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.
Thursday, September 30, 2010
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.
Tuesday, September 14, 2010
Treatment plan: Grim and grimmer
Me and my girls will be going to reform school, it turns out.
My new medical oncologist, Dr. D - young and whip-smart with a laser-like focus on killing cancer cells -- wants us enrolled in an aggressive chemotherapy regime asap.
Dr. D isn't big on sugar-coating. She used the phrase "that's a poor prognostic factor" at least four times in discussing various aspects of my cancer -- the fact that the lymph-node tumors had grown outside the nodes (called extra-capsular extension), the rate of cell reproduction (K-67 of 15%), the size of the lymph-node tumors (biggest was 1.2 cm), and the fact that the cancer was in the lymph nodes at all.
She recommends "dose-dense therapy" in which I'd get chemo every other week as "better for disease-free survival." The other option is chemo every three weeks, which might allow more recovery time from the nasty side effects.
I have to return for an hour-long briefing on side effects, but Dr. D touched on several that have long-term medical implications: damage to the heart muscle; bone thinning; and neuropathy, which is tingling and numbness in the extremities "that's not completely reversible."
Losing my hair is guaranteed. Fatigue and nausea are also par for the course.
Basically I'm signing up to have them inject Drano into my veins on a regular basis -- the literature they gave me said the drugs are so toxic they can burn your flesh if they leak out of the injection site.
She strongly recommended that I stop working for the rest of the year. "You'll be getting super-strong chemo and antinausea drugs every two weeks. I don't want you struggling through and feeling horrible and in the bathroom sick at work."
Mark and I both sat there in a state of shock. My take-away was that the cancer news is grim and the treatment outlook is brutal.
There's a lengthy list of procedures to tackle before treatment starts: surgical implantation of a port to deliver all these toxic drugs, echocardiogram to get a baseline of how my heart currently functions, bone density scan, full-body PET/CT scan, brain MRI.
I also need to meet the radiation oncologist who will be treating me after chemo, and take a tour of the chemo facility at Herrick.
It should be just like touring a birthing center -- but with bleak foreboding instead of happy anticipation.
My new medical oncologist, Dr. D - young and whip-smart with a laser-like focus on killing cancer cells -- wants us enrolled in an aggressive chemotherapy regime asap.
Dr. D isn't big on sugar-coating. She used the phrase "that's a poor prognostic factor" at least four times in discussing various aspects of my cancer -- the fact that the lymph-node tumors had grown outside the nodes (called extra-capsular extension), the rate of cell reproduction (K-67 of 15%), the size of the lymph-node tumors (biggest was 1.2 cm), and the fact that the cancer was in the lymph nodes at all.
She recommends "dose-dense therapy" in which I'd get chemo every other week as "better for disease-free survival." The other option is chemo every three weeks, which might allow more recovery time from the nasty side effects.
I have to return for an hour-long briefing on side effects, but Dr. D touched on several that have long-term medical implications: damage to the heart muscle; bone thinning; and neuropathy, which is tingling and numbness in the extremities "that's not completely reversible."
Losing my hair is guaranteed. Fatigue and nausea are also par for the course.
Basically I'm signing up to have them inject Drano into my veins on a regular basis -- the literature they gave me said the drugs are so toxic they can burn your flesh if they leak out of the injection site.
She strongly recommended that I stop working for the rest of the year. "You'll be getting super-strong chemo and antinausea drugs every two weeks. I don't want you struggling through and feeling horrible and in the bathroom sick at work."
Mark and I both sat there in a state of shock. My take-away was that the cancer news is grim and the treatment outlook is brutal.
There's a lengthy list of procedures to tackle before treatment starts: surgical implantation of a port to deliver all these toxic drugs, echocardiogram to get a baseline of how my heart currently functions, bone density scan, full-body PET/CT scan, brain MRI.
I also need to meet the radiation oncologist who will be treating me after chemo, and take a tour of the chemo facility at Herrick.
It should be just like touring a birthing center -- but with bleak foreboding instead of happy anticipation.
Friday, September 10, 2010
Reprieve: You're lookin' swell, Dolly!
The threat of incarceration at the Alta Bates Home for Wayward Breasts prompted Dolly to clean up her act. She's still a bit over-sensitive, a bit swell-headed and looks like she's been hitting the blusher too hard, but she's finally getting down to the business of recovery. Dr. C was very pleased with her turn-around.
And the rest of me is finally perking up after four days huddled on the sofa clutching ice packs and emitting occasional whimpers. Of course Yogi and Boo Boo will be diappointed by the end of my couch potato lifestyle. They've spent three years trying to train me that that's where I belong: herding me to the sofa, prancing ahead, looking back with little encouraging miows to make sure I'm following, waiting for me to sit and then jumping aboard for a cuddle and some ambient body heat. They were quite gratified that their efforts had finally paid off and I was living as God and kitties intended, staying exactly where they wanted me and never annoying them by shifting position.
For now Dr. C is leaving the incision site open and packed with gauze, which seems to be helping the healing. She'll give Dolly a little cleaning and fresh, er, garments, daily for the next few days; presumably at some point I'll get stitched back up again.
Whew! Soon we'll be moving on to Phase Two of treatment. I'll meet my medical oncologist on Monday. On Wednesday a range of cancer doctors on the Alta Bates Summit Tumor Board will review my case and recommend the best course of treatment. I'll be sorry to say goodbye to Dr. C, an excellent surgeon who has consistently been compassionate and straightforward with me.
And the rest of me is finally perking up after four days huddled on the sofa clutching ice packs and emitting occasional whimpers. Of course Yogi and Boo Boo will be diappointed by the end of my couch potato lifestyle. They've spent three years trying to train me that that's where I belong: herding me to the sofa, prancing ahead, looking back with little encouraging miows to make sure I'm following, waiting for me to sit and then jumping aboard for a cuddle and some ambient body heat. They were quite gratified that their efforts had finally paid off and I was living as God and kitties intended, staying exactly where they wanted me and never annoying them by shifting position.
For now Dr. C is leaving the incision site open and packed with gauze, which seems to be helping the healing. She'll give Dolly a little cleaning and fresh, er, garments, daily for the next few days; presumably at some point I'll get stitched back up again.
Whew! Soon we'll be moving on to Phase Two of treatment. I'll meet my medical oncologist on Monday. On Wednesday a range of cancer doctors on the Alta Bates Summit Tumor Board will review my case and recommend the best course of treatment. I'll be sorry to say goodbye to Dr. C, an excellent surgeon who has consistently been compassionate and straightforward with me.
Thursday, September 9, 2010
My girls: The revenge of Dolly
So my girls -- or goils as we say back in Joisey -- have always been a matched set, identical twins, two peas in a pod. When I nursed my son, each one got equal time. They get equal display on the rare occasions that I flash a little decolletage. I've never done anything to make them think I would play favorites.
Now Dolly on the right side is striking out on her own and establishing a new identity as a bad girl, while her plain-Jane sister, the good twin, quietly continues to do her homework, help with household chores, etc. I feel kind of bad that I'm ignoring her while Dolly and her prima donna fits suck up all the attention.
Dolly is lovelier than ever, so round and rosy, but has become a really mean girl. If I don't yield to her demands that I hold stock-still, she has a way of punishing me.
I took her to see Dr. C this morning, who winced yet again when she saw the latest ballooning.
"Nasty, nasty, nasty," was all she could say. "The infection is spreading. The antibiotics haven't done anything yet."
She numbed me up, sliced open the incision and rummaged around in there to clean out a bunch of what she called "gunk."
I love it when she uses medical terms I understand.
I told her how I think Dolly looks very pretty.
She was shocked. "That's not pretty at all to a surgeon. It's very, very, very not pretty."
I wanted to shush her so we wouldn't hurt Dolly's feelings.
Dr. C dressed Dolly with acres of gauze and tape, and told me to return tomorrow morning. If my girl isn't any better, she wants to admit us to the hospital for IV antibiotics.
I really don't think I should be letting Dolly run my life like this.
Now Dolly on the right side is striking out on her own and establishing a new identity as a bad girl, while her plain-Jane sister, the good twin, quietly continues to do her homework, help with household chores, etc. I feel kind of bad that I'm ignoring her while Dolly and her prima donna fits suck up all the attention.
Dolly is lovelier than ever, so round and rosy, but has become a really mean girl. If I don't yield to her demands that I hold stock-still, she has a way of punishing me.
I took her to see Dr. C this morning, who winced yet again when she saw the latest ballooning.
"Nasty, nasty, nasty," was all she could say. "The infection is spreading. The antibiotics haven't done anything yet."
She numbed me up, sliced open the incision and rummaged around in there to clean out a bunch of what she called "gunk."
I love it when she uses medical terms I understand.
I told her how I think Dolly looks very pretty.
She was shocked. "That's not pretty at all to a surgeon. It's very, very, very not pretty."
I wanted to shush her so we wouldn't hurt Dolly's feelings.
Dr. C dressed Dolly with acres of gauze and tape, and told me to return tomorrow morning. If my girl isn't any better, she wants to admit us to the hospital for IV antibiotics.
I really don't think I should be letting Dolly run my life like this.
Wednesday, September 8, 2010
Infection: Hello, Dolly!
I was proud of how I bounced back from Thursdays' surgery, stopping the pain pills after just 24 hours, enjoying my sunny yard, cooking meals, attending a party at a friend's lovely beach house on Sunday. I felt like my regular self, and fully expected to be back at work on Tuesday and back to my normal life.
But then Sunday evening I started to feel not-so-well. That night was misery, as my right breast and underarm were incredibly sore, and left me gasping in pain whenever I moved (despite having resumed the pain pills). Usually I'm a night thrasher, but my body quickly figured out that the price to pay for thrashing would be mucho agony and I was able to lay still and sleep for two hours at a stretch, until inevitably I'd move and be awakened by pain. I felt like a ghoul in a horror movie as I staggered to the bathroom with my bloody tubes dangling and moans escaping my lips.
Stupidly, I didn't call my doctor until Tuesday morning. By then it was obvious that both surgical sites had a problem. My right breast had gone from C cup to Dolly Parton territory. It looked as if ole Dolly had liberally slathered it with rouge and was as tender as a black eye. My right underarm was similarly red and swollen.
I developed a new way of walking in which I hunched my body around the right side to protect it and moved with mincing, dainty steps to avoid the sudden movements that could trigger pain, like Quasimodo at a cotillion ball.
Dr. C had me come in and grimaced as soon as she saw Rudolf, the big red boobie, and the murky-looking fluid that was collecting in my drainage bulb.
"That looks nasty," she said. "Bacteria could have gotten in the drainage tube and traveled up into your body. We'll take the tube out and start you on antibiotics. You should feel better in a few days."
Actually I felt better right away just from the relief of knowing there was a simple solution. (Although I sure wished it were a quick one as well!)
Luckily, my body excels at sleeping off illness. My temperature spiked to 103.8 last night, but I was able to get eight hours of Z's (in two-hour increments) and by morning it was back to normal. I still have pain when I move, but I've learned to act as if my right arm is paralyzed, which keeps it in check.
This is just a temporary condition with no long-term significance; a month from now I'm sure I won't even remember it. But at this moment it dominates my consciousness as I move ever-so-gingerly, trying to placate the pain gods so they won't rain their punishment down on me.
But then Sunday evening I started to feel not-so-well. That night was misery, as my right breast and underarm were incredibly sore, and left me gasping in pain whenever I moved (despite having resumed the pain pills). Usually I'm a night thrasher, but my body quickly figured out that the price to pay for thrashing would be mucho agony and I was able to lay still and sleep for two hours at a stretch, until inevitably I'd move and be awakened by pain. I felt like a ghoul in a horror movie as I staggered to the bathroom with my bloody tubes dangling and moans escaping my lips.
Stupidly, I didn't call my doctor until Tuesday morning. By then it was obvious that both surgical sites had a problem. My right breast had gone from C cup to Dolly Parton territory. It looked as if ole Dolly had liberally slathered it with rouge and was as tender as a black eye. My right underarm was similarly red and swollen.
I developed a new way of walking in which I hunched my body around the right side to protect it and moved with mincing, dainty steps to avoid the sudden movements that could trigger pain, like Quasimodo at a cotillion ball.
Dr. C had me come in and grimaced as soon as she saw Rudolf, the big red boobie, and the murky-looking fluid that was collecting in my drainage bulb.
"That looks nasty," she said. "Bacteria could have gotten in the drainage tube and traveled up into your body. We'll take the tube out and start you on antibiotics. You should feel better in a few days."
Actually I felt better right away just from the relief of knowing there was a simple solution. (Although I sure wished it were a quick one as well!)
Luckily, my body excels at sleeping off illness. My temperature spiked to 103.8 last night, but I was able to get eight hours of Z's (in two-hour increments) and by morning it was back to normal. I still have pain when I move, but I've learned to act as if my right arm is paralyzed, which keeps it in check.
This is just a temporary condition with no long-term significance; a month from now I'm sure I won't even remember it. But at this moment it dominates my consciousness as I move ever-so-gingerly, trying to placate the pain gods so they won't rain their punishment down on me.
Test results: Pathology report, Oncotype DX
I think I'm so smart, but it turns out my two intensive weeks at Google U haven't made me a doctor. Lots of test results to report, but uncertain about what it all means. For a girl like me, who loves to have everything crystal clear, this is frustrating.
First up, the pathology report from the lymph node surgery.
They're positive that the re-excision of my breast got out every last scrap of cancer left over from the first biopsy.
The lymph node report: Three out of 13 nodes she removed had metastatic ductal carcinoma.
Dr. C removed a chunk of flesh from my underarm the size of a child's fist. It contained nine lymph nodes; earlier in the surgery she had removed four sentinel nodes. The first sentinel node they looked at was cancerous; the others were not. Two of the under-arm nodes had cancer, for a total of three with cancer. The largest lymph-node metastasis was 1.2 cm and it extended into "perinodal soft tissue." The smallest was 0.4 cm, also with extension into soft tissue.
The number of lymph nodes involved is important because it tells you about the cancer's personality - how aggressive it is. Having any lymph-node involvement is not good, but having three or fewer nodes with cancer indicates it's not as aggressive as it could be. Four to nine cancerous nodes puts you in a different classification; 10 or more cancerous nodes is an even higher-risk category.
An important question I forgot to ask: How much does size matter? At 1.2 cm, the largest metastatic tumor was as big as a pea or a pearl; that seems pretty big to me.
I did ask the significance of the cancer having grown beyond the nodes into the surrounding flesh. "It portends a little worse if there's an extension out of the lymph node capsule," Dr. C said.
What about the lymph nodes still in my body? (Most people have about 45 on each side of the upper body; she only took out 13.) Does that mean that about one-quarter of the remaining nodes on my right side might be cancerous?
Dr. C was reassuring that she thinks all the cancerous nodes are gone. She took out all the lymph nodes in the area nearest the breast. Cancer usually does not skip nodes, so it's unlikely that other nodes still have cancer, she said.
Next up: the results of Oncotype DX, the new-fangled test that evaluates 21 genetic markers from the tumor to help determine how helpful chemo will be in treatment; it looks ahead five years to see what your prognosis would be with and without chemo.
My score of 24 (not 26 as she'd previously told me), boils down to this:
If I'm treated just with hormone blockers and no chemotherapy, I have a 12% chance of death or systemic recurrence within five years. If I get chemo, my chances of death/systemic recurrence would be 10%. That 2% difference seems like a fairly trivial "reward" for undergoing the ordeal of chemo.
From the moment in the recovery room when Mark told me they'd found cancer in the nodes, I had understood that the 100% survival rate Dr. C originally promised me was no longer in effect.
Still, this was the first time I had heard a medical professional (or anyone) say the word "death" in connection with me and this disease.
It wasn't a great feeling, even though lots and lots and lots of women with breast cancer have node involvement and live through it just fine. But if one out of every 10 who have the same kind of cancer as me don't make it (or have systemetic recurrence, which means eventually they won't make it), well, I didn't really liike hearing that.
"What we're most worried about for you is systemic recurrance, which would mean it's spread to your bones, liver or brain, somewhere where we can't treat it surgically," she said. "We're not as worried about local recurrence because that is treatable."
That's why my next round of tests next week will be a brain MRI and a full-body PET/CT scan to make sure there's no cancer lurking elsewhere.
"I think it's highly unlikely we would find that it had metastasized to that extent," Dr. C said, "but I told you I was sure the lymph nodes would be clear and they weren't, so I don't want to make you any more promises."
First up, the pathology report from the lymph node surgery.
They're positive that the re-excision of my breast got out every last scrap of cancer left over from the first biopsy.
The lymph node report: Three out of 13 nodes she removed had metastatic ductal carcinoma.
Dr. C removed a chunk of flesh from my underarm the size of a child's fist. It contained nine lymph nodes; earlier in the surgery she had removed four sentinel nodes. The first sentinel node they looked at was cancerous; the others were not. Two of the under-arm nodes had cancer, for a total of three with cancer. The largest lymph-node metastasis was 1.2 cm and it extended into "perinodal soft tissue." The smallest was 0.4 cm, also with extension into soft tissue.
The number of lymph nodes involved is important because it tells you about the cancer's personality - how aggressive it is. Having any lymph-node involvement is not good, but having three or fewer nodes with cancer indicates it's not as aggressive as it could be. Four to nine cancerous nodes puts you in a different classification; 10 or more cancerous nodes is an even higher-risk category.
An important question I forgot to ask: How much does size matter? At 1.2 cm, the largest metastatic tumor was as big as a pea or a pearl; that seems pretty big to me.
I did ask the significance of the cancer having grown beyond the nodes into the surrounding flesh. "It portends a little worse if there's an extension out of the lymph node capsule," Dr. C said.
What about the lymph nodes still in my body? (Most people have about 45 on each side of the upper body; she only took out 13.) Does that mean that about one-quarter of the remaining nodes on my right side might be cancerous?
Dr. C was reassuring that she thinks all the cancerous nodes are gone. She took out all the lymph nodes in the area nearest the breast. Cancer usually does not skip nodes, so it's unlikely that other nodes still have cancer, she said.
Next up: the results of Oncotype DX, the new-fangled test that evaluates 21 genetic markers from the tumor to help determine how helpful chemo will be in treatment; it looks ahead five years to see what your prognosis would be with and without chemo.
My score of 24 (not 26 as she'd previously told me), boils down to this:
If I'm treated just with hormone blockers and no chemotherapy, I have a 12% chance of death or systemic recurrence within five years. If I get chemo, my chances of death/systemic recurrence would be 10%. That 2% difference seems like a fairly trivial "reward" for undergoing the ordeal of chemo.
From the moment in the recovery room when Mark told me they'd found cancer in the nodes, I had understood that the 100% survival rate Dr. C originally promised me was no longer in effect.
Still, this was the first time I had heard a medical professional (or anyone) say the word "death" in connection with me and this disease.
It wasn't a great feeling, even though lots and lots and lots of women with breast cancer have node involvement and live through it just fine. But if one out of every 10 who have the same kind of cancer as me don't make it (or have systemetic recurrence, which means eventually they won't make it), well, I didn't really liike hearing that.
"What we're most worried about for you is systemic recurrance, which would mean it's spread to your bones, liver or brain, somewhere where we can't treat it surgically," she said. "We're not as worried about local recurrence because that is treatable."
That's why my next round of tests next week will be a brain MRI and a full-body PET/CT scan to make sure there's no cancer lurking elsewhere.
"I think it's highly unlikely we would find that it had metastasized to that extent," Dr. C said, "but I told you I was sure the lymph nodes would be clear and they weren't, so I don't want to make you any more promises."
Friday, September 3, 2010
Lymph surgery and aftermath
I heard the woman's voice as if from a great distance. "Carolyn, your surgery is over and it went very well. I'm Mary, one of the nurses. Can you wake up for me?"
I couldn't remember how to open my eyelids, but I knew there was something important I needed to ask right away. "So my lymph nodes were clear?"
"Yes, everything was fine."
What a relief. I started to notice that the whole upper right side of my torso was throbbing. Whew, if it hurts this much from just the smaller sentinel node surgery, it's a good thing I didn't have to experience the pain from the full axillary surgery.
Another nurse materialized and I told her about the pain. She plunged a hypodermic into my IV; I could feel the dark cloud of clenched misery drift away as it took effect.
I wanted to double-check with her. "My lymph nodes were clear, right?"
"That's right," she said.
"Can my husband come in?"
"You're not quite ready but we'll get him soon."
A little later, she elevated the top part of my gurney so I could sit up, and Mark appeared.
I focused on his beautiful blue eyes as he sat down and asked how I felt.
"It was hurting a lot but they gave me something." I figured I'd triple-check. "So my lymph nodes were clear?"
His eyes got brighter. "They found cancer in the first node they looked at, honey."
"What! But the nurses said everything was fine." I could hear my voice rising higher and higher and my breath starting to come out in gasps. "You mean they went in and did the bigger surgery and took out a whole lot of the nodes?"
He nodded. By now I was sobbing. "That means it's metastasized."
His eyes were wet. "That's right, honey."
"I'll have to have chemotherapy."
"That's right, honey."
"Wait, are you sure? Did Dr. C say that? Did she tell you I have to have chemo?"
"Yes, she said there wasn't any choice now; you definitely will need chemo."
I couldn't believe this. Dr. C had been certain we wouldn't find anything in the lymph nodes and I was sure she was right. I'd even wondered if I should ask about skipping the surgery.
"Fuck," I choked out between sobs as Mark held my hand. "Fuck. Fuck. This isn't fair."
* * *
Earlier this hospital adventure had gone better than our previous outing (when the surgery got delayed for several hours).
In the nuclear medicine department, I was escorted to lie down on a narrow steel table; my 128-pound frame barely fit. "What if you have to get a 300-pound person on here?" I asked.
Eric, the friendly technician, used the kind of medical jargon I could understand. "Oh, the important parts fit on the table and the rest just kind of splooshes over the sides."
The scruffy but cute young nuclear med doctor warned me: "I have to tell you, a lot of patients find this procedure very uncomfortable. I'm going to inject the radioactive isotype in four places on your breast, at 12 o'clock, 3, 6 and 9. It's an acidic substance and many people feel a strong burning sensation. I get a lot of nasty letters afterwards saying 'You really hurt me.' Just tell me if it hurts and I can try to go more quickly or more slowly; whatever you need."
But actually it wasn't that bad. I did feel briefly as if I were being poked with hot needles, but it was over quickly.
Eric told me to spend 10 minutes gentling massaging my breast to spread the isotype. Too bad Mark was planted outside in the hallway; this would have been a perfect medical job for him to tackle.
Lying under a giant Geiger counter/camera, I watched a black-screened monitor slowly light up with the image of the nuclear substance, like seeing a Polaroid photo develop. There was a bright cluster of four dots where the doctor had injected the isotype, then two smaller concentrations that were my sentinel lymph nodes. There were smaller shimmering dots all over the breast. Eric gave me a lead shield to hold over the injection site so its brightness wouldn't overshadow the other areas; it was the size and shape of a CD, but weighed a couple of pounds.
Back in a curtained space in the pre-op area, me in a hospital gown on a gurney, Mark in an uncomfortable plastic chair, we settled in with our books and made bets on what time surgery would actually happen. Amazingly, the anesthesiologist showed up at 2:30, the scheduled time. This time I was awake as I was wheeled to the OR and for about half an hour in there while three nurses prepped the room and paged my surgeon. "You won't remember any of this," one of them told me -- but ha! proved her wrong.
When Dr. C arrived, I asked her about the Oncotype DX test. The night before, she'd told me that my score was 26 -- the high range of a grey area where it was uncertain whether chemotherapy would be beneficial or not. (Below 17 generally you don't need chemo; 18-30 is midrange, and above 31 you must have chemo.) She suggested coming to her office on Tuesday to discuss it in more detail.
That was all I remembered until waking up in the recovery room.
* * *
"Dr. C said you can stay here tonight or you can go home, whichever you want," Mark said. "I told her you'd probably want to go home."
"Oh yes, get me out of here, honey."
But I was so devastated by the news and so ensconced on my gurney and so groggy and intermittently being slammed by pain that I wasn't sure if I could get up. I fantasized that Mark could just wheel my gurney under the night skies to our house, as if I were royalty being carried in a sedan chair in a stately procession.
We could hear other patients waking up in the curtained areas all around us in the recovery room. The nurses were offering graham crackers and juice, which made me feel like we were preschoolers just rousing from naptime. One man, who must have been in his 60s, said querulously: "Don't you have any milk? I like milk with my cookies."
A nurse named Frank arrived to show us how to care for the drainage tube that ran from my underarm to a small plastic bulb. It would stay in place for 10 days, he said, and we'd need to empty and measure the accumulated fluid (mainly blood) several times a day. Mark, who hates blood, gamely did what needed to be done, and said he'd be able to manage it when we got home; I was still too groggy to grasp what was going on.
"Do you want to get dressed?" the nurse asked. I just couldn't fathom how I could lift my arms, let alone navigate all the complex tubing coming out of me.
"Can I just wear the hospital gown home?" I asked. He agreed -- score! It was the usual fetching, open-in-the-back number but I tried not to flash anyone as I navigated from the wheelchair to the car and from the car to our house.
At home, my pee came out bright blue, thanks to the blue dye they'd injected to help locate the sentinel nodes. I felt like a little kid who'd just learned to go potty for the first time. "Mark, come see! I have pretty pee!"
I couldn't remember how to open my eyelids, but I knew there was something important I needed to ask right away. "So my lymph nodes were clear?"
"Yes, everything was fine."
What a relief. I started to notice that the whole upper right side of my torso was throbbing. Whew, if it hurts this much from just the smaller sentinel node surgery, it's a good thing I didn't have to experience the pain from the full axillary surgery.
Another nurse materialized and I told her about the pain. She plunged a hypodermic into my IV; I could feel the dark cloud of clenched misery drift away as it took effect.
I wanted to double-check with her. "My lymph nodes were clear, right?"
"That's right," she said.
"Can my husband come in?"
"You're not quite ready but we'll get him soon."
A little later, she elevated the top part of my gurney so I could sit up, and Mark appeared.
I focused on his beautiful blue eyes as he sat down and asked how I felt.
"It was hurting a lot but they gave me something." I figured I'd triple-check. "So my lymph nodes were clear?"
His eyes got brighter. "They found cancer in the first node they looked at, honey."
"What! But the nurses said everything was fine." I could hear my voice rising higher and higher and my breath starting to come out in gasps. "You mean they went in and did the bigger surgery and took out a whole lot of the nodes?"
He nodded. By now I was sobbing. "That means it's metastasized."
His eyes were wet. "That's right, honey."
"I'll have to have chemotherapy."
"That's right, honey."
"Wait, are you sure? Did Dr. C say that? Did she tell you I have to have chemo?"
"Yes, she said there wasn't any choice now; you definitely will need chemo."
I couldn't believe this. Dr. C had been certain we wouldn't find anything in the lymph nodes and I was sure she was right. I'd even wondered if I should ask about skipping the surgery.
"Fuck," I choked out between sobs as Mark held my hand. "Fuck. Fuck. This isn't fair."
* * *
Earlier this hospital adventure had gone better than our previous outing (when the surgery got delayed for several hours).
In the nuclear medicine department, I was escorted to lie down on a narrow steel table; my 128-pound frame barely fit. "What if you have to get a 300-pound person on here?" I asked.
Eric, the friendly technician, used the kind of medical jargon I could understand. "Oh, the important parts fit on the table and the rest just kind of splooshes over the sides."
The scruffy but cute young nuclear med doctor warned me: "I have to tell you, a lot of patients find this procedure very uncomfortable. I'm going to inject the radioactive isotype in four places on your breast, at 12 o'clock, 3, 6 and 9. It's an acidic substance and many people feel a strong burning sensation. I get a lot of nasty letters afterwards saying 'You really hurt me.' Just tell me if it hurts and I can try to go more quickly or more slowly; whatever you need."
But actually it wasn't that bad. I did feel briefly as if I were being poked with hot needles, but it was over quickly.
Eric told me to spend 10 minutes gentling massaging my breast to spread the isotype. Too bad Mark was planted outside in the hallway; this would have been a perfect medical job for him to tackle.
Lying under a giant Geiger counter/camera, I watched a black-screened monitor slowly light up with the image of the nuclear substance, like seeing a Polaroid photo develop. There was a bright cluster of four dots where the doctor had injected the isotype, then two smaller concentrations that were my sentinel lymph nodes. There were smaller shimmering dots all over the breast. Eric gave me a lead shield to hold over the injection site so its brightness wouldn't overshadow the other areas; it was the size and shape of a CD, but weighed a couple of pounds.
Back in a curtained space in the pre-op area, me in a hospital gown on a gurney, Mark in an uncomfortable plastic chair, we settled in with our books and made bets on what time surgery would actually happen. Amazingly, the anesthesiologist showed up at 2:30, the scheduled time. This time I was awake as I was wheeled to the OR and for about half an hour in there while three nurses prepped the room and paged my surgeon. "You won't remember any of this," one of them told me -- but ha! proved her wrong.
When Dr. C arrived, I asked her about the Oncotype DX test. The night before, she'd told me that my score was 26 -- the high range of a grey area where it was uncertain whether chemotherapy would be beneficial or not. (Below 17 generally you don't need chemo; 18-30 is midrange, and above 31 you must have chemo.) She suggested coming to her office on Tuesday to discuss it in more detail.
That was all I remembered until waking up in the recovery room.
* * *
"Dr. C said you can stay here tonight or you can go home, whichever you want," Mark said. "I told her you'd probably want to go home."
"Oh yes, get me out of here, honey."
But I was so devastated by the news and so ensconced on my gurney and so groggy and intermittently being slammed by pain that I wasn't sure if I could get up. I fantasized that Mark could just wheel my gurney under the night skies to our house, as if I were royalty being carried in a sedan chair in a stately procession.
We could hear other patients waking up in the curtained areas all around us in the recovery room. The nurses were offering graham crackers and juice, which made me feel like we were preschoolers just rousing from naptime. One man, who must have been in his 60s, said querulously: "Don't you have any milk? I like milk with my cookies."
A nurse named Frank arrived to show us how to care for the drainage tube that ran from my underarm to a small plastic bulb. It would stay in place for 10 days, he said, and we'd need to empty and measure the accumulated fluid (mainly blood) several times a day. Mark, who hates blood, gamely did what needed to be done, and said he'd be able to manage it when we got home; I was still too groggy to grasp what was going on.
"Do you want to get dressed?" the nurse asked. I just couldn't fathom how I could lift my arms, let alone navigate all the complex tubing coming out of me.
"Can I just wear the hospital gown home?" I asked. He agreed -- score! It was the usual fetching, open-in-the-back number but I tried not to flash anyone as I navigated from the wheelchair to the car and from the car to our house.
At home, my pee came out bright blue, thanks to the blue dye they'd injected to help locate the sentinel nodes. I felt like a little kid who'd just learned to go potty for the first time. "Mark, come see! I have pretty pee!"
Wednesday, September 1, 2010
Thursday preview, Part 2: Another lumpectomy
Unlike many doctors, my surgeon, Dr. C, isn’t condescending at all. Au contraire, she speaks to me as if I have a medical degree or a doctorate in biology, spieling scientific lingo while I breathlessly scribble words I can’t spell, let alone define, like a hapless cub reporter.
So when she used cozy terms like “itty bitty” to describe the amount of cancerous cells left behind by the last surgery, I was instantly comforted, at least by my ability to grasp what she was saying.
“We’ll just re-excise to get out that teeny-weeny bit of breast tissue that’s near the skin,” she said. “We can do it at the same time as the sentinel lymph node biopsy.”
It was only several days later that I realized we were talking about a second lumpectomy.
The first one wasn’t bad. I never even needed pain pills; ice was good enough for the fairly minimal pain. Sure, the side of my breast now has a three-inch long shallow trough, the same size as if I’d pressed the length of my index finger against a sand castle. But I have ample breast tissue – you might call it a chubby-wubby amount. So surely I could spare an itty-bitty bit more.
But being near the skin isn’t the same as being on top of the skin. The plan is for a second incision with the attendant risk for infection, a new wound to heal, etc.
It’s not the worst thing in the world by far. I’ve already met several women who had to have a mastectomy instead of a second lumpectomy because they just didn’t have enough breast tissue to keep digging it out.
But it means that Thursday’s excursion to the Alta Bates OR will include at least two surgical procedures – three if they find cancer in the sentinel lymph nodes and have to take out the axillary lymph nodes.
So when she used cozy terms like “itty bitty” to describe the amount of cancerous cells left behind by the last surgery, I was instantly comforted, at least by my ability to grasp what she was saying.
“We’ll just re-excise to get out that teeny-weeny bit of breast tissue that’s near the skin,” she said. “We can do it at the same time as the sentinel lymph node biopsy.”
It was only several days later that I realized we were talking about a second lumpectomy.
The first one wasn’t bad. I never even needed pain pills; ice was good enough for the fairly minimal pain. Sure, the side of my breast now has a three-inch long shallow trough, the same size as if I’d pressed the length of my index finger against a sand castle. But I have ample breast tissue – you might call it a chubby-wubby amount. So surely I could spare an itty-bitty bit more.
But being near the skin isn’t the same as being on top of the skin. The plan is for a second incision with the attendant risk for infection, a new wound to heal, etc.
It’s not the worst thing in the world by far. I’ve already met several women who had to have a mastectomy instead of a second lumpectomy because they just didn’t have enough breast tissue to keep digging it out.
But it means that Thursday’s excursion to the Alta Bates OR will include at least two surgical procedures – three if they find cancer in the sentinel lymph nodes and have to take out the axillary lymph nodes.
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