Au Bout de Souffle
It’s been an interesting week since I got home from the hospital. Breathing is not better than it was last week, and I still need to rest to catch my breath after changing my shirt, walking down the hall, or visiting the loo in the middle of the night. My medical team keeps exhorting me to give the old-reliable Navelbine a chance to work, that it’ll be at least three cycles (yesterday) and probably four (next Monday) before we start to see results. I’m hanging in there, and trying to keep my inner cynic quiet while twiddling my thumbs.
I’ll have plenty of time to do that, what with my new pain meds keeping me from driving and everything. SuperMom has come to town indefinitely to fill in my gaps…er, gaping holes. I hope that a switch to a Fentanyl patch next week will allow me to drive again, but for now I’m a Roxy-Zombie who’s great at conversation and sleeping, but not much else. Well, except finding pretty patterns in the rug or wallpaper or shadows and clouds.
Another delightful development is that our spring break is taking on a whole new shape. I’d say “I don’t want to talk about it,” but with my acceptance of my path on this journey comes a little peace at changing plans about which I can do nothing. Yesterday, Dr. A told me that she doesn’t feel comfortable with me taking an airline trip anywhere, which, following my last flying fiasco, I completely understand. And I certainly can’t be spending ten days (10!) on St. John at the end of April. No good medical facilities nearby; no liquid oxygen delivery, no emergency aid. Cancel the trip to my happy place — no one wants to go without me unless and until they have no choice.
So instead of flying, we’re looking for a driving vacation, preferably something within a couple of hours’ drive of Boston, justincase. I think we have a couple of good ideas; now we need to start convincing the kids that they’ll have just as much fun in New England in April as they would have had in the Caribbean, a vacation to which we have all been very much looking forward since, oh, the day we left in 2010. They’re good sports, but how much of the rah-rah Kool-Aid will they drink?
The good news is that we’re getting to the stage of my illness when people start coming round to see me all the time. Just for coffee and a chat, but I’m having lots of visitors, people I don’t see nearly as often as I’d like. It’s lovely! They come sit on my couch in the sun, bring me Starbucks, visit, tell stories and make me laugh, then go home just in time for me to take my nap.
Wow, I sound like an old person. Scrabble, anyone? (With all these meds on board, I’m an easy target.)
Hosed
Quickly, before it falls off the current-events list: The Carcinista’s Oscars Red Carpet Review! Who hit, and who missed? Which actor had the worst tux? And, most importantly, how many collagen injections has Nicole Kidman gotten since the Golden Globes? Stay tuned, faithful readers, for the latest…hot…umm…news…
Hmm.
It appears I have missed a few days on the calendar. Where on earth have I been?
Riiiiight, sick. Started last Monday with my crack-of-dawn PleurX catheter insertion, followed by a surprise night admitted to the hospital. They wanted to drain me for 24 hours, then get an X-ray, so I spent the WORST night of recent memory not sleeping for more than 45 minutes at a stretch (roommate fell asleep with TV on; nurse turned it off; finally fell asleep, then shift-change vitals check; took 2 nurses to untangle my hoses so I could go pee, etc. etc.). I swear, those women get paid by the depth of the shade of the dark circles under your eyes the day you leave.
Tuesday I was raring to go home, and after some false starts (and one out-of-order X-ray machine), they sprung me, and Mr. W dragged my carcass home for a nap. Pain was under control with Dilaudid, left lung had been drained; I was tired, but SuperMom was in da house and taking care of business for me. I slept well, ate little, thought I was recuperating.
Went to see my oncologist (Dr. A) for a treatment revision on Thursday morning. Cancel the clinical trial, start chemo again. This time: Navelbine (“nav-” as in “navigate”, “-bine” as in “coffee bean.” It’s Fransh). All members of the team were “go” with the chemo; we’d start on Tuesday, no waiting. Great – I love a plan. Home to rest for the weekend.
I felt so decent (i.e., not in pain) on Saturday morning that I decided it was time to quit the dilaudid. I had started to get twitchy at the end of my four-hour dosing schedule, and I hate that. I thought Tylenol would get me through, with Tylenol PM for the evenings. Ooooh, was I wrong.
I lay awake twitching most of Saturday and Sunday nights, moving from the bed to the couch and back in search of a comfortable position. (I’m a side sleeper, and once my right side gets bored, I usually rotate. Only I had this big hose hanging out, and two incisions. Ow.) I tried propping my left side on pillows; lying flat on my back; lying on my stomach with pillows propping me up. Child’s pose. Happy baby pose. Nothing was comfortable. Not to mention that I felt like I wanted to crawl out of my skin.
Fortunately, when my home nurse arrived on Monday morning, she chided me that it was “way too soon” to stop taking pain meds. Thank heaven. Took a big, fat Vicodin and a three-hour nap. But you can’t take narcotics and drive, so…
…When I arrived at The Cancer Factory for my new chemo on Tuesday morning, I was pain-med free and eager to talk about it. My fantastic NP was so empathetic — the first thing she did was order me a quick-acting (and quick-ending) dose of morphine so I could relax. Then she set up an appointment for next week with the pain-management and palliative-care specialist doctor to work out a plan, which will probably include a Fentanyl patch for 72 hours of continuous relief.
Stop freaking out — “palliative” doesn’t necessarily mean that I’m on the way out; it’s a specialty that focuses on the quality of life of patients with chronic illnesses, and on easing their pain issues as manageably as possible. I can work with this doctor for YEARS.
So, short story long: lung tapped and putting out about 25cc (3 Tbsp.) every other day. Tube uncomfortable, but tolerable with Oxycodone and Tylenol. New chemo is okay (side effects: constipation [woo hoo] and fatigue [oh, yes]); I’ll get it once a week provided my blood counts stay healthy. Dragging the oxygen hose around my house is like a bad Keystone Kops sketch, what with the 50 feet getting wrapped around the dog, the kids, my legs, stuck in doorways and over dresser drawer knobs. And despite advice, I have yet to Beadazzle my Casino Canister (thanks, Pateeta!). Possibly I will wrap it with feather boas. To match each outfit.
And we watch and wait. Hope you’re more patient than I am.
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
The Carcinista 