This week was my second post-treatment checkup with my oncologist. I went ready. I had my list of issues in hand and was prepared to talk through all of the options.
We started with my list. My oncologist is a pretty straightforward guy, a reason to like him and not like him at the same time. He read it and then proceeded to test me on all of the symptoms: How much, How often, Who checked the corneal abrasions to determine the Tamoxifen caused them, etc. After we talked for awhile, he said, "Well, you seem to have every possible side effect you can get from Tamoxifen. You know, earlier today, I had a patient here who has been on Tamoxifen for more than four years. She can't see what the fuss is about since she doesn't have a single side effect." Yea, I hate her.
So then we talked about options. He cautioned against removing my ovaries because my fake-menopause symptoms have been so bad, and pushing me into menopause would likely have the same side effects and I would not be able to take any hormones to mitigate them.
His suggestion? Stop taking the Tamoxifen.
That's it!? stop taking it? His reasoning is that the nature of my tumors, my predicted recurrence risk of 12-15%, and the aggressive surgery my surgeon and radiologist had me do should likely prevent a recurrence. Can he promise no recurrence? No. But he will keep monitoring me to catch anything that might pop up as quickly as possible. And, I won't be miserable every day for the next five years (huge plus there).
So, while I am delighted to not be taking these crazy pills every day and I look forward to getting my life back a bit as it leaves my system (this takes a couple of weeks!), I do feel a bit like I'm flying without a net. I know I'm mixing my metaphors here, but I just don't want to get hit by the bus again. Tamoxifen was a seriously broken net, causing me misery and holes in my corneas, but at least I was "doing something" to keep the cancer away. Now, it's just me hoping it won't come back.
Are there things I can do to help? Of course, I can not eat meat or dairy, keep my fat intake low and my weight in check and exercise regularly and eat organically as much as possible. But since I started doing all of these things 20 years ago and got cancer anyway, they don't feel very preventative.
Friday, May 23, 2008
Monday, May 19, 2008
Some mommies have boobies
The weather got unbearably hot last week so, like most of the folks where I live, I had to quickly pull out some Summer clothes for work. One of the hot days, I threw on a dress I've had for several years. It was one I couldn't bear to toss when I cleaned out my closet several months ago to remove all of the "breast-required" tops and dresses.
That night, sitting with my girls, my youngest commented that my dress was old. Apparently she remembers it from last year(?). So I said, "Yes, I've had this for a few years, but it is comfy and cool." And then she patted my chest and said the thing that only a six-year-old can come up with, "Yea, but it's loose up here cuz you don't have boobies any more."
When I regained my power of speech, I replied that that was true. But in our family, we know that there are many things that are different in different families. We know that some families have mommies and daddies, and some have just a mommy or just daddies. We know some familes have lots of children and some have just one or two children or even no children. We know that some babies come from mommies' tummies and some babies come from China, and now we also know that some mommies have boobies, and some don't.
To which she responded, "Yea, you don't." Then she gave me a hug and ran off to play race cars.
Nothing like a six-year old to put everything into perspective!
That night, sitting with my girls, my youngest commented that my dress was old. Apparently she remembers it from last year(?). So I said, "Yes, I've had this for a few years, but it is comfy and cool." And then she patted my chest and said the thing that only a six-year-old can come up with, "Yea, but it's loose up here cuz you don't have boobies any more."
When I regained my power of speech, I replied that that was true. But in our family, we know that there are many things that are different in different families. We know that some families have mommies and daddies, and some have just a mommy or just daddies. We know some familes have lots of children and some have just one or two children or even no children. We know that some babies come from mommies' tummies and some babies come from China, and now we also know that some mommies have boobies, and some don't.
To which she responded, "Yea, you don't." Then she gave me a hug and ran off to play race cars.
Nothing like a six-year old to put everything into perspective!
Sunday, May 18, 2008
Getting my list together
This week I'll finally have my 6-month checkup with the oncologist. We got delayed a couple of times, but it should happen this time. I mentioned the upcoming date to my friend, Sue, who is also a survivor (Hodgkins and Breast cancer, an amazing woman!). She asked if I had my list ready. She says every time she visits the oncologist, she has a pre-written list of all the questions and concerns she has, it helps make the appointment more productive. She says her oncologist now just asks her for the list when she comes in!
I do have a list that I'm working on. So far it includes:
TAMOXIFEN ISSUES
1. recurring corneal abrasians and corneal infections
2. hot flashes/night sweats
3. power surges and heart palpitations
4. mood swings and "the fog"
5. water retention
6. weight gain that is faster than I can possibly be eating, particularly while training
7. gynecological stuff
8. monthly migraines (I used to get them about once a year, now I get them once a month)
OTHER
1. recurring pinching across the chest wall
Basically, I'm going to ask him what, besides the Tamoxifen, I can do. I already posted about talking to my ob/gyn about more surgery to remove my ovaries. So, I'm going to ask him about that and if there is another drug I can try.
It is strange to think about seeing a doctor and bringing a list for pretty much the rest of my life. Right now, it is a long list. My hope is that, someday, the list will be much shorter and the decisions will be much easier.
I do have a list that I'm working on. So far it includes:
TAMOXIFEN ISSUES
1. recurring corneal abrasians and corneal infections
2. hot flashes/night sweats
3. power surges and heart palpitations
4. mood swings and "the fog"
5. water retention
6. weight gain that is faster than I can possibly be eating, particularly while training
7. gynecological stuff
8. monthly migraines (I used to get them about once a year, now I get them once a month)
OTHER
1. recurring pinching across the chest wall
Basically, I'm going to ask him what, besides the Tamoxifen, I can do. I already posted about talking to my ob/gyn about more surgery to remove my ovaries. So, I'm going to ask him about that and if there is another drug I can try.
It is strange to think about seeing a doctor and bringing a list for pretty much the rest of my life. Right now, it is a long list. My hope is that, someday, the list will be much shorter and the decisions will be much easier.
Monday, May 5, 2008
14 miles and a big hill
OK, 14 miles is a LONG Walk. It is particularly long when, at the end of the first half, when one has already walked nearly 7 miles, there is a steep grade up the back of a dam!
My friend, Carole, and I have decided we need far more practice on hills. The second day of the Avon walk will be through various neighborhoods in San Francisco. If we are struggling with the one big hill on our regular path, we'll crash within the first few miles in SF! So, more practice on hills, and we'll definitely tackle the dam again!
The best part about this practice walk was meeting other women who are also committed to the cause. What surprised me most was how many of us were doing the walk for the first time. And, of the 8 or so women in the group, only 2 of us have had breast cancer ourselves. The rest are walking because they have been touched by this epidemic through friends or family members. Their dedication and support of those they love is truly inspiring.
My friend, Carole, and I have decided we need far more practice on hills. The second day of the Avon walk will be through various neighborhoods in San Francisco. If we are struggling with the one big hill on our regular path, we'll crash within the first few miles in SF! So, more practice on hills, and we'll definitely tackle the dam again!
The best part about this practice walk was meeting other women who are also committed to the cause. What surprised me most was how many of us were doing the walk for the first time. And, of the 8 or so women in the group, only 2 of us have had breast cancer ourselves. The rest are walking because they have been touched by this epidemic through friends or family members. Their dedication and support of those they love is truly inspiring.
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