My first radiation treatment didn't begin until mid week on a Wednesday. So that first week I had just three treatments, and then weekend break, before beginning again the following Monday. Three treatments was enough to make me feel puny, but I mostly felt ok. Tired and a little sick, but nothing very severe.
Each Monday after my treatment I see the dr (the only time I see him during this treatment) and that first Monday (following those first three treatments) the dr asked if I had taken any of the nausea medicine. I replied that I had not, and he said great, then you won't need it. You either feel sick or you don't, it is not cumulative. Well, I corrected, I haven't taken any medicine for the nausea, but I do feel nauseous. Well by all means take it, stated the dr, you don't get points for bravery.
I didn't correct him, but of course you get points for bravery. Either that, or you don't get points for anything. Has the man never seen Road House ("Pain Don't Hurt")? I'm not a tough guy, I've never been in a real fight in my life. To quote JJ Walker on Good Times, these arms were made for lovin', not fighting. But I still think of myself as a man, and one who knows a thing or two & lives by a certain code. I hold doors open for ladies, return money when someone drops it, help stranded motorists push their car out of the streets (much to Julie's dismay), etc. You get points for those things too, at least in my book you do, and my book is the one that matters to me (well Julie's book too). So accepting cancer treatment and not needing nausea medicine built up points in my book.
But that same Monday the dr said those words to me, I started taking the medicine. The radiation combined with the hour long bus ride out and back to the hospital is just too much for me. I've lost some points. I now take the medicine at least once a day, often twice (three times is the limit, every 8 hours) and it does take the edge off, although it doesn't remove the nausea all the way.
By not removing it all the way, I figure I get to keep some of those points.
Saturday, July 23, 2011
Monday, July 18, 2011
Did I Mention I Have Cancer?
This update is long overdue, but with treatment in the mornings and then a full work day, I've been exhausted by the time I get home and just don't feel like writing. Then the weekends come and the last thing I want to do is sit at the computer when the weather is so nice.
Treatment to date:
Treatments are easy and painless, I've had nine of my 21 when you include treatment this morning. The treatment makes me feel nauseous, and I'm tired all the time, but it isn't terrible (the nausea is by far worse than the fatigue). I also have a nasty metallic taste in my mouth all the time, but it is worse just after the treatment. I miss about 1-2 hours of work each day depending on the start time of the treatments which range from 8:15 am to 9:30 am. Most are at 8:15, so I'm usually at the office by 10 am. At 12:30 I head home and nap for 30 minutes, then back to work.
The few unusual side effects I have are my super hunger (for foods I normally do not crave), and rash-like itchiness on my legs (not the treatment area). The rash-like itching comes & goes so I can deal with it, but the hunger is all the time. And I'm not hungry for green veggies and fruit. I want ground beef, bean, rice, pizza, french fries. Yesterday (Sunday) Julie & I sat outside with Bica at a local sports bar and had a large order of buffalo wings & two orders of french fries. I ate almost everything. Friday night I got a large spicy meatball pizza with six mini burgers, I barely gave Julie a bite. My appetite is voracious.
Best Sister Ever:
My sister sent a care package when I was a week into my treatments which included one of the nicest gifts I've ever received. A note-chain (I don't know the right term for it) where she got well wishes from friends and family, created 21 notes (for each day of my treatment) from those well wishes, and created a looped chain from each note such that each day I break a link in the chain and read that days note. As there are fewer links in the chain, I can see my remaining treatments get lower & lower, plus I get to read all of those well wishes one treatment at a time. It is an amazing gift.
Subject Line:
The subject line of this post (did I mention I have cancer?) comes from a TV show Julie and I watch on Hulu called Archer. An adult cartoon sort of about a spy (Archer) and the dysfunctional agency he works for, but really it's just a set up for rude comments and sex jokes. Anyway on Sunday (after the wings-french fry fest described above) we watched the most recently available episode and damn if Archer didn't get cancer (male breast cancer...) and damn if he wasn't saying a lot of things that I've been saying, like "you know I have cancer, right" when Julie tells me to put my clothes away.
The episode was funny, but maybe hit a little to close to home. Julie & I were laughing pretty hard when we watched it though.
Treatment to date:
Treatments are easy and painless, I've had nine of my 21 when you include treatment this morning. The treatment makes me feel nauseous, and I'm tired all the time, but it isn't terrible (the nausea is by far worse than the fatigue). I also have a nasty metallic taste in my mouth all the time, but it is worse just after the treatment. I miss about 1-2 hours of work each day depending on the start time of the treatments which range from 8:15 am to 9:30 am. Most are at 8:15, so I'm usually at the office by 10 am. At 12:30 I head home and nap for 30 minutes, then back to work.
The few unusual side effects I have are my super hunger (for foods I normally do not crave), and rash-like itchiness on my legs (not the treatment area). The rash-like itching comes & goes so I can deal with it, but the hunger is all the time. And I'm not hungry for green veggies and fruit. I want ground beef, bean, rice, pizza, french fries. Yesterday (Sunday) Julie & I sat outside with Bica at a local sports bar and had a large order of buffalo wings & two orders of french fries. I ate almost everything. Friday night I got a large spicy meatball pizza with six mini burgers, I barely gave Julie a bite. My appetite is voracious.
Best Sister Ever:
My sister sent a care package when I was a week into my treatments which included one of the nicest gifts I've ever received. A note-chain (I don't know the right term for it) where she got well wishes from friends and family, created 21 notes (for each day of my treatment) from those well wishes, and created a looped chain from each note such that each day I break a link in the chain and read that days note. As there are fewer links in the chain, I can see my remaining treatments get lower & lower, plus I get to read all of those well wishes one treatment at a time. It is an amazing gift.
Subject Line:
The subject line of this post (did I mention I have cancer?) comes from a TV show Julie and I watch on Hulu called Archer. An adult cartoon sort of about a spy (Archer) and the dysfunctional agency he works for, but really it's just a set up for rude comments and sex jokes. Anyway on Sunday (after the wings-french fry fest described above) we watched the most recently available episode and damn if Archer didn't get cancer (male breast cancer...) and damn if he wasn't saying a lot of things that I've been saying, like "you know I have cancer, right" when Julie tells me to put my clothes away.
The episode was funny, but maybe hit a little to close to home. Julie & I were laughing pretty hard when we watched it though.
Tuesday, July 5, 2011
"Lead Ball Clamp" And Other Fun Stuff
Disaster averted. I called the drs office this morning and they were able to get the insurance issue straightened out. It was, I'm told, a coding error after all. So I only spent a few hours at work today before heading off to sibley hospital to get my first radiation treatment. Or so I thought.
A slight digression. Once you have chosen radiation therapy at Sibley, you are given a barcoded card (basically a library card) and when you get to the cancer center you scan the barcode at a handheld scanner/barcode reader station, and proceed to the dressing room. The dressing rooms (there are two, one for men & one for women) contain three changing rooms, six small lockers, and one bathroom. One bathroom. Did I mention nausea is one of the primary side effects of radiation therapy? And there is only one bathroom for the dozens of nauseous patients who come & go during each of my visits. Anyway, in the changing room I have to get naked, put on an "open in the back" hospital gown, and then a hospital robe, and then put my shoes back on. There isn't a good place to hang your clothes in the room (although valuables go in one of the small lockers and you keep the key), but there is a coat rack outside the dressing rooms where I will be hanging my suits.
So after checking in (barcode) and changing, I come out of the dressing room in hospital gown & robe, wearing dress shoes. You know something is the matter with you when you're looking like that big of an ass.
Digression over. So today while sitting in my hospital gown/robe/dress shoes attire, sitting in the waiting room with Julie, I get called back. Here we go, showtime, going to get my tattoos for triangulation and my first dose of radiation. Or not. Instead the two very nice nurses/technicians take me back to the machine that will be blasting me from the top and bottom, and tell me today will just be x-rays to confirm the physicist has correctly pinpointed the blast zones of my abdomen. Still I have to disrobe and take off my shoes, leaving the on the open in the back gown, and get on the radiation table. The mold of my upper back they took last week is there and I have to get back into the same position as before.
Instead of high levels of radiation I was just getting low level x-rays, but they still take the same precautions as the real thing, which means my sole remaining testicle (righty) gets placed in a lead ball clamp. Probably the most frightening part of all of this is having the nurses raise my ball and place it in the cold metal cup, then start screwing the top down over it. I was telling Julie, as we waited for the bus home today, more women have held my ball and penis in the last 12 months than all the other years put together.
It's cold and uncomfortable. Your hands are behind you gripping handle bars, and you are of course trying not to move, and you have a big lead ball attached to your... ball. The head of the radiation machine is about the size of an extra-large pizza, and it rotates on an arm top to bottom, coming very close as it does so. The pizza head stays on top first to blast the radiation, then rotates under me to black from my back, and then I'll be done.
So that's what I have to look forward to tomorrow morning at 7:45 am. Tattoos and my first radiation dose. Schedule changes a few times but for the most part the treatments are at 8:15 am. Treatment runs through the first week of August, I think August 3rd is my last scheduled treatment date with the possibility of 4-5 additional doses thereafter.
I'm probably making this sound worse than it is. Sibley's cancer center is very nice, seems state-of-the-art, and this sounds like it will be much less intense than chemo. The early morning treatments (and my side effects) will throw off my work out routine, I'm not pleased about that, but I've taken a few weeks off for vacations and such before. I still plan to run in the mornings, but my 5-7 miles average will probably switch to 2-3.
A slight digression. Once you have chosen radiation therapy at Sibley, you are given a barcoded card (basically a library card) and when you get to the cancer center you scan the barcode at a handheld scanner/barcode reader station, and proceed to the dressing room. The dressing rooms (there are two, one for men & one for women) contain three changing rooms, six small lockers, and one bathroom. One bathroom. Did I mention nausea is one of the primary side effects of radiation therapy? And there is only one bathroom for the dozens of nauseous patients who come & go during each of my visits. Anyway, in the changing room I have to get naked, put on an "open in the back" hospital gown, and then a hospital robe, and then put my shoes back on. There isn't a good place to hang your clothes in the room (although valuables go in one of the small lockers and you keep the key), but there is a coat rack outside the dressing rooms where I will be hanging my suits.
So after checking in (barcode) and changing, I come out of the dressing room in hospital gown & robe, wearing dress shoes. You know something is the matter with you when you're looking like that big of an ass.
Digression over. So today while sitting in my hospital gown/robe/dress shoes attire, sitting in the waiting room with Julie, I get called back. Here we go, showtime, going to get my tattoos for triangulation and my first dose of radiation. Or not. Instead the two very nice nurses/technicians take me back to the machine that will be blasting me from the top and bottom, and tell me today will just be x-rays to confirm the physicist has correctly pinpointed the blast zones of my abdomen. Still I have to disrobe and take off my shoes, leaving the on the open in the back gown, and get on the radiation table. The mold of my upper back they took last week is there and I have to get back into the same position as before.
Instead of high levels of radiation I was just getting low level x-rays, but they still take the same precautions as the real thing, which means my sole remaining testicle (righty) gets placed in a lead ball clamp. Probably the most frightening part of all of this is having the nurses raise my ball and place it in the cold metal cup, then start screwing the top down over it. I was telling Julie, as we waited for the bus home today, more women have held my ball and penis in the last 12 months than all the other years put together.
It's cold and uncomfortable. Your hands are behind you gripping handle bars, and you are of course trying not to move, and you have a big lead ball attached to your... ball. The head of the radiation machine is about the size of an extra-large pizza, and it rotates on an arm top to bottom, coming very close as it does so. The pizza head stays on top first to blast the radiation, then rotates under me to black from my back, and then I'll be done.
So that's what I have to look forward to tomorrow morning at 7:45 am. Tattoos and my first radiation dose. Schedule changes a few times but for the most part the treatments are at 8:15 am. Treatment runs through the first week of August, I think August 3rd is my last scheduled treatment date with the possibility of 4-5 additional doses thereafter.
I'm probably making this sound worse than it is. Sibley's cancer center is very nice, seems state-of-the-art, and this sounds like it will be much less intense than chemo. The early morning treatments (and my side effects) will throw off my work out routine, I'm not pleased about that, but I've taken a few weeks off for vacations and such before. I still plan to run in the mornings, but my 5-7 miles average will probably switch to 2-3.
Monday, July 4, 2011
To Irradiate Or Not To Irradiate, That Is The Question
At least that's the question by my insurance company, which has denied the claim by my doctor to allow me to be treated with radiation. This treatment was supposed to begin tomorrow, 7/5. But let me start from the beginning...
In my last post I noted how my cancer had, unfortunately, returned and I was electing radiation treatment over chemo. Since that post (6/20) I have had several more doctors appointments meeting with the two doctors who offer the treatment. First up was the Cancer Center at Sibley Hospital where I was getting a consultation for radiation treatment. Then we visited with Washington Oncology Hematology for the chemo consult, where is where I received my chemo last year.
I also called & spoke to the surgeon who did my cancer surgery last year (left radical orchiectomy).
All three doctors said the same things: First, it sucks that it came back and it really shouldn't have. Second, since it did come back, this is exactly where you would expect it to return (abdomen). Third, very treatable and I again have two options; three weeks of chemo (BEP) or three weeks of radiation.
Chemo never sounds like fun, and unlike last year when I had a single, somewhat weak drug (carboplatin) for just one (huge) dose, this time I would have to have 3 weeks of BEP. BEP is a much more powerful series of drugs, these are the ones that saved Lance Armstrong. Interestingly my oncologist, Dr. Fishman, told me he contacted "the famous Dr. Lawrence Einhorn" about my case. When Julie & I sat with a blank look on our faces ("the famous Dr. who?"), Fishman explained that Einhorn was the doctor who led the team that saved Lance Armstrong. Apparently Einhorn is the one who pioneered the BEP chemo cycle. So Fishman contacted Einhorn about my case, and Einhorn thought (like any good oncologist) that BEP/Chemo was a great way to treat my cancer, but admitted that radiation was just as likely to achieve the desired result.
While chemo sounds miserable, had any of the doctors said it was the preferred method of treatment, I'd have said "let's do it." But all things being equal, I'm going to choose the (slightly) easier option. Going with BEP chemo would almost certainly meant taking 3-4 weeks off from work. This is an almost daily treatment regimen which requires IVs in between treatment to hydrate, booster shots for your immune system, etc. And of course doing this chemo course would remove BEP as a treatment option down the road if my cancer ever does return (just like I'll never again get carboplatin, the drug I had last year).
Radiation, on the other hand, is also daily treatment for 3 weeks. But this treatment takes less time (15 mins) and would allow me to continue working, although possibly on an abbreviated schedule. The level of radiation I'd be receiving is significantly less than say prostate cancer. So having radiation now at a lower lever means I could conceivably still get radiation at higher levels later in life should cancer return.
Prior to receiving radiation treatment you have to have a mapping appointment, which I had on 6/27. My mom was in town and went to the appointment with me so she could see the hospital, meet some of the staff, and see people coming & doing for treatment. At that appointment they do a 360 degree CT Scan of your body and put three marks on you (one on the belly and one on each side/love handle). Right now I have temporary marks in those areas but tomorrow (7/5) with my first treatment, I was to have the permanent tattoos put into place (mole size). Those tattoos become the marks the drs use to triangulate the location for the series of radiation blasts my body will absorb.
Or should be absorbing. Now with this letter from my insurance company (talk about ruining my day yesterday... had a bit of a pity-party when I read that letter) denying the treatment, I don't know what to think. I hope this is just a coding misunderstanding, although the letter is awfully damn specific. I have an email in to our benefits admin at the office who fights with the insurance company for employees all the time, and I'll call Sibley in the morning (Sibley, coincidentally, is both the name of the hospital AND my radiologist, although there is no relation there otherwise) to see if they can get this fixed. The temporary marks on my body which have already lasted a week will not last forever. So I don't know if I'm getting tattooed and irradiated tomorrow or not.
If for some reason insurance really will not cover this (inconceivable, radiation is the preferred method of post-testicular cancer treatment when caught early) but they will cover chemo, then that's what I'll do. Losing my hair, taking 3-4 weeks off from work, and being otherwise totally miserable aside, I'll do what I have to do.
In my last post I noted how my cancer had, unfortunately, returned and I was electing radiation treatment over chemo. Since that post (6/20) I have had several more doctors appointments meeting with the two doctors who offer the treatment. First up was the Cancer Center at Sibley Hospital where I was getting a consultation for radiation treatment. Then we visited with Washington Oncology Hematology for the chemo consult, where is where I received my chemo last year.
I also called & spoke to the surgeon who did my cancer surgery last year (left radical orchiectomy).
All three doctors said the same things: First, it sucks that it came back and it really shouldn't have. Second, since it did come back, this is exactly where you would expect it to return (abdomen). Third, very treatable and I again have two options; three weeks of chemo (BEP) or three weeks of radiation.
Chemo never sounds like fun, and unlike last year when I had a single, somewhat weak drug (carboplatin) for just one (huge) dose, this time I would have to have 3 weeks of BEP. BEP is a much more powerful series of drugs, these are the ones that saved Lance Armstrong. Interestingly my oncologist, Dr. Fishman, told me he contacted "the famous Dr. Lawrence Einhorn" about my case. When Julie & I sat with a blank look on our faces ("the famous Dr. who?"), Fishman explained that Einhorn was the doctor who led the team that saved Lance Armstrong. Apparently Einhorn is the one who pioneered the BEP chemo cycle. So Fishman contacted Einhorn about my case, and Einhorn thought (like any good oncologist) that BEP/Chemo was a great way to treat my cancer, but admitted that radiation was just as likely to achieve the desired result.
While chemo sounds miserable, had any of the doctors said it was the preferred method of treatment, I'd have said "let's do it." But all things being equal, I'm going to choose the (slightly) easier option. Going with BEP chemo would almost certainly meant taking 3-4 weeks off from work. This is an almost daily treatment regimen which requires IVs in between treatment to hydrate, booster shots for your immune system, etc. And of course doing this chemo course would remove BEP as a treatment option down the road if my cancer ever does return (just like I'll never again get carboplatin, the drug I had last year).
Radiation, on the other hand, is also daily treatment for 3 weeks. But this treatment takes less time (15 mins) and would allow me to continue working, although possibly on an abbreviated schedule. The level of radiation I'd be receiving is significantly less than say prostate cancer. So having radiation now at a lower lever means I could conceivably still get radiation at higher levels later in life should cancer return.
Prior to receiving radiation treatment you have to have a mapping appointment, which I had on 6/27. My mom was in town and went to the appointment with me so she could see the hospital, meet some of the staff, and see people coming & doing for treatment. At that appointment they do a 360 degree CT Scan of your body and put three marks on you (one on the belly and one on each side/love handle). Right now I have temporary marks in those areas but tomorrow (7/5) with my first treatment, I was to have the permanent tattoos put into place (mole size). Those tattoos become the marks the drs use to triangulate the location for the series of radiation blasts my body will absorb.
Or should be absorbing. Now with this letter from my insurance company (talk about ruining my day yesterday... had a bit of a pity-party when I read that letter) denying the treatment, I don't know what to think. I hope this is just a coding misunderstanding, although the letter is awfully damn specific. I have an email in to our benefits admin at the office who fights with the insurance company for employees all the time, and I'll call Sibley in the morning (Sibley, coincidentally, is both the name of the hospital AND my radiologist, although there is no relation there otherwise) to see if they can get this fixed. The temporary marks on my body which have already lasted a week will not last forever. So I don't know if I'm getting tattooed and irradiated tomorrow or not.
If for some reason insurance really will not cover this (inconceivable, radiation is the preferred method of post-testicular cancer treatment when caught early) but they will cover chemo, then that's what I'll do. Losing my hair, taking 3-4 weeks off from work, and being otherwise totally miserable aside, I'll do what I have to do.
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