I tend to lump shopping for the Holiday Outfit in the same category as shopping for a new swimsuit. Both are items I don't wear a lot, they tend to fit tighter than my regular clothes, there is always a certain expectation (primarily mine) that I am supposed to look nice in the garment, and both have a lot to do with cleavage.
While I have become a fan of retail therapy, I usually stick to easy things like shoes and boots. Because of my height, I can't buy pants without special ordering them anytime, and tops and dresses are not my favorites lately. Last weekend I gave or put away all the dresses and blouses in my closet because not one of them fits me anymore.
The company my husband works for does a very elegant holiday party each year. They tend to book very fancy hotels and put the couples up for the night. This year they are sending us to the Inn at Spanish Bay. Sweaters and jeans are not going to cut it here.
Yesterday I decided that I could either hide at home and miss what is always a fabulous party, or suck it up and find something that will work. Frankly, I don't know who had a harder time, me or the salesgirls. When they found me looking around, they would ask what I needed, and I'd explain, "I need a holiday dress that requires no cleavage at all, no darts, no seams, no bustline detail, nothing." Then they'd bring me a dress with an empire waist and detailing at the bust. One young woman said she had just the thing and brought be a dress with built-in wires at the bust. As she brought it to me she explained that it was a great dress for small-chested women. I felt terrible as I saw her face fall when I explained that no bust sometimes means mastectomy, not small.
After several frustrating and unnerving hours of looking, I came home with two dresses that I'm willing to try on again. My husband will have to decide, or I'm wearing a sweater and jeans anyway.
Thursday, November 29, 2007
Sunday, November 25, 2007
What not to say
The American Cancer Society, along with a number of other cancer-related web sites, have pages dedicated to helping friends and family know what to say to their loved one who has been diagnosed. Among the most helpful advice is to offer specific help, and to not put more pressure on the individual. I am very fortunate that most of the people I know either read these sites or knew instinctively what to do and say. Friends I hadn't seen in a long time brought a meal or sent a card with well wishes. Those closest to me were and are nothing less than completely supportive and loving.
However, despite all of that kindness, the words of one individual, who thought they were being funny or something, keep coming back to me. This person called me a few days before my surgery with some questions they felt were appropriate. These included:
- Do you intend to make it through the sugery?
- Have you made arrangements in case you don't make it?
- Has your husband said goodbye to your breasts?
- Have you taken pictures of your breasts so you'll remember what they looked like?
Two months after my surgery I am struggling with chronic nausea and exhaustion from the Tamoxifen, anger and frustration about my mutiliated body, and difficulty figuring out what I am supposed to do with one person's utter lack of sensitivity.
Up until now, I kept this to myself because I didn't think it was worthy of repetition, but it hurt and I didn't know what to do. I've taken steps to protect myself and my children from this person, as they clearly do not understand boundaries or what is appropriate, but it still bothered me. Then yesterday, as I cleaned out my closet to get rid of all the clothes I can no longer wear, I realized that I still have power. I can take action to remove the things that no longer work for me, like my old clothes, and just maybe, I can get rid of a hurt by writing down.
Because really, as I read the words on the screen now, they are not a reflection on me, they are just the words of an ignorant person who really should have visited the American Cancer Society web site.
However, despite all of that kindness, the words of one individual, who thought they were being funny or something, keep coming back to me. This person called me a few days before my surgery with some questions they felt were appropriate. These included:
- Do you intend to make it through the sugery?
- Have you made arrangements in case you don't make it?
- Has your husband said goodbye to your breasts?
- Have you taken pictures of your breasts so you'll remember what they looked like?
Two months after my surgery I am struggling with chronic nausea and exhaustion from the Tamoxifen, anger and frustration about my mutiliated body, and difficulty figuring out what I am supposed to do with one person's utter lack of sensitivity.
Up until now, I kept this to myself because I didn't think it was worthy of repetition, but it hurt and I didn't know what to do. I've taken steps to protect myself and my children from this person, as they clearly do not understand boundaries or what is appropriate, but it still bothered me. Then yesterday, as I cleaned out my closet to get rid of all the clothes I can no longer wear, I realized that I still have power. I can take action to remove the things that no longer work for me, like my old clothes, and just maybe, I can get rid of a hurt by writing down.
Because really, as I read the words on the screen now, they are not a reflection on me, they are just the words of an ignorant person who really should have visited the American Cancer Society web site.
Thursday, November 15, 2007
Side Effects of Tamoxifen
The most well-known side effects of Tamoxifen are the menopause-related ones. These include hot flashes, weight gain, night sweats, changes in periods, etc. When my oncologists recommended this treatment, these are the ones they talked about.
According to a couple of the Tamoxifen-related web sites (and there are a lot!), additional side effects are nausea, headaches, depression, hair thinning, dizziness, tiredness, visual problems, voice changes, blood clots, and rarely, tumor flare.
The nausea and tiredeness are the first of the side effects I've noticed. Though, I can't be certain the exhaustion is the Tamoxifen alone, or if it is that coupled with too much work and not enough sleep. I'm guessing the latter two are most to blame for this one.
But the nausea is not fun. I've tried taking the Tamoxifen with food and I'm careful to take it at the same time every day, and I'm eating as healthy as I can, even though nothing tastes very good or appeals in any way. One of the web sites said this side effect only lasts a few weeks, so hopefully it will stop soon. I don't want to take any other meds to deal with this while I take the Tamoxifen. I have too many pills in my life right now as it is.
Looking on the bright side, as long as the nausea continues, I probably won't have to worry about the weight gain :-)
According to a couple of the Tamoxifen-related web sites (and there are a lot!), additional side effects are nausea, headaches, depression, hair thinning, dizziness, tiredness, visual problems, voice changes, blood clots, and rarely, tumor flare.
The nausea and tiredeness are the first of the side effects I've noticed. Though, I can't be certain the exhaustion is the Tamoxifen alone, or if it is that coupled with too much work and not enough sleep. I'm guessing the latter two are most to blame for this one.
But the nausea is not fun. I've tried taking the Tamoxifen with food and I'm careful to take it at the same time every day, and I'm eating as healthy as I can, even though nothing tastes very good or appeals in any way. One of the web sites said this side effect only lasts a few weeks, so hopefully it will stop soon. I don't want to take any other meds to deal with this while I take the Tamoxifen. I have too many pills in my life right now as it is.
Looking on the bright side, as long as the nausea continues, I probably won't have to worry about the weight gain :-)
Monday, November 12, 2007
A new schtick
Yesterday we celebrated my youngest daughter's "gotcha day" with a little party and some of the families who traveled to China with us those 5 years ago. Can it be that long?!
Each year we try to get together to just catch up and to marvel at how beautiful and amazing each of our daughters has gotten. This year we met at "Pump it Up", and indoor bounce house place, and then went to dinner at a local Chinese restaurant.
Over the years, things have changed with each of the families; job changes, moves, divorce, new chidren, all the things that families go through over the span of a child's life. This year I attended with just my two girls. My husband is on a business trip and couldn't make it.
I didn't think too much about it being a social occasion until I got there and suddenly felt very vulnerable. I'd purposely skipped a friend's birthday party the previous night because I knew I was not up to being in a social setting yet. When I talked with her about my hesitation, she'd been very understanding and I knew I made the right decision. However, In my focus on my daughter's special day, I forgot that this was also a social event. And, without my husband there, I was expected to be "on" and chatty.
The simple, "How has your year been?" is a loaded question for me and I am so tired lately that I can't seem to readily manage to come up with a pat, "Great! the girls have been.... and how has yours been?" with any conviction. And really, while I know I don't need to go into details, even a bit of the truth is tough to just throw out there without it landing like a grenade. Cancer? BAM! End of conversation.
One of the families knew what has been going on because I had to explain my hesitation this year to commit to going to the party at all. She was very sweet and said that I look great, that she couldn't tell that I'm sick. Snaps to me for good makeup and hair at least! Beyond that exchange, though, I found myself extremely edgy about how I look and what to say to people who I don't see that often.
In my last post I said that I don't think people really notice the change to my body because they are busy with ther own lives. I still believe that is true, but the problem is that, even though I can think that and then not worry about it when I'm going to work or church or with friends or family, I feel the difference when I'm in a social setting. I know I look different, and I know I feel different, and I don't yet have a set response, a good schtick, for the "How are things going?" question that always comes up in those settings.
I thought last night about how my parents had to handle these kinds of things when my dad broke his neck, though in their case, the wheelchar was the first clue into how their year had been. And then when my dad died, I remember the tension we felt all the years my siblings and I had to come up with responses about why no one ever met our dad.
I also thought about my mother-in-law, who dealt with breast cancer 35+ years ago, and especially about my sister-in-law, who has spent this past year coming to terms with the death of her partner last year. Almost everyone faces challenges in their lives that don't help when trying to come up with a tidy, socially acceptable reply to the question "How have you been?" at a party.
So instead of the standard, "I'm fine, how have you been?" schtick that everyone expects, perhaps a response that is a bit closer to the truth would be better. Something like, "This year has been pretty darn awful, but I am here and I'm not broken. Buy me a cocktail?" would be more honest, without feeling like a grenade has landed.
Each year we try to get together to just catch up and to marvel at how beautiful and amazing each of our daughters has gotten. This year we met at "Pump it Up", and indoor bounce house place, and then went to dinner at a local Chinese restaurant.
Over the years, things have changed with each of the families; job changes, moves, divorce, new chidren, all the things that families go through over the span of a child's life. This year I attended with just my two girls. My husband is on a business trip and couldn't make it.
I didn't think too much about it being a social occasion until I got there and suddenly felt very vulnerable. I'd purposely skipped a friend's birthday party the previous night because I knew I was not up to being in a social setting yet. When I talked with her about my hesitation, she'd been very understanding and I knew I made the right decision. However, In my focus on my daughter's special day, I forgot that this was also a social event. And, without my husband there, I was expected to be "on" and chatty.
The simple, "How has your year been?" is a loaded question for me and I am so tired lately that I can't seem to readily manage to come up with a pat, "Great! the girls have been.... and how has yours been?" with any conviction. And really, while I know I don't need to go into details, even a bit of the truth is tough to just throw out there without it landing like a grenade. Cancer? BAM! End of conversation.
One of the families knew what has been going on because I had to explain my hesitation this year to commit to going to the party at all. She was very sweet and said that I look great, that she couldn't tell that I'm sick. Snaps to me for good makeup and hair at least! Beyond that exchange, though, I found myself extremely edgy about how I look and what to say to people who I don't see that often.
In my last post I said that I don't think people really notice the change to my body because they are busy with ther own lives. I still believe that is true, but the problem is that, even though I can think that and then not worry about it when I'm going to work or church or with friends or family, I feel the difference when I'm in a social setting. I know I look different, and I know I feel different, and I don't yet have a set response, a good schtick, for the "How are things going?" question that always comes up in those settings.
I thought last night about how my parents had to handle these kinds of things when my dad broke his neck, though in their case, the wheelchar was the first clue into how their year had been. And then when my dad died, I remember the tension we felt all the years my siblings and I had to come up with responses about why no one ever met our dad.
I also thought about my mother-in-law, who dealt with breast cancer 35+ years ago, and especially about my sister-in-law, who has spent this past year coming to terms with the death of her partner last year. Almost everyone faces challenges in their lives that don't help when trying to come up with a tidy, socially acceptable reply to the question "How have you been?" at a party.
So instead of the standard, "I'm fine, how have you been?" schtick that everyone expects, perhaps a response that is a bit closer to the truth would be better. Something like, "This year has been pretty darn awful, but I am here and I'm not broken. Buy me a cocktail?" would be more honest, without feeling like a grenade has landed.
Tuesday, November 6, 2007
Concaveness
I suddenly realized today that I don't have any doctor appointments this week or next week, and possibly not even the next. In fact, my next real cancer-doctor appointment isn't until January.
My next step will be to get fitted for prostheses and bras. For the moment I am pretty ambivalent about this. I have had to quickly get used to the concaveness of my figure, and with the weather getting cooler, sweaters help bulk me up a bit. To me, wearing a prosthesis is simply a way to appear "normal" under clothes. Perhaps for many women, this is important, and I'm sure that in years past, having one's figure altered this dramatically would have been awkward at work and in social circles. However, from what I've observed the past month or so, people really don't notice. Everyone is so busy and so tied up in their own lives and worries, I don't think anyone even notices.
That is not to say I don't notice. Because I do. Breasts are everywhere in our culture. And every time I see a Victoria's Secret or worse, a Playtex ad, I hunch a little more.
In truth, I am very hesitant about getting the prosthetics because I really don't want to go there by myself. This is not something the husband should see, my best friend is hundreds of miles away, and this is not something a casual friend would relish as a "fun" outing. i just keep imagining the conversation, "Hey, how about lunch and a couple of hours at the cancer store?"
I know many people would just say, "Get implants and get it over with." But it is not that simple. The process for implants is 3 surgeries over several months, including the creation and tattooing of a nipple and aureole. And, despite what people think implants look like, reconstruction when there is no breast tissue at all is not the same. If you doubt this, please read Dr. Susan Love's "The Breast Book." She is very clear about what reconstruction can and cannot do. And what it cannot do is look like a natural breast. I will never look the same as I did back in July.
And right now, the thought of prosthetics and implants only makes that reality more stark than being concave.
My next step will be to get fitted for prostheses and bras. For the moment I am pretty ambivalent about this. I have had to quickly get used to the concaveness of my figure, and with the weather getting cooler, sweaters help bulk me up a bit. To me, wearing a prosthesis is simply a way to appear "normal" under clothes. Perhaps for many women, this is important, and I'm sure that in years past, having one's figure altered this dramatically would have been awkward at work and in social circles. However, from what I've observed the past month or so, people really don't notice. Everyone is so busy and so tied up in their own lives and worries, I don't think anyone even notices.
That is not to say I don't notice. Because I do. Breasts are everywhere in our culture. And every time I see a Victoria's Secret or worse, a Playtex ad, I hunch a little more.
In truth, I am very hesitant about getting the prosthetics because I really don't want to go there by myself. This is not something the husband should see, my best friend is hundreds of miles away, and this is not something a casual friend would relish as a "fun" outing. i just keep imagining the conversation, "Hey, how about lunch and a couple of hours at the cancer store?"
I know many people would just say, "Get implants and get it over with." But it is not that simple. The process for implants is 3 surgeries over several months, including the creation and tattooing of a nipple and aureole. And, despite what people think implants look like, reconstruction when there is no breast tissue at all is not the same. If you doubt this, please read Dr. Susan Love's "The Breast Book." She is very clear about what reconstruction can and cannot do. And what it cannot do is look like a natural breast. I will never look the same as I did back in July.
And right now, the thought of prosthetics and implants only makes that reality more stark than being concave.
Friday, November 2, 2007
Tamoxifen and Scar Tissue
This week has been odd. Tuesday I heard from my 2nd oncologist. The OncoType DX results give me the same percentages for recurrence that I had before. So, he gave me prescription for Tamoxifen to take 20mg a day and an appt. to see him again at the end of January for a checkup and blood work. So for now, no chemo.
If you've never seen a Tamoxifen prescription, it is pretty hilarious, in a weird way. The side effects are hot flashes, nausea, hair thinning, and headaches. Basically, you get menopause while still getting periods (Menopause twice, my poor husband!). There is also increased risk for ovarian and endometrial cancer. These I knew from the doctors. What they didn't tell me is I have to be careful to wash my hands thoroughly after touching the pills, and I have to be sure it does not come into contact with anyone who is pregnant or might be pregnant. And then, there are the drug interactions. The one I found really odd was St. John's Wort. It doesn't say why. My husband asked if it listed any of the common antidepressants, but it doesn't. Which is probably a good thing, since I suspect many women on Tamoxifen are also on some kind of antidepressant for at least part of the 5 years.
My fear of not doing enough is still there. But, the oncologist assures me that I've done everything I can. The aggressive surgery was the biggest piece. By removing everything now, I've eliminated the tissue where the most likely recurrence would happen. I also saved myself from the long-term consequences of radiation and chemo. I will need to watch the Tamoxifen for the first few months for side effects; for me the biggest risk is the hormone fluctuations. I could never take birth control pills because the hormones caused terrible PMS and mood swings. The oncologist said I may get the same problem from the Tamoxifen. She didn't say what happens if the Tamoxifen isn't tolerated, but that is going too far down a road, I think.
The scar tissue thing is the other piece I've been dealing with this week. Apparently I have some scar tissue forming around one of the few nerves I have left near the scars on my left side. This has been causing a lot of pain and spasms that last much of the day. The only way to stop it is to work harder at my stretches to break up the scar tissue. She didn't say how I'm supposed to fit more exercise time into every day though. Still working on that.
If you've never seen a Tamoxifen prescription, it is pretty hilarious, in a weird way. The side effects are hot flashes, nausea, hair thinning, and headaches. Basically, you get menopause while still getting periods (Menopause twice, my poor husband!). There is also increased risk for ovarian and endometrial cancer. These I knew from the doctors. What they didn't tell me is I have to be careful to wash my hands thoroughly after touching the pills, and I have to be sure it does not come into contact with anyone who is pregnant or might be pregnant. And then, there are the drug interactions. The one I found really odd was St. John's Wort. It doesn't say why. My husband asked if it listed any of the common antidepressants, but it doesn't. Which is probably a good thing, since I suspect many women on Tamoxifen are also on some kind of antidepressant for at least part of the 5 years.
My fear of not doing enough is still there. But, the oncologist assures me that I've done everything I can. The aggressive surgery was the biggest piece. By removing everything now, I've eliminated the tissue where the most likely recurrence would happen. I also saved myself from the long-term consequences of radiation and chemo. I will need to watch the Tamoxifen for the first few months for side effects; for me the biggest risk is the hormone fluctuations. I could never take birth control pills because the hormones caused terrible PMS and mood swings. The oncologist said I may get the same problem from the Tamoxifen. She didn't say what happens if the Tamoxifen isn't tolerated, but that is going too far down a road, I think.
The scar tissue thing is the other piece I've been dealing with this week. Apparently I have some scar tissue forming around one of the few nerves I have left near the scars on my left side. This has been causing a lot of pain and spasms that last much of the day. The only way to stop it is to work harder at my stretches to break up the scar tissue. She didn't say how I'm supposed to fit more exercise time into every day though. Still working on that.
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