Quiet times over here in Chemoland.
My oncologist gave me a little talking-to about the need to embrace the lovely pharmaceuticals so readily available to me these days.
“You’re a cancer patient; you really shouldn’t be having qualms about pain medication,” she said, while strongly recommending that I take Percocet at bedtime for the two nights after chemo. “It’s much easier to control pain by getting to it before it starts.”
And it turns out all those years of med school paid off: She was right.
Last week (Taxol #2), I downed the meds as she suggested. No bone pains! (Okay, some minor aches, but well within the range of normal.)
Yesterday was Taxol #3. Sadly, my IV Benedryl euphoria is already a lot less awesome than the first time. The fluorescent lights above my barcalounger do a nice little strobe number for a couple of minutes when it kicks in and my IQ drops 30 or so points, but that’s about it for jollies.
And by evening, the steroids mania arrived while the Benedryl floaty feeling was still lingering. The overall effect is how I imagine those alcohol-laced energy drinks make frat boys feel: Like a hyper drunk.
That still sounds more fun than how I feel: Wired but blah, boring, bored. Like a Jonas brother who’s just downed five macchiattos.
And not wired in a good way, like let’s run around the house Christmas-fying and tidying everything (Mark begs to disagree with that definition of “wired in a good way”), but wired like, I’m exhausted but four hours after going to sleep, sinister forces compelled my eyelids to pop open and my brain to launch into full alert.
This treatment puts me just past the half-way mark for chemo. Eleven weeks down; nine to go. Then it'll be radiation time.
Saturday, December 18, 2010
Tuesday, December 7, 2010
Big-time bummer
At 1 am Sunday morning, I woke to the sound of whimpering.
It was coming from me.
The long bones in my legs ached as they’ve never ached before. They felt as if I’d run a marathon barefoot on concrete or as if a cruel giant had wrung them out like wet laundry. I spent the rest of the night unable to ignore the excruciating throbbing. By morning my arm bones were aching as well. I called the cancer center first thing Sunday morning.
The on-call oncologist thought it might be a reaction to Neulasta, the post-chemo drug that stimulates bone marrow to make more white blood cells. It often causes bone pain – essentially intense growing pains. He suggested taking a Claritin which sometimes can block Neulasta’s effects. An hour later I called him back, barely able to speak through the pain.
“You need to take a Percocet or Vicodin,” he said. I had plenty left over from my surgery and I gratefully complied. Within 10 minutes, the pain mercifully drifted away. You can take Percocets every six hours. At precisely the five-hour mark, I could feel the miracle end and the pain start up again.
By Monday morning I was still in pain, but wanted to stop the Percocets so I wouldn’t be in a zombie fog. I needed to drive to an acupuncture appointment, and I wanted to go back to work on Tuesday as planned. My oncologist’s nurse told me to try ibuprofen. It lessened the pain enough for me to function, and after getting a decent night’s sleep on Monday, I felt more like my regular self and the aching had subsided.
Despite my couple of hours of Benadryl jollies, Taxol so far has turned out to be a big-time bummer.
A few hours after chemo on Friday, I was still loopy from the Benadryl, staggering and slurring, when suddenly the IV steroids kicked in, and I began speed-talking, emitting staccato bursts of information at Mark, who was bemused. By bedtime, the fun, floaty feeling from Benadryl had worn off but the steroids had me wired, even though I was desperate for sleep.
That night, I got just four hours sleep, which left me feeling wasted all day on Saturday. Saturday night, I expected to catch up, and instead got slammed with the bone pain after yup, just another four hours.
Today a friend e-mailed: “Did you hear the news about Elizabeth Edwards?”
I hadn’t heard any updates on her in a while and desperately hoped the news was that she’d had a spontaneous remission. Of course that wasn’t so.
Elizabeth Edwards struck me as a woman with unusual amounts of both grit and grace. Her final public statement, issued on Monday just a day before her death, exemplifies that:
It was coming from me.
The long bones in my legs ached as they’ve never ached before. They felt as if I’d run a marathon barefoot on concrete or as if a cruel giant had wrung them out like wet laundry. I spent the rest of the night unable to ignore the excruciating throbbing. By morning my arm bones were aching as well. I called the cancer center first thing Sunday morning.
The on-call oncologist thought it might be a reaction to Neulasta, the post-chemo drug that stimulates bone marrow to make more white blood cells. It often causes bone pain – essentially intense growing pains. He suggested taking a Claritin which sometimes can block Neulasta’s effects. An hour later I called him back, barely able to speak through the pain.
“You need to take a Percocet or Vicodin,” he said. I had plenty left over from my surgery and I gratefully complied. Within 10 minutes, the pain mercifully drifted away. You can take Percocets every six hours. At precisely the five-hour mark, I could feel the miracle end and the pain start up again.
By Monday morning I was still in pain, but wanted to stop the Percocets so I wouldn’t be in a zombie fog. I needed to drive to an acupuncture appointment, and I wanted to go back to work on Tuesday as planned. My oncologist’s nurse told me to try ibuprofen. It lessened the pain enough for me to function, and after getting a decent night’s sleep on Monday, I felt more like my regular self and the aching had subsided.
Despite my couple of hours of Benadryl jollies, Taxol so far has turned out to be a big-time bummer.
A few hours after chemo on Friday, I was still loopy from the Benadryl, staggering and slurring, when suddenly the IV steroids kicked in, and I began speed-talking, emitting staccato bursts of information at Mark, who was bemused. By bedtime, the fun, floaty feeling from Benadryl had worn off but the steroids had me wired, even though I was desperate for sleep.
That night, I got just four hours sleep, which left me feeling wasted all day on Saturday. Saturday night, I expected to catch up, and instead got slammed with the bone pain after yup, just another four hours.
Today a friend e-mailed: “Did you hear the news about Elizabeth Edwards?”
I hadn’t heard any updates on her in a while and desperately hoped the news was that she’d had a spontaneous remission. Of course that wasn’t so.
Elizabeth Edwards struck me as a woman with unusual amounts of both grit and grace. Her final public statement, issued on Monday just a day before her death, exemplifies that:
You all know that I have been sustained throughout my life by three saving graces -- my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human.
But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn't possible to put into words the love and gratitude I feel towards everyone who has and continues to support and inspire me every day. To you I simply say: you know.
Saturday, December 4, 2010
Taxol No. 1: "Better living through chemistry"
At chemo on Friday, my roomie, her husband, my friend Jessica and the nutritionist were all engaged in a spirited discussion about Ethiopian culture and lifestyle, when the Benadryl in my IV hit my system.
I realized I had an important point to contribute to the high-level discourse.
“Hey, guys,” I interrupted. “Hey, I feel like I’m floating. It’s like I’m on the ceiling looking down at all of you.” I groped for the right phrase to capture the experience and was proud when I concocted the perfect original description. “It’s, it’s like far out.”
They all turned to me politely. Bernadette, the nutritionist, who has years of experience with chemo patients, was the first to react. She rolled her eyes and a huge smile spread across her face.
“Better living through chemistry, eh, Carolyn?” she said. “Just wait until tonight when the steroids kick in. Then you’ll be hyper.”
Finally, finally after all these weeks of drugs that cause exhaustion, nausea and
various aches and pains, finally, I’ve scored a decent drug. Something downright, dare I say, recreational.
Intravenously administered Benadryl, I think I love you.
People keep asking, “Why don’t you get yourself some medical marijuana?”
Clearly I’d qualify, since you can get a prescription for it with a hangnail. But I gave up pot after freshman year because it triggered too much paranoia. Faithful readers of this blog know that I’m already doing a perfectly fine job becoming a paranoid wreck without any pharmaceutical intervention.
Actually I have done really well with not dabbling in paranoia over the past couple of weeks. I’ve stopped Googling medical sites, and I didn’t even have to have Mark install child-monitoring software on my laptop.
Still, there was a paranoia trigger at chemo.
An hour into my treatment, suddenly a nurse bolted past our door, soon followed by three or four other nurses, all running flat out. “Something’s happening,” said Vivian, my roommate, looking scared. “I’ve never seen that before.” A loudspeaker crackled. “Code Indigo in the treatment center,” a voice intoned. What, they think cancer patients can't translate “indigo” into “blue”? From my years of “ER” viewing, I knew Code Blue means cardiac arrest. Vivian and I looked at each other; we were both close to tears. I could tell we were thinking the same thing: This was a sobering reminder that a lot can go wrong when you pump poison into someone’s veins.
I’m now on to the second half of chemo, getting a drug called Taxol, every week for 12 weeks. It’s derived from the bark of the Pacific Yew. A cancer-support group buddy dropped off a branch from her yew tree “to propitiate the spirits of the forest who gave us this drug” as she poetically put it. Taxol’s main side effect is neuropathy, and to forestall that I’m getting weekly acupuncture and have a whole new set of supplements to choke down. Taxol also can cause severe allergic reactions, hence the IV Benadryl as well as the steroid, Decatron.
Over Thanksgiving, I allowed myself to take a little break from the Cancerverse, indulging in a diet soda now and then, being less scrupulous about the gallons of water I’m supposed to drink, skipping some of my vitamins and generally just trying to feel more normal. When the holiday was over, I didn’t get back on track.
Bernadette took one look at my lab results and called me out.
“You’re not drinking enough water,” she said right away. “Look how your uric acid levels are elevated.”
A girl can’t get away with anything around here.
I realized I had an important point to contribute to the high-level discourse.
“Hey, guys,” I interrupted. “Hey, I feel like I’m floating. It’s like I’m on the ceiling looking down at all of you.” I groped for the right phrase to capture the experience and was proud when I concocted the perfect original description. “It’s, it’s like far out.”
They all turned to me politely. Bernadette, the nutritionist, who has years of experience with chemo patients, was the first to react. She rolled her eyes and a huge smile spread across her face.
“Better living through chemistry, eh, Carolyn?” she said. “Just wait until tonight when the steroids kick in. Then you’ll be hyper.”
Finally, finally after all these weeks of drugs that cause exhaustion, nausea and
various aches and pains, finally, I’ve scored a decent drug. Something downright, dare I say, recreational.
Intravenously administered Benadryl, I think I love you.
People keep asking, “Why don’t you get yourself some medical marijuana?”
Clearly I’d qualify, since you can get a prescription for it with a hangnail. But I gave up pot after freshman year because it triggered too much paranoia. Faithful readers of this blog know that I’m already doing a perfectly fine job becoming a paranoid wreck without any pharmaceutical intervention.
Actually I have done really well with not dabbling in paranoia over the past couple of weeks. I’ve stopped Googling medical sites, and I didn’t even have to have Mark install child-monitoring software on my laptop.
Still, there was a paranoia trigger at chemo.
An hour into my treatment, suddenly a nurse bolted past our door, soon followed by three or four other nurses, all running flat out. “Something’s happening,” said Vivian, my roommate, looking scared. “I’ve never seen that before.” A loudspeaker crackled. “Code Indigo in the treatment center,” a voice intoned. What, they think cancer patients can't translate “indigo” into “blue”? From my years of “ER” viewing, I knew Code Blue means cardiac arrest. Vivian and I looked at each other; we were both close to tears. I could tell we were thinking the same thing: This was a sobering reminder that a lot can go wrong when you pump poison into someone’s veins.
I’m now on to the second half of chemo, getting a drug called Taxol, every week for 12 weeks. It’s derived from the bark of the Pacific Yew. A cancer-support group buddy dropped off a branch from her yew tree “to propitiate the spirits of the forest who gave us this drug” as she poetically put it. Taxol’s main side effect is neuropathy, and to forestall that I’m getting weekly acupuncture and have a whole new set of supplements to choke down. Taxol also can cause severe allergic reactions, hence the IV Benadryl as well as the steroid, Decatron.
Over Thanksgiving, I allowed myself to take a little break from the Cancerverse, indulging in a diet soda now and then, being less scrupulous about the gallons of water I’m supposed to drink, skipping some of my vitamins and generally just trying to feel more normal. When the holiday was over, I didn’t get back on track.
Bernadette took one look at my lab results and called me out.
“You’re not drinking enough water,” she said right away. “Look how your uric acid levels are elevated.”
A girl can’t get away with anything around here.
Thursday, November 18, 2010
Chemo No. 4: "The last of the worst"
“Um, I don’t want to alarm you,” I said to my friend Jan as we left the pharmacy yesterday, “but do you have a bag I can hold just to have handy on the ride back home? I’d hate to have anything happen to your nice car.”
She understood exactly what I meant without my spelling out the icky details.
Yesterday was my final session with the sledgehammer chemo drugs Adriamycin and Cytoxan – “the last of the worst,” as Mark put it. It was also my nastiest bout of nausea yet.
Both drugs have evocative histories – Adriamycin, belying its ugly side effects, is named after the beautiful Adriatic Sea. It was derived from microbes found in the soil outside an 13th century Italian castle, Castel del Monte.
Cytoxan is a derivative of the mustard gas used to grotesque effect in World War I. Every time I get it, I can’t help thinking of “Dulce et Decorum Est” – “Gas! Gas! Quick, boys! — an ecstasy of fumbling.” Mercifully, I don’t have the full terrors of what comes next committed to memory, but a single reading of the poem makes you think you’re insane to voluntarily have that stuff injected in your veins.
Both drugs have been major cancer-fighting agents for more than half a century. That underscores that in fact some cancer treatments haven’t changed significantly – what has changed is the calibration of the doses, and (very luckily for me) the development of much stronger and more effective anti-nausea drugs.
Despite those drugs, I spent a very uncomfortable afternoon and evening (although thankfully I never needed that bag I kept handy), but then I went to bed, slept all night and woke up with just my standard day-after mild queasiness. Somehow it felt appropriate for my final AC that I got the badge of honor of the symptoms everyone most associates with chemo.
And I am relieved that I’ve made it through the worst part of chemo.
Part Two will consist of 12 weekly sessions with Taxol, which doesn’t cause the same gastro-intestinal problems as AC. It does cause exhaustion, something I’m already feeling plenty of from the AC. By 6 pm every day, I feel as if a giant hand is pressing me down on the couch and my brain has turned into a bowl of mush.
Taxol’s biggest side effect is neuropathy – tingling, numbness and sometimes pain in the fingers and toes. Michelle, my nice chemo nurse yesterday, said that virtually all Taxol patients experience some neuropathy. “You’ll notice you’ll have trouble buttoning your clothes and you’ll start dropping things,” she said. “Your feet might feel like you’re walking on coals.”
But neuropathy is usually not permanent for people like me who get reduced doses over 12 weeks, she said. If the symptoms get too severe, my oncologist will temporarily suspend treatment until they subside. The worse the neuropathy gets, the higher the chance that it will stick around. One of the cancer center doctors is an acupuncturist and I’ve started treatments with her to try to lessen its impact. They are pretty good there about “integrative medicine” – incorporating Eastern as well as Western treatments.
When I saw my own oncologist Dr. D yesterday, I told her how anxious I’d been feeling about what Dr. Hope conveyed (BTW, Dr. Hope was compassionate in her presentation, she had a perfectly fine bedside manner; it’s just that the information she had to share was something that no amount of kindness could soften).
Dr. D said simply: “Well, you’re young and we’re doing everything we can.”
I am starting to emerge from my two weeks in Freak Out City. For one thing, I just can’t live with that heightened level of fear. For another, the things people keep telling me are slowly sinking into my mush-like brain.
As someone who has a hard time living with not-knowing, I really took to heart this beautiful quote from Rainer Maria Rilke's "Letters to a Young Poet" that Lori from C Squad posted on yesterday's comments:
My brother-in-law Richard, who recently emerged cancer-free from his own grueling chemo treatments, had these words of wisdom about the statistics I keep harping on:
So screw 'em indeed. I’m me, not a statistic.
She understood exactly what I meant without my spelling out the icky details.
Yesterday was my final session with the sledgehammer chemo drugs Adriamycin and Cytoxan – “the last of the worst,” as Mark put it. It was also my nastiest bout of nausea yet.
Both drugs have evocative histories – Adriamycin, belying its ugly side effects, is named after the beautiful Adriatic Sea. It was derived from microbes found in the soil outside an 13th century Italian castle, Castel del Monte.
Cytoxan is a derivative of the mustard gas used to grotesque effect in World War I. Every time I get it, I can’t help thinking of “Dulce et Decorum Est” – “Gas! Gas! Quick, boys! — an ecstasy of fumbling.” Mercifully, I don’t have the full terrors of what comes next committed to memory, but a single reading of the poem makes you think you’re insane to voluntarily have that stuff injected in your veins.
Both drugs have been major cancer-fighting agents for more than half a century. That underscores that in fact some cancer treatments haven’t changed significantly – what has changed is the calibration of the doses, and (very luckily for me) the development of much stronger and more effective anti-nausea drugs.
Despite those drugs, I spent a very uncomfortable afternoon and evening (although thankfully I never needed that bag I kept handy), but then I went to bed, slept all night and woke up with just my standard day-after mild queasiness. Somehow it felt appropriate for my final AC that I got the badge of honor of the symptoms everyone most associates with chemo.
And I am relieved that I’ve made it through the worst part of chemo.
Part Two will consist of 12 weekly sessions with Taxol, which doesn’t cause the same gastro-intestinal problems as AC. It does cause exhaustion, something I’m already feeling plenty of from the AC. By 6 pm every day, I feel as if a giant hand is pressing me down on the couch and my brain has turned into a bowl of mush.
Taxol’s biggest side effect is neuropathy – tingling, numbness and sometimes pain in the fingers and toes. Michelle, my nice chemo nurse yesterday, said that virtually all Taxol patients experience some neuropathy. “You’ll notice you’ll have trouble buttoning your clothes and you’ll start dropping things,” she said. “Your feet might feel like you’re walking on coals.”
But neuropathy is usually not permanent for people like me who get reduced doses over 12 weeks, she said. If the symptoms get too severe, my oncologist will temporarily suspend treatment until they subside. The worse the neuropathy gets, the higher the chance that it will stick around. One of the cancer center doctors is an acupuncturist and I’ve started treatments with her to try to lessen its impact. They are pretty good there about “integrative medicine” – incorporating Eastern as well as Western treatments.
When I saw my own oncologist Dr. D yesterday, I told her how anxious I’d been feeling about what Dr. Hope conveyed (BTW, Dr. Hope was compassionate in her presentation, she had a perfectly fine bedside manner; it’s just that the information she had to share was something that no amount of kindness could soften).
Dr. D said simply: “Well, you’re young and we’re doing everything we can.”
I am starting to emerge from my two weeks in Freak Out City. For one thing, I just can’t live with that heightened level of fear. For another, the things people keep telling me are slowly sinking into my mush-like brain.
As someone who has a hard time living with not-knowing, I really took to heart this beautiful quote from Rainer Maria Rilke's "Letters to a Young Poet" that Lori from C Squad posted on yesterday's comments:
Have patience with everything unresolved in your heart and try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future,you will gradually, without even noticing it, live your way into the answer.
My brother-in-law Richard, who recently emerged cancer-free from his own grueling chemo treatments, had these words of wisdom about the statistics I keep harping on:
I feel about cancer stats the way Mike Ditka summed up his interest in the past -- "it's for cowards and losers." Though I abhor his neanderthal politics and sell anything antics, Coach D. was right on this point. Forget the charts and probabilities. You are doing great. You have taken some pretty heavy blows and you're still riding your bike and having positive experiences every day. I can't say why an information junkie like me never even was tempted to look up my odds, but I'm glad I didn't. I always doubt actors or writers who say they never read a word of their reviews, but some must be telling the truth. It's how you respond and your body's strength that will matter, not the general population of women who share this burden.
It is really good that you have the blog to work through your fears, but screw the statistics.
(And Mark and I used to memorize all the ballplayers batting averages as kids). But like a slot machine, each at bat, each pull of the lever is an independent event, just like each cancer.
So screw 'em indeed. I’m me, not a statistic.
Tuesday, November 16, 2010
Breaking radio silence
It ain't funny anymore.
I haven't been able to write a word here since I got the second opinion from the great Dr. Hope (that actually and ironically is her real (first) name; if I had crafted a pseudonym, I would have gone with something more apropos, like Dr. Doom).
It was one thing to spin out droll anecdotes about my medical escapades interspersed with reportorial summaries of what I was learning about cancer treatments. That was back in the olden days, two weeks ago, when this still felt like a grand adventure, one of many stories from my long life I’d be telling my grandchildren in my old age.
Dr. UnHope left me with the distinct impression that I might not make it to old age.
Sure, now I don’t have to worry about Social Security going bust before I can collect it, but that’s about the only upside I can conjure up.
Even when she tried to be comforting, it backfired.
What she said: “A few years ago, your kind of cancer would have been a death sentence, but now we have so many more treatment options available.”
What I heard: YOUR CANCER = DEATH SENTENCE
All along, I’ve basically assumed I would be fine. There were some low points, such as when I found out it had spread to my lymph nodes, but mainly I figured my natural robust heartiness could overcome any challenges. Of course, lately I’ve been realizing that cancer is not an outside, alien invader, but my very own cells – my robust, hearty cells – gone crazy. Maybe my own good health means my cancer is extra potent?
Okay, I know that that line of thinking – and dwelling on the “death sentence” sentence and frantically Googling the mortality rates for Stage III breast cancer (I said I wouldn’t do that, but I lied) – is at best, extremely unproductive. At worst, I will drive myself insane with terror.
Nothing in my situation has changed. There haven’t been any new tests that found that the cancer had spread further. It’s just that I’ve been presented with a new, and, yes, fairly grim, interpretation of the existing data.
Mark pointed out: “You’ve made it through three treatments of the hard chemo and you’re doing fine. Maybe it would be best to focus on that.”
I know he’s right. So is my buddy who told me to ignore the statistics. I’m just not quite there yet.
I haven't been able to write a word here since I got the second opinion from the great Dr. Hope (that actually and ironically is her real (first) name; if I had crafted a pseudonym, I would have gone with something more apropos, like Dr. Doom).
It was one thing to spin out droll anecdotes about my medical escapades interspersed with reportorial summaries of what I was learning about cancer treatments. That was back in the olden days, two weeks ago, when this still felt like a grand adventure, one of many stories from my long life I’d be telling my grandchildren in my old age.
Dr. UnHope left me with the distinct impression that I might not make it to old age.
Sure, now I don’t have to worry about Social Security going bust before I can collect it, but that’s about the only upside I can conjure up.
Even when she tried to be comforting, it backfired.
What she said: “A few years ago, your kind of cancer would have been a death sentence, but now we have so many more treatment options available.”
What I heard: YOUR CANCER = DEATH SENTENCE
All along, I’ve basically assumed I would be fine. There were some low points, such as when I found out it had spread to my lymph nodes, but mainly I figured my natural robust heartiness could overcome any challenges. Of course, lately I’ve been realizing that cancer is not an outside, alien invader, but my very own cells – my robust, hearty cells – gone crazy. Maybe my own good health means my cancer is extra potent?
Okay, I know that that line of thinking – and dwelling on the “death sentence” sentence and frantically Googling the mortality rates for Stage III breast cancer (I said I wouldn’t do that, but I lied) – is at best, extremely unproductive. At worst, I will drive myself insane with terror.
Nothing in my situation has changed. There haven’t been any new tests that found that the cancer had spread further. It’s just that I’ve been presented with a new, and, yes, fairly grim, interpretation of the existing data.
Mark pointed out: “You’ve made it through three treatments of the hard chemo and you’re doing fine. Maybe it would be best to focus on that.”
I know he’s right. So is my buddy who told me to ignore the statistics. I’m just not quite there yet.
Wednesday, November 3, 2010
Another day, another chemo: Round No. 3
For today's chemo, we got assigned to the overflow room in the basement -- a big space with six recliners spaced around the walls, a small table with magazines in the middle, and no cell phone reception. It wasn't well set up for support people; Ben perched uncomfortably on a little stool next to me, but it was loverly having a nice long date with him. He and I are losing our twin look because one of us is getting male pattern baldness and has a weird comb-over look going on -- and it's not the male.
The session went fine; not much to report, except that I am now three-quarters done with the hardest part of chemo, Adriamycin and Cytoxan. Here's my patient's-eye view of the HazMat-approved administration of Adriamycin:
The big news is that yesterday, after weeks of pleading, pulling strings and making dozens of phone calls to have my many test results faxed, I met with one of the leading breast cancer doctors in the Bay Area for a second opinion on my treatment. (She had exchanged e-mails with me before I started chemo, concurring on my initial treatment plan of dose-dense AC.)
Dr. Hope is clearly brilliant and has decades of experience. She was also warm and thoughtful; she'd spent considerable time reading through my five-inch thick medical file and she spent almost an hour talking to me.
So much for the good news.
Dr. Hope was definitive that my cancer is Stage III and very aggressive.
She based that on both the number of nodes involved and also on the way it had managed to break down tissue barriers and spread into surrounding flesh once it was in the nodes.
She had several suggestions for making my treatment even more aggressive:
>Once I finish four rounds of AC chemo, I was slated to get four sessions of Taxol every other week. She recommends 12 weekly sessions of Taxol instead (at lower dosages, although the total amount will be higher). Several studies have shown this improves survival rates, and the lower dosages reduce side effects. Taxol's primary side effect is neuropathy, tingling and numbness in fingers and toes that sometimes does not entirely go away, so I'm definitely gung-ho about reducing that. But this will add another month to my chemo regime.
>When breast cancer metastasizes, it most commonly goes to the bones. A class of drugs called Bisphosphonates, which are used to treat osteoporosis, may help prevent bone metastasis. So that would be another addition to my regime. This may mean keeping my not-so-beloved port in for two more years.
>Auntie Flo has been continuing to show up on schedule every month despite all that poison flowing through my veins, which usually induces the old biddy to pack her bags and hit the road. Dr. Hope wryly said it looks like my body really, really doesn't want to enter menopause. She really, really wants me to stop menstruating stat, and so she wants me on monthly injections of Zolodex to accomplish that. That's so I can get started sooner on aromatase inhibitors, a powerful class of hormone-blocking drugs that only work on post-menopausal women.
>She feels my greatest risk for metastatic recurrance will last for 10 to 15 years and thus so should my treatments. Most patients get five years on the aromatase inhibitors; so now I'm looking at double or triple that. I've read that many breast cancer patients are noncompliant about taking them (it's a daily pill) because they hate the side effects, but I'm not going to go into that now. She also pointed out that five years from now there will be lots of new research results and so there may be other treatment/prevention options that we'd explore.
Today when I met with my own oncologist, Dr. D, she concurred with everything recommended by Dr. Hope, who is clearly a goddess in the field. Dr. D herself is no slouch in the brilliance department and also has been quite kind to me and generous in spending lots of time going over everything I bring up.
There is no question in my mind that I'm going to do exactly what Dr. Hope suggested. If she said I needed to hang upside down for an hour a day, learn kick-boxing or move to Utah, I would just do it. (Those all actually might be slightly more pleasant options than what she did suggest, with the possible exception of Utah.) The stakes are too high.
Perhaps you've noticed: not such a funny post today. I could barely muster the one joke about Auntie Flo (a quaint term I never have used previously).
As soon as I got home last night, I hit the Internet and it wasn't for election results. In the same way my tongue compulsively keeps probing a sore spot in my mouth, I feel compelled to look up survival rates every time I get told I'm at a different stage. But after I looked it up and had a few minutes of mild freak-out, I decided to drop that line of thinking.
Here are some words of wisdom from a cancer mentor who dealt with this a few years ago and has been a wonderful source of support and strength:
But may I say something about all these statistics? They can drive you crazy, but remember: those statistics aren't YOU. It's kind of numbers game, but these numbers are pretty general. I had a 20-25 percent chance of recurrence but I tried not to get too worked up about it because those numbers weren't necessarily me. You're in good shape, you have good health care, you eat well, you're otherwise healthy etc. It sounds trite, but ultimately the only statistic that really matters is 0 and 100.
So I lied before when I said Dr. Hope's being nice and smart was the end of the good news.
Actually, I recognize that I am lucky that so much research has been devoted to breast cancer so that there are more treatment options all the time. And I have a lengthy list of things to be grateful for: Mark, Ben and my fabulous friends -- and thank you for all the incredibly loving and supportive blog comments while I'm at it! -- really good medical care, good insurance, manageable side-effects from treatment, supportive employers. And I fully recognize that lots of cancer patients -- certainly anyone with Stage IV -- would trade places with me in a heartbeat.
I'm not excited to spend the next 15 years with a sword of Damocles hanging over my head; I'm not happy about subjecting my body to still more toxic treatments and their potential side effects. But I'm not going to focus on that. My attention is on doing everything possible in the here and now to combat this.
Tuesday, October 26, 2010
Deciduous me
As an East Coast transplant, I miss autumn.
One year, Mark and I went to Montreal and Quebec in October and feasted our eyes on the glorious symphonies of fiery reds, deeper russets, golds, persimmons, bronzes - it was like the Berkeley Bowl fruit aisle writ large across the sky.
This year, I'm celebrating in a simpler way: I have become deciduous.
What I'm shedding is just basic brown but there is plenty of it showering down like crisp fall leaves.
For the past four days, whenever I touch my head, my hand comes away with dozens of hairs adhered to it through static electricity. If I rake my fingers over my head, I end up with fistfuls of hair. My clothes look as if I've been romping with a very friendly cocker spaniel. Don't get me started on the couch, the tub and my pillow.
It didn't take long to figure out how messy this was gonna be.
Just like that, I gained the will to chop it off, although not a full Monty buzz cut.
My regular lady at the cut-rate salon did a nice job with a sort of Joan Baez in her mature days look and assured me that it would grow back curly.
Ben, my son, chauffeured me.
"Hmm, now we have the same haircut," he said when he picked me up.
And it's true! I like looking like a twin to my boy.
Now the sprinkling has slowed down, but if -- or rather when -- it picks up again, eventually I'll look like a twin to Mark, who already has expressed his pre-solidarity with my condition by sporting the chrome-dome look for some years now.
+++
Also did some pre-emptive wig shopping at a hospital-sponsored free place - one wig per cancer patient.
Here are the array of choices. Wanna guess which one I picked?
I decided to be a redhead, in keeping with my autumnal theme. (Second row)
One year, Mark and I went to Montreal and Quebec in October and feasted our eyes on the glorious symphonies of fiery reds, deeper russets, golds, persimmons, bronzes - it was like the Berkeley Bowl fruit aisle writ large across the sky.
This year, I'm celebrating in a simpler way: I have become deciduous.
What I'm shedding is just basic brown but there is plenty of it showering down like crisp fall leaves.
For the past four days, whenever I touch my head, my hand comes away with dozens of hairs adhered to it through static electricity. If I rake my fingers over my head, I end up with fistfuls of hair. My clothes look as if I've been romping with a very friendly cocker spaniel. Don't get me started on the couch, the tub and my pillow.
It didn't take long to figure out how messy this was gonna be.
Just like that, I gained the will to chop it off, although not a full Monty buzz cut.
My regular lady at the cut-rate salon did a nice job with a sort of Joan Baez in her mature days look and assured me that it would grow back curly.
Ben, my son, chauffeured me.
"Hmm, now we have the same haircut," he said when he picked me up.
And it's true! I like looking like a twin to my boy.
Now the sprinkling has slowed down, but if -- or rather when -- it picks up again, eventually I'll look like a twin to Mark, who already has expressed his pre-solidarity with my condition by sporting the chrome-dome look for some years now.
+++
Also did some pre-emptive wig shopping at a hospital-sponsored free place - one wig per cancer patient.
Here are the array of choices. Wanna guess which one I picked?
I decided to be a redhead, in keeping with my autumnal theme. (Second row)
Friday, October 22, 2010
Me and my hair: Never can say goodbye
Oh, my hair, my hair. Scraggly, limp, lank, stubborn. Even on my wedding day, after 60 minutes with the hot rollers and the curling iron and the can of hairspray and the hordes of hidden bobby pins, it collapsed like a bad soufflé on the five-minute trip from salon to venue, so the only ones who got to see it in all its poufy glory were me and the stylist.
My hair has always been like a no-goodnik boyfriend. You know you should give him the heave-ho, but when you finally make up your mind, he figures out which way the wind is blowing and gets all sweet and solicitous and you remember what you saw in him in the first place and just don’t have the heart to go through with it.
Whenever I start thinking it’s time for a drastic haircut, it manages to pull itself together and transform into little waves and tendrils that curl adorably. “Why can’t you be like that all the time?” I scold it. “We could have such a good relationship if you would just always act exactly the way I want you to act.”
That line of reasoning never worked on boyfriends either.
Now that its days are numbered, my hair has perked up remarkably. It practically does tricks every morning to prove how cute and cooperative it will be if I just let it hang in there. And I’d be glad to comply, since I really don’t think I’m gonna rock the bald look, but it’s not up to me.
Adriamycin causes hair loss 14 to 21 days after treatment. Cytoxan, my other current chemo drug, causes hair thinning. Some people’s hair doesn’t completely fall out on those two drugs, but they get a patchy look. Taxol, the chemo drug I’ll be getting in December and January, causes hair to fall out completely, sometimes overnight.
I’ll be bald for Halloween.
It doesn’t ring the same chimes as "I’ll be home for Christmas," but it does open up a world of costume ideas: Capt. Picard, Dr. Evil, Mr. Clean, Uncle Fester.
Hmm, all men. Who are the famous bald chicks?
Sigourney Weaver in “Aliens” and Natalie Portman in “V is for Vendetta” – but they didn’t have any distinguishing characteristics other than their bare pates that would sell a costume.
I’m now on day 15 after my first infusion, and so far I haven’t felt the tingling scalp that’s supposed to precede hair loss. But I want to be prepared with a wig for when I need to pass as normal, especially when I have to interview strangers for work or hit the grocery store without getting pitying looks. Luckily it’s almost winter, when I wear a hat every day anyway.
This chemo round induced the same malaise as the last time. The night after treatment I woke up nauseous at 3 a.m. and never got back to sleep but eventually the drugs quelled the nausea. Today I still feel under the weather, but am getting antsy that I need to venture out wig shopping.
Me and my hair. Truth to tell, I haven’t really tried that hard. We’ve stayed trapped in the ’70s for lo these many decades now. My high school graduation photo has the exact same long limp locks look as my Facebook profile pix. How sad is that?
So this is a chance to explore new turf. Goldilocks, Rapunzel, Little Orphan Annie. Angelina or Jennifer. Punk, professional, artiste, ingénue, sexy siren – it’s time to meet the new me.
Wednesday, October 20, 2010
Chemo Round #2
I've always prided myself on being a quick study. So, after one session, I felt that I'd grasped the essentials of chemo and was ready to move on.
It's just how I felt when I first got my period. Okay, I'm initiated and now I know "what it means to be a woman" in the immortal words of the Kotex pamphlet the school nurse handed out. So I'm done. When the next month rolled around, the repeat performance came as an unpleasant surprise.
"What, again?" l whined. "Are you kidding?" The vista of all the endless reruns for the rest of my life seemed impossibly dreary. (The pamphlet had neglected to mention the concept of menopause, although, at age 13, that was decades off anyway.)
That same sinking feeling descended last night when I realized that, yes, we'd be returning to the cancer center today for Round 2.
Around noon, Mark chirped, "It's time to go, honey."
I hissed at him and went slinking off.
He finally tracked me down in the closet where I was sulking and hauled me out by the scruff of my neck as I yowled pitifully.
Why, yes, I am a crazy cat lady. How did you know?
We dragged ourselves into the cancer center 30 minutes late and proceeded to hurry up and wait.
The blood draw got complicated. The needle went into my port fine, but the blood wouldn't come out. After deep breathing and waving my arms didn't work, they proceeded to have me lie on my back, then my side, along with more deep breathing and arm waves. Just as they were getting ready to break out a drug to dislodge whatever was obstructing the tube inside me, it finally started to flow.
To block out the medical travails, I tried to immerse myself in a magazine, but I'd made the mistake of picking one of the glossy periodicals just for cancer patients that lie around the waiting room. Essentially they're beautifully printed catalogs of pharmaceutical company ads interspersed with cheery tips about eating brocolli and blueberries. My eyes lit on a two-page spread about Neulasta, the shot I get 24 hours after each chemo session. They'd thoughtfully listed the side effects in a normal type size, so I was able to ponder the ramifications of ruptured spleen ("A ruptured spleen can cause death," the ad helpfully said) and acute respiratory distress.
Oh, and they make Neulasta out of E coli.
Note to self: Stick with People or Entertainment Weekly.
We got a private room again, thanks to my having a cold. They could hardly risk having Typhoid Mary sneeze all over her chemo roomie.
The routine was familiar. After I settled into the recliner, my nurse Valerian hooked up the pre-chemo IV bags (steroids and other anti-nausea meds) and the machine began its monotonous pumping.
When it was time for the Big Show -- Adriamycin, the red death, the red devil -- Valerian robed up in his HazMat gown and gloves in front of us, while I resolutely engaged in the most life-affirming activity I could conjure up: Shopping online for stuff I don't need.
I was typing in my credit card number while he was unwrapping the two foot-long syringes of red death. I pressed "Buy" as he inserted the first syringe into the tube dangling from my chest. The confirmation e-mail came as he started to press the plunger.
"I'm not getting any blood return," he said, frustrated. "You're going to have to lie on your side again."
As we reclined the chair, Valerian explained what he meant. "I have to see the blood return (it shows up in a little spur tube off the main one) so I know it's going into your vein and not anywhere else. It could burn you seriously if it's outside your vein."
That's also why they administer Adriamycin manually. "The machine could do it, but it wouldn't know to stop in time if you feel burning," he said.
Dr. D and the nutritionist were both pleased with my blood counts. The white cells are hanging in there -- thanks, Neulasta and let's skip that spleen stuff -- the iron was good, everything was pretty normal. I was as proud as if I'd passed a tricky calculus final.
We were out of there in less than five hours. If history repeats itself, I can expect to have a few days of feeling under the weather.
Two sessions down; six more to go. I'm gonna woman up. I'm gonna get through this.
It's just how I felt when I first got my period. Okay, I'm initiated and now I know "what it means to be a woman" in the immortal words of the Kotex pamphlet the school nurse handed out. So I'm done. When the next month rolled around, the repeat performance came as an unpleasant surprise.
"What, again?" l whined. "Are you kidding?" The vista of all the endless reruns for the rest of my life seemed impossibly dreary. (The pamphlet had neglected to mention the concept of menopause, although, at age 13, that was decades off anyway.)
That same sinking feeling descended last night when I realized that, yes, we'd be returning to the cancer center today for Round 2.
Around noon, Mark chirped, "It's time to go, honey."
I hissed at him and went slinking off.
He finally tracked me down in the closet where I was sulking and hauled me out by the scruff of my neck as I yowled pitifully.
Why, yes, I am a crazy cat lady. How did you know?
We dragged ourselves into the cancer center 30 minutes late and proceeded to hurry up and wait.
The blood draw got complicated. The needle went into my port fine, but the blood wouldn't come out. After deep breathing and waving my arms didn't work, they proceeded to have me lie on my back, then my side, along with more deep breathing and arm waves. Just as they were getting ready to break out a drug to dislodge whatever was obstructing the tube inside me, it finally started to flow.
To block out the medical travails, I tried to immerse myself in a magazine, but I'd made the mistake of picking one of the glossy periodicals just for cancer patients that lie around the waiting room. Essentially they're beautifully printed catalogs of pharmaceutical company ads interspersed with cheery tips about eating brocolli and blueberries. My eyes lit on a two-page spread about Neulasta, the shot I get 24 hours after each chemo session. They'd thoughtfully listed the side effects in a normal type size, so I was able to ponder the ramifications of ruptured spleen ("A ruptured spleen can cause death," the ad helpfully said) and acute respiratory distress.
Oh, and they make Neulasta out of E coli.
Note to self: Stick with People or Entertainment Weekly.
We got a private room again, thanks to my having a cold. They could hardly risk having Typhoid Mary sneeze all over her chemo roomie.
The routine was familiar. After I settled into the recliner, my nurse Valerian hooked up the pre-chemo IV bags (steroids and other anti-nausea meds) and the machine began its monotonous pumping.
When it was time for the Big Show -- Adriamycin, the red death, the red devil -- Valerian robed up in his HazMat gown and gloves in front of us, while I resolutely engaged in the most life-affirming activity I could conjure up: Shopping online for stuff I don't need.
I was typing in my credit card number while he was unwrapping the two foot-long syringes of red death. I pressed "Buy" as he inserted the first syringe into the tube dangling from my chest. The confirmation e-mail came as he started to press the plunger.
"I'm not getting any blood return," he said, frustrated. "You're going to have to lie on your side again."
As we reclined the chair, Valerian explained what he meant. "I have to see the blood return (it shows up in a little spur tube off the main one) so I know it's going into your vein and not anywhere else. It could burn you seriously if it's outside your vein."
That's also why they administer Adriamycin manually. "The machine could do it, but it wouldn't know to stop in time if you feel burning," he said.
Dr. D and the nutritionist were both pleased with my blood counts. The white cells are hanging in there -- thanks, Neulasta and let's skip that spleen stuff -- the iron was good, everything was pretty normal. I was as proud as if I'd passed a tricky calculus final.
We were out of there in less than five hours. If history repeats itself, I can expect to have a few days of feeling under the weather.
Two sessions down; six more to go. I'm gonna woman up. I'm gonna get through this.
Monday, October 11, 2010
Faking fitness
I feel the burn.
It’s that almost-pleasant ache you get after a hard workout. It’s a rather unfamiliar sensation since I’m not big into breaking a sweat, but I have taken a hike or two in my day and know how my muscles protested afterwards.
And now I get to experience that righteous glow of post-workout gratification without having to actually exercise.
My Neulasta shot is kicking in.
Neulasta stimulates your bone marrow to hurry up and make infection-fighting white blood cells to replace the ones wiped out by chemo. I’m getting a shot of it 24 hours after each chemo session.
So far it’s really not that bad. I’m not writhing from growing pains as agonizing as being stretched on a rack or immobilized by the sensation of cement hardening in my veins – both experiences that other chemo patients on Neulasta have described.
Instead I feel a burn in my legs, hips and back. It could pass as post-workout glow, except I’m not deluded enough to believe that my copious couch time and a few gentle walks could have generated this sensation.
I have been pumping iron, actually – every day. My version of it involves hefting six or seven bottles of dietitian-prescribed supplements, grunting to remove the child-proof caps and then choking down the Brobdingnagian pills plus one rather nasty tonic – a health-food-store version of Geritol for my iron-poor blood.
My other post-chemo effects have subsided to mild. The drugs did nip nausea in the bud, hallelulah. I’ve had some tummy upset since that first night but nothing killer. I’m exhausted and have been conking out for nine or 10 hours a night but that’s what I always do when I’m coming down with something – which is what this feels like.
All in all, I’m relieved that my most dire fears haven’t come to pass.
Chemo is cumulative. Its effects often get more pronounced and longer-lasting with each cycle so there may be more problems ahead, but for now, I’m breathing a sigh of relief to have made it through Round One.
It’s that almost-pleasant ache you get after a hard workout. It’s a rather unfamiliar sensation since I’m not big into breaking a sweat, but I have taken a hike or two in my day and know how my muscles protested afterwards.
And now I get to experience that righteous glow of post-workout gratification without having to actually exercise.
My Neulasta shot is kicking in.
Neulasta stimulates your bone marrow to hurry up and make infection-fighting white blood cells to replace the ones wiped out by chemo. I’m getting a shot of it 24 hours after each chemo session.
So far it’s really not that bad. I’m not writhing from growing pains as agonizing as being stretched on a rack or immobilized by the sensation of cement hardening in my veins – both experiences that other chemo patients on Neulasta have described.
Instead I feel a burn in my legs, hips and back. It could pass as post-workout glow, except I’m not deluded enough to believe that my copious couch time and a few gentle walks could have generated this sensation.
I have been pumping iron, actually – every day. My version of it involves hefting six or seven bottles of dietitian-prescribed supplements, grunting to remove the child-proof caps and then choking down the Brobdingnagian pills plus one rather nasty tonic – a health-food-store version of Geritol for my iron-poor blood.
My other post-chemo effects have subsided to mild. The drugs did nip nausea in the bud, hallelulah. I’ve had some tummy upset since that first night but nothing killer. I’m exhausted and have been conking out for nine or 10 hours a night but that’s what I always do when I’m coming down with something – which is what this feels like.
All in all, I’m relieved that my most dire fears haven’t come to pass.
Chemo is cumulative. Its effects often get more pronounced and longer-lasting with each cycle so there may be more problems ahead, but for now, I’m breathing a sigh of relief to have made it through Round One.
Friday, October 8, 2010
The day after: Mal de mer
They lied.
At chemo orientation they said we’d feel relatively okay the day after treatment.
Last night (Thursday night, right after treatment), I was indeed fine. Mark and I strolled to the health food store, I cheerfully chug-a-lugged water and herbal tea as directed, ate a light dinner, watched some mindless TV and collapsed into bed by 9:30 p.m.
My eyes flew open at 1 a.m. My stomach was sending out major distress signals. From tummy to throat, unhappiness reigned.
They’d explained this to me over and over. Chemo kills all fast-growing cells. Your entire GI tract is one big mucous membrane, packed with cells that are constantly dying and developing. Chemo turns the lining of your stomach raw. Your stomach signals your brain that it’s not happy. Your brain sends a signal back, “Throw it up.”
The anti-nausea drugs act by blocking one or both of these signals. And they are working a bit. I don’t actually have to vomit. I just feel queasy. Unfortunately, it’s hard to ignore.
I tried to take deep cleansing breaths and clear my brain. “In, fresh. Out, flower.”
But my evil monkey mind tortured me with images of food as if it were trying to trick me into a mad dash to the bathroom.
Embarrassingly, one of my go-to images for relaxation comes from a Clairol Herbal Essence commercial circa 1970s. A cartoon girl with Rapunzel-worthy hair flits through a verdant forest until she reaches a beautiful mountain pool where she disrobes (the hair provides discreet coverage) and takes a refreshing dip (while polluting the water with those pretty effervescent shampoo suds).
Instead of helping me unwind, that image now conjured up the thought of all the water and liquids I’m supposed to drink, 64 ounces a day. The very idea of water was enough to clench my stomach a little more. I ran through various other beverage options – all seemed unpalatable. Getting frantic, I inventoried potential light foods I might be able to stomach. All seemed downright repulsive.
I could hear my stomach warning me as if a miniature mobster from a bad B movie had taken up residence in my body, “You’d better not try to put anything down here -- or you'll be sorry.”
FRIDAY AFTERNOON UPDATE: I wrote the above in the dark hours of despair. Initially I tried one of the antinausea meds Dr. D had recommended for nighttime, because it's supposed to induce drowsiness and stop nausea, but it did neither.
At 3 am, Mark convinced me to take the heavy-duty Emend which I was supposed to save for morning. "This is morning," he pointed out, reasonably enough. It goes down along with Decadron (a steroid). I have just two Emends, which cost a whopping $110 per pill, covered by insurance but I'd gladly pay double out of pocket.
And that did the trick. The nausea finally slipped away and I was back in bed by 4.
I woke up feeling just mildly "peakish." After a lifetime of loving to eat, overnight I have developed a deep disinterest in food. Still, breakfast went down okay and I'm sipping my fluids as directed.
Some folks told me that the steroids (I had IV ones before chemo plus the Decadron) would give me a burst of energy. I had imagined that I'd be bustling around the house, finally reorganizing the linen closet and prepping the garden for winter, if not actually hitting home runs and acing the Tour de France.
No such luck.
Once more I'm pleasing the kitties by lying docilely on the couch all the day long.
At chemo orientation they said we’d feel relatively okay the day after treatment.
Last night (Thursday night, right after treatment), I was indeed fine. Mark and I strolled to the health food store, I cheerfully chug-a-lugged water and herbal tea as directed, ate a light dinner, watched some mindless TV and collapsed into bed by 9:30 p.m.
My eyes flew open at 1 a.m. My stomach was sending out major distress signals. From tummy to throat, unhappiness reigned.
They’d explained this to me over and over. Chemo kills all fast-growing cells. Your entire GI tract is one big mucous membrane, packed with cells that are constantly dying and developing. Chemo turns the lining of your stomach raw. Your stomach signals your brain that it’s not happy. Your brain sends a signal back, “Throw it up.”
The anti-nausea drugs act by blocking one or both of these signals. And they are working a bit. I don’t actually have to vomit. I just feel queasy. Unfortunately, it’s hard to ignore.
I tried to take deep cleansing breaths and clear my brain. “In, fresh. Out, flower.”
But my evil monkey mind tortured me with images of food as if it were trying to trick me into a mad dash to the bathroom.
Embarrassingly, one of my go-to images for relaxation comes from a Clairol Herbal Essence commercial circa 1970s. A cartoon girl with Rapunzel-worthy hair flits through a verdant forest until she reaches a beautiful mountain pool where she disrobes (the hair provides discreet coverage) and takes a refreshing dip (while polluting the water with those pretty effervescent shampoo suds).
Instead of helping me unwind, that image now conjured up the thought of all the water and liquids I’m supposed to drink, 64 ounces a day. The very idea of water was enough to clench my stomach a little more. I ran through various other beverage options – all seemed unpalatable. Getting frantic, I inventoried potential light foods I might be able to stomach. All seemed downright repulsive.
I could hear my stomach warning me as if a miniature mobster from a bad B movie had taken up residence in my body, “You’d better not try to put anything down here -- or you'll be sorry.”
FRIDAY AFTERNOON UPDATE: I wrote the above in the dark hours of despair. Initially I tried one of the antinausea meds Dr. D had recommended for nighttime, because it's supposed to induce drowsiness and stop nausea, but it did neither.
At 3 am, Mark convinced me to take the heavy-duty Emend which I was supposed to save for morning. "This is morning," he pointed out, reasonably enough. It goes down along with Decadron (a steroid). I have just two Emends, which cost a whopping $110 per pill, covered by insurance but I'd gladly pay double out of pocket.
And that did the trick. The nausea finally slipped away and I was back in bed by 4.
I woke up feeling just mildly "peakish." After a lifetime of loving to eat, overnight I have developed a deep disinterest in food. Still, breakfast went down okay and I'm sipping my fluids as directed.
Some folks told me that the steroids (I had IV ones before chemo plus the Decadron) would give me a burst of energy. I had imagined that I'd be bustling around the house, finally reorganizing the linen closet and prepping the garden for winter, if not actually hitting home runs and acing the Tour de France.
No such luck.
Once more I'm pleasing the kitties by lying docilely on the couch all the day long.
Thursday, October 7, 2010
First chemo: Deflowered and doing okay
Wearing HazMat gear – a Smurf-blue gown and green surgical gloves – my nurse Monica entered my chemo room carrying two huge syringes filled with red-orange fluid.
It was Adriamycin, the most potent cancer-fighting drug. Patients call it “the red devil” or “the red death” for its devastating side effects – nausea, hair loss, mouth sores, exhaustion. I’d already heard a full disclosure that those effects could include cardiotoxicity – damage to the heart muscle – severe enough to cause congestive heart failure. Each patient has a lifetime quota of how much “red death” they can safely receive. My current treatment will amount to just under half my lifetime allotment. So if I get cancer again, there will still be a few magic arrows in my oncologist’s quiver.
“Are you ready?” Monica asked.
This was the moment I’d most dreaded, the one that had kept me up last night.
“Let me send Mark to get some ice chips,” I said. “I heard that keeping them in my mouth while you administer it might prevent the mouth sores.”
Monica laughed. “There’s a real trend now among patients who think that. It’s fine if it makes you feel better.”
I was a little disappointed that this tip – which I’d gleaned from other chemo patients – didn’t have a nurse’s seal of approval, but figured I might at least get a placebo effect.
Once I’d loaded my mouth with ice, making me feel like a squirrel preparing for winter, Monica inserted the first syringe into the tube that dangled from my port, and slowly pressed the plunger.
I watched the Kool-Aid-colored fluid flow through the clear tube and could see when it started to enter my body.
And I felt – nothing.
There was no sensation from the fluid, no burning, no buzzing, no tingling.
In fact, Monica had warned me that if I did feel burning, I should tell her immediately and she would stop, because that would indicate that the stuff had leaked. It can cause third-degree burns on flesh, but doesn’t have the same impact on blood vessels.
That anticlimactic moment typified what turned out to be a tedious day of waiting and schlepping.
We showed up at the cancer center this morning laden with three bulging bags of supplies – food, hot and cold beverages, books and magazines, a laptop, a giant 3-ring notebook the center gave me and expected me to lug in for each treatment, my seven bottles of prescribed meds and vitamins (so they could double-check them).
When I went to the VAD (vascular access device) room to get blood drawn, a motherly nurse named Vivian exerted herself to be extra comforting, because she could see I was shaking from anxiety about my first time.
“It won’t be as bad as you think,” she said. “Just this one little needle stick may be the worst part of the whole day.”
And she was right. Inserting the needle into the port was just a pinprick. Once it was in with a tube connected, it stayed there all day so they could both draw blood and administer drugs through it.
“Some patients really grow to love their port because it saves them from getting stuck all the time,” Vivian said.
“Love” might be overstating it, but I could definitely see the advantage.
Then it was back to the waiting room, then back to the VAD room for another blood draw, then a wait while they called my doctor to see if she wanted yet another blood draw (she did).
For the vital signs tests, three different technicians each called their patient at the same time, creating a scene like the cash registers in Filene’s Basement. Each patient had a support person and a technician, so there were nine of us milling in a narrow corridor, the three patients waiting our turns to sit in the single chair. It was clear I was a newbie, as the other two were already bald. Mark and I tried (unsuccessfully) to tuck our giant bags discreetly out of the way.
We met with Dr. D, my oncologist, who was as efficient as ever, this time focusing on the post-chemo meds.
Friends have asked if I like her, and I do, but that’s almost irrelevant. Much as it pains me to resort to martial clichés, the intensity with which she’s outlined my situation has made one thing clear: This is war.
You don't pick a general who's nice, namby-pamby or conciliatory. Dr. D is someone who will marshal all available resources to eradicate the enemy that has invaded my body.
“The first time is your best shot to get rid of cancer,” someone told me. "If it comes back, they can't do as much. You want to do everything you can to knock it out now."
My fervent hope is that this phase will be the one and only time.
That's why I'm doing the dose-dense chemo Dr. D recommended. The theory is that by hitting them every other week, the cancer cells won't have as much time to recover before the next onslaught. Of course, neither will the healthy cells that also get destroyed.
After still more waiting and then some waiting, we were finally ushered to the infusion center and into one of the alcove/rooms where a portly middle-aged man sprawled on one of the two recliners, being tended to by a pair of nurses. My face fell. I really, really didn’t want to spend the day making strained conversation with a guy who looked like the banker dude from “Monopoly.”
But the nurse coordinator wheeled us right around and whispered to me: “I’ll find you another room, hon. I like to keep the same gender together.”
I could have hugged her.
It made for yet another wait, but she not only found me a different room, it was a private one, usually saved for disabled patients.
“We like to make things easier for your first time,” she said.
Monica hooked me up to the pre-chemo drugs that forestall nausea. A pump emitted a monotonous whirring and thump every other second as it pushed the drugs into me.
Then it was time for the Adriamycin, which took 20 minutes to administer via the syringes. Next up was another chemo drug, Cytoxan. It has its own litany of side effects, many of them similar (but not as intense) as those from Adriamycin, plus a few others, such as bladder infections. That got pumped in for an hour.
All day long, we heard lengthy (and repetitive) discourses from everyone – doctor, pharmacist, nurses, nutritionist – cautioning about the side effects, discussing all the meds to take to stave them off, advocating that I drink drink drink fluids to flush all the poisons from my body. Believe me, I’m motivated.
“You should feel okay on your chemo day and the day after because the IV steroids will still be in your system,” we’d heard at orientation. “But Day 3 – Whamo! That’s when you’ll start feeling tired and cruddy. Day 4 will be bad. By Day 5, you’ll start feeling like you’ll live. On Day 6 you’ll see more light at the end of the tunnel, and by Day 7, you should feel okay.”
After six hours at the center, three of them getting the various meds, it was finally time to go home.
“You’ll probably want to get a buzz cut before your next chemo in two weeks,” Monica said in parting. “By then your hair will be falling out in big hunks.”
It was Adriamycin, the most potent cancer-fighting drug. Patients call it “the red devil” or “the red death” for its devastating side effects – nausea, hair loss, mouth sores, exhaustion. I’d already heard a full disclosure that those effects could include cardiotoxicity – damage to the heart muscle – severe enough to cause congestive heart failure. Each patient has a lifetime quota of how much “red death” they can safely receive. My current treatment will amount to just under half my lifetime allotment. So if I get cancer again, there will still be a few magic arrows in my oncologist’s quiver.
“Are you ready?” Monica asked.
This was the moment I’d most dreaded, the one that had kept me up last night.
“Let me send Mark to get some ice chips,” I said. “I heard that keeping them in my mouth while you administer it might prevent the mouth sores.”
Monica laughed. “There’s a real trend now among patients who think that. It’s fine if it makes you feel better.”
I was a little disappointed that this tip – which I’d gleaned from other chemo patients – didn’t have a nurse’s seal of approval, but figured I might at least get a placebo effect.
Once I’d loaded my mouth with ice, making me feel like a squirrel preparing for winter, Monica inserted the first syringe into the tube that dangled from my port, and slowly pressed the plunger.
I watched the Kool-Aid-colored fluid flow through the clear tube and could see when it started to enter my body.
And I felt – nothing.
There was no sensation from the fluid, no burning, no buzzing, no tingling.
In fact, Monica had warned me that if I did feel burning, I should tell her immediately and she would stop, because that would indicate that the stuff had leaked. It can cause third-degree burns on flesh, but doesn’t have the same impact on blood vessels.
That anticlimactic moment typified what turned out to be a tedious day of waiting and schlepping.
We showed up at the cancer center this morning laden with three bulging bags of supplies – food, hot and cold beverages, books and magazines, a laptop, a giant 3-ring notebook the center gave me and expected me to lug in for each treatment, my seven bottles of prescribed meds and vitamins (so they could double-check them).
When I went to the VAD (vascular access device) room to get blood drawn, a motherly nurse named Vivian exerted herself to be extra comforting, because she could see I was shaking from anxiety about my first time.
“It won’t be as bad as you think,” she said. “Just this one little needle stick may be the worst part of the whole day.”
And she was right. Inserting the needle into the port was just a pinprick. Once it was in with a tube connected, it stayed there all day so they could both draw blood and administer drugs through it.
“Some patients really grow to love their port because it saves them from getting stuck all the time,” Vivian said.
“Love” might be overstating it, but I could definitely see the advantage.
Then it was back to the waiting room, then back to the VAD room for another blood draw, then a wait while they called my doctor to see if she wanted yet another blood draw (she did).
For the vital signs tests, three different technicians each called their patient at the same time, creating a scene like the cash registers in Filene’s Basement. Each patient had a support person and a technician, so there were nine of us milling in a narrow corridor, the three patients waiting our turns to sit in the single chair. It was clear I was a newbie, as the other two were already bald. Mark and I tried (unsuccessfully) to tuck our giant bags discreetly out of the way.
We met with Dr. D, my oncologist, who was as efficient as ever, this time focusing on the post-chemo meds.
Friends have asked if I like her, and I do, but that’s almost irrelevant. Much as it pains me to resort to martial clichés, the intensity with which she’s outlined my situation has made one thing clear: This is war.
You don't pick a general who's nice, namby-pamby or conciliatory. Dr. D is someone who will marshal all available resources to eradicate the enemy that has invaded my body.
“The first time is your best shot to get rid of cancer,” someone told me. "If it comes back, they can't do as much. You want to do everything you can to knock it out now."
My fervent hope is that this phase will be the one and only time.
That's why I'm doing the dose-dense chemo Dr. D recommended. The theory is that by hitting them every other week, the cancer cells won't have as much time to recover before the next onslaught. Of course, neither will the healthy cells that also get destroyed.
After still more waiting and then some waiting, we were finally ushered to the infusion center and into one of the alcove/rooms where a portly middle-aged man sprawled on one of the two recliners, being tended to by a pair of nurses. My face fell. I really, really didn’t want to spend the day making strained conversation with a guy who looked like the banker dude from “Monopoly.”
But the nurse coordinator wheeled us right around and whispered to me: “I’ll find you another room, hon. I like to keep the same gender together.”
I could have hugged her.
It made for yet another wait, but she not only found me a different room, it was a private one, usually saved for disabled patients.
“We like to make things easier for your first time,” she said.
Monica hooked me up to the pre-chemo drugs that forestall nausea. A pump emitted a monotonous whirring and thump every other second as it pushed the drugs into me.
Then it was time for the Adriamycin, which took 20 minutes to administer via the syringes. Next up was another chemo drug, Cytoxan. It has its own litany of side effects, many of them similar (but not as intense) as those from Adriamycin, plus a few others, such as bladder infections. That got pumped in for an hour.
All day long, we heard lengthy (and repetitive) discourses from everyone – doctor, pharmacist, nurses, nutritionist – cautioning about the side effects, discussing all the meds to take to stave them off, advocating that I drink drink drink fluids to flush all the poisons from my body. Believe me, I’m motivated.
“You should feel okay on your chemo day and the day after because the IV steroids will still be in your system,” we’d heard at orientation. “But Day 3 – Whamo! That’s when you’ll start feeling tired and cruddy. Day 4 will be bad. By Day 5, you’ll start feeling like you’ll live. On Day 6 you’ll see more light at the end of the tunnel, and by Day 7, you should feel okay.”
After six hours at the center, three of them getting the various meds, it was finally time to go home.
“You’ll probably want to get a buzz cut before your next chemo in two weeks,” Monica said in parting. “By then your hair will be falling out in big hunks.”
Tuesday, October 5, 2010
Countdown towards chemo
It’s not just Drano they’re injecting into my veins.
It’s actually a carefully crafted “cocktail.” As I understand it (I may be bit shaky on the precise medical terms), the ingredients are Drano, Agent Orange and Round-up. See, it contains something orange – that must mean it’s kind of like a screwdriver, albeit one made with the worst rotgut imaginable.
How toxic is it?
At chemo orientation, they said our partners must wear condoms for protection from our soon-to-be-noxious bodily fluids.
We toured the "infusion center.” Since I’d heard so much about the comfy recliners for receiving chemo, I was picturing that it would have a homey feel, like an upscale birthing center with Martha Stewart-esque fabrics and colors and lots of nice touches to warm it up.
It looks a lot more like an ICU.
There’s a nurse’s station in the middle and maybe 10 patient rooms – actually they’re more like small alcoves. As a cubicle dweller, I should feel right at home.
The décor may be lacking but the people are indeed warm.
Melody, the head nurse, is a friend of a friend, and gave me a huge, welcoming hug and whispered that they’d take good care of me.
The orientation was informative if not totally comforting.
The best news is that retching one’s guts out after chemo is a thing of the past. Patients may still feel queasy, but the nausea-blocking drugs are super-powerful. I’ve been prescribed five separate meds to prevent nausea and that doesn’t count the anti-nausea drugs they’ll give me intravenously. If need be, post-chemo we can return to the infusion center for more IV anti-nausea meds and IV hydration.
Fatigue is another matter. There are likely to be several days of feeling cruddy after each infusion. Since chemo is cumulative, the bad days can get worse and more frequent with each new cycle.
I don’t feel sick. It’s still so hard to grasp the paradox that I am agreeing to be poisoned – in the pursuit of good health.
It’s actually a carefully crafted “cocktail.” As I understand it (I may be bit shaky on the precise medical terms), the ingredients are Drano, Agent Orange and Round-up. See, it contains something orange – that must mean it’s kind of like a screwdriver, albeit one made with the worst rotgut imaginable.
How toxic is it?
At chemo orientation, they said our partners must wear condoms for protection from our soon-to-be-noxious bodily fluids.
We toured the "infusion center.” Since I’d heard so much about the comfy recliners for receiving chemo, I was picturing that it would have a homey feel, like an upscale birthing center with Martha Stewart-esque fabrics and colors and lots of nice touches to warm it up.
It looks a lot more like an ICU.
There’s a nurse’s station in the middle and maybe 10 patient rooms – actually they’re more like small alcoves. As a cubicle dweller, I should feel right at home.
The décor may be lacking but the people are indeed warm.
Melody, the head nurse, is a friend of a friend, and gave me a huge, welcoming hug and whispered that they’d take good care of me.
The orientation was informative if not totally comforting.
The best news is that retching one’s guts out after chemo is a thing of the past. Patients may still feel queasy, but the nausea-blocking drugs are super-powerful. I’ve been prescribed five separate meds to prevent nausea and that doesn’t count the anti-nausea drugs they’ll give me intravenously. If need be, post-chemo we can return to the infusion center for more IV anti-nausea meds and IV hydration.
Fatigue is another matter. There are likely to be several days of feeling cruddy after each infusion. Since chemo is cumulative, the bad days can get worse and more frequent with each new cycle.
I don’t feel sick. It’s still so hard to grasp the paradox that I am agreeing to be poisoned – in the pursuit of good health.
Monday, October 4, 2010
Carolyn (in) Wonderland
Carolyn Wonderland – a dynamic redhead who could be the love-child of Janis Joplin and Bonnie Raitt – was among the fabulous singers belting out tunes at the Hardly Strictly Bluegrass festival this weekend. As connoisseurs of all things Carolyn, Mark and I naturally gravitated to her performance. Unfortunately we couldn’t make it to the Carolina Chocolate Drops to keep our theme going but we compensated by drinking in lots of other amazing acts.
Boogeying in the fog turned out to be good for what ails me, although my clavicle critter (the chemo port) occasionally protested being jounced by tweaking some pain receptors –- getting me to squeal as though I were a critter myself. Later, alone in the crowd as Joan Baez’s clarion soprano soared over us all, I turned to the solace of a good cry.
On our way home, we passed throngs of pink-clad pedestrians hustling across the Golden Gate Bridge. “It’s a breast cancer walk-a-thon,” Mark exclaimed. At home when he turned on a football game, the players had accessorized with bright-pink chin straps, arm bands, towels and even cleats.
As if I’d hired a astrologer to predict when the stars would align, I appear to be starting chemo at an auspicious time, Breast Cancer Awareness Month.
The whole think-pink theme inspires mixed feelings. Lori’s articulate essay crystallizes some of them, as does Barbara Ehrenreich’s brilliant “Welcome to Cancerland.”
Being a new arrival in Cancerland, I’m appreciative that breast cancer now inspires such mainstream sympathy. As a teen, I remember my mom pulling me aside to whisper that our next-door neighbor had just had a mastectomy, as though it were something shameful. That was a couple of years before Betty Rollins (“First, You Cry”) and Betty Ford flung open the doors of the breast-cancer closet.
But I totally get that all the pink focus on the “race for the cure” sidesteps an inconvenient truth: What have we done to our planet to help engender all this cancer?
+++
In other news, without even meaning to, I played the cancer card today. The technician at my pelvic ultrasound was annoyed that I was late, until I handed her my PET/CT report and said, “I’m here to find out whether my breast cancer might have metastasized to my uterus or ovaries.”
In an instant, she transformed from Nurse Ratched to Florence Nightingale, radiating warmth and concern.
When it was over, she ignored the rules that results must be explained to the patient by the referring doctor. After conferring with the radiologist, she returned to the room and said, “The doctor says your fibroids are the same size that they were 18 months ago at your last ultrasound, and the posterior uterine area that lit up (on the PET scan) clearly look like a fibroid.”
Then she put her hand on my arm and said simply, “Good luck.”
I choked up as I walked out, both from relief and from gratitude for her compassion.
Boogeying in the fog turned out to be good for what ails me, although my clavicle critter (the chemo port) occasionally protested being jounced by tweaking some pain receptors –- getting me to squeal as though I were a critter myself. Later, alone in the crowd as Joan Baez’s clarion soprano soared over us all, I turned to the solace of a good cry.
On our way home, we passed throngs of pink-clad pedestrians hustling across the Golden Gate Bridge. “It’s a breast cancer walk-a-thon,” Mark exclaimed. At home when he turned on a football game, the players had accessorized with bright-pink chin straps, arm bands, towels and even cleats.
As if I’d hired a astrologer to predict when the stars would align, I appear to be starting chemo at an auspicious time, Breast Cancer Awareness Month.
The whole think-pink theme inspires mixed feelings. Lori’s articulate essay crystallizes some of them, as does Barbara Ehrenreich’s brilliant “Welcome to Cancerland.”
Being a new arrival in Cancerland, I’m appreciative that breast cancer now inspires such mainstream sympathy. As a teen, I remember my mom pulling me aside to whisper that our next-door neighbor had just had a mastectomy, as though it were something shameful. That was a couple of years before Betty Rollins (“First, You Cry”) and Betty Ford flung open the doors of the breast-cancer closet.
But I totally get that all the pink focus on the “race for the cure” sidesteps an inconvenient truth: What have we done to our planet to help engender all this cancer?
+++
In other news, without even meaning to, I played the cancer card today. The technician at my pelvic ultrasound was annoyed that I was late, until I handed her my PET/CT report and said, “I’m here to find out whether my breast cancer might have metastasized to my uterus or ovaries.”
In an instant, she transformed from Nurse Ratched to Florence Nightingale, radiating warmth and concern.
When it was over, she ignored the rules that results must be explained to the patient by the referring doctor. After conferring with the radiologist, she returned to the room and said, “The doctor says your fibroids are the same size that they were 18 months ago at your last ultrasound, and the posterior uterine area that lit up (on the PET scan) clearly look like a fibroid.”
Then she put her hand on my arm and said simply, “Good luck.”
I choked up as I walked out, both from relief and from gratitude for her compassion.
Guest blogger: The C Squad's Lori
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.
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.
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.
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!"
Subscribe to:
Posts (Atom)