from any of her three rounds of chemo. She was on ABVD, ICE, and most recently, BEACOPP. I’m on R-EPOCH and have only had the R, E, P, O, and H and the tinny flavor has returned. So unless my sister is a champ at managing side effects (which she is, see her website), then my tinny flavor must be caused by the R, the H, or the fact that I’m getting the EOH all at once, because she has had all of those chemo drugs at one point or another (except the R and the H) and never felt like she was licking aluminum foil. Ugh, jealous.
3. Why in GOD’S name is my iPad taking two days to download five episodes of Suits?
4. I really hope that Michael is asleep and not just playing possum. (He was playing possum. Another hope dashed.)
5. How long can I convince my bladder that I don’t need to pee? (20 minutes.)
6. Where do I want to go that involves a passport when I can travel via plane again? (Italy, Ireland, and New Zealand, even though I’ve been to all of those places, because, honestly, this world would be a sadder place without the Italians, the Irish, and the Kiwis; East Asia; the Bahamas to see my spectacular friend Lara and her family; Manchu Picchu, but see below about lungs and cardio; Mt. Kilimanjaro, ditto; maybe I should write this down before I lose my train of thought…)
7. What do I want to do when I have cardio and lung power again? (Go for a run; fuck that, go for a fast walk; go for a hike in Durango; learn to snowboard or try those “new” parabolic skis; go camping, only if we get a new tent, though; have McNulty teach me how to shoot an AK, just for shits and giggles.)
8. What do I want to do when I get a port instead of a PICC line (google the difference)? (Take a bath, go for a swim, go to yoga, take a shower with my arm not wrapped in plastic, generally not feel like such a “cancer patient” as people stare at my bald head and wrapped arm and know exactly what I’m going through if they’ve had any personal experience with cancer…which I’ve discovered a lot of people have.)
9. I really want to start my blog. But I’m too Type-A to just start it and improve it along the way. Maybe if I were less Type-A I wouldn’t have cancer right now. Ugh. When is the nurse coming back?
