Old friends, Wanda and Vicki, are here to visit for the weekend. It's unlikely I'll do any blogging this weekend.
I haven't heard from the surgeon yet and don't know when the surgery will be. I hope I'll have at least a week. My sister Cheryl and her daughter Lisa are coming this way to see her other daughter, April, and the new baby. I'd like to be able to visit with them too.
The good thing that happened yesterday: I got a really sweet note from my niece, Cait, and a picture of her beautiful family. Hope to see that adorable baby girl in person soon.
Saturday, July 23, 2005
Friday, July 22, 2005
And the Answer is...
They did a mammogram and then an ultrasound, just like before. After the ultrasound was done the radiologist came in the room and said, in an accent I couldn't quite identify (German maybe?), "Well it has shrunk considerably since the last time you were here! It's more than two-thirds smaller."
"Can he see it well enough to do a lumpectomy?"
"Oh yes, Dr. Marler will have no trouble, using either mammogram or ultrasound."
I think she said it was 11.1mm. I was surprised she told me anything, but I had told both technicians I was hoping to find out there was enough left of the lump to do a lumpectomy. It was actually bigger than I expected, but maybe that'll mean "clear margins" and there won't be the question of whether he gets all of it. That was the main argument by the onc on why I should have a mastectomy.
Now I wait for the surgeon's office to call to find out if he agrees with the radiologist and when the surgery will happen.
I've been looking in the mirror when I get out of the shower and I laugh every time at the fuzz/hair sticking up on my head. I finally realized why it looks so funny. Have you ever seen a baby orangutang?
"Can he see it well enough to do a lumpectomy?"
"Oh yes, Dr. Marler will have no trouble, using either mammogram or ultrasound."
I think she said it was 11.1mm. I was surprised she told me anything, but I had told both technicians I was hoping to find out there was enough left of the lump to do a lumpectomy. It was actually bigger than I expected, but maybe that'll mean "clear margins" and there won't be the question of whether he gets all of it. That was the main argument by the onc on why I should have a mastectomy.
Now I wait for the surgeon's office to call to find out if he agrees with the radiologist and when the surgery will happen.
I've been looking in the mirror when I get out of the shower and I laugh every time at the fuzz/hair sticking up on my head. I finally realized why it looks so funny. Have you ever seen a baby orangutang?
Thursday, July 21, 2005
Mammogram Day
Boob squishing today. I'm hoping to get the tech to tell me if she sees anything on the mammogram, but I know she won't. They never tell you anything. I'll just have to wait to get the call from the surgeon's office after they get the report.
I'm feeling a lot more like myself these last few days. I'm starting to talk like myself, walk like myself (well, not really with the balloon feet and all), and look like... hmm, actually I look pretty funny with the fuzz/hair sticking straight up on my head. It's getting longer, but not long enough to lay down yet. And it's pretty thin and wispy, but more is growing everyday. It's soft like baby hair.
Oops! Look at the time! Gotta go.
I'm feeling a lot more like myself these last few days. I'm starting to talk like myself, walk like myself (well, not really with the balloon feet and all), and look like... hmm, actually I look pretty funny with the fuzz/hair sticking straight up on my head. It's getting longer, but not long enough to lay down yet. And it's pretty thin and wispy, but more is growing everyday. It's soft like baby hair.
Oops! Look at the time! Gotta go.
Wednesday, July 20, 2005
Surgeon Update
Luke and I took a weekend getaway to Dallas. We stayed at a nice hotel where the staff treats you like royalty. And I think I had the most expensive meal of my life. The kind where presentation is as important as the food.
Monday we saw the surgeon. He said he'd do a lumpectomy if he could see it on the mammogram. I have that scheduled for Thursday so, as weird as it seems, say a prayer or cross your fingers that they find something on the mammogram. Otherwise, I'll have to have a mastectomy of the right breast.
If I have the lumpectomy I'll have radiation which means a new doctor, a radiation oncologist. I'll go every day for six weeks. But a mastectomy and reconstruction takes months. I truly want to be done with all this by the end of the year. Of course, technically I won't be done for years, but I mean all the treatment.
My left foot swelled yesterday and this morning it's still a little plump. At this point I'm not really sure which doctor to call now that the oncologist has cut me loose. I think I'll call the nephrologist.
Time for breakfast and work now.
Monday we saw the surgeon. He said he'd do a lumpectomy if he could see it on the mammogram. I have that scheduled for Thursday so, as weird as it seems, say a prayer or cross your fingers that they find something on the mammogram. Otherwise, I'll have to have a mastectomy of the right breast.
If I have the lumpectomy I'll have radiation which means a new doctor, a radiation oncologist. I'll go every day for six weeks. But a mastectomy and reconstruction takes months. I truly want to be done with all this by the end of the year. Of course, technically I won't be done for years, but I mean all the treatment.
My left foot swelled yesterday and this morning it's still a little plump. At this point I'm not really sure which doctor to call now that the oncologist has cut me loose. I think I'll call the nephrologist.
Time for breakfast and work now.
Tuesday, July 19, 2005
Wednesday, July 13, 2005
Tuesday, July 12, 2005
Long Story Short
I know I said I'd finish the story, but I just don't feel like it. So instead of telling the whole story, I'll cut to the chase. At the onc visit we decided the benefits of the chemo weren't worth the side effects. We decided to stop the chemo treatments now and not do the final two. Trust me on this one, there's no way this onc would suggest we stop here if he didn't really think my reaction to the chemo was extreme. I'm so relieved he suggested it (and I didn't have to), because I was beginning to feel like there was no way I was getting out of this short of being crippled. But I think the neurontin is helping. I still can't stay on my feet for long, but it does seem to be improving a little every day.
I go to the surgeon on Monday to decide what we do from here. By this I mean how extensive the surgery will be.
Oh yea, btw, the onc sent me to ultrasound to be sure I didn't have a blood clot (I don't) causing the pain around the port. Still don't know why I'm having pain around the port.
And have I mentioned that I have white fuzz growing all over my head? It feels kind of cool. And I can feel the wind blow through the fuzz on my neck. On the other hand, I also have it growing along my jawline, like I'm some kind of simian creature. My friends insist you can't notice it unless the light hits it just right. And other post-chemo patients have assured me that it does go away.
The good thing that happened today: My niece, April, had her second baby. This one's a girl. And if that wasn't good enough, April happens to be my godchild. And if that wasn't good enough, she had the baby here in Natchtitoches, (because she doesn't live too terribly far away) so I'm able to see her and visit her and the baby.
I go to the surgeon on Monday to decide what we do from here. By this I mean how extensive the surgery will be.
Oh yea, btw, the onc sent me to ultrasound to be sure I didn't have a blood clot (I don't) causing the pain around the port. Still don't know why I'm having pain around the port.
And have I mentioned that I have white fuzz growing all over my head? It feels kind of cool. And I can feel the wind blow through the fuzz on my neck. On the other hand, I also have it growing along my jawline, like I'm some kind of simian creature. My friends insist you can't notice it unless the light hits it just right. And other post-chemo patients have assured me that it does go away.
The good thing that happened today: My niece, April, had her second baby. This one's a girl. And if that wasn't good enough, April happens to be my godchild. And if that wasn't good enough, she had the baby here in Natchtitoches, (because she doesn't live too terribly far away) so I'm able to see her and visit her and the baby.
Monday, July 11, 2005
Taxotere -number six
I went in for the taxotere treatment not knowing what to expect this time. But I was determined (as I am with every treatment) that I would be the one to have no side effects and to take the chemo with a smile, ever strong and unflappable. Okay, so my record hasn’t been perfect, but it was a new day and a new chemo and I had caused enough trouble already.
The onc apologized again for our miscommunication problem. My blood levels were better than they have been, but not good enough to stop the aranasp shots. Then he did the breast exam and, as I have already mentioned, he found no lumps. Except the ones that were supposed to be there, hehe.
The treatment itself was pretty easy. They gave me benedryl in the drip first thing and I was so cool I fell asleep immediately. They started the taxotere while I slept and I woke up with only about ten minutes left to go. Instead of the dignified and witty image I sought to portray, I was groggy and confused. I thought they had just started the taxotere, but really it was all over.
The rest of the day, except for the sleepiness, I felt fine. No queasiness or anything. But on the third day...
It was the same as with the taxol: My feet, which had started to feel better with the neurontin, where numb again. And I had sharp pains everywhere. The pain didn't seem as bad as before, though. I’m not sure if that’s because it really wasn’t as bad, or because I wasn’t taken by surprise like the last time or because I already had the hydrocodone ready.
After a few days though, I was once again sick and tired of being in zombie-land on the hydrocodone. I kept trying to make it without it, but by evening I had to take the painkillers. Then I started having pain around the port and down my left arm and around my left collarbone.
I called the cancer center to ask if all this was normal stuff and make sure I was taking the neurontin correctly since he increased my dosage. The nurse focused right in on the pain around the port and said I had to come in.
Didn’t mean for this to be a cliffhanger, but suddenly I’m tired. And that doc visit changed everything, so it’s a story unto itself. I’ll try to finish the story tomorrow after work. Tune in next time for the continuing saga.
The onc apologized again for our miscommunication problem. My blood levels were better than they have been, but not good enough to stop the aranasp shots. Then he did the breast exam and, as I have already mentioned, he found no lumps. Except the ones that were supposed to be there, hehe.
The treatment itself was pretty easy. They gave me benedryl in the drip first thing and I was so cool I fell asleep immediately. They started the taxotere while I slept and I woke up with only about ten minutes left to go. Instead of the dignified and witty image I sought to portray, I was groggy and confused. I thought they had just started the taxotere, but really it was all over.
The rest of the day, except for the sleepiness, I felt fine. No queasiness or anything. But on the third day...
It was the same as with the taxol: My feet, which had started to feel better with the neurontin, where numb again. And I had sharp pains everywhere. The pain didn't seem as bad as before, though. I’m not sure if that’s because it really wasn’t as bad, or because I wasn’t taken by surprise like the last time or because I already had the hydrocodone ready.
After a few days though, I was once again sick and tired of being in zombie-land on the hydrocodone. I kept trying to make it without it, but by evening I had to take the painkillers. Then I started having pain around the port and down my left arm and around my left collarbone.
I called the cancer center to ask if all this was normal stuff and make sure I was taking the neurontin correctly since he increased my dosage. The nurse focused right in on the pain around the port and said I had to come in.
Didn’t mean for this to be a cliffhanger, but suddenly I’m tired. And that doc visit changed everything, so it’s a story unto itself. I’ll try to finish the story tomorrow after work. Tune in next time for the continuing saga.
Visitors
The good thing that happened:
The weekend before the taxotere treatment was scheduled my brother, Larry, his wife, Marie and my sister, Sharon came to visit. They picked a great weekend to come since I had had two weeks to recover from the taxol. On Saturday my niece, April, joined us and brought her 20 month old, Hunter. He is such a delightful baby and I had the best time playing with him all day.
We did some Natchitoches things: the Green Market, the Mercantile, a plantation tour. Larry brought some trout and his burner and fried fish for us Saturday evening. It was a good visit and really lifted my spirits.
We also discovered a new campground suitable for Larry and Marie to park their camper. The campground has a lake and cabins and a beach. We're hoping to rent a couple cabins and have a whole family gathering when the weather cools a bit.
The weekend before the taxotere treatment was scheduled my brother, Larry, his wife, Marie and my sister, Sharon came to visit. They picked a great weekend to come since I had had two weeks to recover from the taxol. On Saturday my niece, April, joined us and brought her 20 month old, Hunter. He is such a delightful baby and I had the best time playing with him all day.
We did some Natchitoches things: the Green Market, the Mercantile, a plantation tour. Larry brought some trout and his burner and fried fish for us Saturday evening. It was a good visit and really lifted my spirits.
We also discovered a new campground suitable for Larry and Marie to park their camper. The campground has a lake and cabins and a beach. We're hoping to rent a couple cabins and have a whole family gathering when the weather cools a bit.
Sunday, July 10, 2005
What I Should Be Doing With My Time
I’ve wondered, and I bet most of you have too, from time to time, what I would do if I found out I had a fatal disease. I’ve daydreamed about what I would do if I learned I only had, say, six months to live. Come on, you know you have too! You can’t help it. We’re besieged with popular wisdom: live today as if it were your last, carpe diem and all that jazz. Get out there and experience life!
Awhile back I promised to tell you about some of the emotional crap that comes along with dealing with cancer and that’s what I’m getting at here. It seems I’ve moved from shock to acceptance to anger to shame and disappointment in myself for not doing those things I’ve always thought I would if faced with the knowledge that death may be coming sooner than expected. Frustration is another good word for what I feel. I’ve always thought I really would seize the day and do crazy things and leave letters behind or video recordings with important messages about life and death and love and hope.
The problem with this romantic notion is, of course, that doing most things takes time, money and energy. All three of which are in short supply when you find yourself facing down a life-threatening illness. Most of your time, money and energy are spent trying to ensure that the illness doesn’t ultimately turn out to be fatal.
Then it becomes an emotional dilemma. You know you should be out there ‘seizing the day,’ but really all you want to do is curl up in your chair with a big fluffy blanket and stare zombie-like at the TV while your loved ones bring you ice cream bars and glasses of water. This leads to guilt: I’m going to die and my last days are going to be my most boring. And all my loved ones are going to wonder why I didn’t write them meaningful and humorous letters about how they made my life wonderful. After all, I had plenty of time sitting around recuperating from treatments.
The truth is I really want to write those letters. And I really want to drag my weary body outside to smell the roses. But when I think about it, I think, it’s a million degrees outside, I’ve smelled roses and I don’t think their smell has changed, and I can’t take the smell with me, so what’s the point?
As for the letters, well once you start you have two problems. First, you have to admit to yourself that you might actually die, which is so ridiculous, because in all your life experience it’s been other people who die, not you. Okay I recognize this is in no way logical, but nonetheless… Then of course, if you get beyond that and really admit you could die, then you are so overcome with sadness for the people who count on you that you just can’t bear to do anything. Except you cry and cry and cry until you are totally drained and even more exhausted and can’t feel anything. Who can write meaningful and humorous letters when they can’t feel anything? So you eat an ice cream bar and pull your blanket around you more snuggly and pick up the remote.
The other problem is that once you start writing letters you discover that you can’t possibly write a letter to EVERYONE and what if you leave someone really important out and they forever wonder why you didn’t care enough about them to write them a letter, but you wrote a letter to so-and-so who you barely knew.
Before this all began, in my daydreams about what I’d do if ever I found myself in this particular situation (in addition to seizing the day and writing letters to loved ones) I’ve often wondered to whom I would write the letter that starts, “you probably don’t remember but….” Who would I get in touch with to let them know they made a difference to me in some small way they may not even be aware of? You know that friend who tricked you into reading your first novel (I double dare you to read just one chapter) and turned you into a reader (where are you now Carrie Comeaux?) or the teacher who really reached you. Because there are some people, including one or two teachers, who did a small thing for me that actually changed the course of my life for the better. Shouldn’t they know? I mean wouldn’t you get a charge out of finding out something you did, but have long since forgotten, had a positive influence on someone’s life? I know what you’re thinking. Why not just tell them? Why would you need to be dying to write a letter like that? And to that I say to you, heck I don’t know. Embarrassed to bring it up after all these years?
And so here we are, four and half months after diagnosis, and I still haven’t written a single letter. I still haven’t gone out and done some crazy thing I’ve always wanted to do but never got around to. The hard truth about cancer is that you may know that death is possible and you should prepare just in case. And you may know what you’d like to say to whom, but the drugs you take to dull the pain also dull the mind. On your bad days you’re weak and exhausted in which case you stay home, zombie-like in your chair. On your good days you work because, if you live through this, you can’t afford to lose your job. However, when the workday is done you have nothing left to give to writing letters or anything else. And then there’s this thing no one warned me about called “chemo brain” that makes it hard to form a cohesive thought sometimes. That’s why, to my surprise, I’ve had a hard time keeping up with the blog.
Now you know. But what I’ve described above isn’t something I think about or worry about every day. That’s how emotion is, one day you are up and another you are down. I’m not having too much trouble writing today after all.
The good news is I no longer feel like I’m going to die. My prognosis at the beginning was somewhere between 16% and 49% survival. I give this range because my diagnosis was Stage IIIC which none of the charts show because apparently it wasn’t a separate stage until 2003. Before that the stages went from IIIB to IV. Therefore the charts show survival rates for IIIB as 49% and for IV as 16%. I thought I’d seen a chart somewhere in the beginning that showed 36% survival for IIIC, but I can’t seem to find it now. At any rate, these are not good numbers. However, my cancer has shrunk rapidly and at my last treatment (which I’ll tell you about later) the onc could no longer feel any lumps at all. I’ll repeat that, much to the visible delight of my onc, he couldn’t feel ANY lumps at all.
Awhile back I promised to tell you about some of the emotional crap that comes along with dealing with cancer and that’s what I’m getting at here. It seems I’ve moved from shock to acceptance to anger to shame and disappointment in myself for not doing those things I’ve always thought I would if faced with the knowledge that death may be coming sooner than expected. Frustration is another good word for what I feel. I’ve always thought I really would seize the day and do crazy things and leave letters behind or video recordings with important messages about life and death and love and hope.
The problem with this romantic notion is, of course, that doing most things takes time, money and energy. All three of which are in short supply when you find yourself facing down a life-threatening illness. Most of your time, money and energy are spent trying to ensure that the illness doesn’t ultimately turn out to be fatal.
Then it becomes an emotional dilemma. You know you should be out there ‘seizing the day,’ but really all you want to do is curl up in your chair with a big fluffy blanket and stare zombie-like at the TV while your loved ones bring you ice cream bars and glasses of water. This leads to guilt: I’m going to die and my last days are going to be my most boring. And all my loved ones are going to wonder why I didn’t write them meaningful and humorous letters about how they made my life wonderful. After all, I had plenty of time sitting around recuperating from treatments.
The truth is I really want to write those letters. And I really want to drag my weary body outside to smell the roses. But when I think about it, I think, it’s a million degrees outside, I’ve smelled roses and I don’t think their smell has changed, and I can’t take the smell with me, so what’s the point?
As for the letters, well once you start you have two problems. First, you have to admit to yourself that you might actually die, which is so ridiculous, because in all your life experience it’s been other people who die, not you. Okay I recognize this is in no way logical, but nonetheless… Then of course, if you get beyond that and really admit you could die, then you are so overcome with sadness for the people who count on you that you just can’t bear to do anything. Except you cry and cry and cry until you are totally drained and even more exhausted and can’t feel anything. Who can write meaningful and humorous letters when they can’t feel anything? So you eat an ice cream bar and pull your blanket around you more snuggly and pick up the remote.
The other problem is that once you start writing letters you discover that you can’t possibly write a letter to EVERYONE and what if you leave someone really important out and they forever wonder why you didn’t care enough about them to write them a letter, but you wrote a letter to so-and-so who you barely knew.
Before this all began, in my daydreams about what I’d do if ever I found myself in this particular situation (in addition to seizing the day and writing letters to loved ones) I’ve often wondered to whom I would write the letter that starts, “you probably don’t remember but….” Who would I get in touch with to let them know they made a difference to me in some small way they may not even be aware of? You know that friend who tricked you into reading your first novel (I double dare you to read just one chapter) and turned you into a reader (where are you now Carrie Comeaux?) or the teacher who really reached you. Because there are some people, including one or two teachers, who did a small thing for me that actually changed the course of my life for the better. Shouldn’t they know? I mean wouldn’t you get a charge out of finding out something you did, but have long since forgotten, had a positive influence on someone’s life? I know what you’re thinking. Why not just tell them? Why would you need to be dying to write a letter like that? And to that I say to you, heck I don’t know. Embarrassed to bring it up after all these years?
And so here we are, four and half months after diagnosis, and I still haven’t written a single letter. I still haven’t gone out and done some crazy thing I’ve always wanted to do but never got around to. The hard truth about cancer is that you may know that death is possible and you should prepare just in case. And you may know what you’d like to say to whom, but the drugs you take to dull the pain also dull the mind. On your bad days you’re weak and exhausted in which case you stay home, zombie-like in your chair. On your good days you work because, if you live through this, you can’t afford to lose your job. However, when the workday is done you have nothing left to give to writing letters or anything else. And then there’s this thing no one warned me about called “chemo brain” that makes it hard to form a cohesive thought sometimes. That’s why, to my surprise, I’ve had a hard time keeping up with the blog.
Now you know. But what I’ve described above isn’t something I think about or worry about every day. That’s how emotion is, one day you are up and another you are down. I’m not having too much trouble writing today after all.
The good news is I no longer feel like I’m going to die. My prognosis at the beginning was somewhere between 16% and 49% survival. I give this range because my diagnosis was Stage IIIC which none of the charts show because apparently it wasn’t a separate stage until 2003. Before that the stages went from IIIB to IV. Therefore the charts show survival rates for IIIB as 49% and for IV as 16%. I thought I’d seen a chart somewhere in the beginning that showed 36% survival for IIIC, but I can’t seem to find it now. At any rate, these are not good numbers. However, my cancer has shrunk rapidly and at my last treatment (which I’ll tell you about later) the onc could no longer feel any lumps at all. I’ll repeat that, much to the visible delight of my onc, he couldn’t feel ANY lumps at all.
Saturday, July 09, 2005
Fun Flies When You're Doing Time!
I can’t believe how much time has passed. A big whole bunch has happened since June 19, I’m not sure I can remember it all. I’ll try to sum it up without being too boring.
Here's the first story:
When I last scribbled here I still had a doc appointment ahead of me. Let me tell you, that one ticked me off! I saw the nurse practitioner and told her the problems I had with the taxol, the pain and numbness in my feet, and my fear of permanent nerve damage. I asked for alternatives. She discussed it with the doc who came in and asked me if I was sure I was having numbness in my feet or if maybe I thought it might be my IMAGINATION? You know, because he suggested it could happen. He also said it didn’t happen that fast, it should take a couple of treatments and I should have tingling in my hands. I was dumbstruck! What is with these doctors always thinking we imagine symptoms! I bet this damn cancer wouldn’t have made it to Stage IIIC before we found it if the docs had listened when I complained of pain in my breast and chest! They say cancer doesn’t hurt, but I think that’s BS. I think it’s been here awhile and I’ve felt it growing and the docs blew off my symptoms. This might sound crazy to you, but I've talked to other women who've been through this and I'm not the only one who had pain in places that the cancer later appeared.
Anyway, I digress. The onc says, we can change chemos, but they all have side effects. I told him I was concerned about the permanent side effects, not the temporary ones. He agreed to switch from Taxol to Taxotere. Common side effects: disgusting nails (meaning they may turn black and fall off) but will grow back to normal after treatment stops. And water weight gain. But the neuropathy is much less likely with Taxotere. After he left the room I broke down a little and told Luke I didn’t want to gain any more weight and when was this nightmare going to end. Luke assured me the onc said water-weight and I would be able to lose that after the chemo was done. I had collected myself by the time the NP came back in. Luke told her the onc didn’t believe me, but she said, “I believe you. And the important thing is he agreed to change the chemo.”
The next day after stewing over his response I called the NP and asked her if it would be difficult to change to another doctor. She didn’t think so, but asked why. I explained to her that my onc didn’t believe me when I told him what was happening with my body and I lost confidence in him. She said she’d call one of the other docs and did I have a preference? I didn’t know either and all things being equal, I’ll pick the woman. She said she’d call me back and let me know if the other doc could fit me in on the same day I was already scheduled.
A few minutes later the phone rang, the NP said, Dr. #1 wants to talk to you, is that okay? Oh sh**!! What can I say? No, I’m too much of a baby to talk to him? Of course I felt cornered, but I calmly said, “Sure.” He gets on the line and says, “Mrs. Brouillette, I absolutely did believe you, that’s why I agreed to change the chemo. I never would have agreed if I didn’t believe you. I’m sorry if I sounded doubtful, but I was so surprised because in my experience the neuropathy has never hit so quickly. Your comment about walking on a bar certainly convinced me that you weren’t imagining it. It’s just that you are totally off the bell curve! Again, I’m sorry I came across as if I didn’t believe you.” Then he said he’d understand if I still wanted to change doctors and he’d put the NP back on the line. Geez!! Now he decides to be human? After I mustered up enough anger to make the call to the NP in the first place? ! What did I do? I said it was probably best to stick with him since we were so far into treatment already. And that’s how that went. I had a week to recuperate and then – taxotere.
Here's the first story:
When I last scribbled here I still had a doc appointment ahead of me. Let me tell you, that one ticked me off! I saw the nurse practitioner and told her the problems I had with the taxol, the pain and numbness in my feet, and my fear of permanent nerve damage. I asked for alternatives. She discussed it with the doc who came in and asked me if I was sure I was having numbness in my feet or if maybe I thought it might be my IMAGINATION? You know, because he suggested it could happen. He also said it didn’t happen that fast, it should take a couple of treatments and I should have tingling in my hands. I was dumbstruck! What is with these doctors always thinking we imagine symptoms! I bet this damn cancer wouldn’t have made it to Stage IIIC before we found it if the docs had listened when I complained of pain in my breast and chest! They say cancer doesn’t hurt, but I think that’s BS. I think it’s been here awhile and I’ve felt it growing and the docs blew off my symptoms. This might sound crazy to you, but I've talked to other women who've been through this and I'm not the only one who had pain in places that the cancer later appeared.
Anyway, I digress. The onc says, we can change chemos, but they all have side effects. I told him I was concerned about the permanent side effects, not the temporary ones. He agreed to switch from Taxol to Taxotere. Common side effects: disgusting nails (meaning they may turn black and fall off) but will grow back to normal after treatment stops. And water weight gain. But the neuropathy is much less likely with Taxotere. After he left the room I broke down a little and told Luke I didn’t want to gain any more weight and when was this nightmare going to end. Luke assured me the onc said water-weight and I would be able to lose that after the chemo was done. I had collected myself by the time the NP came back in. Luke told her the onc didn’t believe me, but she said, “I believe you. And the important thing is he agreed to change the chemo.”
The next day after stewing over his response I called the NP and asked her if it would be difficult to change to another doctor. She didn’t think so, but asked why. I explained to her that my onc didn’t believe me when I told him what was happening with my body and I lost confidence in him. She said she’d call one of the other docs and did I have a preference? I didn’t know either and all things being equal, I’ll pick the woman. She said she’d call me back and let me know if the other doc could fit me in on the same day I was already scheduled.
A few minutes later the phone rang, the NP said, Dr. #1 wants to talk to you, is that okay? Oh sh**!! What can I say? No, I’m too much of a baby to talk to him? Of course I felt cornered, but I calmly said, “Sure.” He gets on the line and says, “Mrs. Brouillette, I absolutely did believe you, that’s why I agreed to change the chemo. I never would have agreed if I didn’t believe you. I’m sorry if I sounded doubtful, but I was so surprised because in my experience the neuropathy has never hit so quickly. Your comment about walking on a bar certainly convinced me that you weren’t imagining it. It’s just that you are totally off the bell curve! Again, I’m sorry I came across as if I didn’t believe you.” Then he said he’d understand if I still wanted to change doctors and he’d put the NP back on the line. Geez!! Now he decides to be human? After I mustered up enough anger to make the call to the NP in the first place? ! What did I do? I said it was probably best to stick with him since we were so far into treatment already. And that’s how that went. I had a week to recuperate and then – taxotere.
Sunday, June 19, 2005
Numbness
Let me tell you what a fun week I had. Everyday at work our systems have been up and down all day so very little actual work was completed. Very frustrating since it was the one week I had no appointments and could be there all week. Friday being a deadline date for the month added more frustration.
I had to take a pain pill by the end of each day through Wednesday. Wasn’t bad enough to need one Thursday or Friday. I’m even better today. No real pain, just achy ankles. Or maybe I’ve just become accustomed to the pain. Still some numbness in my feet, but in the immortal words of the Beatles, “It’s getting better all the time.” There’s a strip of numbness down the middle of my left foot from toe to heal. And there’s a patch of numbness remaining on my right foot. I’m sure the aching in my ankles is due to walking incorrectly. For example, I’m rolling my left foot to the outside because it feels as if I’m walking on a bar or something. And I’m walking on the ball of my right foot because the numbness is toward the back. I have to consciously make myself walk normally and not do that, but it feels mighty weird walking on numbness.
I’ve taken the neurontin for six days and it appears to be helping which is a relief. I’m truly afraid of how much of this numbness will be permanent. The doc’s warning about the taxol was that it could cause permanent nerve damage. He said it would start as tingling in the tips of the fingers or toes. Boy, was he wrong! It hit me full force within a week of having the chemo. And not just my feet. More disturbing then the numbness in my feet, for a few days I had trouble urinating. I had to really concentrate to relax that muscle and let it out. A slow trickle came out and that was all I could manage. I couldn’t quite empty my bladder and had to make frequent trips to the bathroom. I started to fear getting a bladder infection. Fortunately, that went away and I’m urinating normally again.
And here’s a really bizarre thing. Way back when, 17 years ago, when I was delivering Jeremy I had an epidural. Afterward for about two years I had a numb spot on my left thigh. It was about the size of a silver dollar. Well, it’s baaaack! And it’s a bigger area now, about the size of a saucer. Weird, eh?
Tomorrow I have an appointment with the oncologist. It's time to talk about options or alternatives. I'm really terrified to take anymore of that taxol. It may be time to stop the chemo. Though it's a tough decision to make when the pressure from all around is to do whatever it takes to live longer. But what is the point if you aren't even yourself, because you are hurting or too weak and tired to do the things you enjoy? Or crippled because you have permanent nerve damage in your feet?
But that's tomorrow's worry. Today I'm painting a bedroom wall and then I don't know what else.
The good thing that happened: Luke sent me flowers on Friday. And we went to see Batman Begins. It was pretty good.
I had to take a pain pill by the end of each day through Wednesday. Wasn’t bad enough to need one Thursday or Friday. I’m even better today. No real pain, just achy ankles. Or maybe I’ve just become accustomed to the pain. Still some numbness in my feet, but in the immortal words of the Beatles, “It’s getting better all the time.” There’s a strip of numbness down the middle of my left foot from toe to heal. And there’s a patch of numbness remaining on my right foot. I’m sure the aching in my ankles is due to walking incorrectly. For example, I’m rolling my left foot to the outside because it feels as if I’m walking on a bar or something. And I’m walking on the ball of my right foot because the numbness is toward the back. I have to consciously make myself walk normally and not do that, but it feels mighty weird walking on numbness.
I’ve taken the neurontin for six days and it appears to be helping which is a relief. I’m truly afraid of how much of this numbness will be permanent. The doc’s warning about the taxol was that it could cause permanent nerve damage. He said it would start as tingling in the tips of the fingers or toes. Boy, was he wrong! It hit me full force within a week of having the chemo. And not just my feet. More disturbing then the numbness in my feet, for a few days I had trouble urinating. I had to really concentrate to relax that muscle and let it out. A slow trickle came out and that was all I could manage. I couldn’t quite empty my bladder and had to make frequent trips to the bathroom. I started to fear getting a bladder infection. Fortunately, that went away and I’m urinating normally again.
And here’s a really bizarre thing. Way back when, 17 years ago, when I was delivering Jeremy I had an epidural. Afterward for about two years I had a numb spot on my left thigh. It was about the size of a silver dollar. Well, it’s baaaack! And it’s a bigger area now, about the size of a saucer. Weird, eh?
Tomorrow I have an appointment with the oncologist. It's time to talk about options or alternatives. I'm really terrified to take anymore of that taxol. It may be time to stop the chemo. Though it's a tough decision to make when the pressure from all around is to do whatever it takes to live longer. But what is the point if you aren't even yourself, because you are hurting or too weak and tired to do the things you enjoy? Or crippled because you have permanent nerve damage in your feet?
But that's tomorrow's worry. Today I'm painting a bedroom wall and then I don't know what else.
The good thing that happened: Luke sent me flowers on Friday. And we went to see Batman Begins. It was pretty good.
Wednesday, June 15, 2005
Support
I joined an online support group. Their experiences are so diverse even though most of them seem to be getting the same core treatment - adriamycin, cytoxan, taxol. I actually feel a little better about my doctor after hearing some of the things they've gone through. I'm especially confident about all the testing that was done initially. Reading about their situations makes it so totally clear to me that this is a hit or miss situation. The doctors really are "practicing" medicine and they don't really have a handle on this disease. That's scary. We want to have confidence in science and modern medicine, but it's clear that we're far from a good cure for cancer. We just hope the poison kills it and not us and that's basically what it comes down to. And maybe, if we're good, and hope real hard, we'll get out of this without TOO many scars, physical or psychological.
Tuesday, June 14, 2005
Pain Killers
I've been in a haze of painkillers since Friday. Big plans to write all about what I'm thinking about while I go through this poisonous journey. No use. Can't think when you're falling asleep from the hydrocodone. I tried to go to work yesterday and not take the pill, but after a couple hours I couldn't stand it anymore and took one. I'm also having numbness in my feet. Numbness sounds like something painless, but it's not. It's like when you sit on your feet too long. Not pins and needles, but swollen balloon pain. I'm walking like an old person with athritis in her feet. Like I'm trying not to step on my feet.
I called the doc (as instructed, "Don't wait until you've had numbness for two weeks, let me know early so maybe I can do something!"). His nurse, Mary, cold as ever, said, "Oh, nothing we can do so just tell him when you see him." A week from now. NO! I had to insist that she tell him and that he instructed me to tell him immediately. Reluctantly she agreed to pass the message on to him. Anyway, now I have another pill to take. Neurontin. I took it last night, after checking with my nephrologist (warning: tell your doctor if you have kidney disease) and getting an okay. I do feel better this morning. Not so much pain. It just feels like aches from too much exercise. And my feet, which I could hardly walk on, feel more like feet, though still some tingling numbness.
I'm going to try again today to work and not take the hydrocodone. I'm just taking some acetemetaphen.
This taxol is a totally different experience from the other chemo. No dizziness or queasiness. No aversion to different foods. No bad taste in my mouth. No flu-like symptoms. Just pain like I've been beaten in my sleep.
The day is just beginning so I don't have a good thing that happened today, unless you count a noticeable lessening of pain in my legs.
I called the doc (as instructed, "Don't wait until you've had numbness for two weeks, let me know early so maybe I can do something!"). His nurse, Mary, cold as ever, said, "Oh, nothing we can do so just tell him when you see him." A week from now. NO! I had to insist that she tell him and that he instructed me to tell him immediately. Reluctantly she agreed to pass the message on to him. Anyway, now I have another pill to take. Neurontin. I took it last night, after checking with my nephrologist (warning: tell your doctor if you have kidney disease) and getting an okay. I do feel better this morning. Not so much pain. It just feels like aches from too much exercise. And my feet, which I could hardly walk on, feel more like feet, though still some tingling numbness.
I'm going to try again today to work and not take the hydrocodone. I'm just taking some acetemetaphen.
This taxol is a totally different experience from the other chemo. No dizziness or queasiness. No aversion to different foods. No bad taste in my mouth. No flu-like symptoms. Just pain like I've been beaten in my sleep.
The day is just beginning so I don't have a good thing that happened today, unless you count a noticeable lessening of pain in my legs.
Saturday, June 11, 2005
Pain
Oh hell, the pain!! I can't believe it! It seemed like taxol was going to be easier going than the other chemo, but Thursday evening my legs started to hurt intensely. My leg bones and my joints, my knees, my hips, my ankles! I had aching bones with the shots before, but this is so much deeper. Thursday night I took some hydrocodone that I had left from when I had the migraine. It helped. Made me sleep.
I'd hoped it would ease by Friday morning, but it didn't. There's no comfort. Legs stretched out, folded in, leaning left or right. Heating pad, hot bath. Doesn't matter. A moment of relief and then stabbing pain from two or three places at once. Talked to Kate (the nurse prac)who said, yes, taxol can cause this kind of pain in some people. Should only last a couple of days and I could expect it after each treatment. She called in more lortabs. It helps, but it doesn't do what I want. I want to be totally body numb. It doesn't do that. I was hoping I'd wake up today and it would be over. I don't want to be fuzzy headed all day again. But the pain has not gone away. It has, in fact, spread to my upper body, shoulders, arms. I think my ribs hurt. I broke down and decided I'd have to have another day of pain killers. Wasted day.
I'd hoped it would ease by Friday morning, but it didn't. There's no comfort. Legs stretched out, folded in, leaning left or right. Heating pad, hot bath. Doesn't matter. A moment of relief and then stabbing pain from two or three places at once. Talked to Kate (the nurse prac)who said, yes, taxol can cause this kind of pain in some people. Should only last a couple of days and I could expect it after each treatment. She called in more lortabs. It helps, but it doesn't do what I want. I want to be totally body numb. It doesn't do that. I was hoping I'd wake up today and it would be over. I don't want to be fuzzy headed all day again. But the pain has not gone away. It has, in fact, spread to my upper body, shoulders, arms. I think my ribs hurt. I broke down and decided I'd have to have another day of pain killers. Wasted day.
Wednesday, June 08, 2005
Chemo 5 - over the hump
Down hill from here! At least as far as chemo goes. There's still the issue of surgery and possibly radiation, but that's for another day's worries.
I had my fifth treatment yesterday. The first of the four taxol. They said I won't grow my hair back just yet, though I do have some white fuzz sticking up on my head. I hope if it comes back white/gray it'll still be soft and not coarse like some gray hair can be. Or maybe it'll be a soft beautiful blond! Cool.
The side affects are much the same as the other; nausea, fatigue, hairloss. Of course the only hair I have left to lose is on my arms and I still have to shave my legs about every three or four weeks. I haven't had to shave my armpits in months though! That's been really neat. And my girlie parts are bald and smooth as a newborn baby. Funny problem that causes, ladies. If you've ever shaved down there you probably are familiar with the peepee problem. It seems your hair works as a trail for your pee to neatly follow down into the potty. Remove the hair and the pee goes everywhere! How's that for an unanticipated problem? You have to sit at just the right angle on the toidee to pee straight down. Otherwise, what a mess!
They told me the taxol usually doesn't cause as much nausea or fatigue. It also isn't so hard on the kidneys as the other two, (boy is that a relief!!) but may be some trouble for the liver. I can't help think how crazy a treatment is that calls for you to intentionally poison yourself! And yet, we all agree to it.
The big thing to look out for with taxol is nerve damage in the hands and feet. Melissa Etheridge stopped her treatment with this because she was having trouble with her fingers and, of course, she needs her hands for guitar playing. I don't play guitar, but I do need to be able to type. We'll see what happens.
The doc was very pleased with the rapidly disappearing breast tumor. I mean, he was clearly delighted. I asked him if it was normal for a tumor to shrink so fast. He laughed and said, with cancer nothing is normal or predictable. But then he admitted it had gone from a large tumor (about as long as a AA battery) to something the size of the very tip of a finger in a remarkably short time. Not to mention the one in my neck practically disappeared after the first treatment. Then he told us a story of one other patient he had that was Stage IV (Stage IV is almost certain to kill you, I think the survival rate is like 15%) whose cancer disappeared altogether following the same treatment I'm having. I got the impression he was saying she was the only other patient he had who had done that.
Disclaimer: I have mentioned the communications problem I have with this doctor, so I could have misread what he was telling me. But I gotta say, the man was giddy.
I didn't mention to him that I had lost track of the number of people who promised to pray for me and put me on their church prayer lists. I'm not a religious person but all that positive energy may just be doing the trick. Thanks folks. And despite my recent whining, I've really not had a terribly hard time of it when I put it in perspective. I've heard of other people who were much sicker and more miserable than I've been so far. I can go to work more days than not. I haven't had any vomiting. The meds have affectively controlled the nausea. The worst has been the total interruption of my life and the fatigue. But I've got a great support system and people who care about me. And I don't think I'm going to die this year anymore. (See how much better my attitude is when I'm not suffering from PMS?) Let's not talk about the blood transfusion or having to put off a treatment due to liver function levels or the creatinine rising or the other problems with various parts of my body....
The doc also changed his attitude a little about the mastectomy. Not his mind, just his attitude. What he said was, "when you're done with these four treatments you'll meet with Dr. Marler (the surgeon) and you and he will decide where to go from there." I don't know if he put it that way because Luke was in the room or what. Being naturally suspicious, my first thought was, he's already discussed it with Marler that's why he seems so willing to go along with whatever "we" decide. Stop it, Dawn!
So I had the new chemo yesterday. The whole thing takes about 4 hours (after you see the doc.) We arrived about 9:20 for the doc appt and left for home about 2:30 after the chemo. First they give you premeds that take about an hour. Tagamet and bendryl and decadron (sp?). Then 3 hours for the taxol. The benadryl made me sleepy. I brought a book on CD (sometimes it's hard to read during the chemo) and fell asleep listening to it. Luke brought me lunch, but I couldn't eat much. I slept a couple hours off and on. Then we went home and I ate two bowls of cereal and slept some more. Didn't feel sick at all, though. I even managed to sleep last night after all that daytime sleeping. The only glitch was I woke up with acid reflux and had to sit up and take antacid and eat bread to get the acid out of my mouth.
Today I went to work (after going to the hospital emergency room for my neulasta shot - if you ever have to do this I've discovered the best time is about 7 in the morning) and felt almost normal all day. Even my appetite. Just a little heart burn.
After work I even took a dip in Bobbie's pool after watering the outside plants. Now I'm home and sleepy, but not sick.
The good thing that happened today: in spite of chemo yesterday, it felt like a normal day. I'm even sitting here blogging.
What I want to do someday: parasail.
I had my fifth treatment yesterday. The first of the four taxol. They said I won't grow my hair back just yet, though I do have some white fuzz sticking up on my head. I hope if it comes back white/gray it'll still be soft and not coarse like some gray hair can be. Or maybe it'll be a soft beautiful blond! Cool.
The side affects are much the same as the other; nausea, fatigue, hairloss. Of course the only hair I have left to lose is on my arms and I still have to shave my legs about every three or four weeks. I haven't had to shave my armpits in months though! That's been really neat. And my girlie parts are bald and smooth as a newborn baby. Funny problem that causes, ladies. If you've ever shaved down there you probably are familiar with the peepee problem. It seems your hair works as a trail for your pee to neatly follow down into the potty. Remove the hair and the pee goes everywhere! How's that for an unanticipated problem? You have to sit at just the right angle on the toidee to pee straight down. Otherwise, what a mess!
They told me the taxol usually doesn't cause as much nausea or fatigue. It also isn't so hard on the kidneys as the other two, (boy is that a relief!!) but may be some trouble for the liver. I can't help think how crazy a treatment is that calls for you to intentionally poison yourself! And yet, we all agree to it.
The big thing to look out for with taxol is nerve damage in the hands and feet. Melissa Etheridge stopped her treatment with this because she was having trouble with her fingers and, of course, she needs her hands for guitar playing. I don't play guitar, but I do need to be able to type. We'll see what happens.
The doc was very pleased with the rapidly disappearing breast tumor. I mean, he was clearly delighted. I asked him if it was normal for a tumor to shrink so fast. He laughed and said, with cancer nothing is normal or predictable. But then he admitted it had gone from a large tumor (about as long as a AA battery) to something the size of the very tip of a finger in a remarkably short time. Not to mention the one in my neck practically disappeared after the first treatment. Then he told us a story of one other patient he had that was Stage IV (Stage IV is almost certain to kill you, I think the survival rate is like 15%) whose cancer disappeared altogether following the same treatment I'm having. I got the impression he was saying she was the only other patient he had who had done that.
Disclaimer: I have mentioned the communications problem I have with this doctor, so I could have misread what he was telling me. But I gotta say, the man was giddy.
I didn't mention to him that I had lost track of the number of people who promised to pray for me and put me on their church prayer lists. I'm not a religious person but all that positive energy may just be doing the trick. Thanks folks. And despite my recent whining, I've really not had a terribly hard time of it when I put it in perspective. I've heard of other people who were much sicker and more miserable than I've been so far. I can go to work more days than not. I haven't had any vomiting. The meds have affectively controlled the nausea. The worst has been the total interruption of my life and the fatigue. But I've got a great support system and people who care about me. And I don't think I'm going to die this year anymore. (See how much better my attitude is when I'm not suffering from PMS?) Let's not talk about the blood transfusion or having to put off a treatment due to liver function levels or the creatinine rising or the other problems with various parts of my body....
The doc also changed his attitude a little about the mastectomy. Not his mind, just his attitude. What he said was, "when you're done with these four treatments you'll meet with Dr. Marler (the surgeon) and you and he will decide where to go from there." I don't know if he put it that way because Luke was in the room or what. Being naturally suspicious, my first thought was, he's already discussed it with Marler that's why he seems so willing to go along with whatever "we" decide. Stop it, Dawn!
So I had the new chemo yesterday. The whole thing takes about 4 hours (after you see the doc.) We arrived about 9:20 for the doc appt and left for home about 2:30 after the chemo. First they give you premeds that take about an hour. Tagamet and bendryl and decadron (sp?). Then 3 hours for the taxol. The benadryl made me sleepy. I brought a book on CD (sometimes it's hard to read during the chemo) and fell asleep listening to it. Luke brought me lunch, but I couldn't eat much. I slept a couple hours off and on. Then we went home and I ate two bowls of cereal and slept some more. Didn't feel sick at all, though. I even managed to sleep last night after all that daytime sleeping. The only glitch was I woke up with acid reflux and had to sit up and take antacid and eat bread to get the acid out of my mouth.
Today I went to work (after going to the hospital emergency room for my neulasta shot - if you ever have to do this I've discovered the best time is about 7 in the morning) and felt almost normal all day. Even my appetite. Just a little heart burn.
After work I even took a dip in Bobbie's pool after watering the outside plants. Now I'm home and sleepy, but not sick.
The good thing that happened today: in spite of chemo yesterday, it felt like a normal day. I'm even sitting here blogging.
What I want to do someday: parasail.
Monday, June 06, 2005
Mastectomy
The thought of a mastectomy is very disturbing to me. I can't fathom having a part of my body removed. And I can't help being suspiscious of a medical community that has historically treated women with considerable less dignity than men. I've never heard of reports of doctors encouraging men to have parts of their bodies removed if not absolutely medically necessary, yet this sort of thing happens to women. We all know women who have had things like routine C-sections and hysterectomies for reasons that don't make much sense. Is it any wonder that I buck at the suggestion of a mastectomy by a doctor who seems to have made up his mind, but is reluctant to discuss it with me? Of course, I know it is up to me whether we follow that course or not, but how do I make an informed decision when I don't trust the doctor? Perhaps something will change before the end of chemo and this line of thought will be moot, but until then I'm trying to hash it out and prepare myself for the worst.
The surprising thing to me in all this is many women's reaction when I tell them I don't want a mastectomy. They can't understand why this would be a problem for me. They invariably say, "Don't you want to live?" Which brings up the question, just how far would you go to live? What price will you pay? Mutilation? Kidney failure and thus life on dialysis? Alive, but feeling sick all the time, so that your life sucks? Life is only worth living if you can enjoy it. Of course, losing a breast wouldn't make life unbearable, but it would alter your life in a way that you shouldn't take lightly. The doc doesn't seem to think it's reasonable to want to know if there are other options, because TO HIM it's the best option. Some of my women friends have said they would have a mastectomy even if the doc told them a lumpectomy would do the job. They say, no one will be able to tell. You'll wear a prosthesis or have reconstructive surgery. But the point for me is not whether other people can tell. The point is I will have to look at myself in the mirror every day and my body will no longer look or feel like me. Perhaps I am a more tactile person, but this will change my life for me.
I went online and found pictures of women who had mastectomies. Some had reconstructions (there are different types) and others did not. The pictures were meant to reassure women facing this decision. My response to them was total emotional horror. They were terribly scarred. The reconstructions looked worse than the ones without. The women talked about how they had no feeling in their new breasts, which were just dead (tactilely) nipple-less lumps of flesh that didn't even come close to matching the other breast. How can someone not understand how disturbing this is for me?
Someone told me that someone told them that when they had their mastectomy the flesh inside the breast was removed, but the outer layer of skin and nipple were left intact so that she had implants (like a normal breast enlargement procedure) and looked fine. Of course, this is hearsay. If this is what can be done, it wouldn't be so bad, except you still would lose feeling. The only problem is my pitiful research has not born it out and again I get no reassurance from the doctor. I know the surgeon (who will do whatever is to be done) will tell me what my options are when the time comes. And I know at this point it's fruitless to worry about. But how can I help it when my mind brings it back to me?
The surprising thing to me in all this is many women's reaction when I tell them I don't want a mastectomy. They can't understand why this would be a problem for me. They invariably say, "Don't you want to live?" Which brings up the question, just how far would you go to live? What price will you pay? Mutilation? Kidney failure and thus life on dialysis? Alive, but feeling sick all the time, so that your life sucks? Life is only worth living if you can enjoy it. Of course, losing a breast wouldn't make life unbearable, but it would alter your life in a way that you shouldn't take lightly. The doc doesn't seem to think it's reasonable to want to know if there are other options, because TO HIM it's the best option. Some of my women friends have said they would have a mastectomy even if the doc told them a lumpectomy would do the job. They say, no one will be able to tell. You'll wear a prosthesis or have reconstructive surgery. But the point for me is not whether other people can tell. The point is I will have to look at myself in the mirror every day and my body will no longer look or feel like me. Perhaps I am a more tactile person, but this will change my life for me.
I went online and found pictures of women who had mastectomies. Some had reconstructions (there are different types) and others did not. The pictures were meant to reassure women facing this decision. My response to them was total emotional horror. They were terribly scarred. The reconstructions looked worse than the ones without. The women talked about how they had no feeling in their new breasts, which were just dead (tactilely) nipple-less lumps of flesh that didn't even come close to matching the other breast. How can someone not understand how disturbing this is for me?
Someone told me that someone told them that when they had their mastectomy the flesh inside the breast was removed, but the outer layer of skin and nipple were left intact so that she had implants (like a normal breast enlargement procedure) and looked fine. Of course, this is hearsay. If this is what can be done, it wouldn't be so bad, except you still would lose feeling. The only problem is my pitiful research has not born it out and again I get no reassurance from the doctor. I know the surgeon (who will do whatever is to be done) will tell me what my options are when the time comes. And I know at this point it's fruitless to worry about. But how can I help it when my mind brings it back to me?
Sunday, June 05, 2005
Mastectomy
The thought of a mastectomy is very disturbing to me. I can't fathom having a part of my body removed. And I can't help being suspicious of a medical community that has historically treated women with considerable less dignity than men. I've never heard of reports of doctors encouraging men to have parts of their bodies removed if not absolutely medically necessary, yet this sort of thing has been documented to happen to women time and again. We all know woman who have had things like routine C-sections and hysterectomies for reasons that don't seem to make sense. Is it any wonder that I buck at the suggestion of a mastectomy by a doctor who seems to have made up his mind but is reluctant to discuss it with me? Of course, I know it's up to me whether we follow that course or not, but how do I make an informed decision when I don't trust the doctor? Perhaps something will change before the end of chemo and this line of thought will be moot, but until then I'm trying to hash it out and prepare myself for the worst.
The surprising thing to me in all this is many women's reaction when I tell them I don't want a mastectomy. They can't understand why this would be a problem for me. They would not hesitate to have it done. They invariably say, "Don't you want to live?" Which brings up the question, just how far would you go to live? What price will you pay? Mutilation? Kidney failure and thus life on dialysis? Or, in light of my recent liver problems, some other organ failure? Alive, but feeling sick all the time so that your life sucks? To me, life is only worth it if you can enjoy it. Of course, losing a breast wouldn't make life unbearable, but it would alter it in a way that you shouldn't take lightly. The doc doesn't seem to think it's reasonable to want to know if there are other options because TO HIM it's the best option. And maybe it is, but I can't say right now because I don't have all the facts. And no one is asking the doc to lop off a part of his body.
Some of my women friends have said they would have a mastectomy even if the doc told them a lumpectomy would do the job. This leads me to wonder if they hate their own bodies or is that the depth of their fear of death. They say, no one will be able to tell. You'll wear a prosthesis or have reconstructive surgery. But the point for me is not whether other people can tell. The point is I will have to look at myself in the mirror every day and my body will no longer look or (just as important, if not more) feel like me. Perhaps I'm a more tactile person.
I went online and found pictures of women who had had mastectomies. The pictures were meant to reassure women facing this decision, but the women in the pictures were terribly scarred. I reacted to the pictures with emotional horror. How could this be okay? Some of the pictures showed the various ways reconstructions are done while others showed mastectomies without reconstruction. The ones without were actually less disturbing than the ones with. They use flesh from other parts of a woman's body (such as the abdomen) for the reconstructed breast. In one picture, for example, not only was her chest full of scars, but she was scarred all over her abdomen as if she had been eviscerated. Also her belly button was off center. The result was a crisscross of scars and a nippleless chunk of flesh with no feeling that came no where near matching her other breast.
Someone told me that someone had told them that when they went through it the flesh of the breast was removed, but the outer skin and nipple where left intact. In this way she had an implant (like you would with a breast enlargement) and it looked fine. This wouldn't be so bad, but it is hearsay and I haven't found anything online like this. My doctor, of course, is loathe to discuss it. I know the surgeon will tell me my options when the time comes and it's pointless to worry about until then, but I can't help it if my mind goes back there. I haven't looked at or for any more pictures, though. That was a bad idea.
I think what the doc doesn't understand (and some of my women friends) is how I will feel after it's done. He says once you have the mastectomy you will be all done with it. But I won't. I'll have to live disfigured for the rest of my life. He will, however, be done with me, so I guess that's a good thing.
Again this whole thought process may be pointless, because as the doc is fond of saying, it's too soon to discuss. Anything could happen. For example, I sure didn't expect the tumors to shrink so quickly. Now that I've gotten this out of my system I'll go back to being as optimistic as I can.
Sometimes I feel like life is just a series of tests. I wonder how I'm doing on this one?
The surprising thing to me in all this is many women's reaction when I tell them I don't want a mastectomy. They can't understand why this would be a problem for me. They would not hesitate to have it done. They invariably say, "Don't you want to live?" Which brings up the question, just how far would you go to live? What price will you pay? Mutilation? Kidney failure and thus life on dialysis? Or, in light of my recent liver problems, some other organ failure? Alive, but feeling sick all the time so that your life sucks? To me, life is only worth it if you can enjoy it. Of course, losing a breast wouldn't make life unbearable, but it would alter it in a way that you shouldn't take lightly. The doc doesn't seem to think it's reasonable to want to know if there are other options because TO HIM it's the best option. And maybe it is, but I can't say right now because I don't have all the facts. And no one is asking the doc to lop off a part of his body.
Some of my women friends have said they would have a mastectomy even if the doc told them a lumpectomy would do the job. This leads me to wonder if they hate their own bodies or is that the depth of their fear of death. They say, no one will be able to tell. You'll wear a prosthesis or have reconstructive surgery. But the point for me is not whether other people can tell. The point is I will have to look at myself in the mirror every day and my body will no longer look or (just as important, if not more) feel like me. Perhaps I'm a more tactile person.
I went online and found pictures of women who had had mastectomies. The pictures were meant to reassure women facing this decision, but the women in the pictures were terribly scarred. I reacted to the pictures with emotional horror. How could this be okay? Some of the pictures showed the various ways reconstructions are done while others showed mastectomies without reconstruction. The ones without were actually less disturbing than the ones with. They use flesh from other parts of a woman's body (such as the abdomen) for the reconstructed breast. In one picture, for example, not only was her chest full of scars, but she was scarred all over her abdomen as if she had been eviscerated. Also her belly button was off center. The result was a crisscross of scars and a nippleless chunk of flesh with no feeling that came no where near matching her other breast.
Someone told me that someone had told them that when they went through it the flesh of the breast was removed, but the outer skin and nipple where left intact. In this way she had an implant (like you would with a breast enlargement) and it looked fine. This wouldn't be so bad, but it is hearsay and I haven't found anything online like this. My doctor, of course, is loathe to discuss it. I know the surgeon will tell me my options when the time comes and it's pointless to worry about until then, but I can't help it if my mind goes back there. I haven't looked at or for any more pictures, though. That was a bad idea.
I think what the doc doesn't understand (and some of my women friends) is how I will feel after it's done. He says once you have the mastectomy you will be all done with it. But I won't. I'll have to live disfigured for the rest of my life. He will, however, be done with me, so I guess that's a good thing.
Again this whole thought process may be pointless, because as the doc is fond of saying, it's too soon to discuss. Anything could happen. For example, I sure didn't expect the tumors to shrink so quickly. Now that I've gotten this out of my system I'll go back to being as optimistic as I can.
Sometimes I feel like life is just a series of tests. I wonder how I'm doing on this one?
Saturday, June 04, 2005
Talk about Anger
About three weeks ago, for about a week, I was angry. Really angry. Overflowing with it. The anger came bubbling up out of me, like a pot of water left too long to boil. And like that pot of water, once it all boiled out I was left empty.
I didn’t realize the rage was growing inside me until I snapped at a coworker who reminded me of a policy change (yet another) that I had forgotten. I apologized immediately for taking my frustration over my memory difficulties out on her and she accepted my apologies. But the incident left me feeling out of control.
Why all the anger and frustration? Let me count the ways.
1. Apparently, chemo or stress or uncertainty (I can’t really say which because this is one of the questions the doctor has failed to answer for me) causes problems with memory. It’s a struggle to remember simple things or keep track of changes at work or family schedules at home. I’m not normally a list maker, but I’ve had to become one to organize my work. I feel like I’m loosing brainpower if not my mind (jury is still out on that).
2. I take pride in my work and now because of the time I’m forced to take off or due to utter exhaustion, I’m unable to do my job well. I can’t keep up. My work is behind and I can’t keep track of new policy memos. I’m angry with myself for not being able to overcome this situation and continue to do a good job.
3. This situation has taken over my life, my time, my freedom. I can’t get away from it. I am Cancer Woman day and night. From the dust that constantly gets in my eyes because my eyelashes are too few and short to protect them to the pain in my chest from the port being squeezed that wakes me in the middle of the night. Everything I do, I have to plan around cancer treatment.
4. Though I think it’s too late in the middle of treatment to change doctors, I’m getting more and more unhappy with the oncologist. He always seems to be rushed, running out of the room before I finish asking my questions. When I do get the questions out he tells me it is too soon to ask or I’m not paying attention. That means he thinks I’m arguing about treatment when all I want is an explanation. Please tell me why we are following this course of treatment and what is the next step. He seems to take these inquiries as questioning his decisions. He talks to me as if I couldn’t possibly understand. This, of course, is compounded by my loss of words, due in part to chemo. Sometimes it's even a struggle to get the words to come out of my mouth.
5. When I have a problem the doc tells me either, chemo doesn’t do that (and he sends me to another specialist or just shrugs) or acts annoyed that I didn’t tell him sooner, or gives me the impression that perhaps it’s my own fault? Or sometimes, he asks why I am telling him about something and not just calling my PCP. Of course then he fussed at me for telling my PCP something before mentioning it to him. It’s all very confusing and again, I can’t get straight answers out of anyone.
6. When this all began everyone at the Treatment Center was so nice and concerned and attentive. I thought as time went by that I would receive very thoughtful and comprehensive care. That has not turned out to be the case, at least not in the way I imagined. Oh, I think I’m getting the right course of treatment, with the chemo and the blood tests monitoring everything and the doctor visit schedule, etc. (Only because my own research online seems to suggest this is the most common way to treat Stage III breast cancer). The problem is there has been nothing beyond chemo and blood tests. For example, I expected some advice on nutrition because it’s hard to eat normal foods when everything tastes bad. Perhaps to even talk to a nutritionist. It’s important to eat more than Jell-O! Yet no one has talked to me about it beyond, “How’s your appetite?” Although I’ve told them “poor” the last 4 or 5 visits no one has commented on it. They write it down and go on with the next question as if I’m a research project and they’re just gathering data. When I directly ask they say, try to eat better. The only nutritional advice I’ve gotten is online (where I learned it’s important not to lose weight while undergoing chemo) and from my nephrologist who was concerned about my potassium and magnesium levels. The oncologist never even mentioned they were off as if his only concern is hemoglobin. This is scary to me as I am a whole person, not just blood and cancer. I don’t want to rid myself of cancer by forfeiting the rest of my health. Which leads to…
7. The doctor seems to think quantity of life is more important than quality. I may be misreading this, but it’s hard to tell because he won’t answer my questions about what happens after chemo. The first time I asked him what happens after the chemo is over he just said matter-of-factly, “Then you’ll have a mastectomy.” I was shocked at this because we had never discussed this. We had discussed lumpectomy. I reminded him of that and asked him if a mastectomy was necessary. I think this is the point he really started getting annoyed with me. He said for me it was the way to go. I asked him why? He said it was too soon to discuss. But it was clear he had already decided so I pressed him to explain why lopping off my breast was preferable to removing the lump. His response was because it is shrinking so fast there may not be a lump so we take the whole breast and that way we can chop it up and see if there is any cancer left. I asked if this was purely done “just in case” as a preventative measure or if there was a medical reason to do it. Wouldn’t a PET scan tell him if there was any cancer left? I still don’t know. He looked at me as if I was insane. Certifiable. This was the end of the conversation. Again he insisted it was too soon to discuss it. and quickly left the room. I had no choice but to let it go that day. Another day I tried to discuss it with him again. I told him, I need to understand what the steps are (after the chemo) that he'll take to decide what options I have. I told him I wasn’t questioning his authority; I just needed to understand everything. I want to be sure that what I am putting myself through, will be worth the outcome. Again he insisted it was too soon to discuss it. This only worries me more. It tells me that whatever lays in store can’t be good because he would offer nothing beyond the very next chemo treatment. And I feel he is denying me the power to make decisions based on my own priorities.
8. There has been no concern (at the center) about how I’m doing emotionally (or my family for that matter) or suggestions for dealing with this. I might as well have the flu. Even though, like the poor appetite, I’ve told them I often don’t sleep well unless I take a sleeping pill.
9. It has become clear to me that the doctor and his staff have no regard for any one’s time but the doctor’s. They have no trouble calling me at the last minute and asking me to come at a different time than scheduled. Never mind that I’ve had an appointment for over a week, at a time they initially insisted on. I’m coming from 80 miles away. I often am relying on someone else to take me who has arranged their schedule to accomodate me. Sometimes I have scheduled appointments with other doctors on the same day which they are well aware of. Then they become highly annoyed if I’m unable to change my schedule to suit their whim. My last appointment they asked if I could come early in the morning because the doc had hospital rounds in the afternoon. I told them, no problem. I arrived 20 minutes early, was the second appointment and I still waited two hours after my appointment time before the doctor came in. Why? I don’t know. Maybe he decided to do his rounds first. Then he told us, based on LAST WEEK’S blood work, he decided not to do chemo that day. Now tell me why he didn’t call me and tell me this and save me the trip (and gas $)? Not to mention the prescription I took before leaving the house in preparation for chemo that I now have to refill - another $24. And Luke and I both missed another workday unnecessarily.
These are some of the things I was and am angry about. The ones that immediately come to mind, anyway. I have better control of it now because I think my hormones have leveled off some. At least the vaginal bleeding seems to have stopped. And as I said before, this week off from chemo has done me some physical and emotional good.
I just did a word count – 1550 words. That’s a whole chapter. Which reminds me, I should be working on my young adult fantasy novel not complaining about my current lot in life.
The happy thing that happened: Got a postcard from Egypt where my sister Sharon took a two-week trip. How cool is that?
I didn’t realize the rage was growing inside me until I snapped at a coworker who reminded me of a policy change (yet another) that I had forgotten. I apologized immediately for taking my frustration over my memory difficulties out on her and she accepted my apologies. But the incident left me feeling out of control.
Why all the anger and frustration? Let me count the ways.
1. Apparently, chemo or stress or uncertainty (I can’t really say which because this is one of the questions the doctor has failed to answer for me) causes problems with memory. It’s a struggle to remember simple things or keep track of changes at work or family schedules at home. I’m not normally a list maker, but I’ve had to become one to organize my work. I feel like I’m loosing brainpower if not my mind (jury is still out on that).
2. I take pride in my work and now because of the time I’m forced to take off or due to utter exhaustion, I’m unable to do my job well. I can’t keep up. My work is behind and I can’t keep track of new policy memos. I’m angry with myself for not being able to overcome this situation and continue to do a good job.
3. This situation has taken over my life, my time, my freedom. I can’t get away from it. I am Cancer Woman day and night. From the dust that constantly gets in my eyes because my eyelashes are too few and short to protect them to the pain in my chest from the port being squeezed that wakes me in the middle of the night. Everything I do, I have to plan around cancer treatment.
4. Though I think it’s too late in the middle of treatment to change doctors, I’m getting more and more unhappy with the oncologist. He always seems to be rushed, running out of the room before I finish asking my questions. When I do get the questions out he tells me it is too soon to ask or I’m not paying attention. That means he thinks I’m arguing about treatment when all I want is an explanation. Please tell me why we are following this course of treatment and what is the next step. He seems to take these inquiries as questioning his decisions. He talks to me as if I couldn’t possibly understand. This, of course, is compounded by my loss of words, due in part to chemo. Sometimes it's even a struggle to get the words to come out of my mouth.
5. When I have a problem the doc tells me either, chemo doesn’t do that (and he sends me to another specialist or just shrugs) or acts annoyed that I didn’t tell him sooner, or gives me the impression that perhaps it’s my own fault? Or sometimes, he asks why I am telling him about something and not just calling my PCP. Of course then he fussed at me for telling my PCP something before mentioning it to him. It’s all very confusing and again, I can’t get straight answers out of anyone.
6. When this all began everyone at the Treatment Center was so nice and concerned and attentive. I thought as time went by that I would receive very thoughtful and comprehensive care. That has not turned out to be the case, at least not in the way I imagined. Oh, I think I’m getting the right course of treatment, with the chemo and the blood tests monitoring everything and the doctor visit schedule, etc. (Only because my own research online seems to suggest this is the most common way to treat Stage III breast cancer). The problem is there has been nothing beyond chemo and blood tests. For example, I expected some advice on nutrition because it’s hard to eat normal foods when everything tastes bad. Perhaps to even talk to a nutritionist. It’s important to eat more than Jell-O! Yet no one has talked to me about it beyond, “How’s your appetite?” Although I’ve told them “poor” the last 4 or 5 visits no one has commented on it. They write it down and go on with the next question as if I’m a research project and they’re just gathering data. When I directly ask they say, try to eat better. The only nutritional advice I’ve gotten is online (where I learned it’s important not to lose weight while undergoing chemo) and from my nephrologist who was concerned about my potassium and magnesium levels. The oncologist never even mentioned they were off as if his only concern is hemoglobin. This is scary to me as I am a whole person, not just blood and cancer. I don’t want to rid myself of cancer by forfeiting the rest of my health. Which leads to…
7. The doctor seems to think quantity of life is more important than quality. I may be misreading this, but it’s hard to tell because he won’t answer my questions about what happens after chemo. The first time I asked him what happens after the chemo is over he just said matter-of-factly, “Then you’ll have a mastectomy.” I was shocked at this because we had never discussed this. We had discussed lumpectomy. I reminded him of that and asked him if a mastectomy was necessary. I think this is the point he really started getting annoyed with me. He said for me it was the way to go. I asked him why? He said it was too soon to discuss. But it was clear he had already decided so I pressed him to explain why lopping off my breast was preferable to removing the lump. His response was because it is shrinking so fast there may not be a lump so we take the whole breast and that way we can chop it up and see if there is any cancer left. I asked if this was purely done “just in case” as a preventative measure or if there was a medical reason to do it. Wouldn’t a PET scan tell him if there was any cancer left? I still don’t know. He looked at me as if I was insane. Certifiable. This was the end of the conversation. Again he insisted it was too soon to discuss it. and quickly left the room. I had no choice but to let it go that day. Another day I tried to discuss it with him again. I told him, I need to understand what the steps are (after the chemo) that he'll take to decide what options I have. I told him I wasn’t questioning his authority; I just needed to understand everything. I want to be sure that what I am putting myself through, will be worth the outcome. Again he insisted it was too soon to discuss it. This only worries me more. It tells me that whatever lays in store can’t be good because he would offer nothing beyond the very next chemo treatment. And I feel he is denying me the power to make decisions based on my own priorities.
8. There has been no concern (at the center) about how I’m doing emotionally (or my family for that matter) or suggestions for dealing with this. I might as well have the flu. Even though, like the poor appetite, I’ve told them I often don’t sleep well unless I take a sleeping pill.
9. It has become clear to me that the doctor and his staff have no regard for any one’s time but the doctor’s. They have no trouble calling me at the last minute and asking me to come at a different time than scheduled. Never mind that I’ve had an appointment for over a week, at a time they initially insisted on. I’m coming from 80 miles away. I often am relying on someone else to take me who has arranged their schedule to accomodate me. Sometimes I have scheduled appointments with other doctors on the same day which they are well aware of. Then they become highly annoyed if I’m unable to change my schedule to suit their whim. My last appointment they asked if I could come early in the morning because the doc had hospital rounds in the afternoon. I told them, no problem. I arrived 20 minutes early, was the second appointment and I still waited two hours after my appointment time before the doctor came in. Why? I don’t know. Maybe he decided to do his rounds first. Then he told us, based on LAST WEEK’S blood work, he decided not to do chemo that day. Now tell me why he didn’t call me and tell me this and save me the trip (and gas $)? Not to mention the prescription I took before leaving the house in preparation for chemo that I now have to refill - another $24. And Luke and I both missed another workday unnecessarily.
These are some of the things I was and am angry about. The ones that immediately come to mind, anyway. I have better control of it now because I think my hormones have leveled off some. At least the vaginal bleeding seems to have stopped. And as I said before, this week off from chemo has done me some physical and emotional good.
I just did a word count – 1550 words. That’s a whole chapter. Which reminds me, I should be working on my young adult fantasy novel not complaining about my current lot in life.
The happy thing that happened: Got a postcard from Egypt where my sister Sharon took a two-week trip. How cool is that?
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