Yes, my friends. I ain't dead yet. I realize it's only been a week or so since my last post, but don't forget that in addition to cancer, there are buses that could run me over, criminals who might slit my throat, snakes that if they came too close could give me a heart attack, and all kinds of other dangers out there that could knock me off, or you off, for that matter.
Don't mean to bring you down. I am feeling rather cheerful this morning, really. The annual physical went okay yesterday, although the suggestions for additional medical consultations could pretty much fill all my time: dermatologist, bone density, genetic testing, questions for radiologist, questions for oncologist, future appointments with her. Add to that all of the consultations that will be required for exploring and possibly implementing breast reconstruction...you begin to wonder about quality of life after cancer diagnosis. Maybe I should take a walk across the Mass Pike.
Still sounding a bit negative, am I? Okay. This time I will really try. I am looking forward to the day. It is Saturday. The dogs let me sleep in until 7:30. I don't have to see any medical professionals today. The sun is shining. I am looking forward to a fun evening out with the husband. Maybe there's an egg in the chicken coop. My plan for the day is to rip out all of the withering vegetable plants from the garden which will make it look tidy and fertile. (Sometimes I prefer a garden that has nothing in it, to one that is filled with messy, dirty plants.) Tomorrow, good friends are coming to visit.
Saturday, October 8, 2011
Wednesday, September 28, 2011
Phase IV - Life
Last Friday was my last day of radiation. Another milestone passed. This week I have no doctors' appointments. I can't say that my feeling is one of pure joy since there is plenty to worry about if I wanted to. For the most part I have been successful in not focusing on the uncertainty and the 10% chance that there are still some devil cells hiding out, regrouping and steeling themselves for the slaughter. But now that I am not receiving very frequent treatment it may be harder to push those thoughts away. On the other hand, every three weeks for the next seven or eight months I will receive a mini infusion of chemotherapy, and every day for the next five years I will take an oral form of chemotherapy. I will also see my oncologist every six weeks. So my treatment isn't exactly over, which is some comfort.
The one thing that doesn't happen with this cancer is regular CAT scans - at least at this stage. This is a relief. I guess they figure that no good will come from discovering renegade tumors after all this treatment. If those nasty, little cells were able to survive eight months of chemo blasting, we might as well give up since no amount of early detection will save me.
I have my annual physical next week. Remember the jealous internist who was sad about missing all the cancer drama? Well she's making me come in the first week of October. I know it is silly, but I am terrified of that appointment. I am sure she will find a new cancer threat to worry about. Cancer, cancer, cancer. Every health professional on the planet is so eager to find cancer: the internist looks for lumps and tests your blood hoping to find whacked out readings that might suggest there are tumors in your kidneys, your liver, your intestines or your blood. The gynecologist also enjoys finding internal malformations and taking cells out of your personals to look for cancer. The dermatologist looks for god-only-knows what since every blemish on the body looks like cancer to me. Even the dentist likes to do a kind of mammogram of your head to look for tumors in the jaw or some crazy place. There is no limit to the creativity of cancer to find new body parts to chew up. You got to admire it, really. Cancer has every characteristic that my father used to try to grind into me: determination, tenacity, guts, imagination...no wonder it is so successful.
So the question is what to do with this blog. The original idea was to keep you all posted on my progress. Now that the treatment is pretty much done and there is nothing to do but wait to see how long I live, there won't be much to report until something terrible happens, in which case I may not feel like writing about it here. On the other hand, if I don't write this blog you might think I'm dead. You could just assume I am alive until the husband posts an epilogue on the blog. Another option is for me to write occasional, boring updates on my gloriously, humdrum existence. Lets go with the last option...for now.
Thank you all for supporting me through this ordeal. Your help with meals, gifts, companionship and kind words made me feel more lucky than unlucky. Thank you also for reading and commenting on these posts and for letting me know that now and then they made you laugh.
Until the next time I have something to say...
xoxoxox
Saturday, September 17, 2011
The End of a Season
I read a poem every morning, thanks to The Writers Almanac sponsored by American Public Media. Today it was Robert Frost and it caught the mood of what I wanted to write about in this post.
Reluctance
September. The sad music of the nighttime crickets brings back years of memories of lying in my childhood bed the night before the start of a new school year. I felt so sad about the end of summer in those days. I thought of summer as a time when I didn't have to worry about homework and could play with friends any day of the week. It wasn't that I disliked school so much, but that last night before the new school year began I imagined I would feel homesick that next day, that I would miss my mom and swimming and playing "My Side of the Mountain" in the woods. This is a feeling that is ingrained in me. Every September I am haunted by a back-to-school anxiety and "reluctance" even during those few years of my life when the crickets heralded no change to my routine.
So why does the end of summer make me feel so blue? Might it be the loss of long and lazy summer days? That is NOT it. The pace of my summer day is closer to that of a labor camp than that of a day at the beach. Hours spent pulling at the billions of stinkin' weeds which threaten to strangle all living creatures on my property, or dragging two miles of hose around the yard with arms connected to a recently mutilated torso, are enough for me to long for snow-bound, winter days trapped in my office.
Is it the loss of having my darling children near me all day long? Those sweet little voices chiming pleasantly throughout the house atop of summer breezes floating through the window screens? I don't think so. Take for example the greetings I am likely to receive after the daily trip to the grocery store that is required when my voracious offspring are in residence. "Mommy! You forgot to buy that critically important, incredibly exotic, habanero, tequila spiked, roasted chipolte hot sauce I need. I've asked you to buy that five times already!" Or, "Don't tell me you forgot to go that store that is about 20 miles out of your way to buy that bottle of probiotic organisms that costs about $90.00 but that is absolutely critical to maintaining the natural balance of my intestinal microflora?" No, I don't think it is the cheerful family banter that I miss so much.
Perhaps it is the shared pastimes of summer that I miss. Such as when my darlings "share" with me their gigantic towers of laundry that they have been saving up until they have worn their last pair of 13-year old underwear twice. Probably not. I feel like passing out when I see their sheets. My daughter's look like several people were slaughtered with a dull knife in her bed. And my son's look (and smell) like they had been used to clean out the chicken coop.
Could it be the colorful clutter that charmingly adorns their bedrooms and that makes me shudder with repulsion every time I accidentally allow my eyes to shift in their direction when I walk by? Not likely. It took me weeks to remove from their rooms the empty seltzer cans, dirty coffee mugs, shreds of tampon and razor packaging, crumpled sheets of notes on topics like "Dance and Society: 1960 - present" (Jesus, what are we paying for!?) or "World Politics" (huh?), and most horrifying of all, a large, albeit unopened, box of condoms.
So I am reminded of another "poem" of sorts - one perhaps that my daughter might have "danced" to last semester....
One less bell to answer
One less egg to fry
One less man to pick up after
I should be happy
But all I do is cry...
Songwriters: Hal David;Burt Bacharach
Reluctance
Out through the fields and the woods
And over the walls I have wended;
I have climbed the hills of view
And looked at the world and descended;
I have come by the highway home,
And lo, it is ended.
The leaves are all dead on the ground,
Save those that the oak is keeping
To ravel them one by one
And let them go scraping and creeping
Out over the crusted snow,
When others are sleeping.
And the dead leaves lie huddled and still,
No longer blown hither and thither;
The last lone aster is gone;
The flowers of the witch-hazel wither;
The heart is still aching to seek,
But the feet question 'Whither?'
Ah, when to the heart of man
Was it ever less than a treason
To go with the drift of things,
To yield with a grace to reason,
And bow and accept the end
Of a love or a season?
And over the walls I have wended;
I have climbed the hills of view
And looked at the world and descended;
I have come by the highway home,
And lo, it is ended.
The leaves are all dead on the ground,
Save those that the oak is keeping
To ravel them one by one
And let them go scraping and creeping
Out over the crusted snow,
When others are sleeping.
And the dead leaves lie huddled and still,
No longer blown hither and thither;
The last lone aster is gone;
The flowers of the witch-hazel wither;
The heart is still aching to seek,
But the feet question 'Whither?'
Ah, when to the heart of man
Was it ever less than a treason
To go with the drift of things,
To yield with a grace to reason,
And bow and accept the end
Of a love or a season?
September. The sad music of the nighttime crickets brings back years of memories of lying in my childhood bed the night before the start of a new school year. I felt so sad about the end of summer in those days. I thought of summer as a time when I didn't have to worry about homework and could play with friends any day of the week. It wasn't that I disliked school so much, but that last night before the new school year began I imagined I would feel homesick that next day, that I would miss my mom and swimming and playing "My Side of the Mountain" in the woods. This is a feeling that is ingrained in me. Every September I am haunted by a back-to-school anxiety and "reluctance" even during those few years of my life when the crickets heralded no change to my routine.
So why does the end of summer make me feel so blue? Might it be the loss of long and lazy summer days? That is NOT it. The pace of my summer day is closer to that of a labor camp than that of a day at the beach. Hours spent pulling at the billions of stinkin' weeds which threaten to strangle all living creatures on my property, or dragging two miles of hose around the yard with arms connected to a recently mutilated torso, are enough for me to long for snow-bound, winter days trapped in my office.
Is it the loss of having my darling children near me all day long? Those sweet little voices chiming pleasantly throughout the house atop of summer breezes floating through the window screens? I don't think so. Take for example the greetings I am likely to receive after the daily trip to the grocery store that is required when my voracious offspring are in residence. "Mommy! You forgot to buy that critically important, incredibly exotic, habanero, tequila spiked, roasted chipolte hot sauce I need. I've asked you to buy that five times already!" Or, "Don't tell me you forgot to go that store that is about 20 miles out of your way to buy that bottle of probiotic organisms that costs about $90.00 but that is absolutely critical to maintaining the natural balance of my intestinal microflora?" No, I don't think it is the cheerful family banter that I miss so much.
Perhaps it is the shared pastimes of summer that I miss. Such as when my darlings "share" with me their gigantic towers of laundry that they have been saving up until they have worn their last pair of 13-year old underwear twice. Probably not. I feel like passing out when I see their sheets. My daughter's look like several people were slaughtered with a dull knife in her bed. And my son's look (and smell) like they had been used to clean out the chicken coop.
Could it be the colorful clutter that charmingly adorns their bedrooms and that makes me shudder with repulsion every time I accidentally allow my eyes to shift in their direction when I walk by? Not likely. It took me weeks to remove from their rooms the empty seltzer cans, dirty coffee mugs, shreds of tampon and razor packaging, crumpled sheets of notes on topics like "Dance and Society: 1960 - present" (Jesus, what are we paying for!?) or "World Politics" (huh?), and most horrifying of all, a large, albeit unopened, box of condoms.
So I am reminded of another "poem" of sorts - one perhaps that my daughter might have "danced" to last semester....
One less bell to answer
One less egg to fry
One less man to pick up after
I should be happy
But all I do is cry...
Songwriters: Hal David;Burt Bacharach
Tuesday, August 30, 2011
Phase III - Radiation
My chemo experience includes sitting in a chair that looks like something you might test drive at a Brookstone store in the mall, complete with massage functions and heat. The minute I sit down, the staff gently covers me with a heated blanket. Volunteers come round to offer reading materials, snacks and drinks. While I sit enjoying the heated massage, I read an absorbing novel, like Ann Patchett's State of Wonder, for example, which takes me far away to a land without cancer, needles, chemicals, death (well, perhaps I could have picked a better example than a book about human subjects experimentation, but you get the point...). From an upper floor of the hospital I have a million dollar view of the Boston skyline through clear, enormous windows. Now and then someone comes by to check on me, or to switch the bags of medicine (I no longer think of it as poison - how can I?) It's a little like flying first class. You don't really want to be spending all this time cooped up in an airplane, but if you have to do it, it's nice be treated like a VIP.
By contrast, my radiation appointments are in the basement of the hospital, which has me thinking that the stuff they do in that department is so dangerous they need to keep it underground. The procedure requires that I strip down to my waist and put on one of those detestable hospital johnnies. I then sit in a waiting room, along with other ladies wearing ugly johnnies. This part of the ordeal brings back terrifying memories of mammograms. When my name is called, I walk into a dark room with a giant, spooky machine that looks like some kind of prehistoric monster. I lie down on a hard table that has a funny bump in it that my butt is supposed to rest against, but always seems to hit in just the wrong place. There are at least four technicians scurrying around the room officiously. One of them removes the johnny from the part of the body that is going to be radiated. They call out numbers to each other, they jerk my body around to line it up properly. They draw little blue marks all over my skin. They talk and move as if they are conducting a complex military maneuver. Then they all scatter from the room, leaving me to take the "heat" alone.
After the technicians are safe and sound in another room, I hear strange noises that alternate between those associated with the moving machine and those of the radiation beams shooting out, I guess. I'm too freaked out to watch what is going on. I lie there with my eyes closed knowing that parts of me are in the line of fire. I worry that the movement of my chest as I breath will result in collateral damage. I try not to breath. I am so oxygen deprived I feel the need to take a really deep breath but don't. I feel like passing out. And then it is over.
If I were to look on the bright side, however, I appreciate that the treatment itself takes only about 15 to 20 minutes most days. And, so far, I have no side effects, although I am told to expect burnt skin and fatigue.
Yesterday, my treatment was cancelled. The radiation machine was broken. Apparently getting your radiation machine fixed is about as easy as getting your refrigerator fixed. All day long the radiation technicians were calling me giving me updates on the repairs, the likelihood of getting replacement parts, the vagaries of the radiation machine repair people's schedule... In the end, they cancelled my appointment for that day.
The machine was still not fixed this morning. The radiation staff seemed stressed. At 7:00 AM, I got a call from one of the technicians telling me that the machine was still not fixed. I got the impression that it would be super dangerous if I were to miss another day. I started to panic and began thinking that I should look around for another radiation machine that worked. Before I got too far with that strategy, I got a call that the machine was operational, and I should come in. I sped into town, practically starved for my next dose of radiation. Shoot me up, monster machine.
Saturday, August 27, 2011
Post Chemo Milestones
My route includes one very long, very steep hill. Yesterday was the first day that I completed the "run," including the hill, without slowing to a walk (which might be closer to a crawl?) This feels like progress to me. Another step back to my old self.
In other news, I shaved my legs! Yes, my friends, chemotherapy is like Nair for the whole body. But it's marching back in force. Even my head has a bit of fur on it.
Thursday, August 18, 2011
Rare and precious animals
So one reason that I have not been posting lately is that I've been struggling with computer challenges, and before that I had the privilege to be traveling. I want to share a little of our adventures with you.
In July we we went to the Galapagos. Not surprisingly, it was a unique and wonderful experience. As advertised, what makes the Galapagos truly amazing is the fearlessness of the animals.
For example, you can lie on the beach and cuddle up to a sea lion...
You can just about trip over a 150 year old, 1000 pound tortoise.
You can peer at the underside of an albatross and see its newborn.
You can hang out with the Christmas Iguanas...
You can eat lunch with sea lions and pelicans...
Or take pride in completing a steep hike with your mom...
You can wonder at the unfathomable depths of the Pacific ocean and worry about how you might rescue your mother should she fall in it and get caught under a diving porpoise and a zodiac motor.
In July we we went to the Galapagos. Not surprisingly, it was a unique and wonderful experience. As advertised, what makes the Galapagos truly amazing is the fearlessness of the animals.
For example, you can lie on the beach and cuddle up to a sea lion...
You can just about trip over a 150 year old, 1000 pound tortoise.
You can peer at the underside of an albatross and see its newborn.
You can eat lunch with sea lions and pelicans...
 |
| Please sir, may I have some more? |
As a breast cancer patient you can amuse yourself with silly jokes about the blue-footed boobies.
 |
| Or the red-footed ones... |
 |
| Or the multi-colored ones... |
 |
| Or even the barefooted ones.... |
You can coo at a fluffy, baby albatross...
Or take pride in completing a steep hike with your mom...
You can admire the scenery and figure out better ways of disguising your baldness.
You can wonder at the unfathomable depths of the Pacific ocean and worry about how you might rescue your mother should she fall in it and get caught under a diving porpoise and a zodiac motor.
You can boast to your friends about having snorkeled with penguins...if you did...
And occasionally, if you are really lucky, and quiet and savy about approaching the rarest and wildest of the earth's creatures, you can experience exceptional joy and beauty.
Thursday, August 11, 2011
Making it Look Easy
Man! It's been a month since my last post. I have lost all ability to manage my time. It's been a busy month, however, so I hope you'll cut me a little slack. Here is the first in a series of updates. This entry was started about three weeks ago.
On July 20 I had my last, regular chemo infusion. I will continue to receive an infusion of a single "maintenance" drug, they call it, that has no obvious side effects (other than heart failure), every three weeks for another 8 months or so. So we are now on official hair re-growth watch. It will be several weeks before I start to see or feel any improvements. I am looking forward to touching things without feeling an irritating and chafing tingle that sends bristly shivers up my spine. I look forward to losing the yellow color and fungal appearance of my fingers and toes. I imagine having a reduced appetite and increased metabolism off steroids. Oh...and I'm hoping for a cure for my cancer.
My doctors like to tell me that I'm making BC treatment look easy. This comment makes me glow with pride, as if I had done something really remarkable and accomplished. It also makes me feel that every complaint I might feel like expressing would contribute to a lower grade on my cancer report card so I stifle them. This stoicism has its pros and cons. On the pro side, my doctors, my family and my friends tell each other in my hearing how well I am doing, which, of course, makes me feel very well. On the con side, my kids don't clean the dishes.
The logic here is that if I were to act sicker, maybe my kids would do more chores around the house, or treat me with sympathy and kindness.
As it is, my son makes fun of me just like he always has, especially when I try to grab a piece of him for a snuggle. He says things like, "stay away from me you freak," "you look like a mental patient," "you're ugly and you disgust me." Now I know that some of you are appalled by such rudeness and disrespect, but for some reason I find this outrageous rudeness funny. So I laugh and that encourages him to further abuse. But now and then I think I should take some offense as an overweight, bald and bosomless woman about being called ugly and disgusting. I should defend bald, bosomless women the world over against prejudicial outbursts such as these.
My daughter ignores me as usual and continues to have no inhibition about letting me know how idiotic and useless I am as a parent and adviser.
Sometimes I worry that I should be reprimanding my children for their disrespect, and that I should be teaching them humility and empathy. But then I think there is very little I can do anymore to shape the behavior and values of my 19 and 20 year old children, so I sigh, and then one or the other will ask with alarm, "what's wrong? "do you feel okay?" Best to be jocular and make it look easy.
On July 20 I had my last, regular chemo infusion. I will continue to receive an infusion of a single "maintenance" drug, they call it, that has no obvious side effects (other than heart failure), every three weeks for another 8 months or so. So we are now on official hair re-growth watch. It will be several weeks before I start to see or feel any improvements. I am looking forward to touching things without feeling an irritating and chafing tingle that sends bristly shivers up my spine. I look forward to losing the yellow color and fungal appearance of my fingers and toes. I imagine having a reduced appetite and increased metabolism off steroids. Oh...and I'm hoping for a cure for my cancer.
My doctors like to tell me that I'm making BC treatment look easy. This comment makes me glow with pride, as if I had done something really remarkable and accomplished. It also makes me feel that every complaint I might feel like expressing would contribute to a lower grade on my cancer report card so I stifle them. This stoicism has its pros and cons. On the pro side, my doctors, my family and my friends tell each other in my hearing how well I am doing, which, of course, makes me feel very well. On the con side, my kids don't clean the dishes.
The logic here is that if I were to act sicker, maybe my kids would do more chores around the house, or treat me with sympathy and kindness.
As it is, my son makes fun of me just like he always has, especially when I try to grab a piece of him for a snuggle. He says things like, "stay away from me you freak," "you look like a mental patient," "you're ugly and you disgust me." Now I know that some of you are appalled by such rudeness and disrespect, but for some reason I find this outrageous rudeness funny. So I laugh and that encourages him to further abuse. But now and then I think I should take some offense as an overweight, bald and bosomless woman about being called ugly and disgusting. I should defend bald, bosomless women the world over against prejudicial outbursts such as these.
My daughter ignores me as usual and continues to have no inhibition about letting me know how idiotic and useless I am as a parent and adviser.
Sometimes I worry that I should be reprimanding my children for their disrespect, and that I should be teaching them humility and empathy. But then I think there is very little I can do anymore to shape the behavior and values of my 19 and 20 year old children, so I sigh, and then one or the other will ask with alarm, "what's wrong? "do you feel okay?" Best to be jocular and make it look easy.
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