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…
Am I The Only Cancer Patient In A Hurry?
WARNING: The following blog post contains a fair amount of selfish kvetching.
Last Friday morning, I had a CT scan scheduled for 12:00, which meant I needed to arrive for my delicious contrast (don’t forget to ask for Gastrografin in Crystal Light instead of the thick banana shake!) at 11:00. Now, as frequent readers will surely recognize, this runs into my inviolate naptime of 12:00, which allows me to get up at 2:35, get a parking place in the pickup line, and get my kids when they’re sprung at 3:00.
In the spirit of taking the bull by the horns, I left home at 9:45, which would normally get me to The Cancer Factory by 10:30 – nice and early, in hopes of pushing the whole process forward a little and getting me home for some vestige of my dear, sweet slumber. (It didn’t help that the cat was snoring peacefully under her paw and the furry nap blanket when I left.) Unfortunately, the universe had other plans.
Traffic was a nightmare. Pursuant to our drubbing of snow in the recent weeks, there is nowhere to put it, any of it. Thus people pulling off the interstate were unable to find parking places, meaning surface streets were jammed. As a result, the interstate was jammed, too. FOR EIGHTEEN MILES. So my quick little jaunt in town got me to the radiology department promptly five minutes late for my 11:00 appt. Thus I started my contrast drink at 11:15, and didn’t get my scan until 12:30.
While I sat and sat and sat and sat waiting for my scan, I couldn’t help but notice that not only did everyone else in the waiting room have a friend with them, but they were all placid and peaceful and walking slowly. I, on the other hand, was tapping my foot, looking impatiently down the hall, and checking the time repeatedly (why? So someone would notice and move me up the list? Bitch).
I was starving (and fuming about how I wouldn’t get home until 1:30) by the time I left, but as they’ve recently opened the new treatment building here at TCF, the cafeteria had moved there and it was too far to go for food; I’d have to wait until I got home.
And the people in front of me as I was leaving the building were walking too slowly. And the nice attendant who showed me how to use the new parking pay-station was helpful but clearly not going anywhere. Neither were the parking attendants who made me park FIVE floors underground, even though there were plenty of empty spaces above that. Neither were all the twits who were obviously out for a lunchtime scenic drive as I was trying to get back to the highway.
I know that most cancer patients tend to be older people, often retired, and that they have nothing to do that day but their appointments and possibly some liver ‘n’ onions at the Early Bird Special. I know that cancer patients, whatever their age, are worn-down and tired beyond comprehension. I know it’s uncommon to be a five-year cancer warrior who has to pick up her elementary school kids but sneak home for a nap first. I know that I’ve had a bit of a speed-demon issue (stop laughing) since I first learned how to drive. But seriously, I don’t have time to waste in traffic anymore! I can’t shuffle slowly into the elevator and whistle cheerfully while it hits every. floor. on. the. way. down. My life is SHORT, people, and I think I oughta get a special sticker or a dome light or something, at least a special parking place, to indicate that while I am a cancer patient, I’m also BUSY, and way too cute to be stuck in this hospital any longer.
At least I had a good excuse all lined up for the statie who never pulled me over: CT contrast creates a vigorous urge to be near your home plumbing. NOW.
****************************************************************************
Oh, the scan results? STABLE DISEASE. A little fluid around my left lung, but only 10% tumor growth since 12/15. I’ll see a thoracic surgeon in the next 10 days Thursday to see about tapping the fluid, but it appears that the drug is doing SOMETHING. I’ll take it.
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.
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.
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.
Coping Skills
I left a whole bunch of things at home this morning as I rushed out of the house ten minutes behind schedule, and only realized my mistake(s) as I was merging onto the Mass Pike. I called home to ask Mr. Wonderful to email me the shopping list so I could stop on my way home. Being the Mr. W that he is, and since he was coming downtown anyway for a meeting, he offered to bring the other stuff to me at The Cancer Factory. Timing was tricky, as I was running back and forth between two buildings for appointments that couldn’t seem to start on time, but someone smiled on me, and he pulled in just as I was dashing back across the street for my CT scan.
Short story long, he brought me the things I had forgotten, packed in a little reusable bag from lululemon (a store at which I hope to spend a lot on exercise clothing in the future). Printed all over one side of the bag are inspirational quotes, admonishments to carpe diem, etc. One specific line caught my eye: “Life is full of setbacks. Success is determined by how you handle setbacks.”
Particularly poignant this week. Yesterday I cornered a despondent and stomping #1 Son, grouchy because his brother hadn’t wanted to play outside with the dog with him. From somewhere deep within the storage pool of mothering instinct came the line, “You can’t let your happiness depend on the actions of other people. They all have their own thoughts, their own desires, and they can do as they please. If you can’t be happy unless they do exactly as you wish, you’ll always be disappointed. Be happy with your own actions, and let that be enough.” (I have no idea where I got that from, as I can be quite susceptible to the problem at hand myself, but it sure sounded good. I should probably needlepoint it on a pillow.)
It’s been a tough week to be me. Although both kids have been in school five days, for six hours at a stretch, by Tuesday night I had come down with the week-off-the-mystery-drug-fever again, and felt like a sodden lump of sand. A “quick” four-hour trip down here on Wednesday for two types of blood draws and pee-in-a-cup showed no reason why I should have a fever. Nonetheless, by mid-afternoon I’ve been ready for bed, which did not accommodate yesterday’s pot of chicken-noodle soup (I had to do something with Monday’s leftovers) nor the 6-to-7:30 soccer-clinic-on-the-complete-opposite-side-of-town-in-a-downpour-wait-in-the-van nightmare. By 8PM I was fish food.
And as I slumped despondent on the couch with hot tea and layers of wool, watching The Blind Side with the hubs, I was put in mind of something my own mom used to mention (from her infinite pool of mothering instinct). When asked the eternal question, “What do you hope for your children in their lives?”, she never responded the expected, “I just hope that whatever they do, they’re happy;” she always said, “Life is full of times that won’t be happy. I want my kids to be able to cope.”
Which is, I think, what’s been going on here at Carcinista Central. Whatever the cancerverse throws at us, we find a way through it, and most of the time we are actually happy (although some days I just sob on the steering wheel). We lean on each other when we need support, take time away when we need to be alone, and take risks knowing that the family and friends who love us will be there to pick us up if we crash.
I’ve just met with Dr. A, and my CA-125 and CT scan have deteriorated a fair amount from ten days ago. While that’s never good news, at least the results are definitive: I’m going off the study and starting chemo when I get back from First Descents. I am glad that my week in Colorado will be drug-free, but I know I’ll still be a tired mess, push-ups and pull-ups notwithstanding. It’s a program for cancer survivors, after all, even if I am the oldest and illest one there – I’m sure they’ll understand. I’ll nap if I need to, bow out of activities if I must, but I’m going. If they have to shovel me onto the plane in a wheelbarrow, I’m going. Mom taught me that much.
Besides, six hours all by myself in first class? Each way? I wouldn’t pass that up for anything.
Quick Update
So. Multiple conversations at The Cancer Factory today elucidated the rationale behind the slightly ambiguous bi-directional recommendations of my multi-partite team of oncological specialists.
If the previous sentence took you three or four tries to make sense, you now know how I felt.
My CA-125 finally came back at about 10:30, reading 137, a five-point increase over the previous test two weeks ago. That might sound like a statistically significant increase, but it’s not. Dr. B finally came to see me in the clinic and we hashed back and forth for a few minutes. I told him that the steady increase in my CA-125 since mid-July gave me the impression that the trial wasn’t working, and shouldn’t we oughta switch to chemo? He said that despite the CA-125, which may not be a good indicator for this trial (and certainly hasn’t been a good indicator for me very often), my CT scans showed good stabilization in my disease up to the scan two weeks ago. Even as my CA-125 was rising, my scans showed stability in the disease.
Dr. B did apologize for his earlier discussion with me, and his email to Dr. A, that gave the impression that he wanted me to quit the trial and switch to conventional chemo this week. He wanted me to meet with Dr. A to discuss the next steps in the event that I go off the trial in the future, not to actually plan my switch, which is what she and I talked about last week.
We talked together about getting another data point next week with a CT on Friday to see how my lungs look, as apparently Drs. A and B discussed (after my appointment with Dr. A) that my lungs didn’t look all that definitively worse on the scan after all. Once we get that scan, THEN we will decide what to do. I’ll need a Vitamin B12 and a folate shot a week before I start Carbo and Alimta, so I would do that next Friday and then start chemo after my trip.
Or, the CA-125 and CT will both show relative stability, and we’ll keep on with the trial, because there aren’t that many good PI3K Phase I trials available right now, and to jump off this one at the first sign of trouble would be foolhardy, as I probably wouldn’t be able to get back on it again. And if nausea and fatigue keep being a problem on the trial, I could go to the reduced dosage (330 mg vs. my 450 mg) that’s being used as maximum for the Phase II trial now going on, to see if that reduces my side effects.
Short story long: keep on the trial this week. Next week is my week off the drug. Friday’s chest CT will decide if I continue the study or switch to chemo, which I’d start late in the month.
Clear as mud, right?
Too Many Chiefs
I’m getting tired just thinking about explaining all of this, but I know you all wanna hear it.
Last week… no, wait, back up.
Two weeks ago, when I had my last CT scan (and waited FOUR HOURS for the results), Phase I oncologist (we’ll call him Dr. B) said that I should set up an appointment with my medical oncologist, the one who’s overseeing my case (we’ll call her Dr. A) as soon as possible, since she’d probably want me to stop taking the Magical Mystery Drug (the one that was no longer suppressing my lung metastases) and go back on chemo. So, like a good little girl, I ran home and made the appointment.
This Tuesday, when I met with Dr. A, the first words out of her mouth were, “So… what can I do for you?”
I was a little surprised that she wasn’t already aware of what Dr. B had thought, so I said, “Dr. B said that since the trial isn’t keeping down my lung mets, you’d probably want to pull me off it and put me on chemo.”
“Oh… from the email he sent me I thought he wanted you to keep going with the trial?”
::crickets::
“No, he told me you’d want me to do something more aggressive about my lungs.”
After a little back-and-forth, and telling her how crappy I’d been feeling for the previous ten days, she got on board with the chemo idea and came to the conclusion that since I hadn’t done carboplatin for a year, we could do that in combination with Alimta, and start on Tuesday (because I will NOT reschedule another First Descents trip!). Dr. A told me her scheduling coordinator would call me about appointment times for Tuesday, and shook my hand. I left her office pleased to be ending the nasty pills that have started giving me day-long nausea and still taste like dirty ashtrays, ready to switch tactics and get back to the business of kicking cancer’s ass.
Once I got home (of course), I realized I hadn’t asked whether to keep taking the Magical Mystery Drug for the rest of the week until starting chemo on the seventh. I called first thing (at the crack of 9:00) Wednesday, then airily skipped through my day waiting for a callback, without the pills, loving the taste of a glass of water and my freedom from being close to indoor plumbing.
Wednesday night at 8 I discovered a message on my answering machine from about 4:30 in the afternoon that said, “Please keep taking your study drug indefinitely.” Uh, what? I thought I was starting chemo.
Yesterday as I was waiting at school pickup for the boys, I got a phone call from the Phase I nurse practitioner, I’ll call him Angel, who asked how I was doing. I told him I felt lousy, and explained the mixed messages I was getting from the two different departments, and that no one seemed to know quite what the heck was going on with my plan. I told him, “There are too many chiefs here.”
He said, “Well, this little Indian is going to get to the bottom of things and I’ll call you as soon as I know.” Sweetie, you’re the best.
This morning, I left a message for Angel, just to check in and remind him he was working on something for me, since I could totally see the holiday weekend creeping up and not hearing from anyone until I just showed up on Tuesday at the crack of dawn. By the time I got home from the dog park, I had a message from the Phase I trial coordinator with my schedule for Tuesday’s appointments, which sounded a whole lot like my regular trial schedule. Grrrr… I waited for a call back from Angel.
At 12:45 he called and told me that we’ll check my CA-125 on Tuesday morning, and if it’s dramatically higher again (from 74 to 90-something at the last check) they’ll pull me off the trial and start chemo that morning. But if the CA-125 is stable, I’ll stay on the study drug. At least I knew what was going on, and that everyone was now on the same page.
Does anyone else think that with all the money being generated by and donated to The Cancer Factory on an annual basis, they might be able to spare the time for slightly more thorough inter-departmental communication? As opposed to, say, f*cking around with my life and my schedule like government employees?
God, I hate waiting. Have I mentioned that before?
Fresh Horses
Sorry I’ve been so quiet lately. The Magical Mystery Drug has been doing a number on my stomach, and between napping to kill the heartburn and napping to kill the grouchies, I’ve been a little hard to engage in conversation.
Last week’s Monday visit was a bit of a surprise. Although in hindsight, I sorta knew there was some news coming down the pike, seeing as how I waited FOUR AND A HALF HOURS for the results of my CT scan. The news is: lung mets don’t like the Magical Mystery Drug anymore, and they don’t want to play. They’re going to keep on growing the way they want to, and pfphthbpbhpt to anyone who says different. Pelvic tumors are following orders, shrinking and softening and being little Trial’s Pets, but noooooooo, not my lungs.
Thus I’ve spent the past six days waiting for an appointment with my other oncologist, who the Phase I doc said would probably want to take me off the trial and start chemo again (but I should keep taking the nine delicious pills a day just in case she didn’t want me to stop, because once I stop I can’t start again, etc. etc.). Today I met with her, and once we’d worked out that no, Phase I doc didn’t want me to continue the trial even once I’d met with her; he said SHE’d probably want me to stop it and go on chemo (you’d think the inter-office communications over there at that world-class Cancer Factory would be a little clearer), there’s a new plan in place.
Starting next Tuesday, I’ll be hopping back on the chemo train: carboplatin and Alimta. Supposedly not too debilitating, and I’ll get to keep my hair. (Good news/bad news: while I like having hair, mine is really pissing me off, and I miss my perfect, ten-second-toilette wig.) And the schedule will allow for me to still make my First Descents climbing trip on the 19th.
I was pretty discouraged, feeling like, “how many more damn things do I have to throw at this disease?”, but now I realize I have lots of options still open to me. Once chemo has stabilized my lung disease, we can start looking once again at the over 300 clinical trials that are available to platinum-resistant ovarian patients. So many choices… think I can find one in Miami for the winter?
Photo 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.
The Carcinista 