We're midway through week twelve, and it appears my body may be putting up the white flag.
Or maybe a small white hankie.
Last week I started getting pretty frustrated with all of this -- to the point where I started telling the SO that I'm losing my sense of humor about treatment. And while I've gotten mentally weary of the whole thing, I was also feeling more physically weary at the point in the cycle where I'm usually gathering up a head of steam and feeling more like myself.
My blood test on Monday exposed the cause of the weariness - the physical kind, at least. My numbers aren't recovering the way they usually do by the start of week three of the cycle, specifically when it comes to the white cell count. The condition goes by the name "neutropenia." I wasn't totally bereft of those little infection-fighting buggers, but I was deprived enough that the doc advised me to continue to not eat anything uncooked.
Awesome. Right after I'd had a medium-cooked burger with lettuce and tomato on Sunday. And I'm seriously jonesing for a spinach salad.
I'm also supposed to keep checking my temperature (my usual week two routine) and call her if it hits 100.5, the sign of infection.
The doc also discussed the potential of shooting me up with neulasta if things don't improve. I talked about this last month. It's a lovely drug that pushes the body to produce more white blood cells. It's also got some annoying side effects, like bone pain and other stuff I don't want to think about. As I understand it, and she didn't mention this, getting neulasta would also mean delaying my next chemo infusion, which is scheduled for next week.
Another option, which she didn't mention, would be to reduce the dosages on my next infusion. Given the fact that I'm only undergoing chemo because they haven't done any studies on the effectiveness of herceptin without chemo, I'd rather go with the reduced dose than to drag this whole process out any longer than I have to.
How that works, if it works, is not something I can find on the internet. I tried looking on the breastcancer.org pages, but everything there is frustratingly general in nature, probably because BC treatments are so personalized. And though I signed up a while ago to participate on the site's very good discussion boards, I don't want to read through them. Too much of a chance that I'll read about someone else's scary side effects or tribulations - stuff I don't want to even consider will happen to me. Well, I did back down and read some of it, and I'm sorry I did. Compared to them, my little
*sigh* I'll just have to find out from the doc, who will, no doubt, just want to shoot me full of the neulasta.
I know that all of this is ultimately up to me, and I can stop the treatment if I feel strongly enough about it, but what choice do I really have? Either I stop the madness and live with the concern I didn't do enough, or I just muscle through, hoping that going through the whole regimen will inoculate me from ever having to deal with this again.
*sigh again*
Did I mention that I just want this crap to be done????
Wednesday, October 28, 2015
Saturday, October 17, 2015
October, hair and other concerns
Okay, it seems that I'm past the general crappiness of infusion number four. This time I took the anti-nausea pills before the pre-infusion dose wore off, and I think that helped a lot, but I still felt really run down on Wednesday night and Thursday. Fortunately it was just general malaise and not nausea. But I am SO ready to eat something that's not bland. Even lukewarm pizza tasted really good last night. (Though let's face it: even room-temperature New Jersey pizza is awesome.)
One of the things I'm noticing lately is the weirdness of hair growth on my scalp. From the amount of "whiskers" I occasionally see in the cap I wear to bed, I know I'm still losing hair, but it's not nearly as disturbing to see as it was before I got the buzz cut. And it appears that the gray hairs have the most stubborn follicles, except for this kind of rusty patch towards the back of my head. It's getting to look a little like what one of my balding former clients once called "an extremely high forehead."
But here's the really strange part: while that rusty patch is hanging on, I can see that some of the white/gray hair is actually growing! It's not that much longer, but some strands are long enough to flop over the way hair does when it's longer than a quarter-inch buzz cut.
It amazes me how selective chemo can be in destroying cells. Some hair (like the hair you get when you go through puberty) is very sparse, while other areas (like the arms) retain the same amount as before all this started. Who knows what will happen for the next few weeks - and how it will grow back...
On the other topic: October. Yes, as you know (as ANYONE WHO'S NOT IN A COMA or in a cave in Afghanistan knows), this is breast cancer awareness month. And the sight of the ribbons and the Facebook posts kind of makes me want to throttle someone. I'm quite aware, thank you.
I've long had a free-floating frustration about all this pink ribbon stuff and how it's been co-opted by corporate America. Some of it is the fundraising angle (The pink detergent bottle costs more, with the difference going to Susan G. Komen. No thanks, I'll make my own donations to organizations I've researched.). The other is the marketing angle (Hey, NFL, getting big men to wear hot pink arm thingies for a couple of weeks isn't going to convince me you care about women's health more than the dollars you want us to spend on team gear.).
And don't get me started on the social media memes. We've all seen the Facebook posts that go along the lines of "Breast cancer is an awful thing. If you really care, you'll post this picture on your page for one day to honor the brave women who deal with this terrible affliction. #prayersforbreastcancerpatients"
Does anyone, the moment they see any of this, stop what they're doing and make an appointment for a mammogram? Or do a self-exam? I've never once seen a woman glance at a pink ribbon, immediately throw one arm behind her head and do the pat-down on her breast.
Now that I'm dealing with my own experience, I'm seeing it through a much more personal lens. All the pink in the world isn't going to make me feel any better about going through chemo, nor is it going to change my diagnosis and the fact that every mammogram from now will be tinged with anxiety, no matter how optimistic I try to be. The fact that a police department in Massachusetts is using pink handcuffs to raise awareness (because, of course, when you're being arrested, the first thing on your mind is breast health) isn't going to reduce my chances of recurrence.
Maybe the pink stuff helps some BC patients feel supported, but I can't help but feel a bit cynical about the whole thing. All of this "awareness" does nothing, especially given all of the other issues/conditions/ailments we're encouraged to recognize with ribbons and colors. Checking Wikipedia, I discovered that this month we're also supposed to be aware of dwarfism/little people, eczema, domestic violence and Down syndrome. That's enough ribbons to make a rainbow, which, of course, would support LGBT issues awareness. We're supposed to care about everything, and when everything is a priority ... nothing takes the lead.
What's important is action. Doing things yourself, not sitting back and acting concerned without having skin in the game.
Just don't throw a pink ribbon in my face and tell me how much you care.
One of the things I'm noticing lately is the weirdness of hair growth on my scalp. From the amount of "whiskers" I occasionally see in the cap I wear to bed, I know I'm still losing hair, but it's not nearly as disturbing to see as it was before I got the buzz cut. And it appears that the gray hairs have the most stubborn follicles, except for this kind of rusty patch towards the back of my head. It's getting to look a little like what one of my balding former clients once called "an extremely high forehead."
But here's the really strange part: while that rusty patch is hanging on, I can see that some of the white/gray hair is actually growing! It's not that much longer, but some strands are long enough to flop over the way hair does when it's longer than a quarter-inch buzz cut.
It amazes me how selective chemo can be in destroying cells. Some hair (like the hair you get when you go through puberty) is very sparse, while other areas (like the arms) retain the same amount as before all this started. Who knows what will happen for the next few weeks - and how it will grow back...
On the other topic: October. Yes, as you know (as ANYONE WHO'S NOT IN A COMA or in a cave in Afghanistan knows), this is breast cancer awareness month. And the sight of the ribbons and the Facebook posts kind of makes me want to throttle someone. I'm quite aware, thank you.
I've long had a free-floating frustration about all this pink ribbon stuff and how it's been co-opted by corporate America. Some of it is the fundraising angle (The pink detergent bottle costs more, with the difference going to Susan G. Komen. No thanks, I'll make my own donations to organizations I've researched.). The other is the marketing angle (Hey, NFL, getting big men to wear hot pink arm thingies for a couple of weeks isn't going to convince me you care about women's health more than the dollars you want us to spend on team gear.).
And don't get me started on the social media memes. We've all seen the Facebook posts that go along the lines of "Breast cancer is an awful thing. If you really care, you'll post this picture on your page for one day to honor the brave women who deal with this terrible affliction. #prayersforbreastcancerpatients"
Does anyone, the moment they see any of this, stop what they're doing and make an appointment for a mammogram? Or do a self-exam? I've never once seen a woman glance at a pink ribbon, immediately throw one arm behind her head and do the pat-down on her breast.
Now that I'm dealing with my own experience, I'm seeing it through a much more personal lens. All the pink in the world isn't going to make me feel any better about going through chemo, nor is it going to change my diagnosis and the fact that every mammogram from now will be tinged with anxiety, no matter how optimistic I try to be. The fact that a police department in Massachusetts is using pink handcuffs to raise awareness (because, of course, when you're being arrested, the first thing on your mind is breast health) isn't going to reduce my chances of recurrence.
Maybe the pink stuff helps some BC patients feel supported, but I can't help but feel a bit cynical about the whole thing. All of this "awareness" does nothing, especially given all of the other issues/conditions/ailments we're encouraged to recognize with ribbons and colors. Checking Wikipedia, I discovered that this month we're also supposed to be aware of dwarfism/little people, eczema, domestic violence and Down syndrome. That's enough ribbons to make a rainbow, which, of course, would support LGBT issues awareness. We're supposed to care about everything, and when everything is a priority ... nothing takes the lead.
What's important is action. Doing things yourself, not sitting back and acting concerned without having skin in the game.
- Examine yourself (that means you guys, too). Make that mammo appointment. Yeah, I know it's uncomfortable, but trust me, it's nowhere near as sucky as chemo. Get in to see your doctor or call the American Cancer Society if you need a refresher on how to do a proper breast exam. My primary care doctor once told me to look for lumps that feel like "gum in a shag rug," if that helps.
- Be a pain in the butt to family or friends who put off medical stuff. I'm pushing my sister to get her annual mammo, which she'd been putting off. And I gave her my diagnosis so she can better inform the technicians about her family history. While I know I can't make her do anything, maybe my situation will get her to move on it a little more quickly.
- Show, don't tell, people your concern. Be a good friend to anyone you might know who's going through treatment. And remember that because breast cancer treatment has become very personalized, the patient's experience is unique to him or her. Thus, don't make assumptions on what s/he needs. Ask. And then follow through. It doesn't need to be a lot or all the time, and it doesn't have to be anything related to her treatment or her physical status. One of the best things my friends have done for me was for all of us and our SOs to get together for dinner one Saturday night. We spent five minutes on my status report, and the rest of the evening on anything else. The bottom line, every bit helps.
Just don't throw a pink ribbon in my face and tell me how much you care.
Tuesday, October 13, 2015
Week Ten!
Yes, it's week ten. Yesterday I got my fourth infusion of six, so I'm now officially over the hump and into the second half of my treatment regimen. (Even better, with the next one, I'll be two-thirds of the way through!) My oncologist is still feeling really good about my reactions and progress; my blood test numbers are within range, I guess.
Given that we're getting closer to the end of this, I've been getting curious about the timing for the next stage: radiation. She tells me that usually that starts three to four weeks after the last chemo infusion, which would put us right before Christmas. She didn't get too specific -- probably because we can't know now whether I'll need more or less time to have this shit wash out of my system. And who knows what they want to do about the holidays. From what I understand, radiation is five days on (weekdays), two days off (weekend), so they probably don't want to get started when holidays will break up that rhythm.
I'm of two minds about it. I'd like to get it started so it can be over. But, I'd also like to be able to enjoy the holidays without feeling exhausted. I already know I'm going to feel crappy for Thanksgiving, since my last infusion is only three days before that.
Anyway....
I meant to report back on the charity dinner the SO and I went to last week. You remember: the one I'd contemplated going to hairless. I tossed on the new wig, which looked great, and nobody was the wiser, I think. Only one person there has any idea about what I'm going through, and he said nothing to me. There were so many people there that we ended up spending not much time with anyone we know very well... and the folks we did know had nice things to say about my 'new do.' I did kind of wonder if the one "knowing" person had told them ... and they weren't saying anything but trying to be supportive... but whatever.
It was so great to eat whatever I want... and have a couple of drinks. Even if I did end up with a sore throat the next day.
Given that we're getting closer to the end of this, I've been getting curious about the timing for the next stage: radiation. She tells me that usually that starts three to four weeks after the last chemo infusion, which would put us right before Christmas. She didn't get too specific -- probably because we can't know now whether I'll need more or less time to have this shit wash out of my system. And who knows what they want to do about the holidays. From what I understand, radiation is five days on (weekdays), two days off (weekend), so they probably don't want to get started when holidays will break up that rhythm.
I'm of two minds about it. I'd like to get it started so it can be over. But, I'd also like to be able to enjoy the holidays without feeling exhausted. I already know I'm going to feel crappy for Thanksgiving, since my last infusion is only three days before that.
Anyway....
I meant to report back on the charity dinner the SO and I went to last week. You remember: the one I'd contemplated going to hairless. I tossed on the new wig, which looked great, and nobody was the wiser, I think. Only one person there has any idea about what I'm going through, and he said nothing to me. There were so many people there that we ended up spending not much time with anyone we know very well... and the folks we did know had nice things to say about my 'new do.' I did kind of wonder if the one "knowing" person had told them ... and they weren't saying anything but trying to be supportive... but whatever.
It was so great to eat whatever I want... and have a couple of drinks. Even if I did end up with a sore throat the next day.
Thursday, October 8, 2015
Week nine...
... is moving right along.
Side effects are getting a little more creative, like the very gentle eye tic I picked up a couple of weeks ago. Did you know that you can get tics from dehydration and a magnesium deficiency? That was what the oncologist said, at least. I've been drinking water like a fish, but I'd backed off on my usual overconsumption of bananas, so I went back to my Curious George ways. It seems to have helped a little, but the tics aren't totally gone. From what I've been reading on various discussion boards, this is just one of those side effects that some people pick up. It goes away once all of the chemo washes out.
I have to be the only cancer patient out there who has any concern whatsoever about not feeling worse than I do (which isn't that bad). Just about halfway through this entire process, I don't feel like crap 90 percent of the time. Not that I'm upset about it. Honestly, I'm more concerned about the other shoe dropping at some point.
I asked the doc why things seem to be going so well, and she suggested that maybe I'm doing the things that are right for me: drinking plenty of water, taking it easy, knowing my body and reporting problems as they arise. It's not as if I'm running around like a crazy person, but I'm not playing the martyr, either.
Then again, I'm preparing myself for this time next week, when I'll feel tired and achy from the next treatment. And I won't be as chipper as I am right now.
Side effects are getting a little more creative, like the very gentle eye tic I picked up a couple of weeks ago. Did you know that you can get tics from dehydration and a magnesium deficiency? That was what the oncologist said, at least. I've been drinking water like a fish, but I'd backed off on my usual overconsumption of bananas, so I went back to my Curious George ways. It seems to have helped a little, but the tics aren't totally gone. From what I've been reading on various discussion boards, this is just one of those side effects that some people pick up. It goes away once all of the chemo washes out.
I have to be the only cancer patient out there who has any concern whatsoever about not feeling worse than I do (which isn't that bad). Just about halfway through this entire process, I don't feel like crap 90 percent of the time. Not that I'm upset about it. Honestly, I'm more concerned about the other shoe dropping at some point.
I asked the doc why things seem to be going so well, and she suggested that maybe I'm doing the things that are right for me: drinking plenty of water, taking it easy, knowing my body and reporting problems as they arise. It's not as if I'm running around like a crazy person, but I'm not playing the martyr, either.
Then again, I'm preparing myself for this time next week, when I'll feel tired and achy from the next treatment. And I won't be as chipper as I am right now.
Wednesday, September 30, 2015
Meet the new hair...
So, it's my birthday, and I got myself a wig.
Well, actually, I returned a wig and bought a new one, both mail order. The original one didn't look all that great when I got it: I didn't like the color, and it was too long. It made me look like that snobby girl in Sixteen Candles (you know, the snob who was dating Jake Ryan and ended up with Farmer Ted), and all I could think was that Jami Gertz was going to come and snip half of the back of it off. Ultimately, my Pooh Bear ended up wearing it until I finally got around to sending it back. It looked about as good on him as it did on me.
For a while I figured I'd just be brave and go without hair for a couple of months. The scarves were working pretty well, and since the weather is turning cold anyway, it would be easy enough just to wear hats I already have, when appropriate.
A few things changed my mind.
First off, as flaky as this might sound, wearing the scarves has been limiting my wardrobe. While I'm not the biggest fashion plate, it bugs me when stuff doesn't go together. As a result, I've been wearing a lot of black. And while scarves look good with certain tops, they don't look great with polo shirts, which I tend to wear fairly often when I need something a little less informal but still casual. With them, scarves tend not to look like a fashion choice, but a necessity.
The bigger reason: I don't feel like standing out anymore. Or, more accurately, if I'm going to stand out, I want it to be for a reason of my choosing, not something thrust upon me. It'll be another six months before my hair is anywhere close to normal again, and I don't think I can manage a stiff upper lip for that long.
An incident in a restaurant the other night really capped it for me. Admittedly, I was already not in the best of moods - the place was more crowded than usual, and while we'd hoped to see the last couple of innings of the ballgame where the Mets were clinching the division, we ended up at a table with only a partial view of the TV. And the screen was tuned to the Yankees postgame. (Insult on injury, right?) The SO very kindly got management to change the channel, so I got to see the end of the game.
We had to wait a bit longer than usual for our meals, given the crowd, but the table bread kept me from getting hangry (I didn't want to chance the salad bar because I knew my immunity was tanking six days after chemo - salad bar sneezes could pose a big problem,) We finally got our food and were probably about halfway through eating when the couple at the table next to us got up to leave.
The woman stopped, apologized for interrupting and told me she hoped my treatments were going well. Her mom is going through the same thing, she said, so she wanted me to know I'd be in her prayers. I gave her the two-minute speech on my situation, and she said her mom's case is similar. She went on for a minute or two longer and then left.
That pretty much killed the evening. Don't get me wrong: she was tremendously nice, and I appreciate her good wishes. Maybe if I was in a better mood, it wouldn't have annoyed me the way it did. Thing is, I don't want to always have to be generous with my moods. I just don't want to be the target of reactions all the time. I want to control how and when people find out. I don't want to be forever reminded that I'm going through this extraordinary thing. I get enough reminders without the feedback. I just want to blend in.
The SO and I also have a charity dinner to go to next week, which I'm hoping I'll feel ok enough to attend. I seriously considered doing the turban thing, even trying a scarf wrap with a little black dress, which looked fairly okay, maybe a little Norma Desmond-y. Given the self-righteousness of some of the people I knew I'd run into (long story), I almost wanted to create an opportunity for comment, just so I could shove their self-righteous crap in their faces.
But I realized I don't want to deal with the inevitable comments, even the benign and caring ones. I'd rather just have hair.
And fortunately the new wig arrived yesterday, my early birthday present to myself. True to the photo in the catalog, it looks pretty much like my last normal hairstyle, just slightly redder hair. Folks who haven't seen me in a while are likely not to even notice, as long as they don't look that closely. And really, who looks that closely?
Nobody. That's right.
Well, actually, I returned a wig and bought a new one, both mail order. The original one didn't look all that great when I got it: I didn't like the color, and it was too long. It made me look like that snobby girl in Sixteen Candles (you know, the snob who was dating Jake Ryan and ended up with Farmer Ted), and all I could think was that Jami Gertz was going to come and snip half of the back of it off. Ultimately, my Pooh Bear ended up wearing it until I finally got around to sending it back. It looked about as good on him as it did on me.
For a while I figured I'd just be brave and go without hair for a couple of months. The scarves were working pretty well, and since the weather is turning cold anyway, it would be easy enough just to wear hats I already have, when appropriate.
A few things changed my mind.
First off, as flaky as this might sound, wearing the scarves has been limiting my wardrobe. While I'm not the biggest fashion plate, it bugs me when stuff doesn't go together. As a result, I've been wearing a lot of black. And while scarves look good with certain tops, they don't look great with polo shirts, which I tend to wear fairly often when I need something a little less informal but still casual. With them, scarves tend not to look like a fashion choice, but a necessity.
The bigger reason: I don't feel like standing out anymore. Or, more accurately, if I'm going to stand out, I want it to be for a reason of my choosing, not something thrust upon me. It'll be another six months before my hair is anywhere close to normal again, and I don't think I can manage a stiff upper lip for that long.
An incident in a restaurant the other night really capped it for me. Admittedly, I was already not in the best of moods - the place was more crowded than usual, and while we'd hoped to see the last couple of innings of the ballgame where the Mets were clinching the division, we ended up at a table with only a partial view of the TV. And the screen was tuned to the Yankees postgame. (Insult on injury, right?) The SO very kindly got management to change the channel, so I got to see the end of the game.
We had to wait a bit longer than usual for our meals, given the crowd, but the table bread kept me from getting hangry (I didn't want to chance the salad bar because I knew my immunity was tanking six days after chemo - salad bar sneezes could pose a big problem,) We finally got our food and were probably about halfway through eating when the couple at the table next to us got up to leave.
The woman stopped, apologized for interrupting and told me she hoped my treatments were going well. Her mom is going through the same thing, she said, so she wanted me to know I'd be in her prayers. I gave her the two-minute speech on my situation, and she said her mom's case is similar. She went on for a minute or two longer and then left.
That pretty much killed the evening. Don't get me wrong: she was tremendously nice, and I appreciate her good wishes. Maybe if I was in a better mood, it wouldn't have annoyed me the way it did. Thing is, I don't want to always have to be generous with my moods. I just don't want to be the target of reactions all the time. I want to control how and when people find out. I don't want to be forever reminded that I'm going through this extraordinary thing. I get enough reminders without the feedback. I just want to blend in.
The SO and I also have a charity dinner to go to next week, which I'm hoping I'll feel ok enough to attend. I seriously considered doing the turban thing, even trying a scarf wrap with a little black dress, which looked fairly okay, maybe a little Norma Desmond-y. Given the self-righteousness of some of the people I knew I'd run into (long story), I almost wanted to create an opportunity for comment, just so I could shove their self-righteous crap in their faces.
 |
| Chemo? You think I look sick? |
And fortunately the new wig arrived yesterday, my early birthday present to myself. True to the photo in the catalog, it looks pretty much like my last normal hairstyle, just slightly redder hair. Folks who haven't seen me in a while are likely not to even notice, as long as they don't look that closely. And really, who looks that closely?
Nobody. That's right.
Monday, September 28, 2015
Week eight starts!
Made it another week through... and one of those kinds of weeks I've come to expect won't be much fun.
Last we checked, I was taking the anti-nausea drugs to see if I could get through the days after chemo infusion with a minimum of barfiness and overall weariness. The good news is that I got over the hump by taking the drugs until Friday. The not so good news: the weariness remained. I guess there's only so much you can expect.
Last we checked, I was taking the anti-nausea drugs to see if I could get through the days after chemo infusion with a minimum of barfiness and overall weariness. The good news is that I got over the hump by taking the drugs until Friday. The not so good news: the weariness remained. I guess there's only so much you can expect.
Tuesday, September 22, 2015
Week Seven -- yay!
Yesterday started week seven on the chemo journey, and all is looking good. My blood test results came back fairly good, with most of the "misses" being fractionally outside of the normal range. My doc is pretty satisfied with where I am.
Feeling pretty good about everything, I asked the big question: is there a chance that I'll continue to do fairly well over the next three rounds? She seems to think so. I'm not considering it a guarantee, but it does give me some hope. Maybe I'll get the hang of this routine.
Yesterday's chemo infusion was number three of six, had good chats with the infusion nurse and the nurse navigator, who always stops by to say hello and check in. Looking to prevent a redux of the icky feeling a few days after the last round, I asked the infusion nurse about the protocol for taking the anti-nausea drugs I was prescribed after the first round of chemo. There are two -- zofran, which is the preventative they give me in a drip before dosing me with the chemo; and compazine, which nails any sudden nausea. At least that's what they told me. She recommended taking the zofran right up, and if I need it, add the compazine.
I woke up kind of queasy this morning, so I started the zofran. My gut is still a little "different" but I've been able to eat just fine, with no nausea. I'll keep taking it for a day or two, see what happens. If I can avoid feeling totally crappy later in the week, I'll be happy.
Feeling pretty good about everything, I asked the big question: is there a chance that I'll continue to do fairly well over the next three rounds? She seems to think so. I'm not considering it a guarantee, but it does give me some hope. Maybe I'll get the hang of this routine.
Yesterday's chemo infusion was number three of six, had good chats with the infusion nurse and the nurse navigator, who always stops by to say hello and check in. Looking to prevent a redux of the icky feeling a few days after the last round, I asked the infusion nurse about the protocol for taking the anti-nausea drugs I was prescribed after the first round of chemo. There are two -- zofran, which is the preventative they give me in a drip before dosing me with the chemo; and compazine, which nails any sudden nausea. At least that's what they told me. She recommended taking the zofran right up, and if I need it, add the compazine.
I woke up kind of queasy this morning, so I started the zofran. My gut is still a little "different" but I've been able to eat just fine, with no nausea. I'll keep taking it for a day or two, see what happens. If I can avoid feeling totally crappy later in the week, I'll be happy.
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