I admit it, I was nervous. Because much as I try to tell myself, "Everything's FINE, everything's FINE," you never really know, you know?
Everything's fine. I have documentation!
And the NP for my oncologist says that the Cancer Institute radiologists are very, very conservative. So, if they don't want to see me in a year, that's because there's nothing to look at.
Next up is probably knee surgery, but that's a whole 'nother subject, and not for here. I need to find a way to archive this little history away from Google, so it will be preserved in digital amber, for future reference.
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Thursday, July 26, 2012
Monday, June 25, 2012
June is bustin' out all over...
For starters, here's the hair...
I'm going to have to get someone to help me with a side view. It's very much the same colors as before -- white up front, dark grey on top, brown in back.
And very, very curly. I took this picture the day after the first real hair-cut, and it's grown at least another inch in the past 3 weeks.
Other things have really changed as well.
Part of the purpose behind this blog is so that if my friends or friends of friends have someone dealing with breast cancer, they can at least hear from one other person about it. I don't think I'm typical, but congruent experience can help one feel less alone.
So, it's time to write about how my left breast has changed.
I've always been lop-sided (most women are), and the left breast has always been the larger of the pair. Now, it is more so. The texture of the skin that's grown back after the radiation is slightly different. The scars are barely visible, but they are there. And sometimes I have pain at the surgery point (usually when I've been wearing one of my more "uplifing" bras, as this seems to stretch the internal scar).
The pain is sometimes quite sharp. I'm very glad I was warned about it, or I might mistake it for something else.
The bottom of the breast is quite lumpy. It feels as though hard and heavy things have settled through the mush. Again, I am told this is normal.
More disturbing is the way my skin looks -- it's all puffed and swollen, with little dimples where the pores are -- kind of like chicken skin with the pinfeather points. Every individual cell is swollen. I understand this can take 10 years to clear up. It's disturbing because it looks very, very wrong, not like a breast at all, but some new and non-attractive thing.
In summary: When the tell you that you can "save" your breast, they should perhaps think more about "exchanges."
I'm going to have to get someone to help me with a side view. It's very much the same colors as before -- white up front, dark grey on top, brown in back.
And very, very curly. I took this picture the day after the first real hair-cut, and it's grown at least another inch in the past 3 weeks.
Other things have really changed as well.
Part of the purpose behind this blog is so that if my friends or friends of friends have someone dealing with breast cancer, they can at least hear from one other person about it. I don't think I'm typical, but congruent experience can help one feel less alone.
So, it's time to write about how my left breast has changed.
I've always been lop-sided (most women are), and the left breast has always been the larger of the pair. Now, it is more so. The texture of the skin that's grown back after the radiation is slightly different. The scars are barely visible, but they are there. And sometimes I have pain at the surgery point (usually when I've been wearing one of my more "uplifing" bras, as this seems to stretch the internal scar).
The pain is sometimes quite sharp. I'm very glad I was warned about it, or I might mistake it for something else.
The bottom of the breast is quite lumpy. It feels as though hard and heavy things have settled through the mush. Again, I am told this is normal.
More disturbing is the way my skin looks -- it's all puffed and swollen, with little dimples where the pores are -- kind of like chicken skin with the pinfeather points. Every individual cell is swollen. I understand this can take 10 years to clear up. It's disturbing because it looks very, very wrong, not like a breast at all, but some new and non-attractive thing.
In summary: When the tell you that you can "save" your breast, they should perhaps think more about "exchanges."
Monday, May 28, 2012
The Boobeaucracy is Unbelievable.
You'd think, would you not, that I was not going to have much trouble with the Boobeaucracy except at regularly-stated intervals, would you not?
And you would be wrong.
First, billings. There was a bill (which I paid) for my recent visit to Dana-Farber to see my surgeon for the final post-surgical follow-up this year. Fine.
And then there was another bill, from the hospital where the surgery was performed, because my surgeon does her surgery there.
Mind you, the hospital did nothing -- not one thing -- to make this visit possible. It wasn't held in their building. Their resources were not used for scheduling it. Her time was not taken up when she could have been in surgery, as this appointment was during one of her standard clinics. The hospital did nothing. But since she did the surgery at their hospital, they get to bill me for a follow-up. And, to pile Pelion on Ossa (look it up, look it up), they billed me as if this was just an additional bill from last August that had somehow been missing since then. No record anywhere on the bill that this was for the follow-up. I had to call to figure that out.
This is the first time in the whole farrago of bills that I have been billed by one facility for receiving services at another facility. The only resources I used from Brigham and Women's Hospital were the computing, printing, envelop-stuffing, and postage required to send out the bill. This seems to have justified a bill of more than $100 dollars, of which I am paying $27.50.
AND THEN!
CVS Caremark, who recently took over the contract for the Federal Employees Benefit Program's Special Pharmacy, called today -- yes, on Memorial Day -- to find out if I was still taking Neulasta. The person calling didn't know what the drug was for, only that it was an expensive injectable. I clearly explained that there was no way I was taking Neulasta for nine months because that much chemotherapy would kill an elephant, and she said, "Then I'll close the account."
Right. Because no one can write a computer program to look at open accounts and pull ones that look funny for review by a human, another whole group of humans are working overtime on a holiday weekend and billing the government for their time.
Which means I (and you, if you pay taxes) just paid for this foolishness. It's enough to make a person really rather annoyed!
And you would be wrong.
First, billings. There was a bill (which I paid) for my recent visit to Dana-Farber to see my surgeon for the final post-surgical follow-up this year. Fine.
And then there was another bill, from the hospital where the surgery was performed, because my surgeon does her surgery there.
Mind you, the hospital did nothing -- not one thing -- to make this visit possible. It wasn't held in their building. Their resources were not used for scheduling it. Her time was not taken up when she could have been in surgery, as this appointment was during one of her standard clinics. The hospital did nothing. But since she did the surgery at their hospital, they get to bill me for a follow-up. And, to pile Pelion on Ossa (look it up, look it up), they billed me as if this was just an additional bill from last August that had somehow been missing since then. No record anywhere on the bill that this was for the follow-up. I had to call to figure that out.
This is the first time in the whole farrago of bills that I have been billed by one facility for receiving services at another facility. The only resources I used from Brigham and Women's Hospital were the computing, printing, envelop-stuffing, and postage required to send out the bill. This seems to have justified a bill of more than $100 dollars, of which I am paying $27.50.
AND THEN!
CVS Caremark, who recently took over the contract for the Federal Employees Benefit Program's Special Pharmacy, called today -- yes, on Memorial Day -- to find out if I was still taking Neulasta. The person calling didn't know what the drug was for, only that it was an expensive injectable. I clearly explained that there was no way I was taking Neulasta for nine months because that much chemotherapy would kill an elephant, and she said, "Then I'll close the account."
Right. Because no one can write a computer program to look at open accounts and pull ones that look funny for review by a human, another whole group of humans are working overtime on a holiday weekend and billing the government for their time.
Which means I (and you, if you pay taxes) just paid for this foolishness. It's enough to make a person really rather annoyed!
Monday, May 7, 2012
May brings out the cows...
... and they all lick my head.
(Note to self: I really, really need some better lighting in here.)
This is after a hard day of head-rubbing, hair-tearing, and other work-related nonsense; also some power napping, cat nuzzling and other, less stressful activities. But still -- yes, very curly and without much direction. In back, where I can't take a picture, it could almost be described as what we used to call a Jew-fro.
Also, remember how I looked a lot like my mom? For reasons I'm not entirely clear on -- it's not just because the hair is off my face -- I now look much more like my dad.
More thoughts on breast changes to follow.
(Note to self: I really, really need some better lighting in here.)
This is after a hard day of head-rubbing, hair-tearing, and other work-related nonsense; also some power napping, cat nuzzling and other, less stressful activities. But still -- yes, very curly and without much direction. In back, where I can't take a picture, it could almost be described as what we used to call a Jew-fro.
Also, remember how I looked a lot like my mom? For reasons I'm not entirely clear on -- it's not just because the hair is off my face -- I now look much more like my dad.
More thoughts on breast changes to follow.
Monday, April 16, 2012
April, come she will....
My hair suddenly decided to abandon half measures.
Yes, it looks like seventeen cows have been licking it. But! Brown is back!
Yes, it looks like seventeen cows have been licking it. But! Brown is back!
Friday, April 6, 2012
In which it is possibly explained why people call me "Upbeat"
Well, you know how it is. You find out you have a life-threatening illness, and you have to annouce it to your friends.
I was reading over some old emails prior to deleting them, and found that this is how I had announced TWCT to a friend who is an Episcopal priest (but hasn't found a place to exercise that priesthood since moving to New Mexico):
" Hi,
First, thank you for your long and newsy letter. I understand – not as fully as you live it, but I do understand – what it is to have a sense of unrealized priesthood. Lately, the desire to preach is on me again, not that our priest isn’t good at it, but I have Thoughts.
Or I had thoughts. Since the 17th, they’ve all been focused on one thing. I have breast cancer.
I never expected to live a long time, but I was really hoping for heart disease. Of course, I may beat this and emerge a curly-haired blonde. I’ve already decided that since I have the most beautiful middle-aged hair on the planet, and since anything less would make me very sad, I am going either with bandanas or really cheesy wigs in colors like bright green. But not pink. The first person to pin a pink ribbon on me is getting a punch in the eye."
My hatred for pink is undiminished. But this also made me realize that "someone is getting a punch in the eye," has pretty much characterized my approach to dealing with the Boobeaucracy. And you know, while it may have been a bit hard on some of the people who had the misfortune to get in my way and some of them may not have deserved it, on the whole it wasn't a bad approach.
Except for one thing. I have already told the Bravest Man Alive loudly, vociferously, repeatedly, and with great variety that any obit for me is never, ever, EVER going to say, "after a long battle with cancer." It may say, "died, after a long battle with what she called the Boobeaucracy, from cancer."
I will most certainly end up dead. But I will never be defeated.
(And no, I haven't had any bad news. Just... going through a few things, is all.)
I was reading over some old emails prior to deleting them, and found that this is how I had announced TWCT to a friend who is an Episcopal priest (but hasn't found a place to exercise that priesthood since moving to New Mexico):
" Hi,
First, thank you for your long and newsy letter. I understand – not as fully as you live it, but I do understand – what it is to have a sense of unrealized priesthood. Lately, the desire to preach is on me again, not that our priest isn’t good at it, but I have Thoughts.
Or I had thoughts. Since the 17th, they’ve all been focused on one thing. I have breast cancer.
(This space reserved for a variety of highly mixed emotions)
I won’t dump all the medicalese on you. [Her spouse] can do that if
he wants, and you want. Suffice to say that my choices (oy, such choices!) are
between a lumpectomy followed by chemo and radiation, or depending on some
genetic stuff they are now doing, a double mastectomy and ovary removal.
I never expected to live a long time, but I was really hoping for heart disease. Of course, I may beat this and emerge a curly-haired blonde. I’ve already decided that since I have the most beautiful middle-aged hair on the planet, and since anything less would make me very sad, I am going either with bandanas or really cheesy wigs in colors like bright green. But not pink. The first person to pin a pink ribbon on me is getting a punch in the eye."
My hatred for pink is undiminished. But this also made me realize that "someone is getting a punch in the eye," has pretty much characterized my approach to dealing with the Boobeaucracy. And you know, while it may have been a bit hard on some of the people who had the misfortune to get in my way and some of them may not have deserved it, on the whole it wasn't a bad approach.
Except for one thing. I have already told the Bravest Man Alive loudly, vociferously, repeatedly, and with great variety that any obit for me is never, ever, EVER going to say, "after a long battle with cancer." It may say, "died, after a long battle with what she called the Boobeaucracy, from cancer."
I will most certainly end up dead. But I will never be defeated.
(And no, I haven't had any bad news. Just... going through a few things, is all.)
Tuesday, March 27, 2012
Surgical follow-up / Hair update
You know, sometimes I like to think I'm a smart person, and then...
Since I had an appointment at 9:30 this morning (yesterday, now) at Dana-Farber, we thought we'd go out to breakfast in the area. It took me two days to figure out that the reason there aren't any good breakfast places near the hospitals is that all the hospitals have cafeterias. ~_~
Anyway, the Dining Pavilion at Dana-Farber has very nice corn muffins. And the surgeon doesn't want to see me for a year!
Also, by popular demand, March Hair with Spit-Curl.
Since I had an appointment at 9:30 this morning (yesterday, now) at Dana-Farber, we thought we'd go out to breakfast in the area. It took me two days to figure out that the reason there aren't any good breakfast places near the hospitals is that all the hospitals have cafeterias. ~_~
Anyway, the Dining Pavilion at Dana-Farber has very nice corn muffins. And the surgeon doesn't want to see me for a year!
Also, by popular demand, March Hair with Spit-Curl.
Sunday, March 18, 2012
First HAIRCUT!
The Bravest Man Alive gets his hair cut every six or seven weeks. When we first got married, I was a Wild Thing -- No one was gonna touch this magnificent mane, nossirree! But then, his usual barber was closed one week, and we wandered into Irina's, a salon owned by a Russian lady.
Who gave him a really great haircut.
I watched Irina cut hair for a solid six months before I let her touch mine. I'd had a really bad experience with a Brookline hair salon early in our life there, and I was sick and tired of people letting out their artistic visions on my head. (Also, I don't drink in the daytime, and the mild discussions about family and vacation spots I hold with hair stylists could barely be called gossip, so the wine-and-celebrity-trash-talk scene was unappealing.) When I finally sat down in Irina's chair, she went at my head like a contractor who's just been waiting for the final bit of paperwork. Clearly, she'd had a plan in mind for months.
The results were pleasing, and I've worn my hair on the shortish side ever since. It worked because I have (or had) very "Russian" hair, thick and wavy.
Fast forward 13 years and we're settling into our new home in Malden. Obviously, schlepping to Brookline was not feasible, so we began shopping around. Unfortunately, Malden and the surrounding towns are full of places devoted to big, puffy 'dos in unlikely colors on people who are significantly older than I am. So, I asked a church friend whose hair I admired for a referral.
Enter The Hair Cafe.
The Hair Cafe would be an impossibility in Boston. It's huge. It takes up the entire second floor of a major business block in downtown Malden. And it's staffed entirely by kindly ladies (old and young) who keep track of birthdays, decorate the place for every holiday, and serve coffee and cookies to all comers.
I wouldn't trust most of the stylists anywhere near my head (see comment about big hair and unlikely colors, above), but Debbie is different. She's not into trying to make my head into an artifact. And yesterday, yesterday, she applied scissors for the first time to my "after hair". I was getting a Kewpie-doll cowlick on top. She also gave me good advice about managing the hair while it grows out -- comb most of it straight back as I used to do, but comb the edges right around my face forward.
And, sure enough, people at church could not stop talking about my hair. It was kind of bewildering to hear about how cute and curly it was, until I got home and discovered that the hair which was wet when I left the house had formed itself into perfect Betty Boop spit curls around my cheeks and eyebrows.
Who gave him a really great haircut.
I watched Irina cut hair for a solid six months before I let her touch mine. I'd had a really bad experience with a Brookline hair salon early in our life there, and I was sick and tired of people letting out their artistic visions on my head. (Also, I don't drink in the daytime, and the mild discussions about family and vacation spots I hold with hair stylists could barely be called gossip, so the wine-and-celebrity-trash-talk scene was unappealing.) When I finally sat down in Irina's chair, she went at my head like a contractor who's just been waiting for the final bit of paperwork. Clearly, she'd had a plan in mind for months.
The results were pleasing, and I've worn my hair on the shortish side ever since. It worked because I have (or had) very "Russian" hair, thick and wavy.
Fast forward 13 years and we're settling into our new home in Malden. Obviously, schlepping to Brookline was not feasible, so we began shopping around. Unfortunately, Malden and the surrounding towns are full of places devoted to big, puffy 'dos in unlikely colors on people who are significantly older than I am. So, I asked a church friend whose hair I admired for a referral.
Enter The Hair Cafe.
The Hair Cafe would be an impossibility in Boston. It's huge. It takes up the entire second floor of a major business block in downtown Malden. And it's staffed entirely by kindly ladies (old and young) who keep track of birthdays, decorate the place for every holiday, and serve coffee and cookies to all comers.
I wouldn't trust most of the stylists anywhere near my head (see comment about big hair and unlikely colors, above), but Debbie is different. She's not into trying to make my head into an artifact. And yesterday, yesterday, she applied scissors for the first time to my "after hair". I was getting a Kewpie-doll cowlick on top. She also gave me good advice about managing the hair while it grows out -- comb most of it straight back as I used to do, but comb the edges right around my face forward.
And, sure enough, people at church could not stop talking about my hair. It was kind of bewildering to hear about how cute and curly it was, until I got home and discovered that the hair which was wet when I left the house had formed itself into perfect Betty Boop spit curls around my cheeks and eyebrows.
Thursday, March 15, 2012
First follow-up!
Today we rose before dawn, ate breakfast, and I took off through the early rush-hour traffic to Dana-Farber, where I barely had time to fasten on my radio-tracking button before I was led to an examination room.
Dr. Lin is friendly, fast, and thorough. She tells me that in the next couple of months the left breast, as the radiation-induced swelling declines, may feel lumpy or uneven -- good to know, as otherwise I might be freaking out.
Otherwise, nothing. I can come back in July for a mammogram and a visit with the nurse practitioner. I will be seeing one or the other of them, alternately, every six months for about three years, then just annually, then... not.
In other words, I am as cured as I can be at this point. A trip next Tuesday to let the surgeon admire her handiwork, and I am DONE. Or done-ish. Or something.
It's never really over. I can't call myself a cancer survivor unless I die of something else. Not that this depresses me, mind you! I always wanted something more than "She was a survivor" as my epitaph, and now I have more of a chance to earn something more interesting.
And I will, because as I was checking out, I asked if I could go see the people in the Patient Advocate office. The nice woman at the check-out desk couldn't find their location in her directory. She sent me to the Patient and Family Services office (home of the Volunteer Coordinator), but that wasn't the right place -- and though I did obtain the Patient Advocate phone number there, I was not told where they were located.
I did, however, find out that there is a Patient Advisory council. They like you to be out of treatment for six months to a year before you join it, so that you'll have a sense of objectivity again (instead of being an object). But if they think that's going to make me less persistant about fixing some of these systemic things, they have another think coming. I may not be steaming from both ears and the top of my head any more, but I still have all my notes!
Dr. Lin is friendly, fast, and thorough. She tells me that in the next couple of months the left breast, as the radiation-induced swelling declines, may feel lumpy or uneven -- good to know, as otherwise I might be freaking out.
Otherwise, nothing. I can come back in July for a mammogram and a visit with the nurse practitioner. I will be seeing one or the other of them, alternately, every six months for about three years, then just annually, then... not.
In other words, I am as cured as I can be at this point. A trip next Tuesday to let the surgeon admire her handiwork, and I am DONE. Or done-ish. Or something.
It's never really over. I can't call myself a cancer survivor unless I die of something else. Not that this depresses me, mind you! I always wanted something more than "She was a survivor" as my epitaph, and now I have more of a chance to earn something more interesting.
And I will, because as I was checking out, I asked if I could go see the people in the Patient Advocate office. The nice woman at the check-out desk couldn't find their location in her directory. She sent me to the Patient and Family Services office (home of the Volunteer Coordinator), but that wasn't the right place -- and though I did obtain the Patient Advocate phone number there, I was not told where they were located.
I did, however, find out that there is a Patient Advisory council. They like you to be out of treatment for six months to a year before you join it, so that you'll have a sense of objectivity again (instead of being an object). But if they think that's going to make me less persistant about fixing some of these systemic things, they have another think coming. I may not be steaming from both ears and the top of my head any more, but I still have all my notes!
Monday, February 6, 2012
Radiology follow-up
Today was the radiology follow-up. And the radiologist doesn't want to see me for a whole year! My skin looks great, I have to watch out for sunburn, take it easy with the left arm, and let her know if anything changes. "Anything" means a sudden increase in breast density, a sudden decrease in breast size (as if!), pain in the chest wall, constant coughing (and how I'm supposed to tell this apart from my regular constant coughing, I don't know), or, God forbid, a heart attack.
Unfortunately, she also told me that all my doctors at Dana-Farber were notified that my treatment was complete nearly a month ago, and none of them have contacted me about follow-up. So I made some calls. I have one appointment set up with the surgeon at 7:30 AM (EEK) on March 20th, and the oncologist's admin should call me back soon.
Which had better be tomorrow, or the patient advocate at D-F will be hearing from me again.
Oh yes -- new picture, this time with actual hair. It's coming in silver on the sides and dark on top, but the lighting in my study doesn't show the dark hair well. I went without a hat to church yesterday, and most everyone was flattering.
And I think it's true that, as I've noticed when looking at pictures in a Mennonite friend's high school yearbook, or the faces of nuns, or even the faces of observant Muslim women -- when the eye is not distracted by hair, you can really see the person in the face. Not that my face is particularly lovely, but it doesn't need to be.
Unfortunately, she also told me that all my doctors at Dana-Farber were notified that my treatment was complete nearly a month ago, and none of them have contacted me about follow-up. So I made some calls. I have one appointment set up with the surgeon at 7:30 AM (EEK) on March 20th, and the oncologist's admin should call me back soon.
Which had better be tomorrow, or the patient advocate at D-F will be hearing from me again.
Oh yes -- new picture, this time with actual hair. It's coming in silver on the sides and dark on top, but the lighting in my study doesn't show the dark hair well. I went without a hat to church yesterday, and most everyone was flattering.
And I think it's true that, as I've noticed when looking at pictures in a Mennonite friend's high school yearbook, or the faces of nuns, or even the faces of observant Muslim women -- when the eye is not distracted by hair, you can really see the person in the face. Not that my face is particularly lovely, but it doesn't need to be.
Sunday, January 29, 2012
Status Report / New Acronym
So, last things first. I am now going to be referring to the past 7+ months as This Whole Cancer Thing, or TWCT.
As for the skin, it is much improved. There is still this teeeeeeny red area, and I am still glooping it, because when I stop various seams and edgings rub it in an uncomfortable way. But for most of the day, I don't even think about it.
As for me, well, I am discovering the difference between "having a functioning immune system" and "having an immune system that works in a body with little to no actual resistance." I am on antibiotics again, for the sinuses, and a steriodal nasal spray as well. It's just going to take a while before that part of this human system is fully armed again.
Follow-up visit with the radiologist is set for 2/6!
As for the skin, it is much improved. There is still this teeeeeeny red area, and I am still glooping it, because when I stop various seams and edgings rub it in an uncomfortable way. But for most of the day, I don't even think about it.
As for me, well, I am discovering the difference between "having a functioning immune system" and "having an immune system that works in a body with little to no actual resistance." I am on antibiotics again, for the sinuses, and a steriodal nasal spray as well. It's just going to take a while before that part of this human system is fully armed again.
Follow-up visit with the radiologist is set for 2/6!
Tuesday, January 10, 2012
Oww Again
I was back at the clinic today, because the skin under my arm has turned into a red and weeping ooze that sticks to everything, including me, making crusts that I tear off whenever I move. Which made me realize, once again, that health care professionals are different from other folks.
"It looks great!" said the nurse and the doctor, as they scanned the four-inch-square area of sticky, shiny, redness. "You're keeping it really clean." The greenish gop on the pad I'd been wearing? Totally normal. The white, pimply dots? New skin cells trying to grow.
I am to keep it as moist as possible for the next week. This includes wearing a bra to bed to hold all the various layers of "product" in place. And I have chucks to lie on, so I don't totally wreck the sheet and mattress pad. It should be much improved by next week, when I am to go again.
I have faith, because the rest of me is, in fact, much improved. But it does hurt, and the ointment and pads don't really help all that much.
Which brings a somber thought. The radiation burns and the weariness I am dealing with are as less than nothing compared to what happened to the people of Hiroshima and Nagasaki who survived the initial blast. Many sides to that thought...
"It looks great!" said the nurse and the doctor, as they scanned the four-inch-square area of sticky, shiny, redness. "You're keeping it really clean." The greenish gop on the pad I'd been wearing? Totally normal. The white, pimply dots? New skin cells trying to grow.
I am to keep it as moist as possible for the next week. This includes wearing a bra to bed to hold all the various layers of "product" in place. And I have chucks to lie on, so I don't totally wreck the sheet and mattress pad. It should be much improved by next week, when I am to go again.
I have faith, because the rest of me is, in fact, much improved. But it does hurt, and the ointment and pads don't really help all that much.
Which brings a somber thought. The radiation burns and the weariness I am dealing with are as less than nothing compared to what happened to the people of Hiroshima and Nagasaki who survived the initial blast. Many sides to that thought...
Friday, January 6, 2012
ONE!
Today, as I drove home from my last radiation treatment, the sky was a bright, BRIGHT Pepto-Bismol pink and Kool-Aid purple, the kind of garish display only the Almighty can get away with. And I was glad to have that be the only kind of pink in my life.
Previously, I lay for the last time under the blank gaze of the Varian Clinac machine, got a nice certificate from the technicians, and was showered with confetti. I brought them goodies from Whole Foods, and a smaller selection to share with my fellow zappees. I have follow-up appointments, but no more treatments.
No.More.Treatments.
And earlier this morning, I saw a surgeon at Brigham and Women's. I do not need surgery. It turns out that very few of these small hernias give trouble. I've probably had it for some time and not noticed it. I can do anything, eat anything, go anywhere... and come back if it gives me trouble.
We celebrated with hot chocolate and rum.
I don't know what my oncologist wants for a follow-up regimen, but that's also just a follow-up. I am not closing this blog yet, as I want to get through a couple of months while the billing settles down, but...
No. More. Treatments. No. More. Surgery.
It's hard to describe the relief. I feel as if vast amounts of time have been returned to me, not to mention spring, summer, fall, and winter.
(For those who asked, I have no follow-up chemo. That's for you folks with hormonally responsive tumors. I got the brutal ride up front; alas, you get the long slog of less difficult but still, not trouble-free daily medication.)
Previously, I lay for the last time under the blank gaze of the Varian Clinac machine, got a nice certificate from the technicians, and was showered with confetti. I brought them goodies from Whole Foods, and a smaller selection to share with my fellow zappees. I have follow-up appointments, but no more treatments.
No.More.Treatments.
And earlier this morning, I saw a surgeon at Brigham and Women's. I do not need surgery. It turns out that very few of these small hernias give trouble. I've probably had it for some time and not noticed it. I can do anything, eat anything, go anywhere... and come back if it gives me trouble.
We celebrated with hot chocolate and rum.
I don't know what my oncologist wants for a follow-up regimen, but that's also just a follow-up. I am not closing this blog yet, as I want to get through a couple of months while the billing settles down, but...
No. More. Treatments. No. More. Surgery.
It's hard to describe the relief. I feel as if vast amounts of time have been returned to me, not to mention spring, summer, fall, and winter.
(For those who asked, I have no follow-up chemo. That's for you folks with hormonally responsive tumors. I got the brutal ride up front; alas, you get the long slog of less difficult but still, not trouble-free daily medication.)
Thursday, January 5, 2012
Three and Two!
I saw a doctor yesterday. My skin looks to me like it's a mess, and it certainly feels messy, but they continue to be rather pleased.
Things I learned:
Yesterday there was the same problem with getting the positioning right, but this time everything went well. Some of my fellow zappees are begging me to bring in champagne tomorrow, and I just might see about it!
I will be having a follow-up visit in a couple of weeks to check the skin, and there's still all the hernia stuffs, and I have to have a review by my medical onc, so it's not "over" yet. But, unlike many others, I have no more chemo to do. Whew.
Things I learned:
- Once things heal up, my skin will continue to flake and itch for about two months. This means I will be applying heavy-duty moisturizer for all that time, in order to not look like a gorilla with fleas. Joy. But, on the other hand, things should stop hurting fairly soon (though they can worsten as the skin continues to react to the radiation). JOY!
- Even though my skin will eventually look just fine, it is deeply, deeply damaged. Sunburn will be like having radiation all over again, with breakdown, peeling, etc. To be avoided at nearly any cost.
Yesterday there was the same problem with getting the positioning right, but this time everything went well. Some of my fellow zappees are begging me to bring in champagne tomorrow, and I just might see about it!
I will be having a follow-up visit in a couple of weeks to check the skin, and there's still all the hernia stuffs, and I have to have a review by my medical onc, so it's not "over" yet. But, unlike many others, I have no more chemo to do. Whew.
Tuesday, January 3, 2012
Countdown: Five and Four!
I didn't post yesterday because of a slight contretemps.
Yesterday morning, as I was performing my ablutions, I noticed a small, puffy, blobby thing just within the wall of my navel. Some mad scrambling was required to 1) book an appointment with the Urgent Care people for my health plan, since it was a holiday, and 2) re-schedule the zapping so I could do both things.
The result, confirmed today by my PCP: I have a small umbilical hernia. So much for "no health crises in 2012". It will require surgical repair, so I am seeing a surgeon on Friday. Turns out that the small ones are more dangerous than the large ones -- the large ones can usually be manipulated back where they belong and the abdominal wall just closes up, but the small ones are in danger of strangulation, which is just as nasty as it sounds.
Thank God my mother, who was a nurse, told me about all this stuff.
I must admit that initially, discovering the hernia really, really distressed me. This is because the way my mother's progression towards death began was with abdominal surgery to remove an impaction; in the process and unbeknownst to them, the surgeons removed a very small tumor. That tumor turned out to be the "master tumor" that was inhibiting the growth of a whole slew of other tiny tumors outside her bowel, caused by a bout of ulcerative colitus when she was a teenager.
I don't have any of that, and this surgery is most likely a minor day surgery. But for a few moments there the boat of my soul was adrift, as the ancient writers have it.
However, those moments are past. The good news is that the doctors agree the surgery can wait until I am done with the zaps, so at least one problem will be resolved before the next commences.
The zap yesterday went forward without incident. The zap today was more complex. For some reason, there were issues getting the machine to understand that I was placed properly, and then they had to take the weekly positioning pictures, so I spent about 20 minutes on the table and kept four people waiting behind me. I do hope the last three are less interesting.
I've had quite a bit of peeling under the arm, but it looks a bit better -- lots of new skin.
And tomorrow I am actually going to try and go into work and work a half-day!
Yesterday morning, as I was performing my ablutions, I noticed a small, puffy, blobby thing just within the wall of my navel. Some mad scrambling was required to 1) book an appointment with the Urgent Care people for my health plan, since it was a holiday, and 2) re-schedule the zapping so I could do both things.
The result, confirmed today by my PCP: I have a small umbilical hernia. So much for "no health crises in 2012". It will require surgical repair, so I am seeing a surgeon on Friday. Turns out that the small ones are more dangerous than the large ones -- the large ones can usually be manipulated back where they belong and the abdominal wall just closes up, but the small ones are in danger of strangulation, which is just as nasty as it sounds.
Thank God my mother, who was a nurse, told me about all this stuff.
I must admit that initially, discovering the hernia really, really distressed me. This is because the way my mother's progression towards death began was with abdominal surgery to remove an impaction; in the process and unbeknownst to them, the surgeons removed a very small tumor. That tumor turned out to be the "master tumor" that was inhibiting the growth of a whole slew of other tiny tumors outside her bowel, caused by a bout of ulcerative colitus when she was a teenager.
I don't have any of that, and this surgery is most likely a minor day surgery. But for a few moments there the boat of my soul was adrift, as the ancient writers have it.
However, those moments are past. The good news is that the doctors agree the surgery can wait until I am done with the zaps, so at least one problem will be resolved before the next commences.
The zap yesterday went forward without incident. The zap today was more complex. For some reason, there were issues getting the machine to understand that I was placed properly, and then they had to take the weekly positioning pictures, so I spent about 20 minutes on the table and kept four people waiting behind me. I do hope the last three are less interesting.
I've had quite a bit of peeling under the arm, but it looks a bit better -- lots of new skin.
And tomorrow I am actually going to try and go into work and work a half-day!
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