After two years of Juli's multiple hospital admissions, mystery panic attacks, intractable vomiting and tremendous medical debt, my daughter's disease was finally diagnosed. It can be treated and possibly cured by a drug called Lamictal. The only problem was that the drug would cost almost $600 per month--a total deal-breaker, out of the realm of reality for her.
I went online and found the manufacturer of Lamictal, GlaxoSmithKline, and I called them. I explained the situation. The gentleman asked a few questions and then told me if my daughter and son-in-law's combined income was less than $36,000 a year, GSK could get her her medication today. They would email a voucher for a 60-day supply at any dispensing pharmacy for a $10 co-pay. Then, after they received a one-page form and a copy of last year's 1040 taxes, GSK would begin sending her 90-day supplies free of charge, for as long as she needed it.
I knew that there were programs, but I expected little more than maybe a coupon or a 10% discount. Unfortunately, I had bought into the all-too-familiar argument that Giant Pharma was "evil" (or at least irresponsible). Sure they spent an average of $1 Billion to develop every new drug they bring to market, and spent almost 10 years on paperwork to get it through the clinical trials and government-approval phases, but what good is a new miracle drug if no one can afford it?
Turns out that they give away the drugs to those who need them--but we never hear about THAT when the politicians are pontificating. I encourage everyone in a similar situation to call the drug manufacturer--you might be surprised at what they can do for you.
*************
Wednesday's oncology appointment when swimmingly well. I am now a 2 1/2 year cancer survivor, with NED (no evidence of disease), and an excellent prognosis. Woo-Hoo!
Showing posts with label recovery. Show all posts
Showing posts with label recovery. Show all posts
Friday, May 14, 2010
Thursday, November 26, 2009
Too Easy
I should just get over myself.
Psyching myself up for weeks, file folders under my arm, crib-sheets of facts at my fingertips, ready to talk enzymatic pathways and hormone methylization, I sallied forth to do battle with Dr. DaSilva.
"So do you want to change to the aromatase inhibitor?" he asked, halfway through the checkup.
"No way!" I got ready to argue my case.
"Okay," he said cheerfully, writing in my chart. "We'll keep you on the tamoxifen for five years, no problem."
It's all good news. No lumps or bumps, no sign of recurrence, healthy Pam. I have graduated to check-ups every four months instead of every three, I got the meds I wanted, and there were no arguments. Chest scan, blood tests, bone scan and annual gyn in March. I'm a free woman until then.
Today is Thanksgiving, and I have so much to be thankful for!
Psyching myself up for weeks, file folders under my arm, crib-sheets of facts at my fingertips, ready to talk enzymatic pathways and hormone methylization, I sallied forth to do battle with Dr. DaSilva.
"So do you want to change to the aromatase inhibitor?" he asked, halfway through the checkup.
"No way!" I got ready to argue my case.
"Okay," he said cheerfully, writing in my chart. "We'll keep you on the tamoxifen for five years, no problem."
It's all good news. No lumps or bumps, no sign of recurrence, healthy Pam. I have graduated to check-ups every four months instead of every three, I got the meds I wanted, and there were no arguments. Chest scan, blood tests, bone scan and annual gyn in March. I'm a free woman until then.
Today is Thanksgiving, and I have so much to be thankful for!
Sunday, October 25, 2009
Independence Day...of a sort
In anticipation of having the carpets cleaned on Wednesday, I started cleaning up the floor clutter this morning. I was booking right along, swamping out the canning jar collection, the piles of "to be filed," the heaps of clothes "to be mended," the books that never got home to the bookshelves, when I happened upon a great big compilation of what I like to call "My Breast Cancer Homework."
This was my life, for two whole years. Notebooks full of hospital-provided info, pamphlets on clinical trials, tumor classification flow charts, worksheets on radiation and chemotherapy side effects and remedies, articles ripped out of magazines, medical abstracts printed off the internet. In one giant leap of faith, I heaved the whole hearty mess of it into the trash.
The niggling voice of "what if you need it again?" was drowned out by the pragmatic realization that if I get cancer again, all of this past information will be either uselessly outdated or cheerfully thrust at me again. In a big binder with a pink ribbon on it, thanks so much.
For the moment, it felt great to throw it all out. Liberating, in fact. Nope. Don't need this anymore. Done.
And then tonight, I came across this gem: Rethinking the War on Cancer http://www.newsweek.com/id/157548/page/1
Seems as though 37 years of research hasn't done much except cure cancer in lab rats, mostly because the funding is going to "scientifically elegant" studies that tickle the NCI's curiosity, without showing much in terms of actual human patient benefits.
I certainly can't complain of the advances that I personally benefitted from. But it appears that this dovetails into the ACS's statement earlier this week that the scientists aren't really sure why cancer diagnoses are proliferating at a spectacularly alarming rate, and survival rates aren't increasing proportionally with the increases in early detection. This article explains some of that, and gives a window on why the research is striking out on preventing metastises, which is what kills most cancer patients. And focusing on treatment isn't working out that well, after all.
I have been supremely blessed in my treatment options, and for the moment, all's well. But these rogue cells are sneeky little buzzards. They mutate (that's what started the problem in the first place), and they adapt. For every treatment thrown at them, they seem to find a way around it. And so far, the scientific approaches haven't begun to understand the mechanisms of why good cells go bad.
The one sure thing that cancer taught me was that we all have an undetermined expiration date. This was of course true before I had cancer--it just took that experience to make me believe it. I am more determined than ever to enjoy and treasure the life I have, and make every moment count. We don't get to choose what happens to us. We only get to choose how to live with it.
This was my life, for two whole years. Notebooks full of hospital-provided info, pamphlets on clinical trials, tumor classification flow charts, worksheets on radiation and chemotherapy side effects and remedies, articles ripped out of magazines, medical abstracts printed off the internet. In one giant leap of faith, I heaved the whole hearty mess of it into the trash.
The niggling voice of "what if you need it again?" was drowned out by the pragmatic realization that if I get cancer again, all of this past information will be either uselessly outdated or cheerfully thrust at me again. In a big binder with a pink ribbon on it, thanks so much.
For the moment, it felt great to throw it all out. Liberating, in fact. Nope. Don't need this anymore. Done.
And then tonight, I came across this gem: Rethinking the War on Cancer http://www.newsweek.com/id/157548/page/1
Seems as though 37 years of research hasn't done much except cure cancer in lab rats, mostly because the funding is going to "scientifically elegant" studies that tickle the NCI's curiosity, without showing much in terms of actual human patient benefits.
I certainly can't complain of the advances that I personally benefitted from. But it appears that this dovetails into the ACS's statement earlier this week that the scientists aren't really sure why cancer diagnoses are proliferating at a spectacularly alarming rate, and survival rates aren't increasing proportionally with the increases in early detection. This article explains some of that, and gives a window on why the research is striking out on preventing metastises, which is what kills most cancer patients. And focusing on treatment isn't working out that well, after all.
I have been supremely blessed in my treatment options, and for the moment, all's well. But these rogue cells are sneeky little buzzards. They mutate (that's what started the problem in the first place), and they adapt. For every treatment thrown at them, they seem to find a way around it. And so far, the scientific approaches haven't begun to understand the mechanisms of why good cells go bad.
The one sure thing that cancer taught me was that we all have an undetermined expiration date. This was of course true before I had cancer--it just took that experience to make me believe it. I am more determined than ever to enjoy and treasure the life I have, and make every moment count. We don't get to choose what happens to us. We only get to choose how to live with it.
Wednesday, September 23, 2009
Uncommemorated
I let the two-year anniversary of my Big Boo-Hoo diagnosis slip by without mention, and I'm not really sure why. I thought about it briefly a few times, both before and after the date, but dismissed it as something unremarkable. As in: not deserving comment.
But today is my two-year anniversary of this blog (I think?), and that can be remarked upon. Two years ago, shaking and crying with terror and self-pity, my new friend MaryAnn told me to get over myself and start writing. I thought at first that the blog would be a place where I could keep my friends and family informed all at once, without having to talk to everyone over and over, rehashing my self-absorbed dramas, ad nauseum. What I didn't anticipate was that it became my therapy and my daily touchstone, a routine to measure out the days and a way to work out my fears, my anger, and my despair. Bless you, M. You changed my life as profoundly as the cancer did.
The blog has changed. Hell, I've changed in ways I'm only now discovering. I guess I really have moved on, and the whole process has been documented through these posts. But they have acquired the aura of a dusty old archive, stuck away in a back file cabinet, of a person I don't remember being anymore.
I still have to be on guard against smugness. The evil mugger still lurks, always just around the corner, waiting for an opportunity to destroy my carefully reconstructed peace. I suppose it will always be there, like a random meteorite hurling towards Earth, ready to smash out all-life-as-we-know-it, while we all go about our lives unaware of the looming disaster to come. But that's tomorrow. Scarlett O'Hara's dictum applies.
With all the milestones, life will never be the same. But it never is really the same, is it? Each experience, each day changes us in imperceptible ways. The big events just make us aware of the changes because they require a radical mind-shift from what was to what is and what will be.
I find myself actually looking forward again, something I haven't dared to do for a very long time. I am coming around to the idea that I might have a future again, a span of years that stretches so far into the distance that I feel like my mortality might not be imminent, but later. Much later.
The original purpose of the blog has been fulfilled. But I find I enjoy writing about everyday things, random thoughts, simple triumphs and small discouragements. And so, I will continue to struggle for peace and humor, and I will continue to write.
But today is my two-year anniversary of this blog (I think?), and that can be remarked upon. Two years ago, shaking and crying with terror and self-pity, my new friend MaryAnn told me to get over myself and start writing. I thought at first that the blog would be a place where I could keep my friends and family informed all at once, without having to talk to everyone over and over, rehashing my self-absorbed dramas, ad nauseum. What I didn't anticipate was that it became my therapy and my daily touchstone, a routine to measure out the days and a way to work out my fears, my anger, and my despair. Bless you, M. You changed my life as profoundly as the cancer did.
The blog has changed. Hell, I've changed in ways I'm only now discovering. I guess I really have moved on, and the whole process has been documented through these posts. But they have acquired the aura of a dusty old archive, stuck away in a back file cabinet, of a person I don't remember being anymore.
I still have to be on guard against smugness. The evil mugger still lurks, always just around the corner, waiting for an opportunity to destroy my carefully reconstructed peace. I suppose it will always be there, like a random meteorite hurling towards Earth, ready to smash out all-life-as-we-know-it, while we all go about our lives unaware of the looming disaster to come. But that's tomorrow. Scarlett O'Hara's dictum applies.
With all the milestones, life will never be the same. But it never is really the same, is it? Each experience, each day changes us in imperceptible ways. The big events just make us aware of the changes because they require a radical mind-shift from what was to what is and what will be.
I find myself actually looking forward again, something I haven't dared to do for a very long time. I am coming around to the idea that I might have a future again, a span of years that stretches so far into the distance that I feel like my mortality might not be imminent, but later. Much later.
The original purpose of the blog has been fulfilled. But I find I enjoy writing about everyday things, random thoughts, simple triumphs and small discouragements. And so, I will continue to struggle for peace and humor, and I will continue to write.
Sunday, May 31, 2009
Dawn Musings
I'm up early this morning...oh-dark-thirty early. It's been awhile since I lay abed for a half-hour in the dark, and decided I might as well just get up. It's like revisiting an old, forgotten friend.
This time of day always reminds me of the year of post-surgical Pam, who couldn't sleep comfortably for more than four hours. I'd slip upstairs quietly to write on the computer in the pre-dawn stillness, trying to quell my fears, regurgitating my experience, trying to make sense of it all and struggling mightily for calm and grace.
Now, it's hard to remember the raw-emotion-barely-controlled of that time. The veil of blessed amnesia, the simple passage of time, has healed most of the emotional and physical wounds of that lost year. I have passed the year and a half mark. I am well. I actually have days where I don't think about it much, other than the momentary grimace when I catch a glimpse in the mirror after a shower or when I dress, or the underarm tightness I feel at night when I'm tired.
Still, to be honest, I think of myself as a "cancer patient." I am in the limbo of "Cured...But," always monitoring, always on the lookout for something sinister lurking underneath the obvious outward appearance of recovery. I'm having a hard time letting go of the inner invalid, afraid to celebrate too loudly, lest I offend the random gods like a character in a Greek tragedy. You know that character will be punished for her hubris, you just know it.
I worry about my flatline of emotions. Now that my inner calm matches my outward calm for the most part, I find I miss feeling passionate about something, anything. I am adrift, and I recognize that it's a self-protective mechanism, a method of trying to escape notice by Fate, so it will pass me by this time, without throwing another lightning bolt my way. Maybe if I stay really still and quiet, nothing bad will happen again?
I know this is ridiculous. None of us is in control of what happens to us. I am mildly surprised that I've somehow chosen this small-child-under-the-covers approach, rather than fiercely fighting for joy, wringing every last bit of experience out of life, (the "Living Each Day to the Fullest" model), that my past personality would predict. I feel humbled, chastened. Still afraid, I guess.
But then, the sun comes up. It's time to put all that garbage in a box, tie a big, fat red ribbon around it and shove it to the back of the mental storage closet, to be misplaced and forgotten until the next time I decide to clean out old stuff.
This time of day always reminds me of the year of post-surgical Pam, who couldn't sleep comfortably for more than four hours. I'd slip upstairs quietly to write on the computer in the pre-dawn stillness, trying to quell my fears, regurgitating my experience, trying to make sense of it all and struggling mightily for calm and grace.
Now, it's hard to remember the raw-emotion-barely-controlled of that time. The veil of blessed amnesia, the simple passage of time, has healed most of the emotional and physical wounds of that lost year. I have passed the year and a half mark. I am well. I actually have days where I don't think about it much, other than the momentary grimace when I catch a glimpse in the mirror after a shower or when I dress, or the underarm tightness I feel at night when I'm tired.
Still, to be honest, I think of myself as a "cancer patient." I am in the limbo of "Cured...But," always monitoring, always on the lookout for something sinister lurking underneath the obvious outward appearance of recovery. I'm having a hard time letting go of the inner invalid, afraid to celebrate too loudly, lest I offend the random gods like a character in a Greek tragedy. You know that character will be punished for her hubris, you just know it.
I worry about my flatline of emotions. Now that my inner calm matches my outward calm for the most part, I find I miss feeling passionate about something, anything. I am adrift, and I recognize that it's a self-protective mechanism, a method of trying to escape notice by Fate, so it will pass me by this time, without throwing another lightning bolt my way. Maybe if I stay really still and quiet, nothing bad will happen again?
I know this is ridiculous. None of us is in control of what happens to us. I am mildly surprised that I've somehow chosen this small-child-under-the-covers approach, rather than fiercely fighting for joy, wringing every last bit of experience out of life, (the "Living Each Day to the Fullest" model), that my past personality would predict. I feel humbled, chastened. Still afraid, I guess.
But then, the sun comes up. It's time to put all that garbage in a box, tie a big, fat red ribbon around it and shove it to the back of the mental storage closet, to be misplaced and forgotten until the next time I decide to clean out old stuff.
Wednesday, February 25, 2009
It's real and it has a name!
Since I will once again deliver myself into the maw of a new medical subspecialty on Friday--the "Pain Clinic,"-- I decided to do some internet investigation last night.
The pain that I have been experiencing is so bizarre, so different from any pain I've felt before in my life, I was beginning to doubt that it was real. Perhaps it was all in my head, I thought. Like the weird phantom sensations from the breasts that were no longer there, right after the surgery last year. Both my oncologist and reconstructive surgeon seemed impatient with my reports of searing, burning waves of agony that made me cry out or drove me to my knees without warning. Ho-hum, they seemed to say. Talk to the other guy, not my department.
But I found it, and it's a real pain "syndrome." It's called Post-Traumatic Neuropathy, and involves either nerve injury at the time of surgery, or more likely in my case (because it started a full year after my surgery), constriction of nerves from that other side-effect they neglected to tell me about, over-active scar tissue.
The literature describes the pain of this condition perfectly: An exquisite sensation of severe stabbing and/or burning at the scar site. Light touch on the skin at the affected site is perceived as unbearable. In some people, superficial skin nerves become entrapped in scar tissue during the healing process.
And it also explained why the chiropractic adjustments in Washington provided some temporary relief: In some cases, adjustment or manipulation of the underlying bones and muscles may give affected nerves space to relax the constriction in the short term.
This whole experience with my continuing problems with the reconstruction has left me feeling a bit guilty. I am the Iron Maiden. I've flunked Bionic Boob Recovery. I am "one of those patients" who has trouble with encapsulation, scar tissue that over-compensates. Lucky me.
What I have been doing (Bio-Freeze topical ointment, cold packs, deep breathing), are some of the recommended treatments. But there are thankfully other options as well. Right now, I am back to life without movement, life without the use of my right arm, and this can't continue. I had hoped to get through 2009 without more surgery, but that may be my ultimate solution. I may be "one of those patients" who has to have annual housekeeping operations to clean out the scar tissue.
The pain that I have been experiencing is so bizarre, so different from any pain I've felt before in my life, I was beginning to doubt that it was real. Perhaps it was all in my head, I thought. Like the weird phantom sensations from the breasts that were no longer there, right after the surgery last year. Both my oncologist and reconstructive surgeon seemed impatient with my reports of searing, burning waves of agony that made me cry out or drove me to my knees without warning. Ho-hum, they seemed to say. Talk to the other guy, not my department.
But I found it, and it's a real pain "syndrome." It's called Post-Traumatic Neuropathy, and involves either nerve injury at the time of surgery, or more likely in my case (because it started a full year after my surgery), constriction of nerves from that other side-effect they neglected to tell me about, over-active scar tissue.
The literature describes the pain of this condition perfectly: An exquisite sensation of severe stabbing and/or burning at the scar site. Light touch on the skin at the affected site is perceived as unbearable. In some people, superficial skin nerves become entrapped in scar tissue during the healing process.
And it also explained why the chiropractic adjustments in Washington provided some temporary relief: In some cases, adjustment or manipulation of the underlying bones and muscles may give affected nerves space to relax the constriction in the short term.
This whole experience with my continuing problems with the reconstruction has left me feeling a bit guilty. I am the Iron Maiden. I've flunked Bionic Boob Recovery. I am "one of those patients" who has trouble with encapsulation, scar tissue that over-compensates. Lucky me.
What I have been doing (Bio-Freeze topical ointment, cold packs, deep breathing), are some of the recommended treatments. But there are thankfully other options as well. Right now, I am back to life without movement, life without the use of my right arm, and this can't continue. I had hoped to get through 2009 without more surgery, but that may be my ultimate solution. I may be "one of those patients" who has to have annual housekeeping operations to clean out the scar tissue.
Thursday, January 29, 2009
Do I Have to do ALL the Thinking Here?
Whew. Despite my anticipation that yesterday might be a tad stressful, I had no idea just how nutso the doctor follies were about to get. It started out well, with my blood pressure finally in the range of low-normal, after a year of all-over-the-place readings, and ho-hum normal blood work. Not anemic. Electrolytes balanced. Blood gases normal.
The night sweats and hot flashes continue to ramp up and make my life miserable in 20-30 three-minute chunks per day, despite the temporary relief given by the spruce lignan supplements a few months back. It's not working anymore. I still have major pain in my back, where the incision begins on the right side under my arm--without the weekly chiropractor adjustments that kept the pain at bay in Washington, I have some level of physical pain everyday. Dr. DaSilva says I need to see Dr. Huddleston about that (the plastic surgeon), as he suspects nerve entrapment by the implant. He still says I seem depressed. (Perhaps I am, especially on days when I have to deliver myself into the maw of medical-land). He says my cancer is in total remission, excellent news.
Wait. What about the results of my chest x-ray, taken just before I left for the west coast, I ask? Normal and clear, right? After much flipping and searching through the chart, he finds the results of the test he ordered the last time he saw me in late September. Oh, looky-there. There's a spot on my lung.
There's a SPOT on my LUNG? And someone presumably read the results of this test and, somehow, didn't have a thought that maybe I should KNOW about this? Once again, I can't trust anyone to PAY ATTENTION. The medicos are all so efficient, ordering tests and filing paperwork to cover their bases, showing that they checked all the boxes and did all the requisite follow-up, but no one ever LOOKS at the results once the procedure is followed. [Rage. Fright].
Yes, he says, we should probably do a CAT scan, even though it's probably nothing. Probably.
I spend the rest of the day in a haze of under-current panic, thrumming along in the back of my head, while I go make appointments for Dr. Huddleston for next week and Dr. Anderson for March, pick up some scar gel, shop for yarn, eat a gargantuan hamburger at Five Guys while listening to the radio, pick up my tamoxifen Rx, all the while feeling very sorry for my sorry self.
Then on the drive home, the voice-memory of Jimmy Stewart speaks to me: "Now-wait-just-a-gosh-darned-minute." I had a chest x-ray in October of 2007, a pre-op check, just before the mastectomy. Dr. DaSilva has all those records from UVA. Wouldn't it be prudent to check and see if there was a spot on my lung in that x-ray and, I don't know, maybe COMPARE the two x-rays to see if this is an old spot or a new spot, at least before we go running off for about another $3,000 in CAT scan madness?
When I finally got home in the late afternoon, I called the nurse and explained about the previous x-ray. She couldn't find it in my chart. I gave her the phone numbers for UVA. An hour later, Betty called back. "Yes," she said, "the spot was there in 2007, and the 2008 x-ray shows that it is now significantly smaller than it was the year before." Ta-da! I asked her to show the two x-ray reports to the doctor and ask if the CAT scan is really necessary, given the new information we now have, (thanks to me).
The moral of the story is: Every test, every time--get the results! Because, no one cares as much about your health as you. Because, you can't be sure that just because you deliver yourself into the arms of the medical profession for their tests and procedures, that someone is actually reading the results and connecting the information into a coherent picture of what's going on with you. I don't know why I have to keep learning this lesson, over and over again, but there it is.
It is any wonder that I might be depressed? It's depressing! After more than a year of this madness and medical run-around, the story is still the same. I'm in limbo. Waiting for the reprieve to end. Waiting for bad news to resurface.
I now have a prescription in hand for a low-dose anti-depressant, which is used off-label for the insufferable, increasing hot flashes, (with the presumed added benefit of making me a more chipper and pleasant patient). I don't know if I will fill it. I balk. Or part of me does.
Now that the wedding is over, and life (as we know it) returns to its day-to-day routine, I am noticing that I'm walking around with a tremendous sense of...nothingness. There are no highs or lows in my life. I'm just floating along, waiting for something to happen. Waiting to return to some semblance of being alive (or waiting for something to go wrong again). Ennui in the extreme. It reminds me of the year following my dad's death, when I felt that all of my emotions had just flat-lined. I didn't feel anything...I was just breathing one breath after another, going through the motions of living. Nothing impacted my disconnected-ness.
I feel that same numbness now. Even my temporary panic yesterday was muted and foggy, like it was happening to someone else. Is happiness in the form of a pill the answer? The nurse just called to tell me that the doctor still wants me to do the CAT scan. Is this for my benefit, or his?
The cancer is gone. So now, what do I do with the rest of my life?
The night sweats and hot flashes continue to ramp up and make my life miserable in 20-30 three-minute chunks per day, despite the temporary relief given by the spruce lignan supplements a few months back. It's not working anymore. I still have major pain in my back, where the incision begins on the right side under my arm--without the weekly chiropractor adjustments that kept the pain at bay in Washington, I have some level of physical pain everyday. Dr. DaSilva says I need to see Dr. Huddleston about that (the plastic surgeon), as he suspects nerve entrapment by the implant. He still says I seem depressed. (Perhaps I am, especially on days when I have to deliver myself into the maw of medical-land). He says my cancer is in total remission, excellent news.
Wait. What about the results of my chest x-ray, taken just before I left for the west coast, I ask? Normal and clear, right? After much flipping and searching through the chart, he finds the results of the test he ordered the last time he saw me in late September. Oh, looky-there. There's a spot on my lung.
There's a SPOT on my LUNG? And someone presumably read the results of this test and, somehow, didn't have a thought that maybe I should KNOW about this? Once again, I can't trust anyone to PAY ATTENTION. The medicos are all so efficient, ordering tests and filing paperwork to cover their bases, showing that they checked all the boxes and did all the requisite follow-up, but no one ever LOOKS at the results once the procedure is followed. [Rage. Fright].
Yes, he says, we should probably do a CAT scan, even though it's probably nothing. Probably.
I spend the rest of the day in a haze of under-current panic, thrumming along in the back of my head, while I go make appointments for Dr. Huddleston for next week and Dr. Anderson for March, pick up some scar gel, shop for yarn, eat a gargantuan hamburger at Five Guys while listening to the radio, pick up my tamoxifen Rx, all the while feeling very sorry for my sorry self.
Then on the drive home, the voice-memory of Jimmy Stewart speaks to me: "Now-wait-just-a-gosh-darned-minute." I had a chest x-ray in October of 2007, a pre-op check, just before the mastectomy. Dr. DaSilva has all those records from UVA. Wouldn't it be prudent to check and see if there was a spot on my lung in that x-ray and, I don't know, maybe COMPARE the two x-rays to see if this is an old spot or a new spot, at least before we go running off for about another $3,000 in CAT scan madness?
When I finally got home in the late afternoon, I called the nurse and explained about the previous x-ray. She couldn't find it in my chart. I gave her the phone numbers for UVA. An hour later, Betty called back. "Yes," she said, "the spot was there in 2007, and the 2008 x-ray shows that it is now significantly smaller than it was the year before." Ta-da! I asked her to show the two x-ray reports to the doctor and ask if the CAT scan is really necessary, given the new information we now have, (thanks to me).
The moral of the story is: Every test, every time--get the results! Because, no one cares as much about your health as you. Because, you can't be sure that just because you deliver yourself into the arms of the medical profession for their tests and procedures, that someone is actually reading the results and connecting the information into a coherent picture of what's going on with you. I don't know why I have to keep learning this lesson, over and over again, but there it is.
It is any wonder that I might be depressed? It's depressing! After more than a year of this madness and medical run-around, the story is still the same. I'm in limbo. Waiting for the reprieve to end. Waiting for bad news to resurface.
I now have a prescription in hand for a low-dose anti-depressant, which is used off-label for the insufferable, increasing hot flashes, (with the presumed added benefit of making me a more chipper and pleasant patient). I don't know if I will fill it. I balk. Or part of me does.
Now that the wedding is over, and life (as we know it) returns to its day-to-day routine, I am noticing that I'm walking around with a tremendous sense of...nothingness. There are no highs or lows in my life. I'm just floating along, waiting for something to happen. Waiting to return to some semblance of being alive (or waiting for something to go wrong again). Ennui in the extreme. It reminds me of the year following my dad's death, when I felt that all of my emotions had just flat-lined. I didn't feel anything...I was just breathing one breath after another, going through the motions of living. Nothing impacted my disconnected-ness.
I feel that same numbness now. Even my temporary panic yesterday was muted and foggy, like it was happening to someone else. Is happiness in the form of a pill the answer? The nurse just called to tell me that the doctor still wants me to do the CAT scan. Is this for my benefit, or his?
The cancer is gone. So now, what do I do with the rest of my life?
Wednesday, January 28, 2009
Doctor Day
Today is my first "annual" oncology checkup with Dr. DaSilva. I note that there is always a huge underlying sense of fear and foreboding, carefully wrapped up in a perky exterior of good-sport confidence, on Doctor Day. On these days, I remember that I'm a cancer patient, now and forever.
I used to think of myself as a healthy person. I still do, whenever I manage to forget for a little while that my breasts decided to go all nuclear on me, despite my doing all the "right" things like diet and exercise and self-exams and mammograms. Those pseudo "preventive measures" seem so much like a pathetic exercise in self-delusion now.
It does no good to dwell, of course. Reality bites, and there is nothing I can do to change what was, what is, and what will come in the future.
I get really down on Doctor Day, can you tell? But I go, mentally placing one foot in front of the other, plodding along to greet my fate, whatever it will be. Waiting for the professional pronouncement of sentence or reprieve, at least for another four months. Stuffing the fear down and not allowing it voice or existence, lest it take over my thoughts and my life, even for a day.
An internet friend said last year, "Welcome to the 'Sucks to Have an Oncologist' Club!" My sentiments exactly.
I used to think of myself as a healthy person. I still do, whenever I manage to forget for a little while that my breasts decided to go all nuclear on me, despite my doing all the "right" things like diet and exercise and self-exams and mammograms. Those pseudo "preventive measures" seem so much like a pathetic exercise in self-delusion now.
It does no good to dwell, of course. Reality bites, and there is nothing I can do to change what was, what is, and what will come in the future.
I get really down on Doctor Day, can you tell? But I go, mentally placing one foot in front of the other, plodding along to greet my fate, whatever it will be. Waiting for the professional pronouncement of sentence or reprieve, at least for another four months. Stuffing the fear down and not allowing it voice or existence, lest it take over my thoughts and my life, even for a day.
An internet friend said last year, "Welcome to the 'Sucks to Have an Oncologist' Club!" My sentiments exactly.
Saturday, November 29, 2008
5 am -- Time for Deep Thoughts
I was never one for early mornings, preferring to stay up way late and sleep in. Ever since the panic of last year though, I have become Ben Franklin's aphoristic "Early to bed and early to rise." I don't know if it will make me "healthy, wealthy and wise," but I am truly enjoying my new life as an early riser. I may have been a slug-a-bed for the first 50 years or so, but now, I'm awake for each new day's beginning.
For someone who treasures peace and quiet now over the constant activity, passionate arguments, loud music, and constant stimulation of my youth, the hour before the sun comes up is a gift. This is the time of day where I can let my mind wander and float, where I can putter and pad about in bare feet and bathrobe, sip hot coffee slowly, and wait patiently for the dawning of a new day. These are days that last year, I wasn't sure I would be around to see.
I'm pretty sure I never appreciated the reality of personal mortality until a year ago. I feel it keenly now, not as an abstract "someday" concept that we all accept as a given, but don't really want to look at full-face, preferring to let that thought slip by into the land of Scarlett O'Hara postponement. We live our lives necessarily thinking about what to do today, where to go next, making our short-term and long-term plans with a single-minded amnesia to the time when the credits will roll and the director yells "that's a wrap!" We rarely ponder death in general or the specific, certain inevitability of our own demise, until forced to be reminded of it by someone else's passing. Later, we think...much later.
But now, in middle age, it's not just our pets and our grandparents who are dying, (giving us only a momentary pause that "someday" is lying in wait for ourselves), but our parents and our peers. And occasionally, we get that heart-stopping diagnosis, gift-wrapped and presented on our own plate.
My first devastating thought was the certainty that up until that moment, I had wasted so much time on so much that was unimportant. It forced me into a retrospective of every unkind word, every character flaw, every situation handled badly--and every regret from the past had the potential to continue to be an unbandaged wound, unresolved for eternity.
Next came the rationalization phase, or as Bill and I call it "Ringing the Reassessment Bell." Being forced to look at time on this earth as finite in the immediate present rather than the distant future, I decided to mend what could be mended, forgive and forget what could not be changed, and resolved to appreciate what I had, instead of obsessing on what I had lost. I am not talking about the physical loss, but the mental and emotional cost.
I had been given a choice: I could grieve and dwell on the deficits of my life, or I could start over again and start banking my joys and blessings. It was a hard path, for this was a profound change of internal attitude for me. Now that I had been reprieved in the short term, there was a temptation to go on as if nothing had happened, that I just had a little bump in the road, a temporary set-back. But I don't trust that feeling anymore. I know better. Ignorance is not bliss, it's just ignorance.
My current reality is that this may only be a temporary reprieve. I am really okay with that (as if I had a choice in the matter), and I accept whatever comes next. In the meantime, I'm going to be a kinder, gentler Pam whenever I can, with a conscious thought that each moment is to be embraced and savored, and hopefully, lived without regrets.
Each dawn is new, and will never be repeated. I've been given a second chance to discover, learn and yes, even change the way I look at the world. I'm taking that chance. I am happy and resolve to find more happiness, wherever I can.
Sunday, November 2, 2008
Oooof!
Getting out of bed this morning was an Olympic event. After my marathon painting and hefting and hands-and-knees scrubbing of yesterday, my body is in full-fledged rebellion. I am currently waiting for my stomach to wake up so I can eat something and then down an 800 mg ibuprofen, so I can actually move around today without groaning.
But the good news is the painting is done. Finis. Well, almost. One quick roller final coat on both sides of the closet door, and that end pronouncement will be true.
I generally like to paint. I find it contemplative and relaxing, monotonous yet rhythmic. But I've reached my personal limit of brush-brush-think-think-roll-roll this time. I want desperately for this to all be done, so I can get on the road and do my other favorite contemplative activity, driving America's highways.
MaryAnn asks: "Why do you like driving cross-country, when you never look out the windows at the scenery?" She and I have a running joke that I drive with a mono-maniacal focus on the view straight ahead. She has followed me in town repeatedly, waving, honking and trying to get my attention, to no avail. I am not to be distracted from my mission! Maybe it's that I never expect to see anyone I know in town, or that I am focused on driving super-safely in an all-too familiar environment.
Out on the road, I am much more relaxed, not so destination-driven. I do look at scenery, and traveling with Echo forces me to stop each hour, walk around and scope the sights while she smells the scents of other traveling pets, her very favorite activity.
But I'm getting ahead of myself. There is still much to do: the laundry, the packing, the cleaning up so I don't have to come home to a dirty house. A year ago today, (I just realized), I had my mastectomy. How different my concerns are today, compared to 365 days ago. Now there's something to contemplate and be grateful for.
But the good news is the painting is done. Finis. Well, almost. One quick roller final coat on both sides of the closet door, and that end pronouncement will be true.
I generally like to paint. I find it contemplative and relaxing, monotonous yet rhythmic. But I've reached my personal limit of brush-brush-think-think-roll-roll this time. I want desperately for this to all be done, so I can get on the road and do my other favorite contemplative activity, driving America's highways.
MaryAnn asks: "Why do you like driving cross-country, when you never look out the windows at the scenery?" She and I have a running joke that I drive with a mono-maniacal focus on the view straight ahead. She has followed me in town repeatedly, waving, honking and trying to get my attention, to no avail. I am not to be distracted from my mission! Maybe it's that I never expect to see anyone I know in town, or that I am focused on driving super-safely in an all-too familiar environment.
Out on the road, I am much more relaxed, not so destination-driven. I do look at scenery, and traveling with Echo forces me to stop each hour, walk around and scope the sights while she smells the scents of other traveling pets, her very favorite activity.
But I'm getting ahead of myself. There is still much to do: the laundry, the packing, the cleaning up so I don't have to come home to a dirty house. A year ago today, (I just realized), I had my mastectomy. How different my concerns are today, compared to 365 days ago. Now there's something to contemplate and be grateful for.
Thursday, October 2, 2008
Not so much ranting today
My, I do go off in tangents at times. I'm feeling better today, a little more optimistic about life in general, very happy that the world is turning towards cooler days, cooler nights, colorful trees and the crispy sounds of dried leaves scuttling across the driveway in the wind.
I love autumn here in TN. Whereas fall was a time for sadness in NY (kids going back to school, winter looming), here it is a joyful relief from the heat and bugs of summer. And it lasts and lasts! Not a quick, 6-week burst of a season, but a full three months of glorious and comfortable walking in the woods, enjoying the sights, sounds and smells of the forest.
Echo is back to being her complete, normal dog-self. Whatever precipitated her terrible illness (Bill suspects snakebite), she is over it now, as if it never happened. Cesar Millan says, "Dogs live in the 'now,' never in the past like humans." Ain't it the truth.
I need more of that "living in the now" myself. It's easy to dwell on the frustrations and losses of the past year, but it's not very productive. The one thing this illness did give me is an appreciation for every little pleasure in each day. A mental note to stop and experience the small moments of joy and contentment as they occur, and to pay attention, before moving on to the next mundane thing.
Speaking of which, I finished Alex's hat!
I love autumn here in TN. Whereas fall was a time for sadness in NY (kids going back to school, winter looming), here it is a joyful relief from the heat and bugs of summer. And it lasts and lasts! Not a quick, 6-week burst of a season, but a full three months of glorious and comfortable walking in the woods, enjoying the sights, sounds and smells of the forest.
Echo is back to being her complete, normal dog-self. Whatever precipitated her terrible illness (Bill suspects snakebite), she is over it now, as if it never happened. Cesar Millan says, "Dogs live in the 'now,' never in the past like humans." Ain't it the truth.
I need more of that "living in the now" myself. It's easy to dwell on the frustrations and losses of the past year, but it's not very productive. The one thing this illness did give me is an appreciation for every little pleasure in each day. A mental note to stop and experience the small moments of joy and contentment as they occur, and to pay attention, before moving on to the next mundane thing.
Speaking of which, I finished Alex's hat!
I am SO tickled by how this turned out! The lining is super-soft and fuzzy (my fingers are sore from dealing with the slipperiness of the fine, soft yarn on the bamboo needles), it's warm and it's drop-dead cute. I'm so enchanted with this pattern, I immediately started another two, one for each of the bald-headed men in my life, husband and brother. That should keep me busy and happy for a few weeks!
Wednesday, October 1, 2008
As if I needed more reminders...
Lord save us, today is the beginning of Breast Cancer Awareness Month.
Yes, a full 31 days of pink-marketing assault, from constant stories in the news, to survivor testimonials, to walks and runs and rallies. Everything you buy this month will either be pink, wrapped in pink or sport pink ribbon logos. Sigh.
I am of two minds about this. Yes, it is good for women to be aware of breast cancer, and it is good to remind them to go get screened. Yes, it is good for corporations to donate and organizations to raise money for research and advocacy foundations.
But there is something unseemly about the full court press to market everything from hammers to Fig Newtons to batteries to bath towels to make consumers buy, buy, buy, thinking they are "fighting breast cancer" with every purchase. It smacks of exploitation.
As one of the exploited, I cringe during October. As I've been working through my mental fog of the last year, I actually have parts of days where I don't think about the pain, the mutilation, the fear and horror of what breast cancer did to me physically and mentally. Then I go grocery shopping, and get to re-live it in every blessed aisle. Thank you. Thank you so very much.
Why would I, a breast cancer "survivor," want to fill my house with pink merchandise, so that I have constant reminders of what I've been through? Does it make me feel better to buy pink Oreos or pink foot powder, knowing that some corporate giant is donating ten cents to the Komen Foundation? No, it does not.
My general feeling is that charity, whether practiced by individuals or corporations, should be done with a pure heart and a closed mouth. It doesn't count as a virtue if you are compelled to tout your "generosity." Since businesses cannot take a tax deduction for their charitable contributions, they use this month and my disease to promote their products, boost sales, and justify their giving. It disturbs me, morally.
On the other hand, it's a winning formula for the foundations. They too market breast cancer aggressively to the corporate entities, using the precise argument that promoting pink will indeed boost their sales, providing a rationalization for the charitable gift. The net result has been an explosion of funding for organizations to promote their agendas, and yes, perhaps save women's lives in the long run.
In the meantime, I just want to bury my head in my pillow during October. In November, all that pink merchandise gets shuffled to the Dollar Stores for fire-sale prices, which for some reason makes me even sadder. Racks and racks of unwanted pink trinkets feels like the world has rejected my affliction, my pain. And then I realize, I'm part of the problem. By boycotting Breast Cancer Awareness October, the inevitable result is Dollar Store November.
Pink is the color of my very crappiest year ever. Pink is the color of remembrance of things best forgotten, or at least shoved into the deepest, darkest recesses of my mental closet. There is no joy in pink.
Yes, a full 31 days of pink-marketing assault, from constant stories in the news, to survivor testimonials, to walks and runs and rallies. Everything you buy this month will either be pink, wrapped in pink or sport pink ribbon logos. Sigh.
I am of two minds about this. Yes, it is good for women to be aware of breast cancer, and it is good to remind them to go get screened. Yes, it is good for corporations to donate and organizations to raise money for research and advocacy foundations.
But there is something unseemly about the full court press to market everything from hammers to Fig Newtons to batteries to bath towels to make consumers buy, buy, buy, thinking they are "fighting breast cancer" with every purchase. It smacks of exploitation.
As one of the exploited, I cringe during October. As I've been working through my mental fog of the last year, I actually have parts of days where I don't think about the pain, the mutilation, the fear and horror of what breast cancer did to me physically and mentally. Then I go grocery shopping, and get to re-live it in every blessed aisle. Thank you. Thank you so very much.
Why would I, a breast cancer "survivor," want to fill my house with pink merchandise, so that I have constant reminders of what I've been through? Does it make me feel better to buy pink Oreos or pink foot powder, knowing that some corporate giant is donating ten cents to the Komen Foundation? No, it does not.
My general feeling is that charity, whether practiced by individuals or corporations, should be done with a pure heart and a closed mouth. It doesn't count as a virtue if you are compelled to tout your "generosity." Since businesses cannot take a tax deduction for their charitable contributions, they use this month and my disease to promote their products, boost sales, and justify their giving. It disturbs me, morally.
On the other hand, it's a winning formula for the foundations. They too market breast cancer aggressively to the corporate entities, using the precise argument that promoting pink will indeed boost their sales, providing a rationalization for the charitable gift. The net result has been an explosion of funding for organizations to promote their agendas, and yes, perhaps save women's lives in the long run.
In the meantime, I just want to bury my head in my pillow during October. In November, all that pink merchandise gets shuffled to the Dollar Stores for fire-sale prices, which for some reason makes me even sadder. Racks and racks of unwanted pink trinkets feels like the world has rejected my affliction, my pain. And then I realize, I'm part of the problem. By boycotting Breast Cancer Awareness October, the inevitable result is Dollar Store November.
Pink is the color of my very crappiest year ever. Pink is the color of remembrance of things best forgotten, or at least shoved into the deepest, darkest recesses of my mental closet. There is no joy in pink.
Saturday, September 20, 2008
Fall Feelings
It must be the change in weather the past few days. The nights are getting cooler, the days are warm but not suffocating, and the light is getting that peculiar "thin" feeling, like a fragile veil laid over the morning sky. I'm sleeping later, no longer up in the dead-dark just before dawn.
This year has been one heck of a process. How apropos that it all happened in September, that this time of the year is my retrospective milestone, my anniversary and my mental "new year." As a child and later as what seemed like perpetual college studentdom, the new year always started in September, not January.
I feel as if I've turned a corner, flipped an attitude, effected what the jargonists lately call a "sea change." Suddenly, I've stopped obsessing so much. My waking thoughts rarely include dwelling on what was and what's been lost, or even about the future and what it might bring. I truly feel as though I am "living in the now," and that now doesn't ponder so tediously about my body, my bionic breasts, or cancer.
I think most of the change is due to the fact that I can now do most anything I want physically, without pain. Oh, occasionally I'll bump into something with my chest (and bounce back, alarmingly!), or feel a twinge underneath, or catch a glimpse in a mirror, but for the most part it's all fading into the past. It's almost like...it's over?
I still take my handfuls of vitamins and supplements and anti-cancer drugs. That's a thrice-daily reminder. I have to massage everyday to keep my bowsprit from seizing up into "Iron Woman." But that big mental-amnesia bandage has done its job. Time has healed most of the physical and mental wounds, just like Mom said it would.
****************
On a practical note, my Mr. Mow-man, Keith, came to do the yard yesterday and provided the muscle to remove the new toilet from the back of my car. Hooray! I don't have to drive to Lexington with a giant KOHLER box in the back! Thank you Keith!
This year has been one heck of a process. How apropos that it all happened in September, that this time of the year is my retrospective milestone, my anniversary and my mental "new year." As a child and later as what seemed like perpetual college studentdom, the new year always started in September, not January.
I feel as if I've turned a corner, flipped an attitude, effected what the jargonists lately call a "sea change." Suddenly, I've stopped obsessing so much. My waking thoughts rarely include dwelling on what was and what's been lost, or even about the future and what it might bring. I truly feel as though I am "living in the now," and that now doesn't ponder so tediously about my body, my bionic breasts, or cancer.
I think most of the change is due to the fact that I can now do most anything I want physically, without pain. Oh, occasionally I'll bump into something with my chest (and bounce back, alarmingly!), or feel a twinge underneath, or catch a glimpse in a mirror, but for the most part it's all fading into the past. It's almost like...it's over?
I still take my handfuls of vitamins and supplements and anti-cancer drugs. That's a thrice-daily reminder. I have to massage everyday to keep my bowsprit from seizing up into "Iron Woman." But that big mental-amnesia bandage has done its job. Time has healed most of the physical and mental wounds, just like Mom said it would.
****************
On a practical note, my Mr. Mow-man, Keith, came to do the yard yesterday and provided the muscle to remove the new toilet from the back of my car. Hooray! I don't have to drive to Lexington with a giant KOHLER box in the back! Thank you Keith!
Tuesday, July 15, 2008
The "End"
Today is a milestone of sorts: the end of my bionic breast reconstruction. Of course, there never really is an ending to the whole experience, what with checks every three months, ongoing monitoring of my status, medication for at least the next 4 1/2 years, and the probable necessity of further encapsulotomies because of my overactive scar tissue. But if there is an end to them fussing with the cosmetic aftermath of my mastectomy, I guess today is the day.
Today, my bionics will be tattooed to look "normal." This is so weird to me, on so many levels, it just boggles. Like everything else in this Pam Soap Opera, it's just one more smack of the surreal.
Before I got the starring role in this particular drama, I'm absolutely sure I never thought about what actually happened to women who had breast cancer, mastectomies or reconstruction. It never occurred to me that breasts & nipples could be fashioned out of skin, muscle and silicone implants, and that tattoos would color the aureoles (interestingly, the same color, same texture, as one's lips). And yet here I am, a walking poster child to the miracles of modern plastic surgery.
It's fine, miraculous really, in the abstract; but who would really want to go there, given the choice? That is the point, of course--my choices were limited to reconstruction or no reconstruction, and I'm not sure I even gave the no reconstruction option any thought at all. I just assumed that I would have some kind of reconstruction, and this is what was available, this is what I got.
As in, "I had a double mastectomy and all I got was this lousy T-shirt (and what fills it)."
So, one foot in front of the other, I have just plodded along the whole process as an act of faith, trusting that the surgeon knew what step was next, and trusting that eventually this Brave New Bod would become less strange, less alien. I'm not there yet, not at all.
But I go, and I submit, because that is what is next. And maybe sometime in the future, it will be all right.
Today, my bionics will be tattooed to look "normal." This is so weird to me, on so many levels, it just boggles. Like everything else in this Pam Soap Opera, it's just one more smack of the surreal.
Before I got the starring role in this particular drama, I'm absolutely sure I never thought about what actually happened to women who had breast cancer, mastectomies or reconstruction. It never occurred to me that breasts & nipples could be fashioned out of skin, muscle and silicone implants, and that tattoos would color the aureoles (interestingly, the same color, same texture, as one's lips). And yet here I am, a walking poster child to the miracles of modern plastic surgery.
It's fine, miraculous really, in the abstract; but who would really want to go there, given the choice? That is the point, of course--my choices were limited to reconstruction or no reconstruction, and I'm not sure I even gave the no reconstruction option any thought at all. I just assumed that I would have some kind of reconstruction, and this is what was available, this is what I got.
As in, "I had a double mastectomy and all I got was this lousy T-shirt (and what fills it)."
So, one foot in front of the other, I have just plodded along the whole process as an act of faith, trusting that the surgeon knew what step was next, and trusting that eventually this Brave New Bod would become less strange, less alien. I'm not there yet, not at all.
But I go, and I submit, because that is what is next. And maybe sometime in the future, it will be all right.
Sunday, June 29, 2008
Mid-trip Musings
I wasn't going to do a trip retrospective until I got home, counting on having the 800 miles back to digest the visits, the insights and whatever profundities made themselves known to me.
But I find myself at the computer on this morning at Ron & Kendra's house, reaching for the blog, as the swirl of people and places has started getting crowded in my head.
It's been great to see our old friends--everyone looks great and we fall into instant familiarity and laughter. To see myself reflected in the eyes of people I have known for so many years, gives me a new perspective on the events of last year. They really do see me as unchanged. I am whole to them, undamaged, and they are so happy to have me here and well.
Living in my isolated world of my own "me-me-me" trauma, this is the confirmation that I have been missing--that I am indeed still the same person at core, that whatever was done to me has not stolen my spirit, changed my essential persona, or damaged my appeal. They still like me.
I know it sounds somewhat ridiculous. I don't know what I feared, and I surely didn't expect rejection from the people I love, but to be enveloped in love reflected back and sincere exhortations of how I am the same to them brings a powerful sense of relief. I really am OK. I will bounce back, I have bounced quite a bit already, and I emerge from my own little nightmare experience unscathed, as far as they are concerned.
It occurred to me last night, while talking about what everyone has gone through, and is currently dealing with in their lives, that maybe none of us gets through life with all our original parts. For some the scars are physical, for some it's psychological or mental, but none of us get out of here untouched. What stays constant is love and loyalty.
And maybe, that is indeed enough.
But I find myself at the computer on this morning at Ron & Kendra's house, reaching for the blog, as the swirl of people and places has started getting crowded in my head.
It's been great to see our old friends--everyone looks great and we fall into instant familiarity and laughter. To see myself reflected in the eyes of people I have known for so many years, gives me a new perspective on the events of last year. They really do see me as unchanged. I am whole to them, undamaged, and they are so happy to have me here and well.
Living in my isolated world of my own "me-me-me" trauma, this is the confirmation that I have been missing--that I am indeed still the same person at core, that whatever was done to me has not stolen my spirit, changed my essential persona, or damaged my appeal. They still like me.
I know it sounds somewhat ridiculous. I don't know what I feared, and I surely didn't expect rejection from the people I love, but to be enveloped in love reflected back and sincere exhortations of how I am the same to them brings a powerful sense of relief. I really am OK. I will bounce back, I have bounced quite a bit already, and I emerge from my own little nightmare experience unscathed, as far as they are concerned.
It occurred to me last night, while talking about what everyone has gone through, and is currently dealing with in their lives, that maybe none of us gets through life with all our original parts. For some the scars are physical, for some it's psychological or mental, but none of us get out of here untouched. What stays constant is love and loyalty.
And maybe, that is indeed enough.
Tuesday, June 17, 2008
Feeling Lucky
I've been feeling pretty darn optimistic for the past few days. Pondering everything that has happened, I'm starting to believe it, internalize it. How incredibly lucky I am to have plodded through without the chemo, without the radiation, without having to make the difficult risk vs. benefits choices that so many patients have to submit to in addition to their surgeries. All of a sudden, I'm starting to feel a bit of the humble thankfulness that I've been pretty much faking, but still striving for.
Yes, I'm still "tight as a drum," still go through every day with pain and constriction as a constant companion, still shrink with something akin to revulsion and horror when I catch sight of myself in a mirror, and still leak tears when I'm feeling all sorry for my sorry self. But really, I think I'm starting to get a grip. I got off easy. I really have little cause to rant or sing the blues, even if my reality seems to trump other peoples' trials, by the singular fact that it happen to me.
Concentrating on one's blessings rather than one's misfortunes is a constant struggle for me. It doesn't really make me feel better to know that other people have bigger obstacles to overcome, harder lives, or more devastating losses. In fact, the opposite has been true: I've felt guilty because other people have handled their challenges with so much more cheerfulness and aplomb.
(And here I sit, with the boo-boo face on, when I suffered so minutely in comparison).
But I've decided that comparing your own experience to someone else's, while living your own trials day-by-day, is a losing game. There's always someone worse off than me. Does that diminish whatever negatives I am feeling, simply by knowing that somewhere, another person is suffering worse? Of course not. We can imagine what it would be like to live someone else's trauma, but we cannot identify with it on the same personal level that we monitor our own experience.
Strangely, there seems to be a hierarchy in the world of cancer, just like there is in every other facet of life. I am guilty of it too. When I was first diagnosed, I noticed a temptation in myself to dismiss people who had lesser forms; in other words, I had little to no sympathy for women who had a Stage 0 lumpectomy, when I had to have a bilateral mastectomy! Then when I cruised the blogs (looking for hope, I think), I found stories that wrenched my soul, and made me cry with relief that all I had was my paltry little surgery. I'd tell myself, "at least I didn't have to spend six months throwing up," or "thank heavens I have insurance," or "how can she go on, when it's metastasized to her lungs and brain?" So, briefly, I was grateful. And then my own reality would grab back on and send me into fear of the future, rather than comfort me in the now.
I don't like the idea of taking comfort in my own situation by comparing it to someone who is worse off, or feeling somehow more smug, more put upon, more challenged than someone who got off even easier than I did. Everyone--yes, even the Stage 0--has had to deal with same emotional roller-coaster and some form of gross physical assault that this disease brings.
It is what it is, for everyone touched by it. Everyone's reality is different, yet we all share a commonality of experience. The disease intruded on our lives, and I don't think it matters how much, only that it rocked our individual worlds and changed everything forever. So I've given up on comparisons. They just don't work.
I really do feel lucky to be alive, and to have such a good prognosis. I think about that everyday. How could I feel anything but sincerely thankful?
Yes, I'm still "tight as a drum," still go through every day with pain and constriction as a constant companion, still shrink with something akin to revulsion and horror when I catch sight of myself in a mirror, and still leak tears when I'm feeling all sorry for my sorry self. But really, I think I'm starting to get a grip. I got off easy. I really have little cause to rant or sing the blues, even if my reality seems to trump other peoples' trials, by the singular fact that it happen to me.
Concentrating on one's blessings rather than one's misfortunes is a constant struggle for me. It doesn't really make me feel better to know that other people have bigger obstacles to overcome, harder lives, or more devastating losses. In fact, the opposite has been true: I've felt guilty because other people have handled their challenges with so much more cheerfulness and aplomb.
(And here I sit, with the boo-boo face on, when I suffered so minutely in comparison).
But I've decided that comparing your own experience to someone else's, while living your own trials day-by-day, is a losing game. There's always someone worse off than me. Does that diminish whatever negatives I am feeling, simply by knowing that somewhere, another person is suffering worse? Of course not. We can imagine what it would be like to live someone else's trauma, but we cannot identify with it on the same personal level that we monitor our own experience.
Strangely, there seems to be a hierarchy in the world of cancer, just like there is in every other facet of life. I am guilty of it too. When I was first diagnosed, I noticed a temptation in myself to dismiss people who had lesser forms; in other words, I had little to no sympathy for women who had a Stage 0 lumpectomy, when I had to have a bilateral mastectomy! Then when I cruised the blogs (looking for hope, I think), I found stories that wrenched my soul, and made me cry with relief that all I had was my paltry little surgery. I'd tell myself, "at least I didn't have to spend six months throwing up," or "thank heavens I have insurance," or "how can she go on, when it's metastasized to her lungs and brain?" So, briefly, I was grateful. And then my own reality would grab back on and send me into fear of the future, rather than comfort me in the now.
I don't like the idea of taking comfort in my own situation by comparing it to someone who is worse off, or feeling somehow more smug, more put upon, more challenged than someone who got off even easier than I did. Everyone--yes, even the Stage 0--has had to deal with same emotional roller-coaster and some form of gross physical assault that this disease brings.
It is what it is, for everyone touched by it. Everyone's reality is different, yet we all share a commonality of experience. The disease intruded on our lives, and I don't think it matters how much, only that it rocked our individual worlds and changed everything forever. So I've given up on comparisons. They just don't work.
I really do feel lucky to be alive, and to have such a good prognosis. I think about that everyday. How could I feel anything but sincerely thankful?
Sunday, April 20, 2008
Seeking meaning in random events?
One of the questions I still ask myself is "why me?" A BC site I occasionally go to is Y-me.org, so I don't think I'm unique. When you're smacked upside your head with a cancer diagnosis, and make it through to the other side of treatment, you're left with a sense that at the very least, it all should mean something profound. What is the point of going through all of this if it doesn't have a positive outcome, a mind-changing perspective, or life-altering repercussions?
This is definitely human rationalization, not objective fact. No matter how this happened or why it happened to me, I'm left with the obvious outward changes and naturally want the mental universe to balance out. I contemplate what has changed inside, but am left feeling a bit hollow and superficial. Surely I must have gleaned some new insight, gained something significant to add to my character or world view?
Shouldn't I be kinder, gentler, more filled with humility, more seeking of grace? Shouldn't I be soldiering on with a renewed appreciation of optimism and gratitude? Shouldn't I be looking at life with renewed zest, and a passionate, energetic determination to commit to living the rest of my life with the volume turned all the way up? On one level, perhaps I am, but the response I'm noticing lately is the impulse to cover over the trauma with some emotional scar tissue and just try to go back to "normal," whatever that was. It is so easy, so tempting, to want to slip back into the amnesiac life of before: Trusting. Oblivious. Nothing bad can happen to me.
I think I desperately want this to have changed me in some significant way, because if it's just a random occurrence that I randomly survived, then it could just as easily happen again (when I'm back to my unconscious, non-vigilant self?), or worse, happen to someone else I care about. This line of thinking is intolerable right now. I'm just now moving beyond the physical pain and frustrating inabilities, and still trying to get a grip on the torque wrench that will adjust the mental attitudes to something I can live with from now on.
But if it just happened without reason or purpose, and I haven't learned anything new, then... what do I do now?
This is definitely human rationalization, not objective fact. No matter how this happened or why it happened to me, I'm left with the obvious outward changes and naturally want the mental universe to balance out. I contemplate what has changed inside, but am left feeling a bit hollow and superficial. Surely I must have gleaned some new insight, gained something significant to add to my character or world view?
Shouldn't I be kinder, gentler, more filled with humility, more seeking of grace? Shouldn't I be soldiering on with a renewed appreciation of optimism and gratitude? Shouldn't I be looking at life with renewed zest, and a passionate, energetic determination to commit to living the rest of my life with the volume turned all the way up? On one level, perhaps I am, but the response I'm noticing lately is the impulse to cover over the trauma with some emotional scar tissue and just try to go back to "normal," whatever that was. It is so easy, so tempting, to want to slip back into the amnesiac life of before: Trusting. Oblivious. Nothing bad can happen to me.
I think I desperately want this to have changed me in some significant way, because if it's just a random occurrence that I randomly survived, then it could just as easily happen again (when I'm back to my unconscious, non-vigilant self?), or worse, happen to someone else I care about. This line of thinking is intolerable right now. I'm just now moving beyond the physical pain and frustrating inabilities, and still trying to get a grip on the torque wrench that will adjust the mental attitudes to something I can live with from now on.
But if it just happened without reason or purpose, and I haven't learned anything new, then... what do I do now?
Thursday, April 10, 2008
I'll admit it...I was freaking out...
Yesterday, I found a "lump" in the left side of my neck, and another one just above my collarbone on the other side.
I called my local doc's office right away and got an appointment with the Family Nurse Practitioner for this afternoon. I figured (translation: desperately hoped) that it was something stupid or trivial. Rather than spend 2 hours and $300 to go see the oncologist right away, I decided that I really needed it to be "nothing serious."
Keeping the monster in the box, I got busy last night on finishing the taxes. Everytime my hand would stray up to the spot to feel them again, I'd take a deep breath, put my hand down and change the subject in my head. But inside, the panic-wailing threatened, barely under control.
My FNP took her time today palpating the spots I showed her. She said she was concerned. They were most certainly swollen lymph nodes, a sign of a problem. Then she lifted my hair back and saw the 3 inflamed bug bites on my jawline, just above the bump near my collarbone. And then the big swollen knot of the other bite on the back of my neck, right next to the other node-of-concern. We have a plausible explanation now for the agitated lymph nodes. They are fighting the toxins from the buggy-bites.
It's a temporary relief, but a welcome one. If they don't resume normal size by next week, I will have to go get them looked at again, this time by the cancer people. I just had a roomful of docs feeling everything from my chin to my waist last week at UVA, so this is the most likely cause. Let down. Big sigh. Probably nothing.
But this is what it's like all the time now--just waiting for something else to go wrong, another lump to appear, more bad news. I absolutely detest that this is what life seems to be about. The gremlin is always there in the background--I can ignore it most of the time, feeling good, getting better, and then WHAM! With a twinge in the bone, an ache in the gut, a bump in the skin, it all comes roaring back like a sleeping beast awakened. And every little thing, no matter how insignificant I think it is at first, has to be investigated as if my life depended on it. Because it does. I can't trust my judgment anymore about what is normal and what is abnormal.
How do I discern vigilance from paranoiac hypochondria? How do I know what needs to be looked at and what can be safely ignored? If I had thought this through, I probably could have figured out that these lumps and bumps were the result of my insect bites, but I still had to go running downtown and hear someone else tell me, just so I could resume breathing normally! I hate crying "wolf," I hate even thinking "wolf;" Is that what I'm doing here?
The problem is that I now expect my body to mess with me. This old crate used to be my friend! And then it betrayed me! I thought I knew my body, and I got shown the extent of that huge delusion last year. Now I have to decide whether I'm ignoring things that are serious or blowing the trivial way out of proportion, and I don't know which is which. I'd like to be able to keep a balance of being responsible and monitoring potential problems without going over the edge into an abyss of speculative hysteria at every little thing. I want to go back to trusting my body, and yet I'm constantly being handed new things to think the worst about. It just seems like it's never really over.
How do you live with optimism and verve, when Mr. Nasty-Cancer is always hanging around the backdoor, looking for a way to break into your house when your alarm system is temporarily turned off?
I called my local doc's office right away and got an appointment with the Family Nurse Practitioner for this afternoon. I figured (translation: desperately hoped) that it was something stupid or trivial. Rather than spend 2 hours and $300 to go see the oncologist right away, I decided that I really needed it to be "nothing serious."
Keeping the monster in the box, I got busy last night on finishing the taxes. Everytime my hand would stray up to the spot to feel them again, I'd take a deep breath, put my hand down and change the subject in my head. But inside, the panic-wailing threatened, barely under control.
My FNP took her time today palpating the spots I showed her. She said she was concerned. They were most certainly swollen lymph nodes, a sign of a problem. Then she lifted my hair back and saw the 3 inflamed bug bites on my jawline, just above the bump near my collarbone. And then the big swollen knot of the other bite on the back of my neck, right next to the other node-of-concern. We have a plausible explanation now for the agitated lymph nodes. They are fighting the toxins from the buggy-bites.
It's a temporary relief, but a welcome one. If they don't resume normal size by next week, I will have to go get them looked at again, this time by the cancer people. I just had a roomful of docs feeling everything from my chin to my waist last week at UVA, so this is the most likely cause. Let down. Big sigh. Probably nothing.
But this is what it's like all the time now--just waiting for something else to go wrong, another lump to appear, more bad news. I absolutely detest that this is what life seems to be about. The gremlin is always there in the background--I can ignore it most of the time, feeling good, getting better, and then WHAM! With a twinge in the bone, an ache in the gut, a bump in the skin, it all comes roaring back like a sleeping beast awakened. And every little thing, no matter how insignificant I think it is at first, has to be investigated as if my life depended on it. Because it does. I can't trust my judgment anymore about what is normal and what is abnormal.
How do I discern vigilance from paranoiac hypochondria? How do I know what needs to be looked at and what can be safely ignored? If I had thought this through, I probably could have figured out that these lumps and bumps were the result of my insect bites, but I still had to go running downtown and hear someone else tell me, just so I could resume breathing normally! I hate crying "wolf," I hate even thinking "wolf;" Is that what I'm doing here?
The problem is that I now expect my body to mess with me. This old crate used to be my friend! And then it betrayed me! I thought I knew my body, and I got shown the extent of that huge delusion last year. Now I have to decide whether I'm ignoring things that are serious or blowing the trivial way out of proportion, and I don't know which is which. I'd like to be able to keep a balance of being responsible and monitoring potential problems without going over the edge into an abyss of speculative hysteria at every little thing. I want to go back to trusting my body, and yet I'm constantly being handed new things to think the worst about. It just seems like it's never really over.
How do you live with optimism and verve, when Mr. Nasty-Cancer is always hanging around the backdoor, looking for a way to break into your house when your alarm system is temporarily turned off?
Wednesday, March 19, 2008
Other voices
For the first time in months, I have been perusing the Breast Cancer blogs on the net again. I'm not sure what I'm looking for, but maybe it's perspective? Hope? A final farewell? I feel like I'm pushing myself back into the storm, if only to remember what it was like when I was actively in it, so as not to lose the connection (with the group I never wanted to be a member of)! Just when I feel myself starting to get beyond it, I feel a nostalgia for the intensity of last fall. Like The Godfather, it keeps pulling me back in...
There are some astonishing blogs out there--really amazing, honest, infuriating, funny, sad, and ironic stuff. One article, "Gag me with a Pink Ribbon," at http://www.assertivepatient.com/ had me laughing so hard, I had to go get a cold cloth for my head. The author declares, "It's a disease, not a marketing opportunity!" and catalogues her outrage at products such as Breast Cancer Barbie, (she suggests marketing companion dolls such as Prostate Cancer Ken and little sister, Benign Girl, who "loves her big sister, but doesn't want to grow up to be like her!"), provides a mural of herself made out of pink M&Ms entitled "What I See in the Mirror--and It Ain't Pretty!", and sports a militant attitude about surviving not just cancer, but the whole falderol (spellcheck isn't working here, so I apologize) of Breast Cancer Awareness Month.
Last October, when we were in the thick of it, Bill complained about the barrage of pink-marketed items we had to wade through everywhere, saying, "Thanks, but I think we're aware now!" There is an element of exploitation when marketing everything from yogurt to power tools by slapping a pink ribbon on the package and supposedly donating a paltry percentage of the sale to the Susan G. Komen Foundation. It's gotten out of control.
Another blog, entitled As the Tumor Turns at http://www.spinningtumor.blogspot.com/, features truly amazing art and photography, as well as articulate posts about dogs, Mexico vacations and life in general, as well as the daily struggles of adapting to post-cancer life.
I hesitate sharing these in one sense--for people who haven't lived this, some of it is pretty raw, and might be taken the "wrong" way, whatever that is. I found some of it offensive too, but I am also encouraged. All these voices provide a community of people who are pathfinding their way through it, just like I am.
Since I can't afford therapy (and could barely tolerate the smugness of it in any case--I'd have to hold in my snorting impulse, I distrust psychobabble so), blogging has become the place where I try out my emotions, work through conflicts and learn to heal myself. Reading other people's blogs gives me touchpoints of similarities and differences, a way to gut-check what I'm really feeling and see if it rings true to myself.
There are some astonishing blogs out there--really amazing, honest, infuriating, funny, sad, and ironic stuff. One article, "Gag me with a Pink Ribbon," at http://www.assertivepatient.com/ had me laughing so hard, I had to go get a cold cloth for my head. The author declares, "It's a disease, not a marketing opportunity!" and catalogues her outrage at products such as Breast Cancer Barbie, (she suggests marketing companion dolls such as Prostate Cancer Ken and little sister, Benign Girl, who "loves her big sister, but doesn't want to grow up to be like her!"), provides a mural of herself made out of pink M&Ms entitled "What I See in the Mirror--and It Ain't Pretty!", and sports a militant attitude about surviving not just cancer, but the whole falderol (spellcheck isn't working here, so I apologize) of Breast Cancer Awareness Month.
Last October, when we were in the thick of it, Bill complained about the barrage of pink-marketed items we had to wade through everywhere, saying, "Thanks, but I think we're aware now!" There is an element of exploitation when marketing everything from yogurt to power tools by slapping a pink ribbon on the package and supposedly donating a paltry percentage of the sale to the Susan G. Komen Foundation. It's gotten out of control.
Another blog, entitled As the Tumor Turns at http://www.spinningtumor.blogspot.com/, features truly amazing art and photography, as well as articulate posts about dogs, Mexico vacations and life in general, as well as the daily struggles of adapting to post-cancer life.
I hesitate sharing these in one sense--for people who haven't lived this, some of it is pretty raw, and might be taken the "wrong" way, whatever that is. I found some of it offensive too, but I am also encouraged. All these voices provide a community of people who are pathfinding their way through it, just like I am.
Since I can't afford therapy (and could barely tolerate the smugness of it in any case--I'd have to hold in my snorting impulse, I distrust psychobabble so), blogging has become the place where I try out my emotions, work through conflicts and learn to heal myself. Reading other people's blogs gives me touchpoints of similarities and differences, a way to gut-check what I'm really feeling and see if it rings true to myself.
Tuesday, March 18, 2008
Still fussing...
My satellite woes are continuing, so I'll be brief.
Steri-strips came off at Dr. Huddleston's yesterday, my stitches look great. I told him I'm not ready for nipple reconstruction, so I am to see him again in 6 weeks. Maybe I'll be ready to face that then. I continue to experience great relief from the surgery he did on March 7. So this is what it was always supposed to feel like? What a revelation!
Dave comes tomorrow. The house is a mess. What else is new?
Steri-strips came off at Dr. Huddleston's yesterday, my stitches look great. I told him I'm not ready for nipple reconstruction, so I am to see him again in 6 weeks. Maybe I'll be ready to face that then. I continue to experience great relief from the surgery he did on March 7. So this is what it was always supposed to feel like? What a revelation!
Dave comes tomorrow. The house is a mess. What else is new?
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