Catching My Breath
Of course I didn’t sleep well on Saturday night. What with the day being exhausting and the nervousness about missing my flight and the excitement about First Descents finally being here, I maybe strung together three hours of sleep. Just the way to start four days of exhilarating physical exertion, right?
Our group of thirteen campers found each other at the baggage claim area of the Denver airport in two shifts with the help of the very enthusiastic camp director and EMT volunteer. By the time I rolled up, some of the campers had already nailed down their nicknames and were admonished to use them exclusively, but their first stabs at a name for me (“Starfish!” because of my earrings) didn’t feel right. I wanted a perfect fit; there is a chance I’ll be using this nickname for years, and just-okay wouldn’t do. I knew it would have to come up organically, so I waited.
First Descents camps assign everyone a nickname upon arrival to distinguish the camp experience from the real life that many of us would like to forget. Camp is the opportunity to rise above your definition of yourself as “cancer patient” or “cancer survivor” and simply to be the person you are that week. You don’t have to be anyone’s mom, kid, wife, husband, sister, friend, co-worker; just yourself, an incredible sense of freedom. Not to mention a really easy way to remember the names of twenty new people at once.
Six of us plus Patch, the FD EMT volunteer, made our way to the short-term parking lot and a rented van in which we’d ride the hour-and-a-half to Estes Park. I’m not sure where the immature urge came from, but my competitive-sibling gene forced me to shout, “SHOTGUN!” by the side of the van. Hey, if no one else was going to call it… The nickname was found. (And, when discovered later by members of my family, confirmed as unassailably perfect.)
The first night, following my well-deserved nap, included an up-to-the-minute personal medical review with the staff and medical team (during which I filled them in on my fevers, lungs, and failed clinical trial), a delicious vegan organic dinner with the other campers, staff, and guides, and trying to remember everyone’s names. After icebreaker games (flashbacks to freshman orientation) and a rundown of the next morning’s plans, everyone drifted off to bed.
Monday morning, excitement made it easy to wake up and get ready to go; my new gear was shiny-clean and primed for action, and the two-hour time difference meant I had even had a decent night’s sleep. The altitude was having an impact on my breathing, though – at 8,500 feet the atmosphere contains about 35% of the oxygen it does at sea level, and I huffed and puffed climbing a flight of stairs or completing a sentence. Being winded made me nervous about the rock-climbing: how much would I be able to do? Would my fitness level and push-ups training make any difference?
The training climbs were planned for a rock formation not far from the lodge, within walking distance (coolers of food and drinks! folding chairs!) from the parking area, and the campers scrambled up to the base, eager to get started and afraid of how we’d do. The gusty wind made it hard to hear the instructors’ careful lessons on knot-tying, belaying, and checking our gear – I found out we’d be belaying each other; somehow that made it more scary than if the instructors had been directly involved. I hadn’t grasped the importance of the trust between teammates, the one climbing up and the one keeping watch at the bottom – when I climbed, I was in control, even though the belayer was watching my every step and keeping me safe from falling. But once it came time to belay back down (to lean back at a 90-degree angle from the rock and hang by my harness from the rope and pulley controlled by my belayer on the ground) I was terrified. You want me to what? Walk backwards off this cliff hoping that my brand-new best friend is paying attention and holding on tight? All the 40 feet back to terra firma? Holy crap, what was I doing here?
BAM, the magnitude of where I was and what I was doing hit me. I was up on the side of a rock, in a city and state I’d never been to before, surrounded by people I’d only known for eighteen hours cheering me on and hanging my butt, literally, in the balance. Cancer patients put their trust in doctors, nurses, family members… people we’ve known for years, interviewed carefully, background-checked. Who were all these campers? Ultimately, I think it was this overwhelming unfamiliarity that helped me sink into the new, delicious abandon of trust, tip myself over the verge and bounce backwards to the ground.
The cheers and support of my new best friends made all the difference that day – they helped each of us to climb past our personal insecurities and to back down to earth again over and over. As we rooted each new climber to the top, as we spotted belayers and checked everyone’s gear before a new climb, our reliance on each other and our shared triumphs hitched us all to a common purpose that WASN’T cancer, and that felt really, really good.
After lunch in the sun I tried a tougher climb, but about halfway up the altitude and the fresh air and physical efforts conspired to stop me – other campers later spoke of watching me “hit the wall” on the side of the rock face – and I cried, “I’m done!”, belayed down and headed for my chair for a nap; I knew I was finished for the day. I dozed in my chair for an hour or so, then the concerned doctor gave me a ride back to the lodge and my bed around 2PM. As I slept more, my headache grew. I wanted to take some Tylenol to kill the headache (it couldn’t be dehydration, as I’d had about two quarts of water since we started climbing), but was feeling nauseous and knew I needed to eat first so I wouldn’t get sick. Vicious cycle – I dozed off and on for about two hours until Clover came to check on me and I asked her to get the doctor. Hack finally showed up and gave me some Zofran for the nausea and some Diamox for the altitude acclimation, and forced me to eat yogurt. The food helped me get down some Tylenol; that and some more napping wiped the headache clean. Turns out all that water is nothing for a day of exertion without some salt: should have been Gatorade and a bag of chips. Lesson learned.
By 6:30 I was able to get up and have dinner with the crew, and felt better enough to join the after-dinner “campfire” session to talk about the day and how much fun we each had had, and how proud we were of our accomplishments. And to enjoy the dynamic that was developing – the personalities were linking, meshing, overlapping, and we were getting comfortable enough together to start making fun of each other, the true test of friendship. Things were starting to get good. My addition to the evening’s observations was that FD staffers and volunteers are TOTALLY as cool as the hype I’ve heard about them – their enthusiasm was contagious from that first moment at the airport.
Next: Overestimating my abilities…
Photo courtesy: Wildflower
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?
It’s September…How Are Your Ovaries?
I’m reading a book about how making split-second decisions from the gut can be just as effective (and in some cases, more so) as examining copious evidence and making logical, scientific decisions over time.
Wish I’d known that in 2005. Maybe then I would have listened when my body started shouting at me. “Hey! You’re tired! More so than the average mom-of-two-little-boys!” “Yo! Down here! You’re not gaining weight, you’re bloated!” “Run, don’t walk, to the bathroom – bladder pressure overload.” And “No, it’s not the protein bars – your bowels are NOT happy.”
All symptoms of ovarian cancer. Classic symptoms, as a matter of fact. Like, textbook. But I was sure that there were logical explanations for all of the things that were going wrong with my body, including the pelvic pain, which I convinced myself was a functional cyst, since it hurt worse when I was ovulating.
If I’d known more about what the symptoms of ovarian cancer were, if I’d known that HALF the women diagnosed with ovarian cancer are under age 60, I might not have convinced myself that I was too young and healthy to have anything really wrong with me. I might have gone to see my doctor in December, when I first noticed things feeling…different. Nothing I could really put my finger on, but my instincts recognized changes before my rational brain did.
Over 21,000 women will be diagnosed with ovarian cancer in 2010. 13,000 will die from the disease. I’ll fight that second number, but I need your help with the first one. Let’s increase our vigilance about ovarian cancer, even as we lobby for research funding and to get more doctors to take our symptoms seriously.
Let my 20/20 hindsight help you or a woman you love be aware of the symptoms of ovarian cancer, so you (or she) will get checked out by a gynecologist as soon as you experience them, and get treated early enough to get on the 85% five-year survival side of the statistics, instead of the 35% side where I am.
I know I make ovarian cancer look good, but this is one club you do NOT want to join. Tell a friend. Or thirty.
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.
