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. .
Finally.
For those who aren’t on facebook (I understand, really), you might have missed my jubilant post-blog update on Monday: THE TRIAL DRUGS ARE WORKING. Those nasty little grey capsules that make my mouth taste like a dirty ashtray are actually worth the loss of my taste for chocolate. (Sad but true.)
I climbed out of the PET scanner on Monday and (after a brief trip to the cafeteria for my first food in over twelve hours) went straight to the Phase I doctor’s office. His preliminary read of the scan thirty minutes later showed a “marked decrease” in the metabolism* of the cells in my calcified tumors and lymph nodes, the ones that we had pegged as stable. While he offered no opinion of the new mets in my lungs, and I’ll have to wait for a full radiologist’s report on the scan for that, he was very excited about the “dramatic” change in my tumors. He said that the trial had shown the best results for ovarian patients, and that they were thinking about designing a Phase II trial for ovarian patients based on the good results. Including mine!
I’m beyond thrilled to get some good news for the first time in eighteen months, and REALLY glad that all of this rigamarole that they (Big Pharma) are putting me through for this drug might actually have an impact on other patients of this crappy, insidious, sneaky-ass disease.
Next week: further results of the PET scan; CT scan and results, and a week off the drug. Rash? No rash? Increased energy? We’ll see.
But you can quit mentally divvying up my couture for the near future. Vultures.
*PET scans work by reading the rate that your cells metabolize an injected radioactive sugar solution. Cancer cells metabolize sugar at a much higher rate than healthy cells, so after sitting with the solution in your bloodstream for an hour, they run you through a scanner and read the “hot spots” that have metabolized the most radioactive solution. These are measured by the amount of radioactivity they emit, and the rates are compared from scan to scan.
Photo courtesy images.
Caller ID
“Private Caller” is seldom a good sign. It’s usually some telemarketer totally flouting the FCC regulations that specify that our number is on the do-not-call list and making my marketer husband hot under the collar.
Or it’s The Cancer Factory. Which is was this morning. And not only just the hospital, but my actual oncologist. The day after a scan.
::cue ominous music: dum Dum DUMMMMM…::
Right. Pelvis and abdomen stable, she began. (Always lead with the good news.) Lung tumors progressing. (Ah, there it is.) Slowly, but progressing. Which, frankly, I’ve known for about three weeks. Ever since the allergy season started, I could tell.
Cancel the cytoxan. Bring on the PI3-Kinase inhibitor trial. They’re holding a spot open for me (let’s say it again: thank heaven I’m in Boston!), so as soon as my cytoxan wash-out (4 weeks) is over, I’m in like Flynn. Unless my tumor tests positive for the B-RAF genetic marker, in which case I would be eligible for that trial. And we all know how I love making important decisions. (Or maybe you don’t: when I used to have to choose between A and B, my mother would write each option on a piece of paper and mix them up behind her back, then I’d choose a hand. And invariably want the other option more. Pathetic.)
So we wait. Again. Lovely.
Maybe without the cytoxan I’ll have a little more energy for OMG! this weekend.
Feelin’ Funky
I kinda spent the weekend moping. Not off-by-myself, staring-at-the-TV, gorging-on-chips moping, but quiet reading, contemplation, unusual lack of exercise. I even vacuumed.
I don’t want to say that the results of the scan have gotten me depressed, but they threw me for a little loop, more than I would have expected. I guess I’ve been feeling so fine on the Avastin that I started to get a little cocky, and as anyone can tell you, that’s a sure sign of a fall waiting to happen. It’s not as if I’d stopped worrying about it (“Just say it, wimp, ‘the cancer'”), MY cancer, but it had receded to a place where I was actually thinking about learning about a new job, going on a kayaking adventure trip and feeling strong, planning summer trips and activities and not worrying about exhaustion or side effects.
Now, it’s not as if I’m going to keel over next week. The tumors are in the one- to three-millimeter range, and won’t impact my lung function for another six months or so even if we do nothing about them. And I still have lots of options for treating them. But as I was making pizza dough on Saturday, it hit me: some clinical-trial med they put me on might have hideous side effects. This might be the best I feel for a while. And before I could stop myself I took a little march down memory lane: summer 2006, unable to climb stairs without a break; nannies; supporters delivering meals. Mom trekking up here ten out of every 20 days to help run my household. Bald, rotund, shredded.
I feel like Mike Myers on SNL when he played that little hyperactive boy Phillip tied with a leash to the jungle gym: no matter how I try to get away from the damn cancer, eat right and exercise my feet off and do yoga and live in the moment and play with my kids and take tennis lessons and plan kayaking trips and chairing committees and all of it, I’m still tied to this effing jungle gym.
At least I look better than Nicole Kidman’s duck-lips.
Two Steps Forward, Three Steps Back
Have you ever had that dream where you’re running, something’s chasing you and you’re running as fast as you can, but no matter how fast you move your legs you don’t go anywhere? Yeah.
Got the results of the CT yesterday. (You see where this is going, don’t you.) The Avastin is successfully holding down the pelvic tumors – they’re even smaller than they were in November. The lungs, however, don’t seem to be getting the message. Old (tiny, glacially progressing) nodules have grown a millimeter or two; new subcentimeter nodules are appearing. No lymph node increases, nothing in the abdomen or bones. But those lung guys, off by themselves, clearly on their own program, making trouble.
I’m working on my optimism, but today it feels like my balloon is a little deflated. I know all the things I’m doing to take care of myself, exercise, diet, good attitude, and all the things my medical team are doing to take care of me, scans, great medicines, oodles of treatment options, are the best in the business. Seems the glacier’s gonna carve that canyon anyway.
The Avastin will continue; I’m meeting March 1 with the head of the clinical trial department to see if there are any open studies looking for a guinea pig who’s totally healthy except for the damn cancer. Let’s hope the nasty make-your-hair-fall-out-again studies are all full.
One thing’s for sure, I’m going shopping with my usual post-tax-return IRA deposit this year.
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 
