Someone Called the Hotline
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?
It Just Keeps Getting Better
Thanks to everyone for your warm wishes for my procedure last Friday. I’m not sure whether you weren’t concentrating hard enough, or whether the fact that my new boots hadn’t arrived yet threw off my mojo, but the stent insertion was a no-go. Apparently, the cancer that is constricting the ureter has a death-grip on it, and no matter how my cute Dr. Kenneth Branagh tried, he couldn’t force the tube in. So when I woke up, not only was there no pain (and thus no need for interesting pharmaceuticals), but no success.
What’s next, you may ask. Well, just because I’m so very fond of pee, poop, private parts, the handling and the discussion thereof, my next step is a nephrostomy. Yes, the universe seems to think that the brief stint with the ileostomy wasn’t enough torture, so my next appendage will be a urostomy bag. Probably temporary, but who really knows. Probably done tomorrow, but I’m waiting for phone calls.
And maybe, if I’m really lucky, my next trip through a TSA checkpoint I’ll get to get a pat-down instead of a little extra radiation.
Today, though, I’m starting my new trial. I’ll be here at The Cancer Factory from 8 to 6, taking pills, peeing in cups, giving blood at regular intervals. Would you all mind focusing just a little more closely on your good wishes today? I could use a break.
The cookies, however? Are AWESOME. XOXOXOXO
Private Parts
As I was mentally preparing myself this morning for today’s stent insertion (which included a fair amount of leg-shaving and heel-moisturizing), I was struck by the irony of my repeated exposure to complete strangers.
I’ve always been a fairly (all right, extremely) physically shy person. Not that I won’t hang out in a bathing suit (tanning is more important than modesty), but for the most part, changing in locker rooms, getting nekkid for physicals, etc. have never been something I’m comfortable with. I’m definitely not the lady who leaps dripping out of the shower after her workout, toweling her hair and launching into conversation with her friend at the makeup counter, for instance.
So I can’t help but chuckle/wince/shudder at the amount of time I’ve spent completely bare in front of complete strangers over the last few years. It started with childbirth, certainly, but at least the L/D nurses closed the door of the bathroom while they helped me change after the process was over. I remember being prepped for my first surgery in 2006, feet in stirrups, gown at waist, while OR nurses, medical residents (some of them really cute guys) and assorted personnel kept coming into the room and introducing themselves to me. I finally said, “Is it just me, or is it a little drafty in here?” They got the point and grabbed a blanket.
But once you’ve been cut open from stem to sternum, there’s just no privacy any more. After my last big surgery in 2007, I remember the (delightful, sensitive, thoughtfuln’t) surgical residents popping into my room at 5:30 AM for rounds, cracking on the overhead klieg lights, ripping off my blankets and having a look-see at my incision before I had even opened my eyes. (I did NOT bake cookies for the surgical residents.)
And today, a cute man I’ve met with for approximately twenty minutes will be inserting a stent…well, you know…while I’m unconscious and naked from the waist down. Just another one of those things I have to let go…
These Boots Were Made for Kickin’ Cancer’s Ass
I bought ‘em.
Thanks, everyone, for your support. I’m going in for my stent tomorrow afternoon (probably won’t wear the boots since I’ll be mostly in a super-sexy hospital johnny, freezing my butt off), but you bet they’re going to go with me to The Cancer Factory as soon as they arrive in the mail. Hopefully by Monday, but I’m not holding my breath. GO, UPS!!
Creeping In
Wow, this cancer is serious business. By my calculations I’ve been off of chemo for just three weeks, but I can feel things growing in there. A knot of lymph nodes in my neck that had gotten smaller during chemo is getting bigger again, and is now, literally, a pain in my neck. The pelvic tumors, which were actually responding to the chemo at first, are growing again and pushing on my left sciatic nerve. And, most disconcertingly, I’m finally understanding that classic ovarian-cancer symptom of “a feeling of fullness or inability to eat” — most of the time, it feels like my dinner consisted of six or eight large bricks. (Don’t worry; I’m compensating for the lost calories with french vanilla ice cream.)
So, is this the part where I start complaining? Maybe. I’m trying to keep my mouth shut around the house, because I know how upset it makes certain-members-of-my-family-who-shall-remain-nameless. And we’re all trying to keep our eyes on the prize: I’ll start this trial next week and the drug will do a bang-up job of knocking back the cancer’s growth and all my symptoms will fade.
I must admit, though, the cynic in me is starting to get up a good head of steam. The hope is still there, the belief in miracles, the willingness to place my life (again) in the hands of one of the most capable medical teams in the country. But combined with the respiratory stuff that’s been going on since the end of September, these new symptoms are stark reminders of just how close to the edge I’m riding these days.
In August, I asked my oncologist (one of the foremost experts in the field) to be honest with me. I said, “I know doctors don’t like to make prognoses, and I promise I won’t hold you to anything you say, but you have a lot of expertise with this disease, and I need to know. If I stopped treatment today, how long would I have?” (A part of me couldn’t believe I was asking this; I have spent so much of this illness focused on the fact that I will get better that even broaching the question of not was a shock.) She told me that I’d have about six good months, and around a year altogether. At the time, I thought, “Well, thank heaven I’m not stopping treatment. I need WAY more than a year.”
Only none of the damn treatments have worked. Do I have six good months left? The cynic figures I’d better really enjoy Christmas this month. Like, REALLY enjoy it. And then the hope side chimes in, “People have been sicker than you are now and recovered. Miracles happen every day.” Yeah, but they don’t, too. People who were diagnosed after I was are already dead. Maybe I’ve already used my miracles — IP chemo, my crazy HIPEC surgery, my previously stellar fitness level. That 35% five-year statistic wasn’t threatening to me a bit until about three weeks ago. Now I’m wondering about May. Whether I should have had a 39th birthday party. Whether it’s worth buying a new pair of flat-heeled black boots.
Though I’ve been sick for four and a half years, aside from acute times like post-surgically or during chemo, I’ve been able to live a relatively normal life. But now, I can’t ignore it anymore. Now, there’s always something.
photo credit here.
Requested Reading List
I’m afraid I’m going to fail to fulfill a promise I made a few years ago. When my second son was born, one day the cat came to me and said (I’m paraphrasing), “Why do you keep bringing these men into the house? When will we ever have the chance to be alone together in the sunshine with all these boys around, and their hammering, running, zooming, and eating?” I told her, “Elly, one day you and I will have a girl room, with a chintz-covered chaise longue, late-afternoon sunshine, a mohair-y throw blanket, a pot of tea, and a stack of great books. We’ll spend weekends in there, dozing and reading. I promise.”
Well, the Girl Room hasn’t materialized yet, and unless they’re planning a big Christmas surprise for me, it probably won’t happen. But I can still lie around with a stack of books like it’s my job, and for this Cinderelly is truly grateful.
What I’m having trouble with is: what should I read? When I hit the bookstore, I look for interesting covers or for books I’ve heard mentioned by other people. Sometimes I hit; sometimes I miss. Whenever I go to the library, I wander around aimlessly, looking at covers and pulling out books I haven’t read by authors I already know. But I’m sure there are people (other than librarians and critics) who know exactly what is good, or a classic must-read, or not-just-chick-lit-but-good-chick-lit. Are they you?
If you had a year and wanted to make sure you read all the important stuff, including classics and contemporary literature (although maybe not so much poetry; sorry, Amy), what would you read? Tell me, tell me — there’s still time to put together an Amazon list…
Up In the Air
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.
Hopefully Elisabetta will be out of town.
Photo credit here.
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.
