Not sure what's up with me...two blog posts in one day. I gotta rant for a little while though.
All my life, it seems, my lady parts have been giving me grief. I was diagnosed with endometriosis when I was 24, just shy of NumberOneSon's first birthday. As a matter of fact, I had surgery and then had his birthday party the following weekend. What can I say, you have a lot more energy when you're in your 20s.
Just six weeks after my surgery, the pain came back. A month later we moved to Louisiana so I got to try to find another doctor. The first one I saw was a quack. I thought maybe I could just muddle through for awhile. But no, I needed a doctor. The second one was pretty good and we managed for several years.
After I graduated from nursing school and got a job, I got new health insurance and had to find a new doctor. I asked around and Dr. B came highly recommended. I continued to muddle through but eventually the pain just got to be too much and I had surgery again. This time I had real relief. And apparently real fertility too, because I was pregnant with Ms. Thang three months later. In spite of the Pill.
And then 16 days short of two years later, BabyBoy came along. Also in spite of the Pill.
**Boys and girls, do not trust just one form of birth control if you really don't want to have a kid.**
Don't get me wrong...I was excited to have my babies, we were just surprised, that's all. If I had waited till I thought I was ready, well, I'd probably still be waiting.
My lady parts had gone from giving me pain to working a little too good.
All that pregnancy and breastfeeding helped keep the endometriosis at bay for awhile. But when BabyBoy was about three, I started to have some pain here and there. It was livable but in the back of my mind I knew at some point I'd probably have to have another surgery.
In 2010 I got my upper lady parts squished and found out I had breast cancer. I had the surgeries and chemo, took a shot and pill to suppress estrogen since it was an estrogen receptor positive cancer (the most common, least aggressive and most treatable kind). The added bonus was that it cured my endometriosis.
Unfortunately, the miracle shot and pill have given me old lady bones. In an effort to not break a hip, my doctor changed my pill from an aromatase inhibitor to a SERM (selective estrogen receptor modulator). Apparently SERMs are anti-estrogen in breast tissue but pro-estrogen in the uterus. I'm still trying to figure out how that works.
Anyway, the pro-estrogen causes the lining of the uterus to grow and since endometriosis is simply uterine tissue growing outside the uterus, that's growing too. So now I have severe intermittent pain. I went to the GYN NP today and I go back to see the OB-GYN in two weeks.
There are a few treatment options...progesterone to counter the estrogen. Going back on the aromatase inhibitor. Stopping the SERM and just taking the shot. Surgery to clean out the endometriosis. A hysterectomy.
So now I've gotta do MORE research and try to figure out what's best. As if I don't have enough things to keep me busy.
So curse you, lady parts. You're nothing but trouble.
RDG
Wednesday, September 25, 2013
Retrospection...and change
Fall is a stressful time for me. I think it is for most people too, because as a child it represented going back to school and giving up the freedom of summer. Even as adults, there's just something about the cooler mornings and shorter days that bring about feelings of melancholy, especially when you start thinking about scraping car windows and shoveling snow (Missouri winters) or seemingly endless rain (Louisiana winters).
For me, though, fall represents one of the most difficult times of my life. It was when I was deep in the throes of cancer. Technically I had surgery in late summer, but chemo dominated the fall. So for me, fall is cancer weather. Driving three and a half hours to St. Louis, waiting. Getting my blood drawn, waiting. Seeing the doctor, waiting. Checking in for chemo, waiting. Going back to the chemo area, waiting. Starting the IV and hanging the IV fluids, waiting. Hanging the first bag of poison, then the second, then waiting to make sure I didn't have a weird reaction. And then finally, escape. Two of my chemo days I drove up the day before and stayed in a hotel and then drove back after chemo. One day we did it all in one day (the longest day EVER!!) and one day we drove up on chemo day and then stayed the night in a hotel and came back the next day. That trip was the most fun because it involved a lot of eating and shopping.
I had breakfast with my friend BeBe the other day and of course, as girls do, we talked about all sorts of things. She reminded me of some things I'd forgotten about that happened while I was sick and while I was recovering. I mentioned that I'd come across a notebook where I'd written down possible blog topics. Sadly, most of the topics are things that I don't remember the stories that go with them.
So if I ever ranted to you about something that happened during that time but you didn't see it mentioned in the blog, kindly drop me a note and refresh my memory. I'd like to fill in the blanks of the story. I'm tossing around the possibility of making an eBook out of it. Plus, I'd just like to know what happened! After all, it happened to me!
I spent some time the other day rereading my blog. I didn't go all the way back to the beginning (at some point I will) but rereading words I'd written a year ago, two years ago, three years ago, all I can say is, wow. Some of it was funny, a little of it was deep, most of it was crap.
And some of it was hurtful.
If my friend was going through cancer treatment and I read her blog and saw that she'd written something that I thought was about me and it was less than flattering, my feelings would definitely be hurt. I hope I'd wait till she was feeling better to say something. I'd hope that I'd understand that her negative feelings toward me were her point of view at that time, in the light of what she was going through. That maybe she was lashing out in anger, that a wealth of things seemed wrong but she only focused on a few. The easy ones. The low hanging fruit so to speak.
So...if you ever read my blog and said WTH? Did she really just say that? Was she talking about me? Just know that I was coming from a place of INSANITY. Cancer will do that to you. The unknown of whether you will live or die, whether you'll be sick or cured, whether the cancer will be eradicated or it will come back will absolutely make you crazy. And the crazy part about it is, you may not even KNOW you're crazy!!
Factor in a dose of cyclothymic (mild bipolar) disorder with the false anonymity of the Internet and it's a recipe for disaster. It's seriously a wonder that my friends and family are even speaking to me.
But they are. They showed me grace by forgiving me.
As I was rereading, there were parts that I cringed at. Ugh, I really said that? Parts that I'd like to take down, parts that were poorly written or used more salty language than I'd like to admit that I've used (and sometimes, in spite of my best efforts, still use). Parts that were hurtful, complaining because things weren't going my way. Whining. But it's what I went through. And if someone who's going through cancer reads it, they need to see the whole thing. Not just the nice parts. The ugly parts. The ugliness deep down in my soul. Inspirational stuff is nice, but what kind of person do you feel like if every cancer blog you read is all nice and all you have are black thoughts? I was angry. About losing my job, about getting cancer, about having to have multiple surgeries and go through chemo and take these awful drugs that put me into menopause. I was angry about hot flashes and not feeling attractive and not being able to go anywhere because my white count was too low or I just didn't feel like it. I was angry that I'd gained weight, my clothes didn't fit, my hair was coming back in and it looked awful.
In retrospect, I could have handled a host of things differently over the past three years. But, I didn't. And what's in my blog is what happened, at least from my point of view. I wish it wasn't my story. I wish my story was all happiness and inspiration.
If you read Little Women...I wish I could have been Beth. But most of the time I was Jo or Amy.
Alright, enough retrospection. It's time for a little change.
I'm going to go back through my blog and remove the posts that have nothing to do with cancer. I'll be moving these to a new blog that I'm calling The Secret Life of a PTA Mom (I'm sure there will be some disappointed pervy web surfers that discover it's not a porn site).
I'll still blog occasionally here about cancer, a subject that I hate and wish would go away. But the reality is that at this point cancer is no longer consuming my life and that's a good thing.
RDG
For me, though, fall represents one of the most difficult times of my life. It was when I was deep in the throes of cancer. Technically I had surgery in late summer, but chemo dominated the fall. So for me, fall is cancer weather. Driving three and a half hours to St. Louis, waiting. Getting my blood drawn, waiting. Seeing the doctor, waiting. Checking in for chemo, waiting. Going back to the chemo area, waiting. Starting the IV and hanging the IV fluids, waiting. Hanging the first bag of poison, then the second, then waiting to make sure I didn't have a weird reaction. And then finally, escape. Two of my chemo days I drove up the day before and stayed in a hotel and then drove back after chemo. One day we did it all in one day (the longest day EVER!!) and one day we drove up on chemo day and then stayed the night in a hotel and came back the next day. That trip was the most fun because it involved a lot of eating and shopping.
I had breakfast with my friend BeBe the other day and of course, as girls do, we talked about all sorts of things. She reminded me of some things I'd forgotten about that happened while I was sick and while I was recovering. I mentioned that I'd come across a notebook where I'd written down possible blog topics. Sadly, most of the topics are things that I don't remember the stories that go with them.
So if I ever ranted to you about something that happened during that time but you didn't see it mentioned in the blog, kindly drop me a note and refresh my memory. I'd like to fill in the blanks of the story. I'm tossing around the possibility of making an eBook out of it. Plus, I'd just like to know what happened! After all, it happened to me!
I spent some time the other day rereading my blog. I didn't go all the way back to the beginning (at some point I will) but rereading words I'd written a year ago, two years ago, three years ago, all I can say is, wow. Some of it was funny, a little of it was deep, most of it was crap.
And some of it was hurtful.
If my friend was going through cancer treatment and I read her blog and saw that she'd written something that I thought was about me and it was less than flattering, my feelings would definitely be hurt. I hope I'd wait till she was feeling better to say something. I'd hope that I'd understand that her negative feelings toward me were her point of view at that time, in the light of what she was going through. That maybe she was lashing out in anger, that a wealth of things seemed wrong but she only focused on a few. The easy ones. The low hanging fruit so to speak.
So...if you ever read my blog and said WTH? Did she really just say that? Was she talking about me? Just know that I was coming from a place of INSANITY. Cancer will do that to you. The unknown of whether you will live or die, whether you'll be sick or cured, whether the cancer will be eradicated or it will come back will absolutely make you crazy. And the crazy part about it is, you may not even KNOW you're crazy!!
Factor in a dose of cyclothymic (mild bipolar) disorder with the false anonymity of the Internet and it's a recipe for disaster. It's seriously a wonder that my friends and family are even speaking to me.
But they are. They showed me grace by forgiving me.
As I was rereading, there were parts that I cringed at. Ugh, I really said that? Parts that I'd like to take down, parts that were poorly written or used more salty language than I'd like to admit that I've used (and sometimes, in spite of my best efforts, still use). Parts that were hurtful, complaining because things weren't going my way. Whining. But it's what I went through. And if someone who's going through cancer reads it, they need to see the whole thing. Not just the nice parts. The ugly parts. The ugliness deep down in my soul. Inspirational stuff is nice, but what kind of person do you feel like if every cancer blog you read is all nice and all you have are black thoughts? I was angry. About losing my job, about getting cancer, about having to have multiple surgeries and go through chemo and take these awful drugs that put me into menopause. I was angry about hot flashes and not feeling attractive and not being able to go anywhere because my white count was too low or I just didn't feel like it. I was angry that I'd gained weight, my clothes didn't fit, my hair was coming back in and it looked awful.
In retrospect, I could have handled a host of things differently over the past three years. But, I didn't. And what's in my blog is what happened, at least from my point of view. I wish it wasn't my story. I wish my story was all happiness and inspiration.
If you read Little Women...I wish I could have been Beth. But most of the time I was Jo or Amy.
Alright, enough retrospection. It's time for a little change.
I'm going to go back through my blog and remove the posts that have nothing to do with cancer. I'll be moving these to a new blog that I'm calling The Secret Life of a PTA Mom (I'm sure there will be some disappointed pervy web surfers that discover it's not a porn site).
I'll still blog occasionally here about cancer, a subject that I hate and wish would go away. But the reality is that at this point cancer is no longer consuming my life and that's a good thing.
RDG
Friday, September 6, 2013
Absence makes the heart grow fonder...
I didn't realize it had been so long since I last posted to my blog. Over a year. Wow. Well, I guess I've been pretty busy and things have been getting back to normal so I really haven't had much to say. Until now.
I went to the doctor this past Tuesday and got some unexpected news. I'm three years out from my mastectomy and I still have a little over two years to go taking hormone/endocrine therapy. Since I had an estrogen-receptor positive tumor, the recommendation is to take something to block estrogen for five years post chemotherapy. When I went to the oncologist to set up the chemo, she suggested I enroll in a clinical trial comparing an aromatase inhibitor (exemestane) to tamoxifen, the traditional treatment. I was randomized to the test group. Because I've not entered menopause yet, I've also been taking a shot that completely blocks my ovaries from producing estrogen. Exemestane blocks the estrogen produced by other parts of your body (who knew that estrogen came from anywhere else?). So I guess you could say I'm in a chemically induced menopause.
Because I'm menopausal, I am more likely to have decreased bone density. They did a bone density scan about 2.5 years ago and it didn't look bad for my age. However, I had another one Tuesday and I now have osteopenia, which is mild bone loss. In 2.5 years I've lost 8% of my bone density. That doesn't sound like much but apparently it's pretty bad. My oncology NP wanted me to go over to the chemo area and get an IV of Reclast (same type of drugs that Sally Field and Blythe Danner advertise on TV). I've heard some bad things about bisphosphonates so I was leery and since my bone density didn't decrease overnight, I decided to come home and do a little research.
Come to find out, my menopause formula vitamins only have 25% of the RDA for calcium. You'd think a vitamin made for women who are at risk for bone loss would have enough calcium in it!! As I look back over the course of the last couple of years, I realized that after I cut soda out of my diet and started eating healthier, I don't have nearly as much heartburn so I rarely take Tums anymore. I used to take 2-4 of them a day, in addition to taking Pepcid.
So trying to be healthy has made me...less healthy.
Good grief.
Oh, well, at least we caught it. After doing a little more research, I found that tamoxifen can actually improve bone density. It's a drug that's in the same class as Evista, which treat osteoporosis!! So if I'd been randomized to the control group of the study, or opted not to do the study, I likely wouldn't have osteopenia right now.
So trying to help others has actually...hurt me.
Seriously?
It is what it is. I can't change what's happened to me over the past three years but I can make changes for the future. My oncology NP called me this morning and she's going to call in a prescription for tamoxifen. I'm still going to take the sweet monthly menopause shot. I'm also taking calcium supplements and *gasp* walking and lifting weights to hopefully improve my bone density. We'll do another bone scan in a year to see if it's better, the same or worse. Better would be best, but even the same is acceptable since bone density does not change quickly.
After a few days to mull this over, I'm over my initial anger and fear. I'm super stoked that I've gotten a clean bill of health once again as far as the cancer goes. I'm glad that my complication is something that can be treated with diet and exercise and a medication change rather than adding another medication. I'm glad that in all my clumsiness I haven't broken any bones.
It's all good.
I went to the doctor this past Tuesday and got some unexpected news. I'm three years out from my mastectomy and I still have a little over two years to go taking hormone/endocrine therapy. Since I had an estrogen-receptor positive tumor, the recommendation is to take something to block estrogen for five years post chemotherapy. When I went to the oncologist to set up the chemo, she suggested I enroll in a clinical trial comparing an aromatase inhibitor (exemestane) to tamoxifen, the traditional treatment. I was randomized to the test group. Because I've not entered menopause yet, I've also been taking a shot that completely blocks my ovaries from producing estrogen. Exemestane blocks the estrogen produced by other parts of your body (who knew that estrogen came from anywhere else?). So I guess you could say I'm in a chemically induced menopause.
Because I'm menopausal, I am more likely to have decreased bone density. They did a bone density scan about 2.5 years ago and it didn't look bad for my age. However, I had another one Tuesday and I now have osteopenia, which is mild bone loss. In 2.5 years I've lost 8% of my bone density. That doesn't sound like much but apparently it's pretty bad. My oncology NP wanted me to go over to the chemo area and get an IV of Reclast (same type of drugs that Sally Field and Blythe Danner advertise on TV). I've heard some bad things about bisphosphonates so I was leery and since my bone density didn't decrease overnight, I decided to come home and do a little research.
Come to find out, my menopause formula vitamins only have 25% of the RDA for calcium. You'd think a vitamin made for women who are at risk for bone loss would have enough calcium in it!! As I look back over the course of the last couple of years, I realized that after I cut soda out of my diet and started eating healthier, I don't have nearly as much heartburn so I rarely take Tums anymore. I used to take 2-4 of them a day, in addition to taking Pepcid.
So trying to be healthy has made me...less healthy.
Good grief.
Oh, well, at least we caught it. After doing a little more research, I found that tamoxifen can actually improve bone density. It's a drug that's in the same class as Evista, which treat osteoporosis!! So if I'd been randomized to the control group of the study, or opted not to do the study, I likely wouldn't have osteopenia right now.
So trying to help others has actually...hurt me.
Seriously?
It is what it is. I can't change what's happened to me over the past three years but I can make changes for the future. My oncology NP called me this morning and she's going to call in a prescription for tamoxifen. I'm still going to take the sweet monthly menopause shot. I'm also taking calcium supplements and *gasp* walking and lifting weights to hopefully improve my bone density. We'll do another bone scan in a year to see if it's better, the same or worse. Better would be best, but even the same is acceptable since bone density does not change quickly.
After a few days to mull this over, I'm over my initial anger and fear. I'm super stoked that I've gotten a clean bill of health once again as far as the cancer goes. I'm glad that my complication is something that can be treated with diet and exercise and a medication change rather than adding another medication. I'm glad that in all my clumsiness I haven't broken any bones.
It's all good.
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