When a person is pregnant, their life becomes an open book, so to speak. Or maybe others see a pregnant person's life as a library book...there for sharing with others. Total strangers feel perfectly comfortable asking questions such as "When are you due?" or "What are you having?" They also feel totally comfortable telling the pregnant person horror stories, asking about bodily functions or telling about their (or their partner's) bodily functions....nothing is quite so wonderful as having some guy tell you about his wife's anal fissure, for instance.
I'm finding life to be very similar down here in L'ville as a visible cancer survivor.
Other survivors have approached me and that's quite nice. But it's the civilians who are getting in my bubble. One woman approached me...granted, she's in her 80s and a pretty straight shooter to start with, and said, "So, why do you wear that sleeve?" A few minutes later, she asked, "So, why is your hair so short?" Really lady? Wouldn't, "So, do you have cancer" or something similar be a little easier? Or, how about the question I got today, "So, what is your health status?" From a total stranger. Better yet, after being asked about my story by someone I have just met this week, the man then asked me, "So, if it was in your lymph nodes, doesn't that mean certain death?" To be honest, sir, drawing breath means certain death at some point....why would I discuss my mortality with a stranger? During a 15 minute work break, to boot? Oh, wait....I WOULDN'T.
Don't get me wrong. I have absolutely no problem discussing these issues with people I know. In fact, I'd rather discuss it openly than to leave people I care about guessing and wondering. I enjoyed the "So, what's up with the shooter sleeve?" questions I've gotten from some of my younger AP reader acquaintances. One long time acquaintance, former BGSU'er, out right said, "So, this year was a rough one for you, eh? When were you diagnosed?" That's fine and dandy. She KNOWS ME.
Another reader who is a survivor, sitting across from me at dinner one night, nodded at my sleeve and said, "I took mine off 18 years ago, and I've never had a problem, but I still do my exercises, just in case.....the first week of August, I'll be 20 years cancer free" and then teared up. Awesome! But the virtual stranger at my reading table who just won't let it go...the one who has asked me about my insurance, my sick leave, my prognosis, my surgery....while I'm fine and dandy about letting people I know feel my cement boobs in the Meijer parking lot, I really don't want to discuss my surgery with some virtual stranger, a man in his 60s, who I just met two days ago and with whom I've shared maybe 200 words up until this point....
It has been neat to have had a few people notice my sleeve and ask me if I'm a runner....if only! But I'll take that as an assumption:)
I guess it would never occur to me to ask a virtual stranger, "So, why are you blind?" unless it had come up in conversation. Yet, people always ask pregnant women things like, "Was it planned?" I wonder what would happen if someone, in answer to that question, were to respond, "Actually, no, but I figured this was easier than an abortion, plus I'm s super duper procrastinator, so here I am...."
Sort of like when strangers ask, "Did you find it yourself?" What would they think if I answered, "Actually, it was airport security that found it....I was pulled aside for random screening....."
Showing posts with label frustration. Show all posts
Showing posts with label frustration. Show all posts
Sunday, June 13, 2010
Friday, March 26, 2010
The first of 11...
...Herceptin infusions, that is.
I guess it could be called "chemo lite" even though technically, it's not chemo. For the next 30 weeks, I'll go to the infusion center to get a herceptin only infusion. The side effects, compared to chemo, are minimal.
Herceptin alone is responsible for decreasing breast cancer recurrence for people with my type of tumor by 40-50%. However, this does come with costs: an increased risk of heart disease (cardiomyopathy and congestive heart failure, both of which can lead to death) and an estimated financial cost of $100,000/yr.
As I said before, compared to chemo, the side effects (other than heart issues) are minor: fever, chills, muscle aches, nausea. These side effects are said to decrease with future infusions. I had six herceptin infusions with my first round of chemo (last fall, before my surgery). At that time, I also received carboplatin and taxotere. I experienced quite severe leg and joint pain, especially the last half of the treatments, which lasted until January (I finished treatments in November). That pain was attributed to the taxotere. However, now I wonder about that because tonight, for the first time since it went away, I experienced that same pain, on a much lower scale, in my knees while I was driving (before, it was severe enough to cause me to automatically take pain relief if I were driving anywhere out of town), I can "feel" my knees sitting in this recliner, and my ankles were aching at dinner. Granted, this is all at a much lower level, but it is otherwise the exact same pain, in the exact same places that I experienced before.
Now I wonder, will it get worse over time? Is this a fluke? Is it all in my head? Or, will the pain build over time, and if so, how intense can it get over 30 weeks of treatment? Was it compounded by the taxotere?
Will I actually become an old lady before I stop feeling like an old lady?
So, that's what I did today, and, hopefully, that's what I'll do every third Friday for the next 30 weeks. So far, I feel fine, other than those odd, minor aches. You can read about how herceptin works here.
Meanwhile, the detox diet has been going well. I just may have to get used to cooking separately for myself because after 1.5 weeks of no sugar, no saturated fats, no grains, no dairy and eating mostly various leafy greens, fish, chicken, and berries, I really don't find the thought of other foods very enticing. For some reason, tonight, I had an intense craving for Bob Evan's biscuits, but even that intensity was much less than just a few days ago when I could have killed for a mouthful of the fried rice I made my family for dinner.
Now, if I could figure out how to replicate the Garden Tomato Soup that is served at Naslada, I'd be one happy camper.
I guess it could be called "chemo lite" even though technically, it's not chemo. For the next 30 weeks, I'll go to the infusion center to get a herceptin only infusion. The side effects, compared to chemo, are minimal.
Herceptin alone is responsible for decreasing breast cancer recurrence for people with my type of tumor by 40-50%. However, this does come with costs: an increased risk of heart disease (cardiomyopathy and congestive heart failure, both of which can lead to death) and an estimated financial cost of $100,000/yr.
As I said before, compared to chemo, the side effects (other than heart issues) are minor: fever, chills, muscle aches, nausea. These side effects are said to decrease with future infusions. I had six herceptin infusions with my first round of chemo (last fall, before my surgery). At that time, I also received carboplatin and taxotere. I experienced quite severe leg and joint pain, especially the last half of the treatments, which lasted until January (I finished treatments in November). That pain was attributed to the taxotere. However, now I wonder about that because tonight, for the first time since it went away, I experienced that same pain, on a much lower scale, in my knees while I was driving (before, it was severe enough to cause me to automatically take pain relief if I were driving anywhere out of town), I can "feel" my knees sitting in this recliner, and my ankles were aching at dinner. Granted, this is all at a much lower level, but it is otherwise the exact same pain, in the exact same places that I experienced before.
Now I wonder, will it get worse over time? Is this a fluke? Is it all in my head? Or, will the pain build over time, and if so, how intense can it get over 30 weeks of treatment? Was it compounded by the taxotere?
Will I actually become an old lady before I stop feeling like an old lady?
So, that's what I did today, and, hopefully, that's what I'll do every third Friday for the next 30 weeks. So far, I feel fine, other than those odd, minor aches. You can read about how herceptin works here.
Meanwhile, the detox diet has been going well. I just may have to get used to cooking separately for myself because after 1.5 weeks of no sugar, no saturated fats, no grains, no dairy and eating mostly various leafy greens, fish, chicken, and berries, I really don't find the thought of other foods very enticing. For some reason, tonight, I had an intense craving for Bob Evan's biscuits, but even that intensity was much less than just a few days ago when I could have killed for a mouthful of the fried rice I made my family for dinner.
Now, if I could figure out how to replicate the Garden Tomato Soup that is served at Naslada, I'd be one happy camper.
Monday, March 22, 2010
Just more hurry up and wait...
Actually, in general, there isn't a lot of "hurry up and wait" when it comes to cancer (or at least breast cancer). Once there is a diagnosis, things go fast, fast, fast. Or at least that was my experience. Perhaps that is due to the fact that I have good insurance.
Regardless, today was a prime example of "hurry up and wait."
I got measured, marked, tattooed (I never thought my first 5 tattoos would be so boring! Little pinpricks of ink, and yes they hurt), molded, CT scanned, and then I got to watch a dvd about radiation therapy.
Then the technician said, "It takes about a week for the planning. We'll give you a call."
I'm pleased they take their time and that the planning is so meticulously done. I just wish no one had previously said, "You will start radiation on March 22nd." Even my onco and plastic surgeon both counted, when they were discussing when to schedule appointments for after radiation was over, from today. Yet, I won't be finished six weeks from now. ARGH!!!!
This could interfere with a class I was planning on taking, which overall isn't that big of a deal, but still!
Silver lining: I was concerned that the echo-cardiogram I have scheduled Wednesday complicating the radiation schedule. Now it complicates nothing:)
Also, I'[m still pretty fatigued from chemo and sleeping quite a bit. Left to my own devices, I'm sleeping 12 hours a night with an hour or so nap each day. I was pretty concerned about managing the house and getting things accomplished with radiation (30-60 minutes there, plus travel time) each day. Maybe now that will be different.
And finally, I was supposed to try to schedule a lunch date with a friend. We've been trying to do this for a couple of weeks now, and our schedules just don't mesh. We are planning on trying again this week, and we'd left it at "I'll let you know what my schedule is when I start radiation." Now, maybe we can finally meet up!
Now, I'm just stressing that all the planning that will take place over the next week or so is done as meticulously as they promised me it will be. And that the damage will be minimal.
Regardless, today was a prime example of "hurry up and wait."
I got measured, marked, tattooed (I never thought my first 5 tattoos would be so boring! Little pinpricks of ink, and yes they hurt), molded, CT scanned, and then I got to watch a dvd about radiation therapy.
Then the technician said, "It takes about a week for the planning. We'll give you a call."
I'm pleased they take their time and that the planning is so meticulously done. I just wish no one had previously said, "You will start radiation on March 22nd." Even my onco and plastic surgeon both counted, when they were discussing when to schedule appointments for after radiation was over, from today. Yet, I won't be finished six weeks from now. ARGH!!!!
This could interfere with a class I was planning on taking, which overall isn't that big of a deal, but still!
Silver lining: I was concerned that the echo-cardiogram I have scheduled Wednesday complicating the radiation schedule. Now it complicates nothing:)
Also, I'[m still pretty fatigued from chemo and sleeping quite a bit. Left to my own devices, I'm sleeping 12 hours a night with an hour or so nap each day. I was pretty concerned about managing the house and getting things accomplished with radiation (30-60 minutes there, plus travel time) each day. Maybe now that will be different.
And finally, I was supposed to try to schedule a lunch date with a friend. We've been trying to do this for a couple of weeks now, and our schedules just don't mesh. We are planning on trying again this week, and we'd left it at "I'll let you know what my schedule is when I start radiation." Now, maybe we can finally meet up!
Now, I'm just stressing that all the planning that will take place over the next week or so is done as meticulously as they promised me it will be. And that the damage will be minimal.
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