Deb and I just got back from a check-up visit to our E/N/T doc, the guy who initially diagnosed my cancer and did the major surgery on my neck. Great guy, and we feel extremely fortunate to have him on the "team."
And what he did today was exactly what the radiation doc and the chemo doc have done in the last month. Which is to set our next appointment for six months instead of three. I don't think you can get a clearer signal that these guys are feeling better and better about my prognosis.
What I noticed during the visit is what seems to be a reluctance to use the word "cancer" on the part of my docs. This is something I understand a little, as I avoid the word myself. (I find myself using terms like "my illness" and "my treatments" to avoid the "c" word.) What triggered this thought was that the E/N/T doc today said something along the lines of: "Well, that experience is fairly common among folks like you who've had... had a malignancy."
And thinking back over the last several years of doc visits, I think I recognize the pattern: we simply don't want to use the "c" word unless it's absolutely necessary. In addition to "malignancy," they also seem to prefer using the word "tumor." So I understand that we do this avoiding thing, I just don't understand why.
On the other side of the equation, I don't think I've ever heard any of my docs use the other "c" word -- that is "cured" unless it's carefully couched in tentative terms.
Maybe if I start hearing my docs use the word "cured" when describing me, I will be able to start using the word "cancer" without flinching.
Wednesday, August 31, 2011
Monday, August 29, 2011
Somewhat Naive
I had my gall bladder removed last Thursday, August 26th.
Months ago, I had a severe pain in my lower right abdomen which I was sure was appendicitis. And my family doc agreed it likely was, but before someone went merrily slashing away at my tummy, she thought it would make sense to get a CT scan of the area first. Turns out that my appendix was perfectly fine, thank you, but the scan showed there was some "sludge" located in my gall bladder. As I understand it, this sludge is like having a bunch of tiny gallstones.
The pain went away, but my surgeon told me that sooner or later, the gall bladder would have to be removed. And while he was working in that area, he said he could repair the hernia located just under my ribcage. (I was tempted to ask him if he could change the oil and check the sparkplugs while he was in there, but decided not to...)
He said there was no immediate need to have the surgery, since the pain had completely gone, but that having the sludge discharge into the rest of the digestive tract (which was likely to happen sooner or later) would complicate the medical picture considerably.
Then, while on our dinosaur-hunting trip recently, the pain came back and refused to go away. So the surgeon and I decided it was time to give the gall bladder the old heave-ho. And fix the hernia.
(Dear reader, does this sound like I'm whining? Sick all the time? Complaining about my misfortune? I certainly hope not. Because I consider myself to be extremely fortunate -- to be as healthy as I am, to have such excellent docs to look after me, and most importantly to have a spouse who takes such loving care of me when I can't look after myself.)
Now here is where the naivete comes in: having survived (successfully, it would seem...) a battery of treatments for a potentially lethal cancer, I assumed that a single operation to correct a non-life-threatening condition would be a piece of cake. Just one operation? Geez, let's schedule a volleyball game next day! Overnight stay? Okay, if you insist.
The hospital overnight stay was a breeze. I managed somehow to rate a single room in the hospital. No idea how that happened. And during the night, if the nurses came in to take my blood pressure and pulse -- but saw I was sleeping soundly -- they left me alone! When I got up in the middle of the night, which I had to do several times, I made this up to the nurses by walking up to their station and having my pressure and pulse taken there. They seemed to appreciate that. And I had been told that walking was good for me.
The next day, Deb drove me home.
Oh boy. I managed to completely ignore the available documents about not driving a car for a week afterwards, staying out of work for a similar amount of time, no heavy lifting, and on and on. And while I was in the hospital, the nurses kept asking me if I wanted some pain medication. (Hmmpf. Got a lot of sissies around here, I guess...)
Since I got home, I've done essentially doodly squat except sleeping and reading. The pain for doing almost anything was really tough -- and I didn't know whether doing anything would jeopardize the healing process. On the Friday and Saturday, I couldn't bend at the waist, couldn't open or close a window, couldn't pick something up off the floor, had no interest in food, and it took considerable time for me to lie down in bed or roll over or sit back up. Deb found several websites that described how one normally feels after gall bladder surgery, and it was all there in black-and-white: this is normal and you should have expected this.
On Sunday, as the wind and rain from Hurricane Irene gradually faded, the pain gradually decreased as well. I'm much better -- but that volleyball game is going to have to wait.
Months ago, I had a severe pain in my lower right abdomen which I was sure was appendicitis. And my family doc agreed it likely was, but before someone went merrily slashing away at my tummy, she thought it would make sense to get a CT scan of the area first. Turns out that my appendix was perfectly fine, thank you, but the scan showed there was some "sludge" located in my gall bladder. As I understand it, this sludge is like having a bunch of tiny gallstones.
The pain went away, but my surgeon told me that sooner or later, the gall bladder would have to be removed. And while he was working in that area, he said he could repair the hernia located just under my ribcage. (I was tempted to ask him if he could change the oil and check the sparkplugs while he was in there, but decided not to...)
He said there was no immediate need to have the surgery, since the pain had completely gone, but that having the sludge discharge into the rest of the digestive tract (which was likely to happen sooner or later) would complicate the medical picture considerably.
Then, while on our dinosaur-hunting trip recently, the pain came back and refused to go away. So the surgeon and I decided it was time to give the gall bladder the old heave-ho. And fix the hernia.
(Dear reader, does this sound like I'm whining? Sick all the time? Complaining about my misfortune? I certainly hope not. Because I consider myself to be extremely fortunate -- to be as healthy as I am, to have such excellent docs to look after me, and most importantly to have a spouse who takes such loving care of me when I can't look after myself.)
Now here is where the naivete comes in: having survived (successfully, it would seem...) a battery of treatments for a potentially lethal cancer, I assumed that a single operation to correct a non-life-threatening condition would be a piece of cake. Just one operation? Geez, let's schedule a volleyball game next day! Overnight stay? Okay, if you insist.
The hospital overnight stay was a breeze. I managed somehow to rate a single room in the hospital. No idea how that happened. And during the night, if the nurses came in to take my blood pressure and pulse -- but saw I was sleeping soundly -- they left me alone! When I got up in the middle of the night, which I had to do several times, I made this up to the nurses by walking up to their station and having my pressure and pulse taken there. They seemed to appreciate that. And I had been told that walking was good for me.
The next day, Deb drove me home.
Oh boy. I managed to completely ignore the available documents about not driving a car for a week afterwards, staying out of work for a similar amount of time, no heavy lifting, and on and on. And while I was in the hospital, the nurses kept asking me if I wanted some pain medication. (Hmmpf. Got a lot of sissies around here, I guess...)
Since I got home, I've done essentially doodly squat except sleeping and reading. The pain for doing almost anything was really tough -- and I didn't know whether doing anything would jeopardize the healing process. On the Friday and Saturday, I couldn't bend at the waist, couldn't open or close a window, couldn't pick something up off the floor, had no interest in food, and it took considerable time for me to lie down in bed or roll over or sit back up. Deb found several websites that described how one normally feels after gall bladder surgery, and it was all there in black-and-white: this is normal and you should have expected this.
On Sunday, as the wind and rain from Hurricane Irene gradually faded, the pain gradually decreased as well. I'm much better -- but that volleyball game is going to have to wait.
Sunday, August 14, 2011
The Smell of the Sage -- Part 2 -- Revised and Expanded!
During the summer of my treatments two years ago (that is, the surgeries, the chemo, and the radiation), neither trip was possible. Hey, for several months back then, I couldn't walk around the block, much less hike the badlands of Alberta or drive 14 hours to South Carolina. In truth, I spent most of the time between doctors' visits at home either sleeping or reading -- while lying down.
Last year, the first year after my treatments, I did drive to South Carolina for a week of golfing, this time with a good friend since my brother couldn't make the trip. And while the trip was certainly enjoyable -- for the golf; the food; and most of all, the companionship, the drive itself resulted in a deep-vein blood clot in my leg that, I was told later, might have killed me. (This was Serious Deep-Vein Blood Clot #2 for me, in case you're counting.) The event put me back on blood thinners for another six months.
And my being on blood thinners made dinosaur work out of the question. Because falling down hard in the Albert badlands (which happens occasionally) could result in uncontrolled bleeding and a major medical emergency. (Since the badlands are hours away from any medical treatment.) So my being part of the dino hunting team would have made me far more a risk to the program than a dependable asset.
But in April of this year (the time of my last posting) the golf trip and/or the dinosaur work were possibilities again. But if I couldn't be comfortable making these trips this year, would I ever be comfortable doing either one of them again? If I decided not to do either or both of the trips, would those decisions be based on sensible caution -- or would the be rooted in unreasoned and unreasonable fear?
I had been long off blood thinners by this time, which reduced or eliminated the chance of uncontrolled bleeding, but it reintroduced the chance of a blood clot if I remained stationary in a car or airplane seat for any length of time. I told my chemo doc about my "no more clot" plans, including wearing compression stockings every waking moment, a liberal ingestion of baby aspirin, letting my brother drive occasionally on our golf trip while I propped my legs up on the car's dashboard, and stopping every two hours or so for a vigorous game of Frisbee (to get the blood pumping). The doc was not impressed with my ideas and wouldn't give me an okay to travel.
I "labored" (a Quaker term, I think) with the decision to go or stay home for a month or two and finally decided that the sensible precautions listed above would effectively minimize any potential risks of clotting for both trips. And that not taking whatever risks remained would be capitulating to fear.
Okay. Green lights! Let's go!!
The Golf
First of all, please understand that, based on the experience of our previous golfing outings, Warren and I knew this trip would have a profound healing effect on both of us -- individually and as siblings. So this trip was a little bit about golf and a lot about self realization and self fulfillment. It wasn't just chasing a little white ball across a big green lawn.
Warren's driving habits (car driving, that is) turned out to mirror mine exactly and I quickly became perfectly comfortable to let him drive as much as he wanted. Just keep it under 80, please. And we timed our departure (i.e., 4:00 AM) nicely so that we missed almost all of the craziness of the Washington Beltway rush hour, and pulled into Santee South Carolina at a reasonable hour. Nice dinner, early to bed.
A special component of our trip involved Warren's son Spike, who had recently joined the Navy. He was stationed in Charleston, SC, which was an hour's drive from where we were staying. (How's that for "way opening"?) Now this was Spike's first time away from home, and he had been in Charleston for several months. So Warren was understandably concerned about his physical and mental well-being.
Knowing this, we had arranged our timing so that we had golf on Wednesday through Friday, and then spend Saturday and Sunday with Spike in Charleston, then finish up the golf on Monday and Tuesday the following week.
It turned out that Spike was perfectly fine and well adjusted to Navy life. Not the slightest hint of "Dad, take me home, please!!" And Warren could take such a happy report home to his wife and two daughters that Spike is fine and has become a Young Man to be Proud Of. (Not that there was much doubt on the issue, but, well, you know...)
There's lots more to the story, including superhero movies, an intoxicating afternoon of birdwatching, and alligators on the golf course. And I would be delighted to tell you more when I see you next.
The Dinosaur Hunt
Dr. Brinkman, who runs our dino hunting program, has a handful of volunteers that he collects at Dinosaur Provincial Park every summer. This typically includes a wonderful young lady from Australia, a charming couple from North Dakota (he's a surgeon, she's a nurse) several folks local to the Park, and Debbie and me. Other museum personnel and/or graduate students are often in on the fun as well.
But nobody I know calls him "Dr. Brinkman." In fact, I'm not sure he would respond to the title. So it's "Don." But I wanted you to know that he's got the PhD...
So Deb and I hadn't seen our dino friends in two years -- and it was deeply gratifying to me to learn that several of them had been following this blog and knew the stories that get told here. And I felt strongly that they were sharing in my commitment to reclaim this important part of my life.
During the prospecting phases of our work over the two weeks we were there, Deb and I found some really nice Hadrosaur (duck-billed dinosaur) pieces, including a maxilla (upper jaw bone), ilium (one of the three hip bones), and a tibia (one of the lower leg bones). Each was found in a different location, but each was (at least we thought!) "museum quality," the museum had several of each of these bones in excellent condition, and therefore had no scientific value for them. So they were left to erode back into the minerals from which they were made. Dust to dust.
We also found some nice teeth (from both plant- and meat-eating animals) and vertebrae, but once again, of no scientific value to the museum. Ah well.
But other members of our team found important fossils tht did need collecting, and Deb and I were part of the "did 'em out of the ground, cover 'em with plaster field jackets, and get 'em back to the truck" team. So we contributed in a meaningful way to the success of the two weeks we were there.
Oh! And this is where "the smell of the sage" comes in.
Imagine this, if you will:
It's afternoon, and you've been walking most of the day through the badlands of Dinosaur Provincial Park. You haven't found anything of "scientific value" all day, and your socks are rubbing your feet the wrong way, possibly raising a blister. Which, of course, you won't know until you get back to camp. It's getting warmer, the sun is too bright and there's not a breath of wind. And certainly no shade anywhere.
You're tired and you want to call it a day.
Because you're tired, you're making unwise decisions about ascending and descending the dozens of hills that comprise the badlands (see photo) -- coming close to slipping and falling down a 20- or 30-foot slope covered with very unhospitable-looking rocks. Your pack is feeling heavier by the minute and your drinking water supply is now warm and unpleasant tasting. And the bottle has slipped to the bottom of your pack, making it difficult to retrieve.
Right now, you're walking through a patch of tall green plants (revisit photo), which are a favorite haunt of rattlesnakes. So you're listening carefully for a warning rattle emerging from somewhere down around your feet -- hoping that you can react in time if the sound appears. (Rattle on the left? Move to the right! Rattle in front of you? Stop, then walk back to a safe distance! and so on...)
And, inexcusably, you start to feel a bit sorry for yourself.
Then, without the slightest warning, you are immersed in the aroma of wild sage. Which, in case you've never had the pleasure, is such a clean, invigorating scent that you feel completely remade in a matter of moments. And the scent brings a message that "All is well. All is well."
The Smell of the Sage -- Part 1
Well, well, well... It's been months since my last entry. April 26th to be exact. But it hasn't been for lack of interest that I haven't posted. And it hasn't been for lack of things to tell you. Many times I've said to myself "Geez, I want to post this!" and had the moment evaporate. So it's just been that I've been busy living: settling back into who I was and discovering who I've become.
I don't want to sit here at the computer and tell you trivial things: "I washed my car and it looks real nice." or whatever. You're busy too, and I don't want to waste your time. Or trivialize the blog.
But it's finally come to pass that I have a significant stretch of uncommitted time early in the morning (which is when I like to write here), and I want to catch you up on some important developments. This blog entry is all about my medical condition. The next one will be an update on the fun stuff.
Of foremost importance, the scans and X-rays I've had my last postings about The Long, Strange Trip have been negative. That's the good answer: Positive = bad. Negative = good.
The "nose-to-toes" PET scan on April 6th was, as reported previously, completely clear.
The follow-up CT scan to the two-spots-in-my-lungs issue took place on July 19th, and it showed that the spots had disappeared completely. So they weren't tumors, weren't aspirated food, but probably just a touch of pneumonia. But whatever the cause, it's in the rear-view mirror now.
I've had some puzzling pains in my upper abdomen, and am scheduled for surgery on Thursday the 25th. My doc tells me it should be straightforward and include an overnight stay in the hospital. And the recovery should be quick. He's the same guy that did the food tube work with me, and I feel completely confident in what he says.
A puzzling thing has happened to my teeth. I've gone maybe 40 years without a cavity, and a recent visit to a new dentist disclosed cavities on 18 teeth. Serious brown patches at the base of the teeth. Serious erosion at the root level. And (surprise!) all of those teeth are either in front of my mouth or on the side of my face that got all the radiation. I have an appointment with my radiation doc on Monday and hope to get some clarity on what's going on and what I have to look forward to.
One of the cavities went all the way to the pulp of the tooth, which, my dentist tells me, means a 50/50 chance for a root canal job in several months. We'll see. If there's a root canal job needed and if it's not successful, then the tooth would have to be pulled. And, due to the residual effect of the radiation, that would likely mean losing all the teeth in that row. (Something called "necrosis" sets in...)
This gives me, of course, the opportunity to be angry at my previous dentist for not having found these condidtions months ago and anxious about the future of my mouth. Self-righteous indignation -- ah, feels so good!
And it's ever so important, then, to walk quietly away from such indignation, re-focus on the here and now, and be profoundly grateful for all the good health that I have.
Whew! Now that we've got that all out of the way, let me tell you about a few of the good things that have happened to me in the last 3.5 months! "The Smell of the Sage -- Part 2" coming up next!
I don't want to sit here at the computer and tell you trivial things: "I washed my car and it looks real nice." or whatever. You're busy too, and I don't want to waste your time. Or trivialize the blog.
But it's finally come to pass that I have a significant stretch of uncommitted time early in the morning (which is when I like to write here), and I want to catch you up on some important developments. This blog entry is all about my medical condition. The next one will be an update on the fun stuff.
Of foremost importance, the scans and X-rays I've had my last postings about The Long, Strange Trip have been negative. That's the good answer: Positive = bad. Negative = good.
The "nose-to-toes" PET scan on April 6th was, as reported previously, completely clear.
The follow-up CT scan to the two-spots-in-my-lungs issue took place on July 19th, and it showed that the spots had disappeared completely. So they weren't tumors, weren't aspirated food, but probably just a touch of pneumonia. But whatever the cause, it's in the rear-view mirror now.
I've had some puzzling pains in my upper abdomen, and am scheduled for surgery on Thursday the 25th. My doc tells me it should be straightforward and include an overnight stay in the hospital. And the recovery should be quick. He's the same guy that did the food tube work with me, and I feel completely confident in what he says.
A puzzling thing has happened to my teeth. I've gone maybe 40 years without a cavity, and a recent visit to a new dentist disclosed cavities on 18 teeth. Serious brown patches at the base of the teeth. Serious erosion at the root level. And (surprise!) all of those teeth are either in front of my mouth or on the side of my face that got all the radiation. I have an appointment with my radiation doc on Monday and hope to get some clarity on what's going on and what I have to look forward to.
One of the cavities went all the way to the pulp of the tooth, which, my dentist tells me, means a 50/50 chance for a root canal job in several months. We'll see. If there's a root canal job needed and if it's not successful, then the tooth would have to be pulled. And, due to the residual effect of the radiation, that would likely mean losing all the teeth in that row. (Something called "necrosis" sets in...)
This gives me, of course, the opportunity to be angry at my previous dentist for not having found these condidtions months ago and anxious about the future of my mouth. Self-righteous indignation -- ah, feels so good!
And it's ever so important, then, to walk quietly away from such indignation, re-focus on the here and now, and be profoundly grateful for all the good health that I have.
Whew! Now that we've got that all out of the way, let me tell you about a few of the good things that have happened to me in the last 3.5 months! "The Smell of the Sage -- Part 2" coming up next!
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