15 YEARS AGO, as this blog has made abundantly clear, I went through chemotherapy. And chemo has side-effects.
So, did I experience one of the more well-known and visible effects – hair loss? Sorta.
This was obviously a concern when we first started treatment. Not that it would have stopped us from proceeding, it was more of a question of how much I would lose, for how long and if and how it would grow back.
And I actually had quite a bit to lose. The hairline at my forehead had already started to recede (a genetic gift) but I had stopped getting haircuts for a couple of years and had a longish ponytail and a full beard.
Still, I was told, I was getting the half-and-half chemo of two different compounds. One was known to cause hair loss, the other wasn’t. Plus body chemistry and individual genetics come into play, so it was impossible to predict how or if I’d lose hair.
As it turned out, the chemicals wrecking my veins and killing the malignancy had an odd sense of humor. I got to keep the hair on my head – I’d be losing that naturally in the years to come – as well as the beard. Everything from the neck down, however, was gone.
Slick arms and legs are OK, and loss of chest hair made that area easier to mark when I started radiation treatments. But I didn’t really feel I needed a chemical bikini wax.
The fact that I was losing hair “down there” was a source of endless amusement for my female friends. Not that anyone but Gwen saw the results. It was more a schadenfreude on the part of those who felt compelled to trim or shave or wax or otherwise maintain their “area.” They knew I would learn what they had found when they had allowed hair to grow back.
“It’s gonna ITCH,” they would tease.
And they were right.
TODAY the hair on my head is kept very short, which helps make the thinning less noticeable. The beard has been reduced to a trimmed goatee. But otherwise, I’m fairly hairy. On my arms, legs, chest, nether regions – could do without it spreading to my back, but what can I do?
Having gone through the itchy days, I would not ask anyone to remove body hair unless they truly wanted to.
And I don’t mind that I became a source of amusement for my friends. Especially since I may have just done so again.
Thursday, June 18, 2009
Sunday, June 7, 2009
Been there, done that, got the T-shirt
TODAY, if I’m not mistaken, is Cancer Survivors Day.
Appropriately, yesterday I participated in a local Relay for Life, walking the Survivor Lap. I’ve done this several times.
Over a decade ago I attended my first one, in Stuttgart, Ark., where I was living and working at the time. The town calling itself the “rice and duck capital of the world” also had a higher-than-average cancer rate, I have heard. Could just be a statistical fluke, maybe the agricultural chemicals sprayed over nearby fields was a factor, maybe it was the almost-nightly spraying of insecticides throughout the town in what felt like a vain attempt to control the mosquitoes (rice fields require standing water, and the bugs were already very much part of the local ecosystem). Since it didn’t seem to faze the insects, I referred to the spray trucks activities as “feeding the skeeters.”
Whatever the cause, if any could be assigned as cancer is a tricky multifaceted devil, the disease touched many around town, including the great-great grandson of the town’s founder (and my landlord at the time) whose wife is a survivor. So the town embraced the American Cancer Society’s “Relay” program, and put out a big effort, with walkers on the track all 24 hours, lots of business sponsors, and tents and booths around most of the high school track.
I’ve seen places with much bigger populations put on smaller events, which is surprising and disappointing.
Fortunately, Greenfield, Ind., does a fairly good job with theirs, and instead of having the Survivor Lap start the event on Friday evening, it was set as a “Victory Lap” on Saturday morning. I guess it was easier to get survivors to come out then than to fight the evening rush-hour traffic the day before. The local state senator is a survivor, and she gave a brief speech before we walked. Afterward we had a Survivor Brunch under a big tent.
And, as with every Relay I go to, after signing on as a survivor, I get the Relay survivor T-shirt.
I have mixed feelings about these shirts I’ve collected. I am proud to support the ACS effort, but often the shirt will say something like “I’M A SURVIVOR” in big letters on the back. Being one who doesn’t like wearing his survivor status on his sleeve metaphorically, I couldn’t help but have second thoughts about doing it literally. Fortunately, some shirts – like the one I got yesterday – don’t make a big deal of it. Reflecting the optimism of the recent successful Obama presidential campaign, the Relay has a “Hope” theme this year. I don’t mind wearing that across my chest.
Aside from the ACS Relays, I’ve also gotten free T-shirts from the Northwest Arkansas Radiation Therapy Institute. (I’ll be getting into the radiation therapy memories soon.) Every summer they host a Survivor Luncheon with free T-shirts and an inspirational speaker. I’m a long ways from Springdale, Ark., where NARTI is and the event is held, but I can still have them mail me the shirts. These have different themes from year to year. My favorite was the one that was modeled on the logo of the TV show “Survivor.”
Talk about going through some challenges to be declared the ultimate Survivor. But then, our Tribe doesn’t want anyone’s fire to go out.
Postscript, and follow-up to my previous posting: Things went surprisingly well on my journey down to see my son graduate high school. Kathy* and her husband were gracious hosts, the lad was glad to see me and to help my little niece discover the ocean (my mother, sister and brother-in-law also came along). After commencement Kathy told me that my son’s grade average was just shy of Honors, and that he was already enrolled in the local community college. Life goes on.
- - - - - - - - - - - - - -
*Not her real name
(NEXT)
Appropriately, yesterday I participated in a local Relay for Life, walking the Survivor Lap. I’ve done this several times.
Over a decade ago I attended my first one, in Stuttgart, Ark., where I was living and working at the time. The town calling itself the “rice and duck capital of the world” also had a higher-than-average cancer rate, I have heard. Could just be a statistical fluke, maybe the agricultural chemicals sprayed over nearby fields was a factor, maybe it was the almost-nightly spraying of insecticides throughout the town in what felt like a vain attempt to control the mosquitoes (rice fields require standing water, and the bugs were already very much part of the local ecosystem). Since it didn’t seem to faze the insects, I referred to the spray trucks activities as “feeding the skeeters.”
Whatever the cause, if any could be assigned as cancer is a tricky multifaceted devil, the disease touched many around town, including the great-great grandson of the town’s founder (and my landlord at the time) whose wife is a survivor. So the town embraced the American Cancer Society’s “Relay” program, and put out a big effort, with walkers on the track all 24 hours, lots of business sponsors, and tents and booths around most of the high school track.
I’ve seen places with much bigger populations put on smaller events, which is surprising and disappointing.
Fortunately, Greenfield, Ind., does a fairly good job with theirs, and instead of having the Survivor Lap start the event on Friday evening, it was set as a “Victory Lap” on Saturday morning. I guess it was easier to get survivors to come out then than to fight the evening rush-hour traffic the day before. The local state senator is a survivor, and she gave a brief speech before we walked. Afterward we had a Survivor Brunch under a big tent.
And, as with every Relay I go to, after signing on as a survivor, I get the Relay survivor T-shirt.
I have mixed feelings about these shirts I’ve collected. I am proud to support the ACS effort, but often the shirt will say something like “I’M A SURVIVOR” in big letters on the back. Being one who doesn’t like wearing his survivor status on his sleeve metaphorically, I couldn’t help but have second thoughts about doing it literally. Fortunately, some shirts – like the one I got yesterday – don’t make a big deal of it. Reflecting the optimism of the recent successful Obama presidential campaign, the Relay has a “Hope” theme this year. I don’t mind wearing that across my chest.
Aside from the ACS Relays, I’ve also gotten free T-shirts from the Northwest Arkansas Radiation Therapy Institute. (I’ll be getting into the radiation therapy memories soon.) Every summer they host a Survivor Luncheon with free T-shirts and an inspirational speaker. I’m a long ways from Springdale, Ark., where NARTI is and the event is held, but I can still have them mail me the shirts. These have different themes from year to year. My favorite was the one that was modeled on the logo of the TV show “Survivor.”
Talk about going through some challenges to be declared the ultimate Survivor. But then, our Tribe doesn’t want anyone’s fire to go out.
Postscript, and follow-up to my previous posting: Things went surprisingly well on my journey down to see my son graduate high school. Kathy* and her husband were gracious hosts, the lad was glad to see me and to help my little niece discover the ocean (my mother, sister and brother-in-law also came along). After commencement Kathy told me that my son’s grade average was just shy of Honors, and that he was already enrolled in the local community college. Life goes on.
- - - - - - - - - - - - - -
*Not her real name
(NEXT)
Wednesday, May 20, 2009
Responsibilities and obligations
TODAY I’m packing and planning for a long weekend on the road.
Soon I’ll be making the 1,000-mile journey to coastal Mississippi, with an overnight stop with family in central Arkansas. At the end of that trek, I’ll get to meet briefly with my son, and watch him receive his high school diploma.
We are practically strangers to each other now. At best, I’m like a distant uncle. In past years he expressed resentment at being stuck with my last name, while his mother had that of his stepfather. I don’t know if he still feels that way, but since he is over 18, there’s nothing I could do to stop him changing his name to his stepfather’s, his mother’s maiden name or to Rumplestiltskin, for that matter.
A relationship doesn’t turn this way overnight. We struggled with staying connected, me being involved with his life, when we only lived a couple of hours apart. Since I moved northward several years ago, then he and the parents who raised him moved further southward, losing touch completely seemed inevitable.
Especially with the conflicts his mother and I so often had, starting just a year into the divorce.
FIFTEEN YEARS AGO, I thought we had an agreement.
When I told Kathy* about my cancer, and the treatment, and how while I wouldn’t lose my job the worktime I lost would be unpaid, I told her I would be unable some weeks to send child support.
She said she understood, and wouldn’t make a big deal of it. I could pay more once I was finally working fulltime again. Besides our son was living mainly with his aunt and grandmother (who were also very understanding of my situation) while Kathy and her husband were getting home and job settled after moving to the Memphis area.
Then the letter came.
I was being sued for back child support. Feeling betrayed, I called Kathy. She said she had no choice, that it came up while making a mortgage application or something. She hoped I’d understand.
As the state of Arkansas understood it, since I had no written agreement or court order to suspend support, I owed and had to start paying immediately – present weekly payments plus arrears.
Since I couldn’t afford to pay support, I certainly couldn’t afford a lawyer to fight this. And by the letter of the law, I really did owe and was completely obligated to pay. And, to be honest, I did feel obligated, and did want to pay. It’s just that my bank account with hardly anything in it wouldn’t let me.
So the order came down, from the Office of Child Support Enforcement. Child support plus an amount towards arrears would be deducted directly from my paycheck, week after week, month after month, for the rest of the boy’s childhood.
Between this and insurance and other regular deductions, I had to work at least three days a week to make any money for myself. This wasn’t always possible. On short weeks, the amount of child support paid was reduced to a percentage of what little I was making, with the balance of what I owed (the obligation never reduced) being added to the arrears amount.
I can still remember sitting there with my 20-30-something dollar pay stub while taking a call from Kathy berating me for holding out on her because she got a reduced payment. I don’t think she actually accused me of being greedy, but it was in her tone.
Even putting health issues aside, those were not easy days. Fortunately our hobbies were based on books that were inexpensive and easily shared among the group. Movies were bargain rentals and matinees. Name-brand soda, name brand any food, was a luxury. Ground turkey 1-pound chubs for 69 cents at Wal-Mart were about the only meat we could afford.
Between a doting aunt, two grandmothers, his stepfather's grandparents, and of course, his mother and stepfather, the boy wanted for nothing. I took comfort in this, in that while there was only so much I could pay, my shortcomings didn’t affect his wellbeing.
He has been well cared for in all the years since, in spite of his mother’s frequent insistence that I’m irresponsible and a failure in living up to my obligations.
Perhaps I have been. I think that final judgment will be in the mind and life of a young man who I may never see again after Sunday. I will live with the verdict.
I know this seems to go a bit off-topic, away from the cancer fight. But this was a major way that my struggle was with more than the disease. In spite of my life going on hold while I took time out for chemo, the bills kept coming in. Rent had to be paid, creditors didn’t care what my circumstances were. The ripples of this disturbance in my life flowed outward, taking years to dissipate. My child support obligation ended this month; as for my responsibilities, time will tell.
- - - - - - - - - - - - - -
*Not her real name
(NEXT)
Soon I’ll be making the 1,000-mile journey to coastal Mississippi, with an overnight stop with family in central Arkansas. At the end of that trek, I’ll get to meet briefly with my son, and watch him receive his high school diploma.
We are practically strangers to each other now. At best, I’m like a distant uncle. In past years he expressed resentment at being stuck with my last name, while his mother had that of his stepfather. I don’t know if he still feels that way, but since he is over 18, there’s nothing I could do to stop him changing his name to his stepfather’s, his mother’s maiden name or to Rumplestiltskin, for that matter.
A relationship doesn’t turn this way overnight. We struggled with staying connected, me being involved with his life, when we only lived a couple of hours apart. Since I moved northward several years ago, then he and the parents who raised him moved further southward, losing touch completely seemed inevitable.
Especially with the conflicts his mother and I so often had, starting just a year into the divorce.
FIFTEEN YEARS AGO, I thought we had an agreement.
When I told Kathy* about my cancer, and the treatment, and how while I wouldn’t lose my job the worktime I lost would be unpaid, I told her I would be unable some weeks to send child support.
She said she understood, and wouldn’t make a big deal of it. I could pay more once I was finally working fulltime again. Besides our son was living mainly with his aunt and grandmother (who were also very understanding of my situation) while Kathy and her husband were getting home and job settled after moving to the Memphis area.
Then the letter came.
I was being sued for back child support. Feeling betrayed, I called Kathy. She said she had no choice, that it came up while making a mortgage application or something. She hoped I’d understand.
As the state of Arkansas understood it, since I had no written agreement or court order to suspend support, I owed and had to start paying immediately – present weekly payments plus arrears.
Since I couldn’t afford to pay support, I certainly couldn’t afford a lawyer to fight this. And by the letter of the law, I really did owe and was completely obligated to pay. And, to be honest, I did feel obligated, and did want to pay. It’s just that my bank account with hardly anything in it wouldn’t let me.
So the order came down, from the Office of Child Support Enforcement. Child support plus an amount towards arrears would be deducted directly from my paycheck, week after week, month after month, for the rest of the boy’s childhood.
Between this and insurance and other regular deductions, I had to work at least three days a week to make any money for myself. This wasn’t always possible. On short weeks, the amount of child support paid was reduced to a percentage of what little I was making, with the balance of what I owed (the obligation never reduced) being added to the arrears amount.
I can still remember sitting there with my 20-30-something dollar pay stub while taking a call from Kathy berating me for holding out on her because she got a reduced payment. I don’t think she actually accused me of being greedy, but it was in her tone.
Even putting health issues aside, those were not easy days. Fortunately our hobbies were based on books that were inexpensive and easily shared among the group. Movies were bargain rentals and matinees. Name-brand soda, name brand any food, was a luxury. Ground turkey 1-pound chubs for 69 cents at Wal-Mart were about the only meat we could afford.
Between a doting aunt, two grandmothers, his stepfather's grandparents, and of course, his mother and stepfather, the boy wanted for nothing. I took comfort in this, in that while there was only so much I could pay, my shortcomings didn’t affect his wellbeing.
He has been well cared for in all the years since, in spite of his mother’s frequent insistence that I’m irresponsible and a failure in living up to my obligations.
Perhaps I have been. I think that final judgment will be in the mind and life of a young man who I may never see again after Sunday. I will live with the verdict.
I know this seems to go a bit off-topic, away from the cancer fight. But this was a major way that my struggle was with more than the disease. In spite of my life going on hold while I took time out for chemo, the bills kept coming in. Rent had to be paid, creditors didn’t care what my circumstances were. The ripples of this disturbance in my life flowed outward, taking years to dissipate. My child support obligation ended this month; as for my responsibilities, time will tell.
- - - - - - - - - - - - - -
*Not her real name
(NEXT)
Thursday, May 7, 2009
More of me to love
It occurs to me, a couple of months into this project, that I haven’t yet elaborated on the statement at the top of the blog. (You get to live, but you have to become fat.) I’ll rectify that now.
You wouldn't know that if you saw me today, but growing up I’d never been a particularly large guy. On the contrary, if I had grown up near a beach, I probably would have been that scrawny kid getting sand kicked in his face. My height topped out at around 5-foot-7 with a smallish-medium body, so while I wasn’t a rail, I wasn’t particularly muscular either.
I gained some muscle in the army, and was a healthy 140-ish pounds in college, but my last year of school was also the last year of my short-lived marriage. Not taking care of myself and what was likely a case of clinical depression dropped my weight to as low as 128, when I cinched my belt and felt it couldn’t go any tighter because of my hip bones. Kathy* (now my ex) even insisted I get an AIDS test.
After the collapse of the marriage and change of home and companion, I recovered to a more normal weight. My job kept me fairly active, and I’ve never been into heavy snacking.
15 YEARS AGO, that all changed.
After diagnosis, and as they start treatment, the doctors advised me of the various side-effects. One, however, they did not warn me of: Rather than wasting away like many cancer patients, I was going to get a lot bigger.
And I was actually happy when the oncologist ordered me not to lose weight. No dieting for me (at least on cheese week), thanks, doctor’s orders! More pie? Don’t mind if I do.
Seems that if your weight stays the same or goes down, it’s a sign the treatment isn’t working. But if you’re being cured, you gain. Thus, the oncologist was quite happy that I progressed toward tipping the scales at 200 pounds. Yes, my weight went up 70 pounds in two years! And over the next decade it crept up so that for several years now I tip the scales at 250.
It could be said that surviving cancer changes a person, but I hadn’t expected this.
TODAY, I deal with finding XL and 2XL clothes, treating sleep apnea, and the endless disappointment of promising myself to “do something” about my weight but never quite getting around to it.
16 YEARS AGO: Can’t say I wasn’t warned, though. Back before I was diagnosed, Gwen showed me a video of the movie “Don’t Tell Her It’s Me,” a forgettable 1990 romantic comedy starring Shelley Long and Steve Guttenberg, who plays a Hodgkins survivor. The movie opens with Guttenberg’s character undergoing treatment and chubbing up, thanks to makeup and latex foam. Then Long, playing his sister who happens to be a romance writer, persuades him to come out of his shell (almost literally, eww) to woo Jami Gertz. Then, over a single lovely training montage, the fat suit peels off to reveal our handsome hero.
Wish I could do something like that. Heck, if it would make it happen, I’d even agree to do a Police Academy sequel.
- - - - -
*Not her real name.
(NEXT)
You wouldn't know that if you saw me today, but growing up I’d never been a particularly large guy. On the contrary, if I had grown up near a beach, I probably would have been that scrawny kid getting sand kicked in his face. My height topped out at around 5-foot-7 with a smallish-medium body, so while I wasn’t a rail, I wasn’t particularly muscular either.
I gained some muscle in the army, and was a healthy 140-ish pounds in college, but my last year of school was also the last year of my short-lived marriage. Not taking care of myself and what was likely a case of clinical depression dropped my weight to as low as 128, when I cinched my belt and felt it couldn’t go any tighter because of my hip bones. Kathy* (now my ex) even insisted I get an AIDS test.
After the collapse of the marriage and change of home and companion, I recovered to a more normal weight. My job kept me fairly active, and I’ve never been into heavy snacking.
15 YEARS AGO, that all changed.
After diagnosis, and as they start treatment, the doctors advised me of the various side-effects. One, however, they did not warn me of: Rather than wasting away like many cancer patients, I was going to get a lot bigger.
And I was actually happy when the oncologist ordered me not to lose weight. No dieting for me (at least on cheese week), thanks, doctor’s orders! More pie? Don’t mind if I do.
Seems that if your weight stays the same or goes down, it’s a sign the treatment isn’t working. But if you’re being cured, you gain. Thus, the oncologist was quite happy that I progressed toward tipping the scales at 200 pounds. Yes, my weight went up 70 pounds in two years! And over the next decade it crept up so that for several years now I tip the scales at 250.
It could be said that surviving cancer changes a person, but I hadn’t expected this.
TODAY, I deal with finding XL and 2XL clothes, treating sleep apnea, and the endless disappointment of promising myself to “do something” about my weight but never quite getting around to it.
16 YEARS AGO: Can’t say I wasn’t warned, though. Back before I was diagnosed, Gwen showed me a video of the movie “Don’t Tell Her It’s Me,” a forgettable 1990 romantic comedy starring Shelley Long and Steve Guttenberg, who plays a Hodgkins survivor. The movie opens with Guttenberg’s character undergoing treatment and chubbing up, thanks to makeup and latex foam. Then Long, playing his sister who happens to be a romance writer, persuades him to come out of his shell (almost literally, eww) to woo Jami Gertz. Then, over a single lovely training montage, the fat suit peels off to reveal our handsome hero.
Wish I could do something like that. Heck, if it would make it happen, I’d even agree to do a Police Academy sequel.
- - - - -
*Not her real name.
(NEXT)
Thursday, April 23, 2009
Cheese Week!
15 YEARS AGO I discovered how hard it is to live without cheese.
If you are lactose-intolerant or vegan, you probably have little problem with this. But I’m neither, and it wasn’t just cheese. My chemo and medications came with a whole list of dietary restrictions. Off the top of my head, I remember they included sausage, beans and beer. But the hardest to adjust to was cheese.
No pizza, of course — and it also threw a curve into making other meals on a tight budget. I never realized how cheese-dependent I was until then. At least I didn’t have a problem in doing without beer.
You can imagine how these restrictions would hinder going out for Mexican. But fortunately, the El Chico would run specials on fajitas. Leave off the cheese and sour cream, and I could manage all right.
And even with the restrictions, I was still gaining weight.
About the only bright spot in this was that I wasn’t under these restrictions the whole time. In each four-week cycle I had to adhere to them for the two weeks of chemo, then for the next week while the drugs worked their way out of my system.
The next week was Cheese Week.
I looked forward to it every month, a full week without restrictions. Pepperoni pizza, quesadillas and refried beans, cheesy casseroles, sometimes washing it down with a cool malted adult beverage.
I didn’t realize that others looked forward to it, too. “Is it Cheese Week yet?” I heard our friend Valerie ask Gwen one day. Seems it not only made cooking for our gatherings easier, but meant my other side-effects were lessened, making me easier to get along with.
While I wouldn’t want to deal with chemo again, or recommend it to anyone else, it was kinda neat having a sort of holiday every month.
(NEXT)
If you are lactose-intolerant or vegan, you probably have little problem with this. But I’m neither, and it wasn’t just cheese. My chemo and medications came with a whole list of dietary restrictions. Off the top of my head, I remember they included sausage, beans and beer. But the hardest to adjust to was cheese.
No pizza, of course — and it also threw a curve into making other meals on a tight budget. I never realized how cheese-dependent I was until then. At least I didn’t have a problem in doing without beer.
You can imagine how these restrictions would hinder going out for Mexican. But fortunately, the El Chico would run specials on fajitas. Leave off the cheese and sour cream, and I could manage all right.
And even with the restrictions, I was still gaining weight.
About the only bright spot in this was that I wasn’t under these restrictions the whole time. In each four-week cycle I had to adhere to them for the two weeks of chemo, then for the next week while the drugs worked their way out of my system.
The next week was Cheese Week.
I looked forward to it every month, a full week without restrictions. Pepperoni pizza, quesadillas and refried beans, cheesy casseroles, sometimes washing it down with a cool malted adult beverage.
I didn’t realize that others looked forward to it, too. “Is it Cheese Week yet?” I heard our friend Valerie ask Gwen one day. Seems it not only made cooking for our gatherings easier, but meant my other side-effects were lessened, making me easier to get along with.
While I wouldn’t want to deal with chemo again, or recommend it to anyone else, it was kinda neat having a sort of holiday every month.
(NEXT)
Friday, April 10, 2009
Pillow for a bitter pill
15 YEARS AGO I was incredibly thankful for marshmallow fluff.
On some odd whim – hey, it’s on sale for only pennies a jar! – sometime in the previous year we had bought several containers of marshmallow fluff. Perfect for desserts or fluffernutters or whatever Gwen thought we might someday make. Naturally, we put them to the back of a kitchen shelf and forgot about them.
Until I started on chemotherapy.
Part of the regimen was taking pills, and that included a daily dose of prednisone. This medicine is a wonder-steroid used in the treatment of dozens of diseases, disorders and complaints. And you’d think that with it in such high demand, someone would make a prednisone tablet that was coated, or otherwise masked the fact that the pill tastes AWFUL.
Sure, it’s only in your mouth for a moment, but that’s all it takes for you to want to retch. And feeling like you want to vomit is not conducive to getting necessary medications to go down and stay down. And I got to look forward to this ordeal day after day, two weeks on, two weeks off, for six months.
Maybe if we put the pill in something to mask the nastiness, we thought (hey, it works for dogs, right?). So Gwen hunted through the pantry and, with triumph, she produced a jar of marshmallow fluff.
In the coming weeks she became a master at enrobing the obnoxious pill in a pillow of white sweetness. Between the fluff’s tendency to melt in the mouth and the pill corrupting the flavor of the coating I still had to swallow fast. But it did go down a lot easier.
One day she absent-mindedly licked the fluff off of her fingers, and it had just a trace of prednisone residue in it.
“Ugh!” she exclaimed. “That IS awful. I’m so sorry you have to swallow that.”
From then on, she was extra careful to ensure the pill was completely covered, and extra careful not to accidentally taste it again.
We were so glad when I finally took my last dose of prednisone. As it happened, we were on our last jar of fluff.
That was fine. As grateful as we are to the stuff for helping us get through those months, it would be years before we would even consider eating that stuff again.
(NEXT)
On some odd whim – hey, it’s on sale for only pennies a jar! – sometime in the previous year we had bought several containers of marshmallow fluff. Perfect for desserts or fluffernutters or whatever Gwen thought we might someday make. Naturally, we put them to the back of a kitchen shelf and forgot about them.
Until I started on chemotherapy.
Part of the regimen was taking pills, and that included a daily dose of prednisone. This medicine is a wonder-steroid used in the treatment of dozens of diseases, disorders and complaints. And you’d think that with it in such high demand, someone would make a prednisone tablet that was coated, or otherwise masked the fact that the pill tastes AWFUL.
Sure, it’s only in your mouth for a moment, but that’s all it takes for you to want to retch. And feeling like you want to vomit is not conducive to getting necessary medications to go down and stay down. And I got to look forward to this ordeal day after day, two weeks on, two weeks off, for six months.
Maybe if we put the pill in something to mask the nastiness, we thought (hey, it works for dogs, right?). So Gwen hunted through the pantry and, with triumph, she produced a jar of marshmallow fluff.
In the coming weeks she became a master at enrobing the obnoxious pill in a pillow of white sweetness. Between the fluff’s tendency to melt in the mouth and the pill corrupting the flavor of the coating I still had to swallow fast. But it did go down a lot easier.
One day she absent-mindedly licked the fluff off of her fingers, and it had just a trace of prednisone residue in it.
“Ugh!” she exclaimed. “That IS awful. I’m so sorry you have to swallow that.”
From then on, she was extra careful to ensure the pill was completely covered, and extra careful not to accidentally taste it again.
We were so glad when I finally took my last dose of prednisone. As it happened, we were on our last jar of fluff.
That was fine. As grateful as we are to the stuff for helping us get through those months, it would be years before we would even consider eating that stuff again.
(NEXT)
Saturday, April 4, 2009
Games people play
FIFTEEN YEARS AGO, I helped run a live-Vampire game at Fayetteville’s first all-games convention, Razorbattles.
Actually, Gwen did most of the work. Our role-players had the run of the common areas of the hotel, plus the room we used as game headquarters, which also doubled as the local vamp “prince”s lair and meeting place. Gwen, with the help of a couple others in our club, was roving Storyteller, keeping the action going and mediating disputes.
My job, since I had had chemo just days before, was to stay put at HQ and be the Storyteller there. That way I could help without exerting myself, and stay in one place since I didn’t feel like moving at all.
Feedback in the days and weeks that followed was that everyone had a great time and were looking forward to the next year’s event during Razorbattles 1995. To whatever extent I gave plot points and direction and handed down decisions, I must have done a bang-up job. Oh, the stories I must have told. Wish I could remember it.
Sometimes the side-effects are unavoidable. Doesn’t matter what you and your friends have planned for months to do on a certain weekend. I’m not upset that cancer and its treatment stole away the memories of that weekend, I have other good times to remember.
Exactly 15 years ago, on Monday, April 4, I wasn’t feeling too bad, but Gwen was under the weather (this may have been the Monday after Razorbattles, such events are taxing even for the healthy) so she and I both called in sick.
We had spent the evening watching something on the VCR when suddenly we heard shouting and car horns and firecrackers outside. Puzzled at first, we suddenly remembered that it was the night of the NCAA men’s basketball finals, and that the hometown Arkansas Razorbacks were playing. Had they won? We switched the TV to live broadcast and sure enough, the Hogs had just won the national championship!
With us living just a few blocks from the U of A campus, you can understand the pandemonium.
We knew it wasn’t likely we would be in this kind of atmosphere often, so we ventured out and walked towards the University, ending up on Dickson Street, the kind of bar/restaurant/shopping street that most college towns have just off-campus, where students like to gather. There were so many people in the street that the police found it easier to put up barricades to traffic than to try to clear the pedestrians off.
We didn’t have money on us to buy a drink or anything, we just hung around a bit among the jubilant fans. There were also TV cameras there from local news and national networks. Since we were supposed to be “sick,” we avoided those – as did a couple of people from Gwen’s work she noticed. Seems “Razorback fever” had caused them to call in as well.
So we wandered back towards home. Feeling energized by all the excitement around us, we walked a little further to the house of Chris and Cheryl, friends we had met through the Camarilla (vampire club). They weren’t into basketball or native Arkansans, but they liked seeing everyone else around acting nuts. The four of us decided we could act out as well. Being fans of werewolves as well as vampires, we decided to howl.
So we stood out in their front yard, howling at the sky at the top of our lungs. And nobody noticed.
That was how we played our games, had our fun. And that memory I got to keep.
(NEXT)
Actually, Gwen did most of the work. Our role-players had the run of the common areas of the hotel, plus the room we used as game headquarters, which also doubled as the local vamp “prince”s lair and meeting place. Gwen, with the help of a couple others in our club, was roving Storyteller, keeping the action going and mediating disputes.
My job, since I had had chemo just days before, was to stay put at HQ and be the Storyteller there. That way I could help without exerting myself, and stay in one place since I didn’t feel like moving at all.
Feedback in the days and weeks that followed was that everyone had a great time and were looking forward to the next year’s event during Razorbattles 1995. To whatever extent I gave plot points and direction and handed down decisions, I must have done a bang-up job. Oh, the stories I must have told. Wish I could remember it.
Sometimes the side-effects are unavoidable. Doesn’t matter what you and your friends have planned for months to do on a certain weekend. I’m not upset that cancer and its treatment stole away the memories of that weekend, I have other good times to remember.
Exactly 15 years ago, on Monday, April 4, I wasn’t feeling too bad, but Gwen was under the weather (this may have been the Monday after Razorbattles, such events are taxing even for the healthy) so she and I both called in sick.
We had spent the evening watching something on the VCR when suddenly we heard shouting and car horns and firecrackers outside. Puzzled at first, we suddenly remembered that it was the night of the NCAA men’s basketball finals, and that the hometown Arkansas Razorbacks were playing. Had they won? We switched the TV to live broadcast and sure enough, the Hogs had just won the national championship!
With us living just a few blocks from the U of A campus, you can understand the pandemonium.
We knew it wasn’t likely we would be in this kind of atmosphere often, so we ventured out and walked towards the University, ending up on Dickson Street, the kind of bar/restaurant/shopping street that most college towns have just off-campus, where students like to gather. There were so many people in the street that the police found it easier to put up barricades to traffic than to try to clear the pedestrians off.
We didn’t have money on us to buy a drink or anything, we just hung around a bit among the jubilant fans. There were also TV cameras there from local news and national networks. Since we were supposed to be “sick,” we avoided those – as did a couple of people from Gwen’s work she noticed. Seems “Razorback fever” had caused them to call in as well.
So we wandered back towards home. Feeling energized by all the excitement around us, we walked a little further to the house of Chris and Cheryl, friends we had met through the Camarilla (vampire club). They weren’t into basketball or native Arkansans, but they liked seeing everyone else around acting nuts. The four of us decided we could act out as well. Being fans of werewolves as well as vampires, we decided to howl.
So we stood out in their front yard, howling at the sky at the top of our lungs. And nobody noticed.
That was how we played our games, had our fun. And that memory I got to keep.
(NEXT)
Saturday, March 28, 2009
Breathtaking
15 YEARS AGO I could breathe freely again.
The doctors were pleasantly surprised how quickly I got full access to my lungs back. As I noted earlier, the lymphoma mass had taken up about half my chest cavity and had clamped down on my esophagus so that my airway was down to a fraction of its normal size.
They showed me the X-ray. It looked almost healthy.
This was a huge relief. But I was still feeling tired, feeling bad, but now it was from the chemo. To kill the cancer I had to be poisoned. And I still had a couple of months to go.
TODAY I had to stop and catch my breath.
Gwen and I spent the afternoon cleaning up around home, some long-overdue straightening up and sorting. Still so much left to do.
Cancer free I may be, but I never really got back into good physical shape over these past 15 years. Everyone I know these days has only seen me as a chubby person – they never saw the skinny little guy I was in the Army or college.
Little health problems creep up on me, reminding me of that little 20-year window. But hey, I don’t have to die from cancer – my Dad was the youngest of 13, so looking through the family tree I have my choice of all kinds of maladies: arthritis, cancer, diabetes, heart attack, stroke… and my father was ushered out via the big “C” himself.
For crying out loud, I breathe through a tube every night.
Gwen has her own worries. She’s at the age her mother was when she died of cancer, and reproductive cancers have struck nearly all the women in her family on both sides. A few months she had a bout of congestive heart failure. Being between jobs doesn’t help.
Yeah, I have good insurance now, but I still can’t afford another major health problem. After the hassles of dealing with medical billing and other bills falling behind as my income fell to nearly nothing due to missing work, I decided years ago that I have learned my lesson. Today, if a doctor tells me I have cancer, I’ll have to tell him that I’m sorry, but I can’t afford it right now, so I’ll be a responsible health consumer and not buy any cancer this year.
After all, in America health care is a luxury. If I can choose not to buy a Lexus, I can opt for an economy tumor. Once I get the (non-metaphorical) Chevrolet paid off.
I just hope I’m not asked to test drive a heart problem. Or stroke. Or any thing else. That would be a really rough ride.
(NEXT)
The doctors were pleasantly surprised how quickly I got full access to my lungs back. As I noted earlier, the lymphoma mass had taken up about half my chest cavity and had clamped down on my esophagus so that my airway was down to a fraction of its normal size.
They showed me the X-ray. It looked almost healthy.
This was a huge relief. But I was still feeling tired, feeling bad, but now it was from the chemo. To kill the cancer I had to be poisoned. And I still had a couple of months to go.
TODAY I had to stop and catch my breath.
Gwen and I spent the afternoon cleaning up around home, some long-overdue straightening up and sorting. Still so much left to do.
Cancer free I may be, but I never really got back into good physical shape over these past 15 years. Everyone I know these days has only seen me as a chubby person – they never saw the skinny little guy I was in the Army or college.
Little health problems creep up on me, reminding me of that little 20-year window. But hey, I don’t have to die from cancer – my Dad was the youngest of 13, so looking through the family tree I have my choice of all kinds of maladies: arthritis, cancer, diabetes, heart attack, stroke… and my father was ushered out via the big “C” himself.
For crying out loud, I breathe through a tube every night.
Gwen has her own worries. She’s at the age her mother was when she died of cancer, and reproductive cancers have struck nearly all the women in her family on both sides. A few months she had a bout of congestive heart failure. Being between jobs doesn’t help.
Yeah, I have good insurance now, but I still can’t afford another major health problem. After the hassles of dealing with medical billing and other bills falling behind as my income fell to nearly nothing due to missing work, I decided years ago that I have learned my lesson. Today, if a doctor tells me I have cancer, I’ll have to tell him that I’m sorry, but I can’t afford it right now, so I’ll be a responsible health consumer and not buy any cancer this year.
After all, in America health care is a luxury. If I can choose not to buy a Lexus, I can opt for an economy tumor. Once I get the (non-metaphorical) Chevrolet paid off.
I just hope I’m not asked to test drive a heart problem. Or stroke. Or any thing else. That would be a really rough ride.
(NEXT)
Wednesday, March 18, 2009
Floating
15 YEARS AGO, I was a part-time/full-time “floater.”
I started working at Tyson’s Mexican Original plant in Fayetteville, Ark., while I was going to the U of A. They paid well enough that I could work 30 hours a week while going to school full-time. I eventually transitioned to 40 hours, working second shift (3-11 p.m.). After college graduation, I held on to the job until I could find one using my journalism degree. Fifteen years ago, I was still there, and would be for another year.
M.O. made tortilla products (it was a division of Tyson, known for chicken, but, like most megafoods, is diversified) including taco shells and chips made with limestone-ground corn (or “masa”). We were a major supplier for Taco Bell, which kept us very busy during the chain’s rapid expansion in the early 1990s. I started, like most, in a Level 1 job, standing at the end of one of the large machines that cooked and spat out tortillas or chips or shells and packing the product in bags and boxes. After a couple of years, I got a Level 2 job, which was stacking the boxes on pallets. It was still fairly physical, but not as tedious and, of course, the pay was better.
At the end of 1993 I had finally made the jump to Level 3. The department that made stacks of corn tortillas expanded into second shift. This product required big vats of corn to be cooked and ground on site, and “corn cook” (which included the grinding) was a Level 3 job. So that’s what I was doing for a living when I found out about you-know-what.
Just as I was starting my chemotherapy treatments, the plant managers determined that they would not need a second shift for corn tortillas after all. In some industries this would mean being laid off, but there was always plenty to do around this plant. Thus a bunch of us became “floaters,” doing whatever needed to be done that regular employees didn’t have covered. Sometimes it was make-work, other times it was filling in for absent workers. As regular job positions opened up, we would fill them and be taken off the floater list.
Within weeks, the Level 1 floaters found jobs, as there was a fair amount of turnover. But I was Level 3. This meant I was handy to fill in for an absent Level 2 or Level 3 job, and especially to give 15-minute or lunch breaks to those who were there. It also meant they had to make an effort to find me another Level 3 job, which meant I wasn’t coming off the floater list any time soon.
As my treatments continued, I found myself in an unusual situation in regards to the plant’s absence policy. Normally each absence adds up towards a limit you can be away from work over any particular period. But I triggered the “serious illness” clause. Technically every day that I called in was an extension of the original absence for chemotherapy. As long as it was all related to the Hodgkins, I wasn’t in trouble with the company no matter how many days I missed.
The downside was that time away from work was unpaid, on the other hand, I still had a job whenever I could make it in. And the supervisors didn’t mind it when I wasn’t there. An absent floater isn’t missed. When I could make it, I got to float around the plant, usually giving breaks.
Eventually, I’ll get around to a post about the chemo side-effects.
For now I should note that some lingered longer than others. I would feel fine enough to go to work, but then I would get out on the plant floor and feel – well, wrong.
The most pronounced was when I helped at the head the taco-shell line. At that end, big lumps of masa dough would be fed into a machine with big rollers that rolled it out into tortillas. These would be fed on a conveyor belt into a machine that formed and fried them into shells. For the machine to run smoothly and the end product to be right, we had to keep those rollers at a very precise setting to ensure the right thickness and weight of the discs of masa they were rolling out. A few times an hour, more frequently if we suspected something was off, I had to grab some raw tortillas off the line and weigh them. If it was a few grams too light or heavy, adjust the head and weigh again.
So this is not the place for a floater to actually have his head feel like it was floating.
Thank goodness I was usually just giving breaks. I might have to weigh things once, but wouldn’t have to act unless things were way off, in which case I’d be calling a supervisor anyway.
Sometimes I could barely make it for that short period before the regular worker came back. My heart would race, the machinery seemed to speed up out of control, but I’d look over at the next line – its rollers and belt were running at the same speed as mine. Normal. But still, I could feel the panic at the back of my mind, creeping forward.
Finally, one day when I was to work that job the whole shift, I had to beg off after about an hour or two. I said I felt sick, the supervisor understood, and let me drop back to giving breaks. I don’t think he had me doing a full eight hours at the head of those lines again. Part of me was grateful. Part of me felt I had failed. But I understood that at least I had a job.
I could float for as long as I needed to. I wasn’t going to sink.
(NEXT)
I started working at Tyson’s Mexican Original plant in Fayetteville, Ark., while I was going to the U of A. They paid well enough that I could work 30 hours a week while going to school full-time. I eventually transitioned to 40 hours, working second shift (3-11 p.m.). After college graduation, I held on to the job until I could find one using my journalism degree. Fifteen years ago, I was still there, and would be for another year.
M.O. made tortilla products (it was a division of Tyson, known for chicken, but, like most megafoods, is diversified) including taco shells and chips made with limestone-ground corn (or “masa”). We were a major supplier for Taco Bell, which kept us very busy during the chain’s rapid expansion in the early 1990s. I started, like most, in a Level 1 job, standing at the end of one of the large machines that cooked and spat out tortillas or chips or shells and packing the product in bags and boxes. After a couple of years, I got a Level 2 job, which was stacking the boxes on pallets. It was still fairly physical, but not as tedious and, of course, the pay was better.
At the end of 1993 I had finally made the jump to Level 3. The department that made stacks of corn tortillas expanded into second shift. This product required big vats of corn to be cooked and ground on site, and “corn cook” (which included the grinding) was a Level 3 job. So that’s what I was doing for a living when I found out about you-know-what.
Just as I was starting my chemotherapy treatments, the plant managers determined that they would not need a second shift for corn tortillas after all. In some industries this would mean being laid off, but there was always plenty to do around this plant. Thus a bunch of us became “floaters,” doing whatever needed to be done that regular employees didn’t have covered. Sometimes it was make-work, other times it was filling in for absent workers. As regular job positions opened up, we would fill them and be taken off the floater list.
Within weeks, the Level 1 floaters found jobs, as there was a fair amount of turnover. But I was Level 3. This meant I was handy to fill in for an absent Level 2 or Level 3 job, and especially to give 15-minute or lunch breaks to those who were there. It also meant they had to make an effort to find me another Level 3 job, which meant I wasn’t coming off the floater list any time soon.
As my treatments continued, I found myself in an unusual situation in regards to the plant’s absence policy. Normally each absence adds up towards a limit you can be away from work over any particular period. But I triggered the “serious illness” clause. Technically every day that I called in was an extension of the original absence for chemotherapy. As long as it was all related to the Hodgkins, I wasn’t in trouble with the company no matter how many days I missed.
The downside was that time away from work was unpaid, on the other hand, I still had a job whenever I could make it in. And the supervisors didn’t mind it when I wasn’t there. An absent floater isn’t missed. When I could make it, I got to float around the plant, usually giving breaks.
Eventually, I’ll get around to a post about the chemo side-effects.
For now I should note that some lingered longer than others. I would feel fine enough to go to work, but then I would get out on the plant floor and feel – well, wrong.
The most pronounced was when I helped at the head the taco-shell line. At that end, big lumps of masa dough would be fed into a machine with big rollers that rolled it out into tortillas. These would be fed on a conveyor belt into a machine that formed and fried them into shells. For the machine to run smoothly and the end product to be right, we had to keep those rollers at a very precise setting to ensure the right thickness and weight of the discs of masa they were rolling out. A few times an hour, more frequently if we suspected something was off, I had to grab some raw tortillas off the line and weigh them. If it was a few grams too light or heavy, adjust the head and weigh again.
So this is not the place for a floater to actually have his head feel like it was floating.
Thank goodness I was usually just giving breaks. I might have to weigh things once, but wouldn’t have to act unless things were way off, in which case I’d be calling a supervisor anyway.
Sometimes I could barely make it for that short period before the regular worker came back. My heart would race, the machinery seemed to speed up out of control, but I’d look over at the next line – its rollers and belt were running at the same speed as mine. Normal. But still, I could feel the panic at the back of my mind, creeping forward.
Finally, one day when I was to work that job the whole shift, I had to beg off after about an hour or two. I said I felt sick, the supervisor understood, and let me drop back to giving breaks. I don’t think he had me doing a full eight hours at the head of those lines again. Part of me was grateful. Part of me felt I had failed. But I understood that at least I had a job.
I could float for as long as I needed to. I wasn’t going to sink.
(NEXT)
Friday, March 13, 2009
Where was God?
These kinds of journals and recollections often have a sacred component. The writer at some point, or perhaps throughout, expresses how he or she wouldn’t have made it through the harrowing life-threatening, life-affirming ordeal without the help of a higher power. But except for this particular entry, you’re not likely to find that here.
TODAY I am an active member of a church in Indianapolis. I love their style and can get behind what they believe in. This should be no surprise to any who knew me in my youth,* as I was quite active as a boy and teen in my hometown congregation.
15 YEARS AGO, I wasn’t going to church at all.
Drifting away from regular attendance was surprisingly easy, though I’ve been told that once on their own, young adults tend to let such things lapse. I was part of the “religious council” in my Army unit in Germany, but we never did any council meetings and it was mainly a way to get into “religious retreats” which turned out to be thinly disguised Alpine vacations.
During and after college, I was long out of the churchgoing habit and engaged-then-married to an atheist. After the divorce, I was with Gwen who wasn’t churchy either. Also, outside the small-town bubble, it was easier to see the rampant hypocrisy that evangelical Protestants are famous for. Did I really want to be part of that?
Then I got cancer.
If this was a message to “get right with the Lord,” it didn’t come through that way. A few months into my treatment, it did occur to me that I was losing some possible benefits of being in a church. If I had been, there would be the spiritual benefits – people praying for me, visiting, offering encouragement – and the more tangible benefits of fellow members bringing by food or taking up collections to help when money was tight.
Looking at it this way, it didn’t feel right for me to seek a church to join. It wouldn’t be that I had suddenly found religion, but that I was going to use these people for my own comfort. And that didn’t seem very Christian to me.
So, while I was hanging out with fans of Gothic pop culture -- some openly Pagan -- sleeping in on Sundays and going to chemo with nary a prayer upon my lips – was God there?
14 YEARS AGO, in May, Gwen and I went out for Cinco de Mayo at a local TexMex place in Fort Smith (where we lived at the time). I entered the restaurant’s drawing, and -- surprise! -- my name was drawn for $500 in free food. The prize was given to me as a stack of $20 gift certificates (this was in the days before the electronic gift card). I could use one for lunch or a bunch of them to treat my friends.
Within a month I was out of a job.
Over the next several months, as the job search grew more frustrating and finances grew slim, those certificates were a lifesaver. Sometimes we didn’t have enough money for groceries. Sometimes we were just too depressed to cook. Either way, I was incredibly grateful that we had them to help us get through those times.
Just lucky that I had that right when I needed it, right?
Consider also my good fortune that a year earlier, I had not only caught my cancer in an early stage, but also it happened at a time when I had a job with good insurance. I also had an unusual degree of work flexibility (more on this later). I managed to avoid complete bankruptcy, and came out of the ordeal still employed practically like I was before the diagnosis.
Some people would look at all that, and declare that someone was looking out for me.
- - - - -
*What kind of church I ended up in might be a surprise. But that’s beside the point here.
(NEXT)
TODAY I am an active member of a church in Indianapolis. I love their style and can get behind what they believe in. This should be no surprise to any who knew me in my youth,* as I was quite active as a boy and teen in my hometown congregation.
15 YEARS AGO, I wasn’t going to church at all.
Drifting away from regular attendance was surprisingly easy, though I’ve been told that once on their own, young adults tend to let such things lapse. I was part of the “religious council” in my Army unit in Germany, but we never did any council meetings and it was mainly a way to get into “religious retreats” which turned out to be thinly disguised Alpine vacations.
During and after college, I was long out of the churchgoing habit and engaged-then-married to an atheist. After the divorce, I was with Gwen who wasn’t churchy either. Also, outside the small-town bubble, it was easier to see the rampant hypocrisy that evangelical Protestants are famous for. Did I really want to be part of that?
Then I got cancer.
If this was a message to “get right with the Lord,” it didn’t come through that way. A few months into my treatment, it did occur to me that I was losing some possible benefits of being in a church. If I had been, there would be the spiritual benefits – people praying for me, visiting, offering encouragement – and the more tangible benefits of fellow members bringing by food or taking up collections to help when money was tight.
Looking at it this way, it didn’t feel right for me to seek a church to join. It wouldn’t be that I had suddenly found religion, but that I was going to use these people for my own comfort. And that didn’t seem very Christian to me.
So, while I was hanging out with fans of Gothic pop culture -- some openly Pagan -- sleeping in on Sundays and going to chemo with nary a prayer upon my lips – was God there?
14 YEARS AGO, in May, Gwen and I went out for Cinco de Mayo at a local TexMex place in Fort Smith (where we lived at the time). I entered the restaurant’s drawing, and -- surprise! -- my name was drawn for $500 in free food. The prize was given to me as a stack of $20 gift certificates (this was in the days before the electronic gift card). I could use one for lunch or a bunch of them to treat my friends.
Within a month I was out of a job.
Over the next several months, as the job search grew more frustrating and finances grew slim, those certificates were a lifesaver. Sometimes we didn’t have enough money for groceries. Sometimes we were just too depressed to cook. Either way, I was incredibly grateful that we had them to help us get through those times.
Just lucky that I had that right when I needed it, right?
Consider also my good fortune that a year earlier, I had not only caught my cancer in an early stage, but also it happened at a time when I had a job with good insurance. I also had an unusual degree of work flexibility (more on this later). I managed to avoid complete bankruptcy, and came out of the ordeal still employed practically like I was before the diagnosis.
Some people would look at all that, and declare that someone was looking out for me.
- - - - -
*What kind of church I ended up in might be a surprise. But that’s beside the point here.
(NEXT)
Thursday, March 5, 2009
“Why didn’t you tell me?”
TODAY (actually, a couple of weeks ago) in an e-mail from my ex-wife Kathy* I got a sense that she doesn’t remember when exactly I was in treatment for cancer. It seems odd that she might think that we were still together at the time, since she was actually quite out of the loop.
15 YEARS AGO, I got a frantic phone call.
“Why didn’t you tell me?” Kathy asked in a demanding tone.
My honest answer, which didn’t sound true but was, was that I was hardly telling anyone.
I don’t think it was denial — I was confronting this disease head-on. I think it was something more like pride. I didn’t want to be the kind of person who constantly brought up my condition and my suffering, fishing for sympathy and attention. So I didn’t talk about it to strangers, or friends, or anyone who didn’t already know because I saw them regularly. With close friends we mostly discussed it in the context of scheduling – we can’t get together on this date, I have a clinic appointment.
“The Ex” and what and whether to tell her was hardly on my mind. It did dawn on me eventually that I had to tell her something, as the treatment schedule would interfere with visiting my four-year-old son – not to mention the fact that my strained finances would affect the paying of child support. I was still deliberating this when she called out of the blue, having heard from others about my condition.
The bigger concern, back when I was first diagnosed, was what to tell Mom.
It would be wrong for me to keep this from her, but Gwen and I felt we had to be careful with the news. Mom had buried her husband less than a year and a half earlier – and it was cancer that killed him. But what Dad had was intestinal tumors that spread to the liver; my case was different. So when we told her, I made sure to emphasize that we had caught it early, and the doctors' optimism, that they were even saying “cure.”
That optimistic prognosis was another reason I didn’t make a big deal of it. I wasn’t dying. I knew that, odds were, in less than a year it would all be behind me and I’d be getting on with my life cancer-free.
Not that it would be an easy road getting to that point.
- - - - -
*Not her real name
(NEXT)
15 YEARS AGO, I got a frantic phone call.
“Why didn’t you tell me?” Kathy asked in a demanding tone.
My honest answer, which didn’t sound true but was, was that I was hardly telling anyone.
I don’t think it was denial — I was confronting this disease head-on. I think it was something more like pride. I didn’t want to be the kind of person who constantly brought up my condition and my suffering, fishing for sympathy and attention. So I didn’t talk about it to strangers, or friends, or anyone who didn’t already know because I saw them regularly. With close friends we mostly discussed it in the context of scheduling – we can’t get together on this date, I have a clinic appointment.
“The Ex” and what and whether to tell her was hardly on my mind. It did dawn on me eventually that I had to tell her something, as the treatment schedule would interfere with visiting my four-year-old son – not to mention the fact that my strained finances would affect the paying of child support. I was still deliberating this when she called out of the blue, having heard from others about my condition.
The bigger concern, back when I was first diagnosed, was what to tell Mom.
It would be wrong for me to keep this from her, but Gwen and I felt we had to be careful with the news. Mom had buried her husband less than a year and a half earlier – and it was cancer that killed him. But what Dad had was intestinal tumors that spread to the liver; my case was different. So when we told her, I made sure to emphasize that we had caught it early, and the doctors' optimism, that they were even saying “cure.”
That optimistic prognosis was another reason I didn’t make a big deal of it. I wasn’t dying. I knew that, odds were, in less than a year it would all be behind me and I’d be getting on with my life cancer-free.
Not that it would be an easy road getting to that point.
- - - - -
*Not her real name
(NEXT)
Thursday, February 26, 2009
Playing with vampires
15 YEARS AGO, I had dealings with two different kinds of vampires.
As part of my treatment, I had regular appointments with a friendly vampire, a/k/a the clinic phlebotomist. I started chemo with a great deal of fear and sensitivity where needles were concerned. To any degree that I’m more comfortable with being stuck now, I have her to thank/blame.
We warned her from the very first time, that I was a big baby about having a needle stabbed into my vein so two test-tubes could be filled with my vital fluids. But she was very understanding – she was experienced with babies of all ages. This wide range of experience helped a lot when the quality of my veins started to degrade.
During one of my visits, she opened a drawer to get out a small bandage and, noticing the kids’ Band-aids with cartoon characters, I jokingly said I wanted one of those. She said since I was a brave boy, I could have a Snoopy Band-aid. From then on, I got Snoopy.
One day we happened to have with us our toy stuffed “baby” Chulhu. It was one of the original handmade plushes sold by Pagan Publishing, which used a glove pattern for its tentacle-mouth head. The phlebotomist thought it was the cutest thing, and gave it a Snoopy Band-aid, too. ‘Thulhy still wears his to this day.
The other vampires I hung out with were our best friends, and became part of our morale support system during my season of chemo.
A couple of years earlier, I discovered the roleplaying game “Vampire: The Masquerade.” This was mechanically similar to D&D – write up a character on paper, talk through its adventures and roll dice to decide random events such as the success of an action. The twist on this was, instead of hunting a monster, you WERE the monster. All player characters are members of the thirsty Undead. The title comes from the “Masquerade”* of blending in with mortal society, hiding in plain sight both for survival and easier hunting.
By pure chance, I picked up one of the very first edition rulebooks in 1991. In ’92, I played in an excellent game at a Missouri sci-fi convention, after which my then-wife Kathy** and I started playing and running the game as part of our RPG campaigns. That summer, at GenCon in Milwaukee, all the scheduled VtM games were filled, so Kathy started an “open gaming” session – with my input – which ended up going “live” by the end of the convention, with about 30 people acting in character and us winging it with the rules. The official LARP (live-action roleplay) rules wouldn’t come out for another year.
In ’93 Kathy was out of my life, but Gwen was in, and it didn’t take long for her to get hooked on vampire roleplaying, especially after a weekend with an independent LARP group in Kansas City. That August, back at GenCon, White Wolf Games (the publishers of VtM) hosted the sign-ups for the official fan club and LARP organization, the Camarilla (named for the fictional society of “civilized” vampires in the game).
A quick aside: Our roleplaying was completely theatre of the mind. We did no actual bloodletting or sexual “blood play.” In fact, we made a point of not being part of the “real vampire” subculture. In the live version of the game, we would improv our speaking lines and use hand signals to represent use of power and rock-paper-scissors to resolve conflicts and settle anything that would require a dice roll in the sit-down version. Most of the time, the “feeding” aspect of the character was trivial. In fact, the games looked more like “The Sopranos” than “Dracula.”
By the end of that year, we had met a couple of other Camarilla members who lived in Fayetteville, and persuaded some of our roleplaying friends to try the game. At the start of 1994, we had established the organization’s first provisional chapter in Arkansas, which we called “Coterie Bellaluna.”
Our group had two scheduled meetings a month. One was roughly a business meeting. We kept the business to a minimum and had fun with it, patterning each meeting after one of the Clans (vampire subgroups) from the VtM rulebooks. The other meeting was a live roleplay session, and we rotated who was in charge of the storyline.
The camaraderie built this way, and my concentrating on club business as its first president, helped keep me occupied while undergoing treatment. I never considered going to a cancer support group. After all, my treatments were going well, and it felt good to spend a few hours every other week with friends, pretending to be immortal, with cancer the last thing on my mind.
- - - - -
* If you are unfamiliar with this game, but have heard of “Vampire: The Requiem,” that is the revised version of the RPG used today. Due to the revisions, and since I’ve drifted away from active roleplaying, I’ve never played this.
**Not her real name
(NEXT)
As part of my treatment, I had regular appointments with a friendly vampire, a/k/a the clinic phlebotomist. I started chemo with a great deal of fear and sensitivity where needles were concerned. To any degree that I’m more comfortable with being stuck now, I have her to thank/blame.
We warned her from the very first time, that I was a big baby about having a needle stabbed into my vein so two test-tubes could be filled with my vital fluids. But she was very understanding – she was experienced with babies of all ages. This wide range of experience helped a lot when the quality of my veins started to degrade.
During one of my visits, she opened a drawer to get out a small bandage and, noticing the kids’ Band-aids with cartoon characters, I jokingly said I wanted one of those. She said since I was a brave boy, I could have a Snoopy Band-aid. From then on, I got Snoopy.
One day we happened to have with us our toy stuffed “baby” Chulhu. It was one of the original handmade plushes sold by Pagan Publishing, which used a glove pattern for its tentacle-mouth head. The phlebotomist thought it was the cutest thing, and gave it a Snoopy Band-aid, too. ‘Thulhy still wears his to this day.
The other vampires I hung out with were our best friends, and became part of our morale support system during my season of chemo.
A couple of years earlier, I discovered the roleplaying game “Vampire: The Masquerade.” This was mechanically similar to D&D – write up a character on paper, talk through its adventures and roll dice to decide random events such as the success of an action. The twist on this was, instead of hunting a monster, you WERE the monster. All player characters are members of the thirsty Undead. The title comes from the “Masquerade”* of blending in with mortal society, hiding in plain sight both for survival and easier hunting.
By pure chance, I picked up one of the very first edition rulebooks in 1991. In ’92, I played in an excellent game at a Missouri sci-fi convention, after which my then-wife Kathy** and I started playing and running the game as part of our RPG campaigns. That summer, at GenCon in Milwaukee, all the scheduled VtM games were filled, so Kathy started an “open gaming” session – with my input – which ended up going “live” by the end of the convention, with about 30 people acting in character and us winging it with the rules. The official LARP (live-action roleplay) rules wouldn’t come out for another year.
In ’93 Kathy was out of my life, but Gwen was in, and it didn’t take long for her to get hooked on vampire roleplaying, especially after a weekend with an independent LARP group in Kansas City. That August, back at GenCon, White Wolf Games (the publishers of VtM) hosted the sign-ups for the official fan club and LARP organization, the Camarilla (named for the fictional society of “civilized” vampires in the game).
A quick aside: Our roleplaying was completely theatre of the mind. We did no actual bloodletting or sexual “blood play.” In fact, we made a point of not being part of the “real vampire” subculture. In the live version of the game, we would improv our speaking lines and use hand signals to represent use of power and rock-paper-scissors to resolve conflicts and settle anything that would require a dice roll in the sit-down version. Most of the time, the “feeding” aspect of the character was trivial. In fact, the games looked more like “The Sopranos” than “Dracula.”
By the end of that year, we had met a couple of other Camarilla members who lived in Fayetteville, and persuaded some of our roleplaying friends to try the game. At the start of 1994, we had established the organization’s first provisional chapter in Arkansas, which we called “Coterie Bellaluna.”
Our group had two scheduled meetings a month. One was roughly a business meeting. We kept the business to a minimum and had fun with it, patterning each meeting after one of the Clans (vampire subgroups) from the VtM rulebooks. The other meeting was a live roleplay session, and we rotated who was in charge of the storyline.
The camaraderie built this way, and my concentrating on club business as its first president, helped keep me occupied while undergoing treatment. I never considered going to a cancer support group. After all, my treatments were going well, and it felt good to spend a few hours every other week with friends, pretending to be immortal, with cancer the last thing on my mind.
- - - - -
* If you are unfamiliar with this game, but have heard of “Vampire: The Requiem,” that is the revised version of the RPG used today. Due to the revisions, and since I’ve drifted away from active roleplaying, I’ve never played this.
**Not her real name
(NEXT)
Friday, February 13, 2009
The easy part
15 YEARS AGO, I was into my first month of chemotherapy.
As it turns out, the easiest part of being on chemo – was receiving chemo.
I’m referring to the actual procedure in which I get a bunch of mad poisons injected into my body. There are other times for worrying about paying on the deductible or dealing with side-effects or other aspects of life with cancer. But when it was time for my treatments, it was fairly simple and easy.
Fortunately, I had Gwen to come with me to the cancer clinic, and more importantly, to drive me home. During my treatment she occupied herself in the waiting room.
The clinic’s treatment room had a couple of beds and a couple of recliners. I would usually get into a recliner, making myself comfortable in the position I would be in for at least the next hour or so. Then comes a bit of discomfort, as one of the professionals there finds a vein on my hand and inserts the IV. This became harder as the treatments progressed, due to the damage the chemo did to my circulatory system (formerly the owner of jump-up-and-say-hi veins, to this day I’m now a “bad stick”). The nurses -- or whatever their technical titles were -- had to be very good and careful, as they not only had to find tricky veins, but get the needle solidly in so that the corrosive nature of some chemo ingredients wouldn’t leak and damage the flesh of my hand.
After I’m hooked up, and the bags are put in place, then gravity and my circulatory system do the rest. I think there are anesthetics involved at first, so that I don’t feel the harshness of the drugs. There’s a TV up on the wall for us to watch, but I haven’t the foggiest idea what was on. It wasn’t long before the space-time continuum no longer applied to me. During the first treatment, time leapfrogged a bit, but I think I remember Gwen helping me to the car and driving me home. On other visits, both time and space were affected, as I would find myself teleported to my own bed. How did I get home? I frankly didn’t care at the time.
One treatment like this a week for two weeks on, two weeks off. This was my life for the next few months.
But while I was getting drugs, Gwen acquired an addiction. In the waiting room, she would read the clinic’s copy of Entertainment Weekly. Never finished, she slipped it into her purse as we left. The next visit she would bring it back and take the more recent issue, and so on. When my course of treatment ran out, she would be left without her fix, so she mailed in the subscription card.
She’s still hooked, with no intention of kicking the habit.
(NEXT)
As it turns out, the easiest part of being on chemo – was receiving chemo.
I’m referring to the actual procedure in which I get a bunch of mad poisons injected into my body. There are other times for worrying about paying on the deductible or dealing with side-effects or other aspects of life with cancer. But when it was time for my treatments, it was fairly simple and easy.
Fortunately, I had Gwen to come with me to the cancer clinic, and more importantly, to drive me home. During my treatment she occupied herself in the waiting room.
The clinic’s treatment room had a couple of beds and a couple of recliners. I would usually get into a recliner, making myself comfortable in the position I would be in for at least the next hour or so. Then comes a bit of discomfort, as one of the professionals there finds a vein on my hand and inserts the IV. This became harder as the treatments progressed, due to the damage the chemo did to my circulatory system (formerly the owner of jump-up-and-say-hi veins, to this day I’m now a “bad stick”). The nurses -- or whatever their technical titles were -- had to be very good and careful, as they not only had to find tricky veins, but get the needle solidly in so that the corrosive nature of some chemo ingredients wouldn’t leak and damage the flesh of my hand.
After I’m hooked up, and the bags are put in place, then gravity and my circulatory system do the rest. I think there are anesthetics involved at first, so that I don’t feel the harshness of the drugs. There’s a TV up on the wall for us to watch, but I haven’t the foggiest idea what was on. It wasn’t long before the space-time continuum no longer applied to me. During the first treatment, time leapfrogged a bit, but I think I remember Gwen helping me to the car and driving me home. On other visits, both time and space were affected, as I would find myself teleported to my own bed. How did I get home? I frankly didn’t care at the time.
One treatment like this a week for two weeks on, two weeks off. This was my life for the next few months.
But while I was getting drugs, Gwen acquired an addiction. In the waiting room, she would read the clinic’s copy of Entertainment Weekly. Never finished, she slipped it into her purse as we left. The next visit she would bring it back and take the more recent issue, and so on. When my course of treatment ran out, she would be left without her fix, so she mailed in the subscription card.
She’s still hooked, with no intention of kicking the habit.
(NEXT)
Tuesday, February 3, 2009
Cut the mustard
15 YEARS AGO, I got an interesting history lesson.
My story continues at a cancer clinic in Fayetteville (Ark., where I lived at the time). I’m sorry to seem ungrateful to the person who (with the help of his friendly staff) saved my life, but I totally forgot my oncologist’s name.
Anyway, he had the results of my tests (confirmation of Stage II Hodgkins) and came up with a strategy for attacking the dread disease. Like an extra on “ER,” I have since totally forgotten the jargon of what the components of my treatment were. But because I know any readers here would be curious – and because I felt kinda curious myself – I did some looking on the Internet.
For the sake of this memoir, wikipedia will do. Since the cancer was aggressive in confining my lungs, I was to undergo an aggressive treatment, a one-two punch of chemotherapies: MOPP (Mustargen Oncovin Procarbazine Prednisone)
and ABVD (adriamycin, bleomycin, vinblastine and dacarbazine). According to the wiki, the latter is now used in place of the former, but at the time it was a newer cocktail, and the doc felt the older, harsher mix was better for attacking the malignancy. Each has its own side-effects, the doctor explained, and going half-and-half should reduce the severity of any given effect.
Note the “M” in MOPP is “Mustargen,” which looks like “mustard.” That’s not a coincidence; it is actually derived from mustard gas.
According to the oncologist, during research between World Wars I and II on the deadly chemical agent, it was discovered that it was particularly deadly to Hodgkins cancer cells. Thus did a horrific weapon of the first world war evolve into one of the first successful cancer cures.
This also brings home the point of how chemotherapy works. Chemo is basically poison. While it can destroy all manner of cells, the normal ones can be replenished through the body’s healing process, while the malignant cells aren’t. Meanwhile, well, you’re being poisoned! Thus the side-effects, and the fact that even an “easy” treatment like mine isn’t fun.
My regimen was to take six months. If successful, I would undergo six weeks of radiation treatments to clear out what bad cells were left. The chemo pattern was two weeks on, two weeks off. During those two weeks of intravenous treatments and the third week of the drugs working their way out of my system, I had strict dietary restrictions (this left one week a month, which became known as “cheese week” – I’ll make a separate posting on that eventually).
Expected side-effects included extreme fatigue and mental weirdness, loss of hair and suppression of sperm count if not sterility. Because of the half-and-half approach the degree of these effects should be lessened, but still impossible to predict.
Also, after making note of my weight, the oncologist ordered me to gain more. In fact, if my weight ever went down during treatment, it would be a sign that the chemo wasn’t working. Looking over my gut now, I know that having a license to pork up is not as cool as you might think.
(NEXT)
My story continues at a cancer clinic in Fayetteville (Ark., where I lived at the time). I’m sorry to seem ungrateful to the person who (with the help of his friendly staff) saved my life, but I totally forgot my oncologist’s name.
Anyway, he had the results of my tests (confirmation of Stage II Hodgkins) and came up with a strategy for attacking the dread disease. Like an extra on “ER,” I have since totally forgotten the jargon of what the components of my treatment were. But because I know any readers here would be curious – and because I felt kinda curious myself – I did some looking on the Internet.
For the sake of this memoir, wikipedia will do. Since the cancer was aggressive in confining my lungs, I was to undergo an aggressive treatment, a one-two punch of chemotherapies: MOPP (Mustargen Oncovin Procarbazine Prednisone)
and ABVD (adriamycin, bleomycin, vinblastine and dacarbazine). According to the wiki, the latter is now used in place of the former, but at the time it was a newer cocktail, and the doc felt the older, harsher mix was better for attacking the malignancy. Each has its own side-effects, the doctor explained, and going half-and-half should reduce the severity of any given effect.
Note the “M” in MOPP is “Mustargen,” which looks like “mustard.” That’s not a coincidence; it is actually derived from mustard gas.
According to the oncologist, during research between World Wars I and II on the deadly chemical agent, it was discovered that it was particularly deadly to Hodgkins cancer cells. Thus did a horrific weapon of the first world war evolve into one of the first successful cancer cures.
This also brings home the point of how chemotherapy works. Chemo is basically poison. While it can destroy all manner of cells, the normal ones can be replenished through the body’s healing process, while the malignant cells aren’t. Meanwhile, well, you’re being poisoned! Thus the side-effects, and the fact that even an “easy” treatment like mine isn’t fun.
My regimen was to take six months. If successful, I would undergo six weeks of radiation treatments to clear out what bad cells were left. The chemo pattern was two weeks on, two weeks off. During those two weeks of intravenous treatments and the third week of the drugs working their way out of my system, I had strict dietary restrictions (this left one week a month, which became known as “cheese week” – I’ll make a separate posting on that eventually).
Expected side-effects included extreme fatigue and mental weirdness, loss of hair and suppression of sperm count if not sterility. Because of the half-and-half approach the degree of these effects should be lessened, but still impossible to predict.
Also, after making note of my weight, the oncologist ordered me to gain more. In fact, if my weight ever went down during treatment, it would be a sign that the chemo wasn’t working. Looking over my gut now, I know that having a license to pork up is not as cool as you might think.
(NEXT)
Tuesday, January 27, 2009
Quick update
TODAY I'm fairly healthy. Dealing with obesity, sleep apnea, and other small complaints, but hey, it's not cancer, right?
Then again, you never know. Kinda what I found out way back then.
As I work on this blog, I hope you'll pitch in to tell me what you think about this, or to share your experiences. Gwen has said that she wants to put in her two cents eventually; that'll be interesting.
15 YEARS AGO, I was told that among the potential side effects of my chemotherapy was that I would be at high risk for a certain kind of leukemia in 20 years. Granted, that was 20 years I likely wouldn't have otherwise, so going forward with the treatment was a no-brainer.
By that reckoning, as you can tell by the title of this blog, I only have five years left.
(NEXT)
Then again, you never know. Kinda what I found out way back then.
As I work on this blog, I hope you'll pitch in to tell me what you think about this, or to share your experiences. Gwen has said that she wants to put in her two cents eventually; that'll be interesting.
15 YEARS AGO, I was told that among the potential side effects of my chemotherapy was that I would be at high risk for a certain kind of leukemia in 20 years. Granted, that was 20 years I likely wouldn't have otherwise, so going forward with the treatment was a no-brainer.
By that reckoning, as you can tell by the title of this blog, I only have five years left.
(NEXT)
Thursday, January 22, 2009
The comfort of certainty
NINE YEARS AGO, I didn't know what was going on with me.
I had caught some sort of cold that came with coughing fits so wild I would asphyxiate and pass out. I would be at work, and start coughing, then the next thing I knew I was barely aware of who or where I was -- and where I was, was on the floor.
That was frustrating and embarrassing enough, but I knew sooner or later it would happen when I was driving. And it was happening more often, so I knew I couldn't predict when it would come on.
So I finally had Gwen take me to the hospital emergency room. We told them what was happening. They seemed confused. They listened to my chest, looked down my throat. In fact, they were fairly certain that we were, if not making this up, exaggerating, when I went into a coughing fit and passed out.
"Hmm..." the ER personnel said, "we've never seen that before."
So we did some tests, which didn't show anything. And they x-rayed my head, which revealed a harmless arachnoid cyst, but nothing that explained what was going on. I went on some inhaler thingy there to help with my lungs, but I coughed and passed out anyway.
Other doctors came in, as I went in and out of states of consciousness. Gwen said that they were fascinated when I went into seizure-like convulsions sometimes when I was out. And after all their consulting, about all they had to say was, "I've never seen that before."
Y'know, I didn't go there to break new frontiers of medical science. I just wanted to know what was wrong and how to fix it. Too much to ask?
All these people, who studied for years and amassed volumes of biomedical knowledge, with more at their fingertips via computer, basically shrugged, said I had "bronchitis" -- which is more a set of symptoms than a diagnosis, like saying you have "a cold" -- and gave me a prescription for nearly-useless cough medicine and sent us home.
It was just a costly reminder for us that most times, with most doctors, unless a bone is sticking out, they have no idea what it is or what to do. ("House" is a nice fiction, but I've never seen him at any hospital I've been to.)
I went back to work -- at the time I was Sports Editor for the Benton, Ark., newspaper, writing and composing pages every day. I managed to do my job, even with the coughing. My assistant adjusted to it, even saying at one time (with a jaded tone in his voice), "Would you be sure to save that page before you pass out?" The bronchitis eventually faded and went away on its own.
What's this got to do with my cancer?
15 YEARS AGO, the doctors knew. My family physician caught on to it right away. The specialists discovered the exact kind of malignancy I had, and the oncologist knew how to attack it.
We had it nailed, we knew its name. And they weren't just talking treatment, they were talking cure. That's a huge comfort, I know. And I was exceedingly lucky, as a lot of cancer patients have to deal with uncertainty while the medical professionals try to figure things out, knowing that they only have so much time to do so.
I lost one of my favorite teachers from high school to non-Hodgkins lymphoma. When you add the "non" you are basically saying you don't know what it is, and you just have to throw various treatments at it until one sticks. I was spared the "non." For that I'm thankful.
Thank God it was only annoying when I did hear it, but the last thing I want to hear again from someone who has devoted their lives to the study of disease is, "I've never seen that before!"
(NEXT)
I had caught some sort of cold that came with coughing fits so wild I would asphyxiate and pass out. I would be at work, and start coughing, then the next thing I knew I was barely aware of who or where I was -- and where I was, was on the floor.
That was frustrating and embarrassing enough, but I knew sooner or later it would happen when I was driving. And it was happening more often, so I knew I couldn't predict when it would come on.
So I finally had Gwen take me to the hospital emergency room. We told them what was happening. They seemed confused. They listened to my chest, looked down my throat. In fact, they were fairly certain that we were, if not making this up, exaggerating, when I went into a coughing fit and passed out.
"Hmm..." the ER personnel said, "we've never seen that before."
So we did some tests, which didn't show anything. And they x-rayed my head, which revealed a harmless arachnoid cyst, but nothing that explained what was going on. I went on some inhaler thingy there to help with my lungs, but I coughed and passed out anyway.
Other doctors came in, as I went in and out of states of consciousness. Gwen said that they were fascinated when I went into seizure-like convulsions sometimes when I was out. And after all their consulting, about all they had to say was, "I've never seen that before."
Y'know, I didn't go there to break new frontiers of medical science. I just wanted to know what was wrong and how to fix it. Too much to ask?
All these people, who studied for years and amassed volumes of biomedical knowledge, with more at their fingertips via computer, basically shrugged, said I had "bronchitis" -- which is more a set of symptoms than a diagnosis, like saying you have "a cold" -- and gave me a prescription for nearly-useless cough medicine and sent us home.
It was just a costly reminder for us that most times, with most doctors, unless a bone is sticking out, they have no idea what it is or what to do. ("House" is a nice fiction, but I've never seen him at any hospital I've been to.)
I went back to work -- at the time I was Sports Editor for the Benton, Ark., newspaper, writing and composing pages every day. I managed to do my job, even with the coughing. My assistant adjusted to it, even saying at one time (with a jaded tone in his voice), "Would you be sure to save that page before you pass out?" The bronchitis eventually faded and went away on its own.
What's this got to do with my cancer?
15 YEARS AGO, the doctors knew. My family physician caught on to it right away. The specialists discovered the exact kind of malignancy I had, and the oncologist knew how to attack it.
We had it nailed, we knew its name. And they weren't just talking treatment, they were talking cure. That's a huge comfort, I know. And I was exceedingly lucky, as a lot of cancer patients have to deal with uncertainty while the medical professionals try to figure things out, knowing that they only have so much time to do so.
I lost one of my favorite teachers from high school to non-Hodgkins lymphoma. When you add the "non" you are basically saying you don't know what it is, and you just have to throw various treatments at it until one sticks. I was spared the "non." For that I'm thankful.
Thank God it was only annoying when I did hear it, but the last thing I want to hear again from someone who has devoted their lives to the study of disease is, "I've never seen that before!"
(NEXT)
Tuesday, January 13, 2009
Testing, testing...
15 YEARS AGO, the X-rays confirmed Dr. Wilson’s hunch.
There were masses in my neck and chest. Now that they were pointed out, I noticed the swelling at the base of the neck and in the underarms. The doc poked under my arm – Ow! – noting it shouldn’t hurt that much.
The mass in the chest cavity was a major concern. Aside from likely being a malignancy, it was also restricting my breathing. If it kept growing, it could suffocate me.
Mid-January was a blur of tests, most done at various departments of the hospital.
One of the first was a biopsy. A surgeon had to take out a swollen lymph node to examine and find out A) if this was lymphoma, and B) whether it was Hodgkins or non-Hodgkins. It was a fairly simple outpatient procedure, and had to be done with local anesthetic. With my restricted breathing I could easily die on the table under general anesthesia.
I don’t do well with medical stuff as it is, and it seemed to take forever for the anesthetic to kick in, then for the doctors and nurses to do their thing. I sat there as they poked around a hole in the side of my neck, and I started feeling woozy. They insisted – and I could sense a note of fear in their voices – that I stay conscious. Gwen was there for moral support, lending words of encouragement. She has much more of a stomach for these things, and said later that the procedure was, for her, very interesting to watch.
Well, bully for her.
Other tests were to see if and how much this cancer had spread. That meant checking my bone marrow. That meant taking a medical corkscrew to my lower back. This is a very painful procedure, so they gave me some VERY good drugs. It wasn’t so much that I wouldn’t feel the pain, but that I wouldn’t remember it. Or most of the nonsense I babbled.
Gwen was there, and found the whole incident quite entertaining (aside from the painful-corkscrew part). Since she’s the one with the memory of it, perhaps she’ll post or comment here and fill in the gap.
I also had a full-body cat scan. Since they needed to see if there was any cancer in the gastrointestinal tract, that meant I had to line it with a barium solution – the nastiest stuff I have and will likely ever taste. Just the memory of it means I probably won’t be able to hold it down again. Thank goodness I only had to do that once.
The scan went fairly well, once I was in the big metal tube. Took quite a while, but I managed to be patient. Just before leaving, though, I discovered why the substance I had to drink earlier is called the “barium enema.” I don’t know if I wasn’t paying attention when somebody mentioned the side-effects, or no one warned me. Either way, it was a surprise when I got to the toilet just in time for everything I had probably ever eaten up to that point to immediately evacuate my body.
One test gave encouraging results. I had to breathe into a sophisticated piece of equipment that measured my lung capacity. Normally, it would be used as part of the physical for the Arkansas Razorback athletes, so I was in pretty cool company there. The doctors and I were pleasantly surprised to find that my lungs were in excellent shape, not damaged at all by the encroaching cancer. The problem was getting the air to those lungs, my airway was pinched to less than half its diameter.
Finally I had my diagnosis: Stage two Hodgkins lymphoma. Stage one would be just up in the neck and upper-chest area, stage two is also in the chest; stage three, I think, is where it goes beyond the lymph nodes and starts to affect other organs directly. The stages progress until it gets into the bone marrow, which is likely terminal.
I was told that the best thing was that the disease was caught above the diaphragm. Such stages have a 70 percent survival rate. Once it gets to the lymph nodes and organs below the diaphragm, the numbers reverse and the survival rate is 30 percent at best.
In fact, in stage one Hodgkins, it’s possible that insurance would be hesitant to authorize immediate treatment, the doctor said. A person could be in stage one for years. But I had no problem justifying aggressive treatment as soon as possible. The mass was taking up two thirds of the chest cavity, and slowly strangling my esophagus.
No doubt about it, I was about to undergo chemotherapy.
(NEXT)
There were masses in my neck and chest. Now that they were pointed out, I noticed the swelling at the base of the neck and in the underarms. The doc poked under my arm – Ow! – noting it shouldn’t hurt that much.
The mass in the chest cavity was a major concern. Aside from likely being a malignancy, it was also restricting my breathing. If it kept growing, it could suffocate me.
Mid-January was a blur of tests, most done at various departments of the hospital.
One of the first was a biopsy. A surgeon had to take out a swollen lymph node to examine and find out A) if this was lymphoma, and B) whether it was Hodgkins or non-Hodgkins. It was a fairly simple outpatient procedure, and had to be done with local anesthetic. With my restricted breathing I could easily die on the table under general anesthesia.
I don’t do well with medical stuff as it is, and it seemed to take forever for the anesthetic to kick in, then for the doctors and nurses to do their thing. I sat there as they poked around a hole in the side of my neck, and I started feeling woozy. They insisted – and I could sense a note of fear in their voices – that I stay conscious. Gwen was there for moral support, lending words of encouragement. She has much more of a stomach for these things, and said later that the procedure was, for her, very interesting to watch.
Well, bully for her.
Other tests were to see if and how much this cancer had spread. That meant checking my bone marrow. That meant taking a medical corkscrew to my lower back. This is a very painful procedure, so they gave me some VERY good drugs. It wasn’t so much that I wouldn’t feel the pain, but that I wouldn’t remember it. Or most of the nonsense I babbled.
Gwen was there, and found the whole incident quite entertaining (aside from the painful-corkscrew part). Since she’s the one with the memory of it, perhaps she’ll post or comment here and fill in the gap.
I also had a full-body cat scan. Since they needed to see if there was any cancer in the gastrointestinal tract, that meant I had to line it with a barium solution – the nastiest stuff I have and will likely ever taste. Just the memory of it means I probably won’t be able to hold it down again. Thank goodness I only had to do that once.
The scan went fairly well, once I was in the big metal tube. Took quite a while, but I managed to be patient. Just before leaving, though, I discovered why the substance I had to drink earlier is called the “barium enema.” I don’t know if I wasn’t paying attention when somebody mentioned the side-effects, or no one warned me. Either way, it was a surprise when I got to the toilet just in time for everything I had probably ever eaten up to that point to immediately evacuate my body.
One test gave encouraging results. I had to breathe into a sophisticated piece of equipment that measured my lung capacity. Normally, it would be used as part of the physical for the Arkansas Razorback athletes, so I was in pretty cool company there. The doctors and I were pleasantly surprised to find that my lungs were in excellent shape, not damaged at all by the encroaching cancer. The problem was getting the air to those lungs, my airway was pinched to less than half its diameter.
Finally I had my diagnosis: Stage two Hodgkins lymphoma. Stage one would be just up in the neck and upper-chest area, stage two is also in the chest; stage three, I think, is where it goes beyond the lymph nodes and starts to affect other organs directly. The stages progress until it gets into the bone marrow, which is likely terminal.
I was told that the best thing was that the disease was caught above the diaphragm. Such stages have a 70 percent survival rate. Once it gets to the lymph nodes and organs below the diaphragm, the numbers reverse and the survival rate is 30 percent at best.
In fact, in stage one Hodgkins, it’s possible that insurance would be hesitant to authorize immediate treatment, the doctor said. A person could be in stage one for years. But I had no problem justifying aggressive treatment as soon as possible. The mass was taking up two thirds of the chest cavity, and slowly strangling my esophagus.
No doubt about it, I was about to undergo chemotherapy.
(NEXT)
Tuesday, January 6, 2009
New year, new doctor, new diagnosis
TODAY I’m in fairly good health.
The sinus allergies act up, as they have off and on for most of my life. It’s annoying these days, when you know the best medicine is pseudoephedrine, but the pills you pick up off the shelf don’t have it, and to ask for it puts you under suspicion as some kind of meth-head.
Still, I’ve been worse.
15 YEARS AGO I had to admit it just wasn’t going to go away on its own.
For a couple of months I had noticed (or maybe Gwen noticed it first) this raspy wheezing in my breathing. It was especially noticeable after any kind of exertion, which would leave me feeling exhausted a lot quicker than it used to.
Must have been getting out of shape, in spite of having a fairly active on-my-feet job.
Before going to the Soonercon sci-fi/fantasy convention in Oklahoma City in November, I went to a doctor, and got a prescription for antibiotics to clear up whatever must have been attacking my lungs. The stuff seemed to work, as I had no problems at the con.
But in December we noticed the raspiness was still there. Just give it time, I thought. Gwen didn’t like me ignoring it, and suggested I see a doctor. I was going to start going to a new doc that my sister had recommended, so we made an appointment to see Dr. Wilson on the second of January, the first anniversary of the day Gwen and I met.
The doctor was friendly and knowledgeable. He listened to my description of the symptoms. He listened to my lungs and breathing. Sounded like a common infection, he said. He got out his prescription pad, saying he would put me on some antibiotics, I forget what kind now, but at the time they sounded familiar.
“Again?” I asked.
He stopped writing. Was I certain I had taken those before?
Of course. I told him how long and how long ago, and the fact that this raspy breathing and easy fatigue hadn’t gone away.
His demeanor changed. His face was stone professional, but there was an ohmygod look in his eyes. He took a closer look at the swollen glands around my neck. I realized later that from that moment he knew what it was, but he wouldn’t say until he knew for sure.
He immediately ordered X-rays.
(NEXT)
The sinus allergies act up, as they have off and on for most of my life. It’s annoying these days, when you know the best medicine is pseudoephedrine, but the pills you pick up off the shelf don’t have it, and to ask for it puts you under suspicion as some kind of meth-head.
Still, I’ve been worse.
15 YEARS AGO I had to admit it just wasn’t going to go away on its own.
For a couple of months I had noticed (or maybe Gwen noticed it first) this raspy wheezing in my breathing. It was especially noticeable after any kind of exertion, which would leave me feeling exhausted a lot quicker than it used to.
Must have been getting out of shape, in spite of having a fairly active on-my-feet job.
Before going to the Soonercon sci-fi/fantasy convention in Oklahoma City in November, I went to a doctor, and got a prescription for antibiotics to clear up whatever must have been attacking my lungs. The stuff seemed to work, as I had no problems at the con.
But in December we noticed the raspiness was still there. Just give it time, I thought. Gwen didn’t like me ignoring it, and suggested I see a doctor. I was going to start going to a new doc that my sister had recommended, so we made an appointment to see Dr. Wilson on the second of January, the first anniversary of the day Gwen and I met.
The doctor was friendly and knowledgeable. He listened to my description of the symptoms. He listened to my lungs and breathing. Sounded like a common infection, he said. He got out his prescription pad, saying he would put me on some antibiotics, I forget what kind now, but at the time they sounded familiar.
“Again?” I asked.
He stopped writing. Was I certain I had taken those before?
Of course. I told him how long and how long ago, and the fact that this raspy breathing and easy fatigue hadn’t gone away.
His demeanor changed. His face was stone professional, but there was an ohmygod look in his eyes. He took a closer look at the swollen glands around my neck. I realized later that from that moment he knew what it was, but he wouldn’t say until he knew for sure.
He immediately ordered X-rays.
(NEXT)
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