Our great friend and fellow blogger and radio host, Mel Majoros, AKA “The Cancer Warrior“, asked me to give her some thoughts about cancer awareness during September, Ovarian Cancer Awareness Month. I thought about it and decided to do something a little different: two stories about transformation, turning points and clarity in life – both before and after losing Sarah to ovarian cancer.
For all you Carcinista fans, I think you will enjoy this. See it here.
Let us know what you think!
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…
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.
Alright, stop harassing me, I’m back.
A couple of items before I jump in:
- I don’t know who the 100+ people per day are who have been re-reading my last post over and over for the past month, but thanks. Your dedication is astounding.
- I hate winter.
The past month has been really insane. From the fabulous boots to the non-existent nephrostomy bag to the fact that my trial drug seems to be working. Yes, you heard me, it appears to be working.
I felt like death-warmed-over the week before Christmas, and Mr. W and I were having the tough discussions about what music to play at my memorial service, how pretty his next wife was allowed to be, etc. etc. I had aches and pains, took Dilaudid to get to sleep at night, had trouble with a flight of stairs. I was pretty out of it.
Then all of a sudden, with that fabulous news about my hugely resilient kidneys (and the onset of the action of my new Celexa prescription, coincidentally), things sorta turned around. Okay, I did spend 24 hours in bed with a stomach bug, but I wasn’t huffing the inhaler all the time; I wasn’t taking narcotics to sleep, and my symptoms (full all the time, pain in the cancerous nodes in my neck, groin) seemed to fade away.
Which brings us to the news, delivered last Monday, that my CA-125, previously in the 200s, had dropped to 79. Seventy-nine. Holy crow, is there a light at the end of this tunnel? And even if there isn’t, if the CT scan scheduled for the end of the month shows not stability but merely slowed progression, so what?
That’s right, I’m feeling grateful. It’s taken a long time to get to this point, but if all I get from this clinical trial is an extra two months without symptoms, I’ll take it. It has been an opportunity to feel like myself again — well, the latest incarnation of myself, with two-hour naps and no muscle tone — and to read out loud to my kids without getting winded; to not only have the energy to make dinner but to go to the grocery store and have the presence of mind to think of a recipe to make, collect all the ingredients, then move down the aisle and see another idea pop up. (And to be grateful as well for the freezer full of lovingly prepared casseroles to thaw and bake on the nights when I’m beat.)
And to feel gratitude that my hair is too long and desperately in need of highlights, but sprouting from my very own head.
Without this two months of feeling better, I might have missed this:
Tomorrow: Part II.
Well, well, well. SOMEONE has been doing their homework, faithful supporters. When I sent out my plea for more focused energy and good wishes, prayers, karma, etc. etc., I must admit I wasn’t expecting such immediate and obvious results!
I arrived at the Brigham today fully expecting to leave with a hole in my back and a bag of pee hanging off my hip, and I wouldn’t be lying to admit that the thing I was most disappointed about is my then-inability to wear skinny jeans tucked into my fabulous new cancer-kicking boots. But I bucked up, since losing a kidney altogether wasn’t really in my game plan either, and plopped in the waiting room to finish a two-week-old People until my buzzer went off.
I was escorted down to the prep area, and asked to wait before changing (into another dynamite johnny/slipper socks ensemble) for someone from Radiology to come talk to me. This wasn’t a surprise; I was expecting just a conversation about conscious sedation or something, so I laid back and closed my eyes for a few.
The cute Radiology doctor came and shook my hand, and told me she’d been on the phone that morning with my urologist, Dr. Kenneth Branagh. It seems that sometime between my 11/19 CT scan, which showed the hydronephrosis (swollen left kidney) that required stenting, and last Wednesday (12/15)’s CT scan, the situation resolved itself. No, for real. The blockage is still in the ureter, which meant that the stent couldn’t go up, but it must not be a complete blockage. There is no swelling of the kidney at all, and my kidney function is totally normal, creatinine at 1.1.
I was so gobsmacked I thought I was being Punk’d. (And, frankly, a visit from Ashton Kutcher really would have been the icing on the cake.) I said, “So, basically, Merry Christmas to me?” And she said, “That’s what your urologist said!” Then after a nurse de-accessed my port, I wandered upstairs to tell my friend/ride that we were free to go, and came home for a Class A, stress-free nap. Bag-free, too. Everyone here at Casa Carcinista is doing a little happy dance tonight.
So what I need to know is, to whom do I send the thank-you note?
With apologies to Mr. Clooney (and if he’d like to drop by, I’d be happy to deliver them in person), this week has been the definition of “up in the air”. I’ve been to The Cancer Factory three times looking for a plan, and each visit has given a teensy glimpse of what my upcoming schedule could be, but also another question or two that need answering before any decisions can be made.
So if there’s any truth to that “chronic-stress-causes-cancer” thing, I’m fooked.
Today’s downtown journey revealed another medical truth: no matter how much iron you consume the night before, you cannot pass a failing hemoglobin test. (Although if you’re looking for an excuse to eat grilled grass-fed buffalo rib-eye and sautéed spinach with pancetta, garlic and shallots, which I HIGHLY recommend, I won’t blow your cover.)
Wednesday I met with the urologist, who aside from being a nice guy, said he could fit me into his schedule for my left stent any time, all I had to do was figure out when the Phase I gang wanted me to have it done and call his nurse to book it. But I couldn’t get an answer from the Phase I gang until my hemoglobin was re-tested; 8.9 was not the 9.0 the “sponsor” (Pfizer) needs it to be for me to start the trial.
Yesterday, despite the fact that I hadn’t called to schedule it, I got messages during my nap from: the urologist’s office, the anesthesiologist’s office, and the admissions department at New England Baptist Hospital (where the procedure would be done) all telling me that I was to arrive this morning at 10:30 for my stent insertion. So I had to scramble and check with Phase I – no, they wanted me to get a transfusion (for my pitiful hemoglobin) before I had the stent placed, and I couldn’t start the trial within two weeks of a transfusion, so “no-go” with the stent procedure for today.
TODAY, I had a re-check of the hemoglobin, in hopes that my yoga, steak and spinach had helped it rebound from chemo, but no luck. Still 8.9. SCRAMBLE again to find Mr. W (and get him to answer his phone) to pick up the boys from school this afternoon, so I can get a two-hour transfusion (starting at 3:00 PM, yaaaaaawn), so I can start the trial two weeks from Monday. Which, in case no one has noticed, is the 21st of December. I’m sure I’ll have TONS of time that week to be down here three days in a row.
What I still don’t know is when I’ll be having my stent placed, but now that I’ll have a transfusion on board, I hope they can fit me in next week. But not too early, so I don’t miss Mr. W’s company Christmas Party, the only one (pathetic!) we’re scheduled for this month. And not Wednesday, ’cause Mr. W’s in an off-site meeting all day. Guess it’ll be Thursday or Friday… maybe?
It’s still up in the air.
Clooney? On second thought, I’ll meet you in Como.
Photo credit here.