Writing this stuff down has brought back some incredible memories. There is a "fog" element to the treatment and I sometimes wonder if I have mentally hidden some things or if they have always just been sitting there in the mist. This entry was supposed to be the start of treatment but as I was mentally writing it in the shower this morning I remembered a few things worth mentioning that occured about this time in the chronology.
If you or someone you know has recently been diagnosed and you are reading this, I would like to offer some advice based on my experience:
Number 1: Stay off the freaking internet. Yes, there is a ton of accurate information that is helpful. The problem is, if you have questions about your illness or your treatment the web is more than willing to answer them for you. It may not be the right answer..but an answer nonetheless. Seriously, take cancer out of the equation and on any random day get on a WebMD flow chart thingy and five minutes later you can determine you either have Ebola or you are pregnant. Once again, there IS helpful information there but if there are any gray areas or "what if's" you can fill them in with incorrect data. This is a HUGE deal if you (or the person you are helping) are in the middle of a cancer fight because a positive, fighting attitude is absolutely essential to success. Reading stuff that scares you or makes you feel like you can't make it is DANGEROUS.
Number 2: Okay, if you are gonna get on the internet anyway, read intelligently! In my case, the vast vast majority of people with base of the tongue SCC were tobacco users (smoked or chewed) or alcohol abusers. I was neither. This is very important. Before I learned lesson Number 1 above, I read blogs, message boards, etc. for hours and hours and what I read scared me to death (See Number 3 below). I would find out 6 weeks later that even though we had the same cancer, we had very little in common. All of the statistical data for my cancer were based on that (smokers/drinkers) pool of people. I am an anomoly. Unfortunately, the number of people like me (non-smoker/dipper, etc.) is growing but for now there is not a large enough pool for me to have found anyone writing specifically on what my experience was going to be like.
Number 3: Very few happy people talk or write about their experience. Ok, we are talking about cancer so happy was reaching a bit. What I am trying to say is there are varying levels of "suck". I read a blog from a poor guy with my bug who spoke of relentless, constant pain and he was writing post-treatment. That was the kind of thing I read that had an immediate impact on my psyche and, had my wife not figuratively slapped me around a bit, could have negatively impacted my fight. The thing is I truly believe that was the writer's experience; that is what he was going through. He wasn't making it up. And now I have an experience that is nothing like his. Whether it was my physical condition or that I didn't have the behavioural stuff, I was never the sickest guy in the room. Oh, it did suck but most of the time it just wasn't that high on the suck meter.
Bottom line, if you are reading that stuff for yourself or a loved one keep in mind that not everyone suffers like the worst suffering you read about. Not everyone will have an "easy" go of it like I did. But some will.
Thursday, September 29, 2011
Tuesday, September 27, 2011
Let's do this
Now what do we do? Who do we tell?
My oldest son, Alex, who is living with us was first on the list. If to battle is where we are going, he would be by my side and that would be just fine with me. The twins are at school in Abilene and we talked at length about keeping it from them for a little while. They are problem solvers a lot like me and I could only imagine how I would feel if they had a problem I couldn't help them fix. We hoped to spare them those feelings for a while. My parents. My wife's parents. For better or worse, freaking Facebook made it impossible to control how the news was spread. It took on a life of it's own.
We soon received a phone call from the oncologist Dr. G had recommended and set up an appointment. Robin and I waited in the lobby of Las Colinas Cancer Center and noticed we were the youngest people there, and not by a little. I wasn't very nervous as i thumbed through a couple of copies of AARP Magazine and RV Monthly. When I finally got called back I was weighed and a simple health history was taken before meeting Dr. E. This guy needs no sound reinforcement. He talks LOUDLY. He also came off just a little cocky. I liked him right away.
I had spent years trying to teach my boys the difference, subtle though it may be, between confidence and cockiness. Cocky people had always just rubbed me the wrong way. It was weird that I felt comforted by Dr. E telling me so matter-of-factly that he knew how to kill this thing and that's what we were going to do, but I did.
Before I continue, I want to make something very clear. I will forever be in the debt of the fine folks at Las Colinas Cancer Center. There was not one person or one event that gives me even a moments pause in suggesting them to anyone I know who finds themselves in a similar position (God forbid!). I am about to talk about what seemed at the time to be mis-information or a lack of information given to me. I now have the luxury of hindsight and at every opportunity they gave me as much information as I could take in and process and no more. Whether accidental or on purpose, it was the proper call every time. These folks know what they are doing.
Dr. E described my cancer "Base of tongue squamous cell carcinoma that had metastasized to the lymph system on the right side of the neck". He told me a PET scan would be scheduled to get the remaining information required for staging the cancer. He introduced me to Dr. K who would be in charge of the radiation portion of my treatment. I was told this would consist of 7 weeks of radiation, 5 days a week. She told me pretty much what to expect such as fatigue, difficulty swallowing, loss of hair, burns on the skin. Dr. E said I would need a feeding tube as head/neck cancers are particularly difficult on the patient because of the damage to the throat. He also said in addition to the radiation therapy I would concurrently recieve chemotherapy. It was about this time I mentally checked out. I think they could tell. I left with an appointment to meet Doogie Houser, my chemo oncologist who is 16 years old. Not really, but he looks it.
At some point I may write about my dad. He and I spent a great deal of time estranged. He was a very interesting man. He was also a cancer survivor. Sometime in early March, we spoke about what lie ahead for me. He insisted I come to Houston and go to MD Anderson. That was very good advice but I had already decided to try my hardest to continue working through treatment. The rest of his advice I took to heart. I will paraphrase:
"There were two groups of people going through treatment with me. One group pulled their blankets up under their chin and curled up in a ball. Sometimes they sleep. Sometimes they cry. The other group cussed. Sometimes they cry. Most times they paced the room or spit on the floor. They were PISSED. Those people all left before the first group. This disease will beat you down and keep you down but only if you let it. If you get mad enough to fight, you WILL beat it."
Doogie spent a little time telling me about himself including an anecdote ending with a statement of extreme hatred for head/neck cancer. I like this guy, too. He layed out a few options as far as my treatment, a newer drug erbitux and a drug discovered in the 1800's cisplatin. I chose cisplatin. I started getting a little cocky, too. My dad was right. I will not just lay down for this thing. I AM pissed. I don't have time for this crap.
"I''m not doing the feeding tube thing."
Doogie smirks.
'My veins are awesome. Don't think I will be needing a port either."
Another smirk.
I had been cancer boy for less than two weeks and there I stood telling Doogie (who is brilliant, by the way) how this thing is going to play out. The fact he didn't bust out laughing speaks to his amazing amount of self control. What else could he say? "Ok."
My oldest son, Alex, who is living with us was first on the list. If to battle is where we are going, he would be by my side and that would be just fine with me. The twins are at school in Abilene and we talked at length about keeping it from them for a little while. They are problem solvers a lot like me and I could only imagine how I would feel if they had a problem I couldn't help them fix. We hoped to spare them those feelings for a while. My parents. My wife's parents. For better or worse, freaking Facebook made it impossible to control how the news was spread. It took on a life of it's own.
We soon received a phone call from the oncologist Dr. G had recommended and set up an appointment. Robin and I waited in the lobby of Las Colinas Cancer Center and noticed we were the youngest people there, and not by a little. I wasn't very nervous as i thumbed through a couple of copies of AARP Magazine and RV Monthly. When I finally got called back I was weighed and a simple health history was taken before meeting Dr. E. This guy needs no sound reinforcement. He talks LOUDLY. He also came off just a little cocky. I liked him right away.
I had spent years trying to teach my boys the difference, subtle though it may be, between confidence and cockiness. Cocky people had always just rubbed me the wrong way. It was weird that I felt comforted by Dr. E telling me so matter-of-factly that he knew how to kill this thing and that's what we were going to do, but I did.
Before I continue, I want to make something very clear. I will forever be in the debt of the fine folks at Las Colinas Cancer Center. There was not one person or one event that gives me even a moments pause in suggesting them to anyone I know who finds themselves in a similar position (God forbid!). I am about to talk about what seemed at the time to be mis-information or a lack of information given to me. I now have the luxury of hindsight and at every opportunity they gave me as much information as I could take in and process and no more. Whether accidental or on purpose, it was the proper call every time. These folks know what they are doing.
Dr. E described my cancer "Base of tongue squamous cell carcinoma that had metastasized to the lymph system on the right side of the neck". He told me a PET scan would be scheduled to get the remaining information required for staging the cancer. He introduced me to Dr. K who would be in charge of the radiation portion of my treatment. I was told this would consist of 7 weeks of radiation, 5 days a week. She told me pretty much what to expect such as fatigue, difficulty swallowing, loss of hair, burns on the skin. Dr. E said I would need a feeding tube as head/neck cancers are particularly difficult on the patient because of the damage to the throat. He also said in addition to the radiation therapy I would concurrently recieve chemotherapy. It was about this time I mentally checked out. I think they could tell. I left with an appointment to meet Doogie Houser, my chemo oncologist who is 16 years old. Not really, but he looks it.
At some point I may write about my dad. He and I spent a great deal of time estranged. He was a very interesting man. He was also a cancer survivor. Sometime in early March, we spoke about what lie ahead for me. He insisted I come to Houston and go to MD Anderson. That was very good advice but I had already decided to try my hardest to continue working through treatment. The rest of his advice I took to heart. I will paraphrase:
"There were two groups of people going through treatment with me. One group pulled their blankets up under their chin and curled up in a ball. Sometimes they sleep. Sometimes they cry. The other group cussed. Sometimes they cry. Most times they paced the room or spit on the floor. They were PISSED. Those people all left before the first group. This disease will beat you down and keep you down but only if you let it. If you get mad enough to fight, you WILL beat it."
Doogie spent a little time telling me about himself including an anecdote ending with a statement of extreme hatred for head/neck cancer. I like this guy, too. He layed out a few options as far as my treatment, a newer drug erbitux and a drug discovered in the 1800's cisplatin. I chose cisplatin. I started getting a little cocky, too. My dad was right. I will not just lay down for this thing. I AM pissed. I don't have time for this crap.
"I''m not doing the feeding tube thing."
Doogie smirks.
'My veins are awesome. Don't think I will be needing a port either."
Another smirk.
I had been cancer boy for less than two weeks and there I stood telling Doogie (who is brilliant, by the way) how this thing is going to play out. The fact he didn't bust out laughing speaks to his amazing amount of self control. What else could he say? "Ok."
Monday, September 26, 2011
I wish I had better news...
The doc put my sample and the dye under the microscope and looked for several seconds. Made another sample, put it under the scope and looked a little longer. Then he turned around and took off his gloves and said "I wish I had better news. I see squamous epithelials and they definitely do not belong there. That would mean squamous cell carcinoma. It is not a death sentence. You are going to beat it."
I could think of nothing to say but "thank you".
I am pretty sure we both made it to the car before I lost it. I never smoked even one cigarette. I have never tried dip even one time. I had a beer every now and then. I just ran a freaking half marathon! WTF? Yes, I said the 'F' word. Those of you that know me well know that for some reason in my 30's I developed an aversion to that word. I just don't use it EVER. Somehow, at that moment it seemed appropriate. I then said "I want a beer". We drove to Red Robin and sat outside, drank beer and cried.
The only other thing I remember saying is "This changes everything". That ended up being something I hit right on the head.
I could think of nothing to say but "thank you".
I am pretty sure we both made it to the car before I lost it. I never smoked even one cigarette. I have never tried dip even one time. I had a beer every now and then. I just ran a freaking half marathon! WTF? Yes, I said the 'F' word. Those of you that know me well know that for some reason in my 30's I developed an aversion to that word. I just don't use it EVER. Somehow, at that moment it seemed appropriate. I then said "I want a beer". We drove to Red Robin and sat outside, drank beer and cried.
The only other thing I remember saying is "This changes everything". That ended up being something I hit right on the head.
2011
With the half-marathon under our belt, what was the next "bucket list" item? I decided I wanted to run a full marathon. Robin didn't have any desire to run a full, but she used to be a competitive swimmer and was thinking real hard about a triathalon. She is such a badass.
I picked my training intensity up and tried to continue shaving seconds off my time. I was also losing weight but still didn't worry because of the mileage I was running. However, the lymph node was still around and if I was being perfectly honest the little voice in my head had been telling me there was something else to it since before the White Rock. I called my GP, Dr. T.
That is huge, by the way. I used to joke that the only way I go to the doctor is in an ambulance. Like I said, I knew there was something wrong. He took blood for a full workup. He touched the lymph node in my neck one time and told me I needed to see an ENT. I think I had to wait a little over a week to get in. Before the ENT appointment I received my bloodwork in the mail. No bad news there (sigh of relief). I also went to a dermatologist with a "thing" by my eye that had me worried. He says "Oh that is nothing" and freezes it off my face. The good news is just rolling in.
Met my ENT, Dr. G (who I am nominating for sainthood). Dr. G. touched the lymph node in my neck one time and told me I needed a CT scan with contrast. At this point I am still not freaking out. We will just find the sinus infection and kill it, maybe sinus surgery, who knows. Had my first CT which is kind of cool. Did NOT enjoy the contrast. No headaches or anything, just didn't care for the sensation. Next appointment with Dr. G was the following week when the imaging was back.
Met with Dr. G again. He took Robin and I to his PC and fired up my imaging. Sure enough, I had several pockets of gunk in my sinuses that had been causing me problems and needed to be cleaned out. Then he said, "Now why don't we sit down and talk about your tongue."
That was when the good news stopped.
He saw a "thickening" in the base of my tongue that concerned him. He wanted me to go to the hospital. Now. I then heard him walk into the hallway and make a cell phone call. He had called a friend who happens to be a pathologist at a local hospital and told him he was sending a guy over for a fine needle biopsy of a neck lymph node. He told him to read the results to to the guy right then, don't make him wait.
Robin and I got in my truck and just sat there silent. This is not good. But let's not freak out until we know exactly what we are dealing with. I don't remember the drive to the hospital. While I don't remember waiting in the lobby at the hospital, I do remember it seemed like hours. I finally get called back and the doc describes what he is going to do. I remember thinking it didn't really hurt as bad as I thought it would. He brought in a microscope and mixed the sample with some dye.
I picked my training intensity up and tried to continue shaving seconds off my time. I was also losing weight but still didn't worry because of the mileage I was running. However, the lymph node was still around and if I was being perfectly honest the little voice in my head had been telling me there was something else to it since before the White Rock. I called my GP, Dr. T.
That is huge, by the way. I used to joke that the only way I go to the doctor is in an ambulance. Like I said, I knew there was something wrong. He took blood for a full workup. He touched the lymph node in my neck one time and told me I needed to see an ENT. I think I had to wait a little over a week to get in. Before the ENT appointment I received my bloodwork in the mail. No bad news there (sigh of relief). I also went to a dermatologist with a "thing" by my eye that had me worried. He says "Oh that is nothing" and freezes it off my face. The good news is just rolling in.
Met my ENT, Dr. G (who I am nominating for sainthood). Dr. G. touched the lymph node in my neck one time and told me I needed a CT scan with contrast. At this point I am still not freaking out. We will just find the sinus infection and kill it, maybe sinus surgery, who knows. Had my first CT which is kind of cool. Did NOT enjoy the contrast. No headaches or anything, just didn't care for the sensation. Next appointment with Dr. G was the following week when the imaging was back.
Met with Dr. G again. He took Robin and I to his PC and fired up my imaging. Sure enough, I had several pockets of gunk in my sinuses that had been causing me problems and needed to be cleaned out. Then he said, "Now why don't we sit down and talk about your tongue."
That was when the good news stopped.
He saw a "thickening" in the base of my tongue that concerned him. He wanted me to go to the hospital. Now. I then heard him walk into the hallway and make a cell phone call. He had called a friend who happens to be a pathologist at a local hospital and told him he was sending a guy over for a fine needle biopsy of a neck lymph node. He told him to read the results to to the guy right then, don't make him wait.
Robin and I got in my truck and just sat there silent. This is not good. But let's not freak out until we know exactly what we are dealing with. I don't remember the drive to the hospital. While I don't remember waiting in the lobby at the hospital, I do remember it seemed like hours. I finally get called back and the doc describes what he is going to do. I remember thinking it didn't really hurt as bad as I thought it would. He brought in a microscope and mixed the sample with some dye.
2010
After the 300 lb. thing, I was happy to just leave things the way they were. That is very unlike me. I have a tendency to go overboard with things like I have with paintball....and fishing....and guitar. For whatever reason, even though I continued to lift I never max'ed again.
One day in early '10, the wife and I got out of the car at the gym and she says "You know what I want for my birthday?". I have to stop here for a minute. Only men will completely understand what a gift from God that sentence is. We all wish for crazy things but to be told what our wife/girlfriend really wants for her birthday, we don't dare dream it! On top of that, it was one of her "divisible by 10" birthdays. I get goosebumps.
"I want to run a half-marathon."
First off, had I listed 100 guesses I would have been wrong. Second, if that is what she has decided it was as good as done. Among her traits that I admire most are her tenacity and focus. Like I said, if that was what she decided to do then that was that. We bought a book on running marathons and began following the training plan. I had suddenly become one of those guys at the gym that doesn't know what they are doing and I was "helping" her. I immediately noticed the additional pounds I had put on from lifting and over the next several months also discovered they don't come off easy. The race she had chosen was the White Rock in Dallas in early December near both our birthdays. I will forever treasure the time we spent training together almost as much as the race itself.
Sometime around September I noticed the lymph node on the right side of my neck was a little swollen and hard. I also had a sinus infection. I know how to deal with that: a week of over-the-counter meds and viola! I was running my daily 7 mile routine and starting to see improvements in my times. I don't remember how much time passed (2 months?) but for whatever reason I touched my neck and the node had come back. Actually, it had probably never been gone.
Very shortly after that, I had another head cold which I assumed was the same infection from before and I just hadn't knocked it out. Called the wife (she's a dental hygienist) and had her bring home some antibiotics. (I know, I know...). I also noticed I was starting to drop some weight. With the pace of our training it certainly made sense and didn't throw up any red flags.
Next thing you know it's December and we are right on track training wise. Robin and I finished our half marathon (along with Elliott). I was so proud of her and Elliott. They had both worked so hard for so long and it showed on race day.
One day in early '10, the wife and I got out of the car at the gym and she says "You know what I want for my birthday?". I have to stop here for a minute. Only men will completely understand what a gift from God that sentence is. We all wish for crazy things but to be told what our wife/girlfriend really wants for her birthday, we don't dare dream it! On top of that, it was one of her "divisible by 10" birthdays. I get goosebumps.
"I want to run a half-marathon."
First off, had I listed 100 guesses I would have been wrong. Second, if that is what she has decided it was as good as done. Among her traits that I admire most are her tenacity and focus. Like I said, if that was what she decided to do then that was that. We bought a book on running marathons and began following the training plan. I had suddenly become one of those guys at the gym that doesn't know what they are doing and I was "helping" her. I immediately noticed the additional pounds I had put on from lifting and over the next several months also discovered they don't come off easy. The race she had chosen was the White Rock in Dallas in early December near both our birthdays. I will forever treasure the time we spent training together almost as much as the race itself.
Sometime around September I noticed the lymph node on the right side of my neck was a little swollen and hard. I also had a sinus infection. I know how to deal with that: a week of over-the-counter meds and viola! I was running my daily 7 mile routine and starting to see improvements in my times. I don't remember how much time passed (2 months?) but for whatever reason I touched my neck and the node had come back. Actually, it had probably never been gone.
Very shortly after that, I had another head cold which I assumed was the same infection from before and I just hadn't knocked it out. Called the wife (she's a dental hygienist) and had her bring home some antibiotics. (I know, I know...). I also noticed I was starting to drop some weight. With the pace of our training it certainly made sense and didn't throw up any red flags.
Next thing you know it's December and we are right on track training wise. Robin and I finished our half marathon (along with Elliott). I was so proud of her and Elliott. They had both worked so hard for so long and it showed on race day.
It's a really nice place to start..
I have promised several people a book and that is obviously NOT happening. So... a blog it is.
This has been an interesting year. That sums it up nicely yet that alone would be a waste of a blogging account and the cool URL. In many ways, this year started three years ago. It was about '08 that I decided to get serious about getting in shape. I was running full court basketball at the 24 Hr. and lifting weights when my mood was right (when the youngsters wouldn't let me play). Looking back, I may have been in the best shape of my adult life. My diet was, on the whole, pretty good. I had my weaknesses but was doing fairly well at keeping everything in line with the "in moderation" rule. One day at the gym, one of my twins (Nick or Elliott) asked "What is your max on the benchpress?" I honestly didn't know as I had not performed a single rep max since I started lifting. "Well, There's no time like the present...".
With their help spotting, I did 3 single rep lifts of progressively higher weight before tiring. "I think you can do 300" one of them said. I said something about that being a ridiculous amount of weight for me and that it was simply not possible. Several minutes later, a deal was struck. At the end of the summer, before they returned to class, I would attempt a single rep at 300 pounds. For the remainder of the summer, I became much more consistent in my workouts. I spoke about workouts with guys at the gym who knew what they were doing and dozens who didn't. I began supplementing with pre, during and post-workout mixes, pills and drinks. The sales guy at Vitamin Shoppe (who now sends me Christmas cards) and I became friends. Not surprisingly, I also began to gain weight. A lot of it.
As the time drew near, I thought about what would happen if I couldn't do it. It would be OK if I failed...as long as I *barely* failed. I didn't want to let the boys down so it was going to be my best effort, 110% percent and every other cliche I could think of. When the day arrived, I don't remember driving to the gym but I do remember wearing a sheepish grin as I did the "dead man walking" shuffle to the bench. We put on the plates, I added the weights 2 times to make sure it was right (either way, I was doing this ONCE). I remember not really having a plan. I mean it's just lifting weights, what is there to plan for. We counted up to 3, I un-racked the bar and immediately realized I needed a plan. Now. I had lifted close to this weight once before but the few additional pounds took it to a whole new level. I dropped the bar to my chest and neither of my sons touched it. I remember wondering if they were even concerned for my safety. I pressed it out, racked the weight and lay there a moment to make sure it was real.
I tried to remember another time in my life when I had set a goal that far in the future and worked every day towards it. Couldn't remember one. It was a life changing moment and I never want to do it again.
This has been an interesting year. That sums it up nicely yet that alone would be a waste of a blogging account and the cool URL. In many ways, this year started three years ago. It was about '08 that I decided to get serious about getting in shape. I was running full court basketball at the 24 Hr. and lifting weights when my mood was right (when the youngsters wouldn't let me play). Looking back, I may have been in the best shape of my adult life. My diet was, on the whole, pretty good. I had my weaknesses but was doing fairly well at keeping everything in line with the "in moderation" rule. One day at the gym, one of my twins (Nick or Elliott) asked "What is your max on the benchpress?" I honestly didn't know as I had not performed a single rep max since I started lifting. "Well, There's no time like the present...".
With their help spotting, I did 3 single rep lifts of progressively higher weight before tiring. "I think you can do 300" one of them said. I said something about that being a ridiculous amount of weight for me and that it was simply not possible. Several minutes later, a deal was struck. At the end of the summer, before they returned to class, I would attempt a single rep at 300 pounds. For the remainder of the summer, I became much more consistent in my workouts. I spoke about workouts with guys at the gym who knew what they were doing and dozens who didn't. I began supplementing with pre, during and post-workout mixes, pills and drinks. The sales guy at Vitamin Shoppe (who now sends me Christmas cards) and I became friends. Not surprisingly, I also began to gain weight. A lot of it.
As the time drew near, I thought about what would happen if I couldn't do it. It would be OK if I failed...as long as I *barely* failed. I didn't want to let the boys down so it was going to be my best effort, 110% percent and every other cliche I could think of. When the day arrived, I don't remember driving to the gym but I do remember wearing a sheepish grin as I did the "dead man walking" shuffle to the bench. We put on the plates, I added the weights 2 times to make sure it was right (either way, I was doing this ONCE). I remember not really having a plan. I mean it's just lifting weights, what is there to plan for. We counted up to 3, I un-racked the bar and immediately realized I needed a plan. Now. I had lifted close to this weight once before but the few additional pounds took it to a whole new level. I dropped the bar to my chest and neither of my sons touched it. I remember wondering if they were even concerned for my safety. I pressed it out, racked the weight and lay there a moment to make sure it was real.
I tried to remember another time in my life when I had set a goal that far in the future and worked every day towards it. Couldn't remember one. It was a life changing moment and I never want to do it again.
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