Today Has Been Brought to you by the Letter ‘I’
‘I’ for “insane”. “Incredible.” “Inconceivable.” “Ican’tbelievethisishappening.”
Last Monday was completely off-the-charts crazy. Let me tell you all about it.
No, wait, it’s way too much. Lemme give you the highlights:
- Awoke at 5:15AM to make 7:00 phlebotomy appointment (say that ten times fast) at The Cancer Factory.
- Finally allowed myself to be wheeled around TCF in a chair, since I had trouble catching my breath after walking up three steps and across a lobby on Saturday night, even with 3 L/min of O2
- Didn’t think to attach nose hose to air tank on wheelchair; stayed connected (for 3+-hour tour) to portable liquid canister that I’d been breathing on since 6:15am. Usually I hook onto a wall nozzle for most of my visit. [NOTE: this is foreshadowing.]
- Navelbine not living up to expectations; i.e., breathing continues to worsen. Please go to radiology for immediate CT scan.
- “Immediate” is a relative term; arrive promptly, but sit-and-wait for two hours. Scan, then return to NP’s office for further instructions.
- A mere 45 minutes later(!), NP finds me to say that scan shows further, millimeters-larger growth of tumors in all areas. No point in continuing Navelbine infusions as they are clearly not working. Please make appointment for Thursday to come back and talk with oncologist about other potential treatments, their side effects and efficacy rates.
- Wheel downstairs, return to parking garage, check out. Turn onto Brookline Avenue to realize my port is still accessed.
- Around block, park at old building drive-up entrance, persuade door guard that Mom can live-park there for five minutes while I dash down to Radiology to have my port de-accessed (remove needle from chest port, left there for cancelled infusion).
- Find available phlebotomist, convince her I don’t need access anymore today, have needle removed. Start to climb (slowly, slowly) spiral staircase from basement to street level. Get winded, stop to rest multiple times. Reach lobby, resting elbows on knees to catch breath in chair; approached by stranger who asks if I’m okay. Tell him I’m just headed to car, and stagger out front door just to realize that my portable tank, on which I’ve been breathing for over 4 hours, is completely empty.
- Collapse in front seat as panic sets in; huffingly tell SuperMom to return to valet in other building and find wheelchair with O2 tank so I can breathe while we go back to clinic to have portable tank refilled for drive home. Total panic; feel tingly all over, nauseated.
- Ticket-gate attendant finishing long chat-up with driver in front of us (as I continue feeling more nauseated and frantic) finally gives us our turn; SuperMom, holding it together nicely while explaining what we need, gets ticket, whips around to valet and tells him to get a chair with a tank NOW (see “Shirley MacLaine, Oscar-winning speech”), while finding me a plastic bag into which I yak my blueberry yogurt (fuchsia pink; poor dude with rescue chair must have thought I was exploding or something) twice. Finally chair dude hooks hose to tank and I’m back on three liters. Mom hands off the keys and we go back up to 10th floor. Emergency passes, and I’m pleased to notice that I’ve not only managed to keep fuchsia barf off floor and out of hair but also off pristine white tee-shirt. ::Rockstar.::
- On 10th floor, Receptionist pages Respiratory Therapy to come help; Super-tech David gets me hooked up with a higher-caliber portable liquid tank and a complimentary refill that will get me home safely.
- FINALLY leave hospital around 1:30 and get my post-hospital-visit chocolate milkshake by 2:10. Nap by 2:30, feeling like I’ve been run over, backed-up-on, then re-run-over by a sizeable piece of construction equipment. .
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.)
This Is the Droid You’re Looking For
Oh, it’s been an interesting week. I know I’ve been quiet, but I really can’t bring myself to clog the ether with the neck-snapping back-and-forth that leads from one mile marker to the next. Now that the dust is settling, I’ll net it out for you.
Two lung taps; one three weeks ago, one yesterday. Not much fluid, but it made a difference in my breathing. (It sure didn’t improve my blood pressure — the first appointment, I waited over two hours; yesterday — three-and-a-half.) But as soon as I left the hospital last night I started coughing and couldn’t stop; when I called my medical team this morning, they prescribed Cipro against a possible infection, and home O2.
This is an image I’ve been avoiding since I first heard my lungs had metastases: the feeble little cancer patient, stooped and dragging her green canister around with her, unable to do anything. I knew it was out there, somewhen, but didn’t think we’d get there quite so soon.
But vanity must fall to the ability to breathe (and talk — I could barely talk!!!) And so, this afternoon, R2-D2 moved in.
37 liters of fun. And no, it's not a kegerator.
That little beige guy on the right is the portable unit, thank heaven. So I can shop without dropping. Or dragging my little-old-lady tank cart behind me.
I’m now breathing 2 liters per minute of pure oxygen. I suppose I should be grateful — don’t people pay big money for this service in nightclubs all over Scandinavia? I’ll let you know if my wrinkles disappear.
Also, on Monday I’ll be getting a pleurex catheter, a permanent installation between my left ribs with a little catheter that coils up and gets taped to my side. That way, I can drain my OWN lung when it needs it, instead of schlepping downtown and waiting all afternoon. Downside: no swimming. Ugh.
I also might be changing treatments, going back to one of the conventional chemos I haven’t tried yet: navelbiene (I know, it sounds ridiculous) or hexalen. I’m disappointed that my trial isn’t doing a better job; the first six weeks were so promising! I must have MENSA-smart tumor cells, so clever at adaptation that they can outsmart any new therapy within two months. I wish there were an application to take advantage of all this primal smartitude: discovering the key to nuclear fusion, balancing the federal budget, finding Jimmy Hoffa…
…curing cancer…
A Hundred Gs, Part II
We ate so many of these it's scary. And delicious.
On Thursday night before Christmas, while Mr. Wonderful and I were just settling down to another exciting read of The Deathly Hallows with the cherubs, the doorbell rang. Seven o’clock? On a weeknight? (Good grief, I hope it’s not carolers – usually four or five glöggs into their celebration, they force you to stand, freezing, in the doorway and smile inanely while they try to remember the words to “Good King Wenceslas”. Erm, sorry — back to the story.)
Mr. W went to open the door, and up the stairs trooped old friends, neighbors, new friends, their families and kids, totaling about ten merrymakers. After hugs and introductions all around, the Organizer, I’ll call her, and her daughter passed me a big folder full of notes and drawings, plus a beautiful, handmade card with a big wad of cash. “What’s this?” I asked.
“We know you already bought your boots, but a bunch of your readers and supporters got together and took up a collection for you, so you have some mad money to have fun with. Buy clothes, books from your reading list, take your boys out for dinner, whatever you want. Just enjoy it,” Ms. O said.
It was a big pile of money, and I was really floored. See, I’m not used to being the center of attention, and I felt very humbled by everyone’s generosity. More hugs all around, and wishes for Happy Holidays, and they were off. I felt very warm and fuzzy as we went to find out what the Dark Lord was up to that night.
It wasn’t until the next morning, during a lull in the packing for our weekend trip to Norman-Rockwell-gorgeous Vermont, that I had time to sit down and really examine the folder full of notes. Not only was there the beautiful card and generous gift from those who gave cash, but there were at least ten more notes, checks, and gift cards from other blog-readers and assorted supporters from all over my life: neighbors, friends-of-friends, college friends I haven’t seen in twenty years, Mr. W’s co-worker friends. I was rendered completely speechless. (And you can imagine how difficult that is.)
My initial reaction was, “I don’t deserve this. I’m going to donate it to Ovations.” Mr. W talked me out of it: he said, “These are people who gave to YOU to help you feel better while you’re feeling horrible. They want you to spend it for yourself, to make you happy. Use it, enjoy it. You deserve it.” I felt guilty, I felt greedy, but I could feel the love in all the notes, heartfelt kids’ drawings, and expressions of uplifting support, so I stopped.
And switched it to gratitude. I know that people who love us, people who read my blog, wish there were something they could do to help me get through this disease. So when the opportunity arises to bring casseroles, Christmas cookies, or donations to the Carcinista Couture Collection, they jump. They help. They get gifts from giving, too. That’s what the whole Christmas-present thing is all about.
Gratitude. I’m full.
With heartfelt thanks to Ms. O and her co-conspirators, The Instigator (BKJ), TLP, TEA, SHB, SM, SMH, KFS, JQP, JBB, H&GP, JPW, JWF, HM, K&RS, DS, and anyone else, in my chemo-brained stupor, I might have missed. You have no idea.
Photo credit here.
A Hundred Gs, Part I
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:
The A-man and his post-bar-fight face.
Tomorrow: Part II.
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
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.
Let The Wild Goose Chase Begin
I'm comin' for ya, dude.
Hey! How was your Thanksgiving?
Really? That sounds nice… oh, mine? It was lovely, thanks. Yeah, everyone’s still speaking to each other… yep, kids got along and no one threw mashed potatoes. We missed the traffic by coming back Saturday night. So great to see everyone, but nice to be home.
What?
Oh, the scan results, right…
Um.
Yeah, those didn’t come out like we hoped. Like, really not like we hoped. Lungs: measurably worse. Pelvic tumors: growing. Hydronephrosis (back-up in my kidneys) worse. New lesions in sacrum and pelvic bones.
You see why I’ve been avoiding you.
On the “Action Items” side of the page, however, we have now two solid Phase I trial options (thank you, cancer research funding), one of which I’ll be starting next Wednesday. Pending my visit with the PPMD (urologist) tomorrow and scheduling my stents. Yes, lucky me, I’ll be getting ureter stents again so I can pee. (Jeez, now I’m not only like an old woman but an old man, too?) The study (Option #1) is an oral drug, taken (yea!!!) with food daily, so no fasting, no infusions (looking hard for the silver lining)…
As opposed to the study drug from last summer, this one attacks signaling proteins on multiple pathways at the same time, so there’s a higher chance of success. The study worked well for an ovarian patient (she was on it for ten months) at The Cancer Factory already, although eventually she progressed and has now moved on to another study (my Option #2). So there’s a reasonable hope that this will give me some more time.
Another bonus is that Option #2 has openings forecast for a few months yet, so if Option #1 doesn’t show results, I can slip right on to Option #2 after about three months or so.
What? Well, we don’t know what else is out there yet. That’s the problem with studies. There are new ones coming down the pike all the time, but we can’t really predict what or when.
So, yeah. That’s where we are today. No, I’m handling it okay. (Just don’t talk about the kids.) I haven’t started buying plane tickets yet, but I’ve stopped shopping for high-end, life-long couture, since I’m not sure I’ll get my money’s worth out of it. And no, I will NOT bequeath it to you new-with-tags, so quit asking.
God bless black humor.
Let’s Be Honest
I’ve been avoiding writing this post for three or four weeks now because I know no one wants to read it. (No, I’m not dying. My CA-125 seems to be responding to the new chemo, although I have yet to feel any practical benefits.)
But things at the ol’ Casa Carcinista are, well, different since I got back from Colorado.
Sure, there’s the coughing and wheezing, the resting after a flight of stairs. The utter lack of an exercise routine. But I’m talking about more meta-changes.
For the past four-and-a-half years, we’ve been sailing along through open seas, scanning the horizon with our telescopes, peering from the crow’s nest at the edge of the world, looking for signs of what’s to come. For that time, there’s been no sign of anything, just flat horizon. Some days we’ve had calm seas, and picnics on the deck; other days have been stormy and I’ve stayed below decks. We’ve just kept sailing, waiting and watching.
Now, there’s land on the horizon. Distant, hazy, indistinct, but it’s there. And that’s where we’re sailing. Don’t know how long it’s going to take us to get there, nor whether we’ll change course and sail somewhere else first, but there’s no doubt of my destination.
I think what triggered this all was the realization, in Estes Park, that I was not well. For the first time, really, since forever, I was sick and not getting better. There were things that I just couldn’t do because of cancer, and the likelihood that I ever would be able to do them was small and shrinking. Even during my IP chemo routine in 2006 (the energy nadir of my life), I was able to drag myself to my best friend’s wedding as MOH and even threw down a little swing with my sweetie. Sure, I paid for it for days, but it was a hoot, and I got better. I’m still waiting to feel as well as I did before FD. (Nothing personal, FD – I still love you.)
Strangely, I’ve found these recent changes in my life almost comforting. Where the null-sum of cancer is undoubtedly the waiting, the uncertainty that comes while a surgery date approaches, or while you’re twiddling your thumbs until the scan results come back, any kind of certainty in this free-for-all can be the equivalent of a neatly solved equation, exhaling a long-held breath. As our therapist reminded us this morning, we’ve entered the last healthy step of the stages of grief: acceptance. Not that my demise is imminent, but that it’s out there, on the horizon, whether we’re sailing there directly or around the Horn first. Can you imagine setting out on a journey that will last the rest of your life and not knowing where you’re going or when you’ll get there? (And forget about knowing what to pack.) You see my point.
Even more strangely, a field of calm seems to have settled over Casa Carcinista. With this acceptance has come relinquishing of closely-held argument positions, reductions in conflicts, a willingness to compromise and see the other guy’s point of view. The little brown house is full to bursting with love. Mr. W and I are more likely than we used to be to drop what we’re doing and have a hug, or sit at the table after the boys are excused and just talk quietly about our day. We listen more closely when our kids stop us to talk. We are always available for snuggles. We are focusing on the stuff that really matters – building and maintaining healthy relationships, following family traditions, spending time together – and, for the most part, filtering out the dross.
So no, since you asked, I’m not scared. There are still plenty of things I’m pissed off about, and for damned sure I’m not anywhere near finished fighting this battle. But the cloud of acceptance and love that has descended over Casa Carcinista has made us better people, and I wouldn’t trade that for a house at the beach.
And while we are speaking of beaches... here's my favorite.
Photo courtesy Mr. Wonderful.
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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 