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)
Tuesday, January 27, 2009
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)
Subscribe to:
Posts (Atom)
