My first breast cancer mentor, the fabulous Ms. Lori from the C Squad, sent this moving and trenchant reaction to my last blog post. It deserves its own showcase, so here it is.
For an extra treat, check out the linked Barbara Ehrenreich and Molly Ivins pieces.
--Carolyn
Yes. Cancer sucks. No doubt about it. That’s why October is the scariest month – it’s not the witches, it’s the ghouls telling us we should buy products festooned with pink ribbons – “until there’s a cure.” Pink ribbons tart up everything from dog food to toilet paper. I’m sorry, but I don’t want to “wipe for the cure.”
Those wretched pink ribbons could only have been invented by someone who never had this disease, because as you well know, there is nothing pink and fluffy about breast cancer.
Until there’s a cure? How about “until we find the CAUSE,” so that we blameless vixens don’t have to suffer the god-awful “cures.” During chemotherapy, I remember thinking, “If this stupid disease doesn’t kill me, the cure sure as hell will.”
Rant over. Barbara Ehrenreich, in “Welcome to Cancerland: the Kitsch and Culture of Breast Cancer Awareness” does it more eloquently than I ever could. So did the late, great Molly Ivins, who died from this crappy disease.
After I was diagnosed with breast cancer a second time, and before my first-ever chemotherapy infusion six years ago on October 1st, I attended a chemo education class. The purpose? To “fight fear with knowledge.” Right. The class was filled with folks who were either spitting mad or helplessly weeping. The angry ones heckled the hapless nurse educator and her cheerful PowerPoint, illustrating frowning cancer cells, buff white blood cells, and smiling broccoli. Those hecklers were recidivists, returned to chemo penitentiary because the first incarceration had failed to reform their badass criminal cancers. They weren’t buying any of the “fight fear with knowledge” crap. They just wanted to fight. The weepers were worse: they simply sat there, sobbing My 49-year-old self walked out of that miserable session more terrified than the first time I was told I had breast cancer, at 39.
Remember, too, that along with the happy cruciferous vegetable lectures, medicos will narrate the treatment worst-case scenario style. Or they don’t tell you anything at all, so that you won’t “manifest unnecessary symptoms.” Huh? Who would want to make this stuff up?
You will experience many of the gruesome side effects, but you won’t experience all, or to the hideous degree described. And you will survive all of them, and live to tell the tale.
I have neuropathy in my hands and feet. I am tormented by severe osteoarthritis, which is a side effect of the Femara. My finger is now deformed, as are my wrist and toes. I also have two broken ribs. Blame it on the bossa nova? I think not. But I can still hike, run, dance, and climb trees. I just do it more carefully than before.
Cancer sucks. The second time around, after mastectomy two (glad I’m not a dog, because they have six breasts, or is it eight?) I was more terrified of the chemotherapy to come than I was of the amputations already endured. I admitted my fear to my yoga teacher. Robert gave me the best advice about how to survive a catastrophe. He told me that I could waste energy on fear, or cultivate curiosity.
I didn’t get it at first. Who wants to be curious about nausea and baldness? Then it became clear. Anger would starve me. Curiosity would feed me. Anger made me dwell upon how unfair it all was: I didn’t do anything to deserve two separate breast cancers, ten years apart. I didn’t deserve the on-the-job harassment I faced when I returned to work, the denial of simple accommodations to me to work because I didn’t “look or act sick enough.” I didn’t deserve the spontaneous bleeding, the feet that ached so badly I could barely walk, the metallic taste of food, the fatigue, the depression, the sleeplessness, the night sweats, the terror that every twinge meant recurrence. And I really didn’t deserve the stupid comments, including one from the amply endowed coworker who told me that I was “lucky” that because I was small-breasted, my mastectomies weren’t traumatic.
Nobody deserves this, least of all we who are enduring the indignities of cancer treatments and their aftermath. But the angrier I got about my situation, the more helpless I felt. I couldn’t do anything to stop the pain – and the stupid remarks – but I could learn from them. I could cultivate curiosity about the physical changes, write comic character sketches about insensitive clods, pretend I was a wee aquanaut adventuring through my body, seeing cell division and death up close, grin about “Cancer Girl Action Figure” with her cape and removable breasts and hair (ask Victoria), buy gorgeous lingerie to wear when the scars healed, dream about hair growing back, and the audacious short hair styles I had never had the guts to try.
Sixteen years after the first diagnosis, and six years after the second, I still must cultivate curiosity. Bad cancer things are still happening to me. But so are good things. I have met extraordinary women (hello, Carolyn and Victoria!), changed careers from one I hated to one I love, run a triathlon, hiked a mountain, obtained a tattoo, and launched a successful performing career that has taken me from Telluride to Atlanta to Italy.
In working to let go of fear, I have experienced moments of fearlessness. In enduring pain, I have grown strong. In bearing insensitive and downright cruel remarks, I have become wise. Okay, not ALL the time on the wisdom thing. Sometimes I want to rip open my shirt, Superman style, and scream at the offender, “Does THIS look ‘sick enough’ for you?” But I digress.
Consider your upcoming chemotherapy and the experiences to follow grist for your writer’s mill. Remember: curiosity did not kill the proverbial cat, because satisfaction brought him back. Thursday will come, chemotherapy will happen, it will suck, and you will be okay. Trust me on this one. Here’s to you, my fearless, brave, beautiful and curious friend.
Monday, October 4, 2010
Thursday, September 30, 2010
Get me outta here!
I've changed my mind. I don't want to have cancer.
Well, obviously I never wanted to have it, but I had bought into the image of myself facing it with grace and courage.
I'd be glamorously brave despite being ever-so-slightly wan. Like Ali MacGraw in "Love Story," my perfect lip gloss and eyeliner would signify that good grooming always triumphs over vile side effects like mouth sores, nausea and constipation.
Admittedly, I don't currently wear either lip gloss or eyeliner, I've never been well groomed, and I'm married to a man who really prefers the au naturel look. But in just one of the many, many upsides of my diagnosis, I'm gonna take a free seminar about how to glob on makeup to distract from chemo baldness and steroid puffiness. And I'll get a bag full of free cosmetics!
As the days tick down toward my first chemo treatment, I'm disintegrating into a jittery wreck. I whine and wheedle whenever I speak to someone from the cancer center. It doesn't help that they're neither as responsive nor as systematic as one would hope. Various random staffers call me from there with conflicting and confusing updates and requests, or else they don't call when I want them to.
"Well, Dr. D's nurse didn't return my call when she said she would, so maybe I'd better find another oncologist," I snapped at a hapless scheduler who called me this morning.
"What am I, crazy?" I barked sarcastically at a research assistant. "Why would I want to be part of a clinical trial for a drug when the FDA is seriously considering withdrawing it from the market?"
It's now confirmed. I start chemo one week from today on Thursday, October 7.
Yes, I know that it's just a few months out of my life. Yes, I know that millions of people have been down this path before. Yes, I know that I'm lucky -- that I live in a time and a place with excellent medical care, that I have health insurance, that I have a wonderful support network, that my cancer was caught relatively early.
None of that helps with my giant snit fit.
Stop the treatment plan. I want to get off.
Well, obviously I never wanted to have it, but I had bought into the image of myself facing it with grace and courage.
I'd be glamorously brave despite being ever-so-slightly wan. Like Ali MacGraw in "Love Story," my perfect lip gloss and eyeliner would signify that good grooming always triumphs over vile side effects like mouth sores, nausea and constipation.
Admittedly, I don't currently wear either lip gloss or eyeliner, I've never been well groomed, and I'm married to a man who really prefers the au naturel look. But in just one of the many, many upsides of my diagnosis, I'm gonna take a free seminar about how to glob on makeup to distract from chemo baldness and steroid puffiness. And I'll get a bag full of free cosmetics!
As the days tick down toward my first chemo treatment, I'm disintegrating into a jittery wreck. I whine and wheedle whenever I speak to someone from the cancer center. It doesn't help that they're neither as responsive nor as systematic as one would hope. Various random staffers call me from there with conflicting and confusing updates and requests, or else they don't call when I want them to.
"Well, Dr. D's nurse didn't return my call when she said she would, so maybe I'd better find another oncologist," I snapped at a hapless scheduler who called me this morning.
"What am I, crazy?" I barked sarcastically at a research assistant. "Why would I want to be part of a clinical trial for a drug when the FDA is seriously considering withdrawing it from the market?"
It's now confirmed. I start chemo one week from today on Thursday, October 7.
Yes, I know that it's just a few months out of my life. Yes, I know that millions of people have been down this path before. Yes, I know that I'm lucky -- that I live in a time and a place with excellent medical care, that I have health insurance, that I have a wonderful support network, that my cancer was caught relatively early.
None of that helps with my giant snit fit.
Stop the treatment plan. I want to get off.
Tuesday, September 28, 2010
Au revoir to tank tops
There’s a weird new bulge under the skin just south of my left collarbone, in a shape rarely found in nature, a half-inch-thick triangle. It’s my newly implanted PowerPort device, through which I'll receive chemotherapy. Nurses will stick a needle through the skin of my chest into this doo-dad whenever they need to give me drugs or take my blood.
A foot-long catheter is threaded from the device to the superior vena cava, a big vein in my heart. The doctor said something about going in through the jugular vein to insert this marvel of technology. My shaky grasp of anatomy combined with years of reading murder mysteries had left me with the impression that any cuts to the jugular mean instant death, but I’m still here to tell the tale.
This morning as I lay on the OR table under conscious sedation (plus a local anesthetic at the implantation site), I could feel the doctor rummaging around inside my chest, as if he were tying lures for fly-fishing or perhaps crocheting a doily. The sensation of little tugs and pushes against my innards wasn’t painful but wasn’t pleasant either. The nurses had tented my head with a sheet so I could see the clock on the wall and some hulking medical apparatuses (apparati?) but couldn’t see my own chest or the image of the surgery on the big TVs over the operating table.
The one fun part was when the anesthesia first hit my system and suddenly the lights on the ceiling started to pulse and gyrate as if they were starring in a big production number on Glee.
A four-inch square of gauze temporarily hides the critter under my clavicle, but I couldn't resist lifting a corner and taking a peek.
Big mistake.
I screeched and jumped back from the mirror. That cyborg look is so not cute. I'm going to need to stock up on turtlenecks.
The schedule of tests and procedures ticks on. Tomorrow: Echocardiogram to get a baseline of how my heart functions so the doctors can monitor whether chemo damages it. Monday: Pelvic ultrasound, hopefully to rule out problems in those gynecological areas that lit up on the PET scan. Still awaiting insurance approval: Bone density scan. Along the same lines as the echocardiogram, its aim is to find out how my bones are doing now, so doctors can gauge how much chemo weakens them.
All my ducks are lining up for me to start chemo soon, probably next week.
Thursday, September 23, 2010
The radioactive two-step
"Katy, I'm coming into the kitchen!" I hollered.
"Okay, I'm moving over," she hollered back. My pregnant houseguest -- who had to stay at least three feet away from my post-PET-scan glow-in-the-dark body at all times -- gracefully slid into the breakfast nook as I dropped off my dirty dishes in the sink.
Later I leaned over from the mandated distance to hand her some money and she grabbed it with the tips of her fingers and then we both took a standing leap back, nervous that our hands had briefly been separated by only the length of a $20 bill.
It made for a Keystone Kops pas-de-deux last night, but luckily the radioactive tracer dissipates quickly. By now it's fine for us to share close quarters.
The news from the body scan is that everything is probably fine, but I have to trot off for yet another test.
They saw a number of masses on my uterus that were likely fibroids -- something I have a history of -- but they could not rule out an underlying malignancy.
"Hot spots" in your body light up in a PET scan wherever cells are particularly active and excited about the radioactive sugar-solution that's been injected in your veins. That activity is measured by a score called SUV, standardized uptake value. A normal SUV is 4 or lower. Most malignancies measure at 6 or higher, according to Dr. C. My uterine masses scored 5.4.
There was also mild uptake on my left ovary, which could simply signal that I'm about to get my period, she said (and in fact it's due in about a week).
These results are evidently open to interpretation. Some scientists are so dubious about the SUV number that they've dubbed it silly useless value.
My next step: A pelvic ultrasound.
The good news: I've had plenty of those, and they're as noninvasive as a test can be (although they involve having to drink gallons of water and refrain from peeing). And I have to admit, I kinda like that warm goop they rub over your tummy.
"Okay, I'm moving over," she hollered back. My pregnant houseguest -- who had to stay at least three feet away from my post-PET-scan glow-in-the-dark body at all times -- gracefully slid into the breakfast nook as I dropped off my dirty dishes in the sink.
Later I leaned over from the mandated distance to hand her some money and she grabbed it with the tips of her fingers and then we both took a standing leap back, nervous that our hands had briefly been separated by only the length of a $20 bill.
It made for a Keystone Kops pas-de-deux last night, but luckily the radioactive tracer dissipates quickly. By now it's fine for us to share close quarters.
The news from the body scan is that everything is probably fine, but I have to trot off for yet another test.
They saw a number of masses on my uterus that were likely fibroids -- something I have a history of -- but they could not rule out an underlying malignancy.
"Hot spots" in your body light up in a PET scan wherever cells are particularly active and excited about the radioactive sugar-solution that's been injected in your veins. That activity is measured by a score called SUV, standardized uptake value. A normal SUV is 4 or lower. Most malignancies measure at 6 or higher, according to Dr. C. My uterine masses scored 5.4.
There was also mild uptake on my left ovary, which could simply signal that I'm about to get my period, she said (and in fact it's due in about a week).
These results are evidently open to interpretation. Some scientists are so dubious about the SUV number that they've dubbed it silly useless value.
My next step: A pelvic ultrasound.
The good news: I've had plenty of those, and they're as noninvasive as a test can be (although they involve having to drink gallons of water and refrain from peeing). And I have to admit, I kinda like that warm goop they rub over your tummy.
Wednesday, September 22, 2010
Feelin' groovy (ish)
My flirtation with higher consciousness is already kaput.
For today's PET/CT scan, which sought signs of cancer in my body, I turned to the oevre of Paul Simon instead of trying to reach within my soul and experience mindfulness.
"I'm going to Graceland, Graceland, Memphis, Tennessee," I hummed. "I am just a poor boy, though my story's seldom told..."
Tone-deaf though I am, I have enough musical sense to wince at how bad I sounded. Luckily the whoosh-whoosh-whoosh of big fans and the fact that the technician was in an adjacent room meant no one else had to be subjected to this desecration of Mr. Simon's immortal works.
A PET/CT scan is nowhere near as bad as an MRI.
First, there was the now-familiar pat-down of my arm, with much frowning over how teensy-tiny my veins are, not to mention the way they squirm away from the needle stick, like desperate little worms unearthed in the garden. It took three pokes to gain entry.
"You really should do biceps crunches with soup cans to get those veins plumped up for chemo," the technician said reprovingly. "Even though you're having a port implanted, only nurses and port-certified technicians can use that; you're still going to need a lot of blood draws from this arm and you have really difficult veins."
Then, a boring hour sitting still in a recliner -- no reading; no cell phone use; why, oh why, didn't they tell me to bring my iPod? -- while a radioactive isotope laced with a sugar solution coursed through my veins.
"Cancer loves sugar; it gobbles it up just like Ms. Pac Man goes after those little cherries," the tech said. "If there are any tumors in your body, they'll light up in the scan."
Finally, the actual scan. The machine looked like a giant doughnut, open on both ends and about four feet long and a couple of feet in diameter -- much better than the claustrophobic MRI capsule. I went through in increments, so my head was out of it for part of the time, and I scrunched my eyes closed for the rest.
Small children and pregnant women need to steer clear of radioactive moi for the rest of the day.
The brain MRI came back all clear, and I have every reason to believe that so will the body scan.
For today's PET/CT scan, which sought signs of cancer in my body, I turned to the oevre of Paul Simon instead of trying to reach within my soul and experience mindfulness.
"I'm going to Graceland, Graceland, Memphis, Tennessee," I hummed. "I am just a poor boy, though my story's seldom told..."
Tone-deaf though I am, I have enough musical sense to wince at how bad I sounded. Luckily the whoosh-whoosh-whoosh of big fans and the fact that the technician was in an adjacent room meant no one else had to be subjected to this desecration of Mr. Simon's immortal works.
A PET/CT scan is nowhere near as bad as an MRI.
First, there was the now-familiar pat-down of my arm, with much frowning over how teensy-tiny my veins are, not to mention the way they squirm away from the needle stick, like desperate little worms unearthed in the garden. It took three pokes to gain entry.
"You really should do biceps crunches with soup cans to get those veins plumped up for chemo," the technician said reprovingly. "Even though you're having a port implanted, only nurses and port-certified technicians can use that; you're still going to need a lot of blood draws from this arm and you have really difficult veins."
Then, a boring hour sitting still in a recliner -- no reading; no cell phone use; why, oh why, didn't they tell me to bring my iPod? -- while a radioactive isotope laced with a sugar solution coursed through my veins.
"Cancer loves sugar; it gobbles it up just like Ms. Pac Man goes after those little cherries," the tech said. "If there are any tumors in your body, they'll light up in the scan."
Finally, the actual scan. The machine looked like a giant doughnut, open on both ends and about four feet long and a couple of feet in diameter -- much better than the claustrophobic MRI capsule. I went through in increments, so my head was out of it for part of the time, and I scrunched my eyes closed for the rest.
Small children and pregnant women need to steer clear of radioactive moi for the rest of the day.
The brain MRI came back all clear, and I have every reason to believe that so will the body scan.
Friday, September 17, 2010
Zen like me
I panicked when the table on which I lay slid inside the narrow steel tube of the MRI and the blasts of sound began reverberating as if I were surrounded by jackhammers and dentist's drills, interspersed with random loud raps, like the worst knock-knock joke ever.
"Get me out of here," I screamed silently. But I knew that would just prolong the inevitable, so I tried to get through it by focusing on the most calming subject I could: kitties and how cute they are. I reflected on my boys Yogi and Boo Boo and wondered if they'd ever develop a talent like Nora, the piano-playing cat, who has her own line of merchandise. I thought of the surprised kitty and the ones that flush the toilet over and over and over.
And it worked. I calmed down enough to make it through the 50-minute MRI of my breasts back in July. At the time, the test was portrayed as likely to rule out the possibility of cancer and the need for a surgical biopsy. Instead, two days later, Dr. C called to say that the pathologist thought my little lump was "highly suspicious of an invasive malignancy" and she recommended that I have surgery right away. The very next day, my dad died.
Today I returned for another MRI, this time to see if cancer has spread to my brain.
This time when the panic gripped my chest and clenched my throat, I thought of Thich Nhat Hanh saying, "Breathing in, I see myself as a flower. Breathing out, I feel fresh." I synced my inhalations and exhalations to the memory of that melodious voice I'd heard a dozen years ago at Berkeley Community Theatre as I sat among hundreds of meditators manifesting calm.
See, cancer has already made me a deeper, more spiritual person.
I think this proves that I should get to skip right past the next four months of chemo, just like skipping a grade in school, since I've already learned An Important Life Lesson.
In case I can't get the teachers, er, doctors to agree that my newfound moral superiority should win me a Get Out of Chemo Jail Free card, I also had a one-on-one orientation on side effects by one of the nurses.
I won't dwell on every single gruesome possibiilty. The basic overview is that chemo kills all fast-dividing cells. That includes cancer cells (the only ones you really want to die), hair cells (hence that Kojak look), mucous membrane cells (hence food tastes crappy and you can get mouth sores), gut cells (hence the dread nausea). The drugs also wipe out your white blood cells, which ward off infection (so you're much more vulnerable to getting sick), red blood cells, which provide oxygen to your blood (without it, you feel extra tired and sometimes light-headed and short of breath) and platelets, which control clotting (say hello to spontaneous nose bleeds). The toxic "cocktails" can sap the strength out of your heart and bones.
And finally, they can cause neoropathy, numbness and tingling in your fingers and toes, which sometimes doesn't ever go away. Since I depend on my flying fingers to earn my living (er, and my brain, and we didn't even touch on the phenomenon called "chemo brain"), somehow that one worried me the most.
"Do people ever end up unable to type?" I asked, waving my fingers in a lame approximation of air keyboarding.
"Yes, that can happen," the nurse said evenly.
Look, I promise to stay more spiritually evolved. I'll even give up all the cute kitties on YouTube and spend my online time watching edifying TED videos and clicking on buttons that donate to charity. Just let me spring right ahead to radiation therapy.
"Get me out of here," I screamed silently. But I knew that would just prolong the inevitable, so I tried to get through it by focusing on the most calming subject I could: kitties and how cute they are. I reflected on my boys Yogi and Boo Boo and wondered if they'd ever develop a talent like Nora, the piano-playing cat, who has her own line of merchandise. I thought of the surprised kitty and the ones that flush the toilet over and over and over.
And it worked. I calmed down enough to make it through the 50-minute MRI of my breasts back in July. At the time, the test was portrayed as likely to rule out the possibility of cancer and the need for a surgical biopsy. Instead, two days later, Dr. C called to say that the pathologist thought my little lump was "highly suspicious of an invasive malignancy" and she recommended that I have surgery right away. The very next day, my dad died.
Today I returned for another MRI, this time to see if cancer has spread to my brain.
This time when the panic gripped my chest and clenched my throat, I thought of Thich Nhat Hanh saying, "Breathing in, I see myself as a flower. Breathing out, I feel fresh." I synced my inhalations and exhalations to the memory of that melodious voice I'd heard a dozen years ago at Berkeley Community Theatre as I sat among hundreds of meditators manifesting calm.
See, cancer has already made me a deeper, more spiritual person.
I think this proves that I should get to skip right past the next four months of chemo, just like skipping a grade in school, since I've already learned An Important Life Lesson.
In case I can't get the teachers, er, doctors to agree that my newfound moral superiority should win me a Get Out of Chemo Jail Free card, I also had a one-on-one orientation on side effects by one of the nurses.
I won't dwell on every single gruesome possibiilty. The basic overview is that chemo kills all fast-dividing cells. That includes cancer cells (the only ones you really want to die), hair cells (hence that Kojak look), mucous membrane cells (hence food tastes crappy and you can get mouth sores), gut cells (hence the dread nausea). The drugs also wipe out your white blood cells, which ward off infection (so you're much more vulnerable to getting sick), red blood cells, which provide oxygen to your blood (without it, you feel extra tired and sometimes light-headed and short of breath) and platelets, which control clotting (say hello to spontaneous nose bleeds). The toxic "cocktails" can sap the strength out of your heart and bones.
And finally, they can cause neoropathy, numbness and tingling in your fingers and toes, which sometimes doesn't ever go away. Since I depend on my flying fingers to earn my living (er, and my brain, and we didn't even touch on the phenomenon called "chemo brain"), somehow that one worried me the most.
"Do people ever end up unable to type?" I asked, waving my fingers in a lame approximation of air keyboarding.
"Yes, that can happen," the nurse said evenly.
Look, I promise to stay more spiritually evolved. I'll even give up all the cute kitties on YouTube and spend my online time watching edifying TED videos and clicking on buttons that donate to charity. Just let me spring right ahead to radiation therapy.
Thursday, September 16, 2010
Doctors -- can't count, can't write
How hard is it to count to four?
It turns out that I actually have four cancerous lymph nodes, not three as I was told last week.
The pathology report from my lymph-node surgery was so poorly written that it took a personal presentation by the pathologist to clarify this. The report said that one of the four sentinel nodes removed during the initial part of surgery was cancerous. Later it said that three out of 13 nodes were cancerous. Dr. C read that "three out of 13" as a summary of the overall findings. But yesterday she found out from the pathologist that those three cancerous axillary (underarm) nodes are in addition to the one cancerous sentinel node.
You see, 1 + 3 = 4.
I could do that math without even resorting to my fingers. Why couldn't they?
The difference is significant. Four-to-nine cancerous nodes represents a higher level of danger. My cancer is now officially Stage IIB (on a scale of 0 to IV), with a five-year survival rate of 81%. That golden 100% survival rate promised at the beginning continues to erode.
(It also turns out they removed 17 nodes in total -- the four sentinels plus 13 axillary nodes -- not 13 total as I was first told. To flaunt my advanced arithmetic skills again, 4 + 13 = 17.)
Dr. C tried to cheer me up. "I had a follow-up visit today with a patient who had 34 cancerous nodes and a 15-cm tumor. That was five years ago and she's cancer-free today."
That actually did provide some good perspective to get me off the freak-out wagon for a moment. (At least until she mentioned that that same patient developed lymphodema.)
In other news, the Summit Tumor Board discussed my case yesterday. Patients are not invited to these meetings at which a dozen or so cancer doctors -- medical oncologists, radiation oncologists, surgeons, pathologists -- review all the medical data on specific patients.
I had pictured this august assembly of eminences grises each drawing upon years of education and experience to recommend the absolutely best course of treatment for moi. I was looking forward to getting a robust second opinion -- and third and fourth and fifth -- from the preeminent specialists in this field.
It turns out they talked about what I can do for them, not what they can do for me, focusing on which of their ongoing clinical trials they could enroll me in.
As Dr. C explained this to me, I could feel little whiskers sprouting from my face and the stirrings of a compulsive desire to gnaw on furniture and electrical cords.
Thanks to a good friend and stellar biotech reporter, I knew the exact question to ask and I didn't bother to finesse the wording: "How would it benefit me to be a guinea pig in a clinical trial?"
"Well, if you got the trial drug and not the placebo, and if that drug turned out to be effective, you'd get the advantage of it," she said. "And then you'd be helping breast cancer patients in the future."
That's a number of if's, without even touching on what if the trial drug has nasty side effects on top of the nasty side effects that are already expected (trial drugs would be given in addition to the normal "standard of care" treatment drugs).
I'm perfectly happy to donate my body to science when I'm all done with it.
But right now I'm still using it, thank you very much.
It turns out that I actually have four cancerous lymph nodes, not three as I was told last week.
The pathology report from my lymph-node surgery was so poorly written that it took a personal presentation by the pathologist to clarify this. The report said that one of the four sentinel nodes removed during the initial part of surgery was cancerous. Later it said that three out of 13 nodes were cancerous. Dr. C read that "three out of 13" as a summary of the overall findings. But yesterday she found out from the pathologist that those three cancerous axillary (underarm) nodes are in addition to the one cancerous sentinel node.
You see, 1 + 3 = 4.
I could do that math without even resorting to my fingers. Why couldn't they?
The difference is significant. Four-to-nine cancerous nodes represents a higher level of danger. My cancer is now officially Stage IIB (on a scale of 0 to IV), with a five-year survival rate of 81%. That golden 100% survival rate promised at the beginning continues to erode.
(It also turns out they removed 17 nodes in total -- the four sentinels plus 13 axillary nodes -- not 13 total as I was first told. To flaunt my advanced arithmetic skills again, 4 + 13 = 17.)
Dr. C tried to cheer me up. "I had a follow-up visit today with a patient who had 34 cancerous nodes and a 15-cm tumor. That was five years ago and she's cancer-free today."
That actually did provide some good perspective to get me off the freak-out wagon for a moment. (At least until she mentioned that that same patient developed lymphodema.)
In other news, the Summit Tumor Board discussed my case yesterday. Patients are not invited to these meetings at which a dozen or so cancer doctors -- medical oncologists, radiation oncologists, surgeons, pathologists -- review all the medical data on specific patients.
I had pictured this august assembly of eminences grises each drawing upon years of education and experience to recommend the absolutely best course of treatment for moi. I was looking forward to getting a robust second opinion -- and third and fourth and fifth -- from the preeminent specialists in this field.
It turns out they talked about what I can do for them, not what they can do for me, focusing on which of their ongoing clinical trials they could enroll me in.
As Dr. C explained this to me, I could feel little whiskers sprouting from my face and the stirrings of a compulsive desire to gnaw on furniture and electrical cords.
Thanks to a good friend and stellar biotech reporter, I knew the exact question to ask and I didn't bother to finesse the wording: "How would it benefit me to be a guinea pig in a clinical trial?"
"Well, if you got the trial drug and not the placebo, and if that drug turned out to be effective, you'd get the advantage of it," she said. "And then you'd be helping breast cancer patients in the future."
That's a number of if's, without even touching on what if the trial drug has nasty side effects on top of the nasty side effects that are already expected (trial drugs would be given in addition to the normal "standard of care" treatment drugs).
I'm perfectly happy to donate my body to science when I'm all done with it.
But right now I'm still using it, thank you very much.
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