I had already been through about 30 radiation treatments so I was VERY good at timing the process. I could tell when the techs were talking instead of working or when something came up they had to take care of for a moment. A treatment probably took around 12 minutes or so. I think I could probably "feel" a minutes difference and know something happened. It is also a mechanical device so there were sounds and motions that happened in a certain order at a certain timing. Any changes in that process was an immediate red flag. Two particular instances stand out.
Something bad was happening to the machine starting somewhere around treatment 30. After the two x-rays and my table was aligned, i was supposed to hear the arm that does the radiation turn completely around my head three times. Then one day, the arm went about 15 degrees around my head and stopped. Then went 15 degrees more...and stopped. This continued for all three revolutions. Obviously, this came close to doubling the amount of time I was on the table. I wanted answers. There was something wrong with the software that controls the machine and the tech had to manually control the aperature per my treatment plan.
The technology this machine uses is called IMRT (Intensity Modulated Radiation Therapy). Back in the day, the "gun" just blasted away as it rotated around the patient. I don't think there were many options, that was all they had then. IMRT controls not only the strength of the beam but the size as it rotates not only keeping the beam on the area to be treated but, as best it can, avoids collateral damage to anything else that might be in the area like my thyroid. I know people who had the old-school treatment and they are blown away by how much better I did because of IMRT. Well, the software that controls the beam size and strength was acting up so my techs were manually operating the machine. As I said, these guys know what they are doing.
All of this builds up to the day, it was a Friday, that I got roughly one and a half revolutions and everything stopped. I drummed my fingers on my chest which was my signal to the techs to get the show on the road. A minute or so later I heard the door open and they let me off the table. "The machine is down.". Even in my current mental and physical state, I asked the most pertinent question: "That treatment counts towards my 40. Right?". They would have to check with Dr. K. Well, then I already know the answer. Sure enough, I show up Monday and was told they added another day to the end of my treatment. There was a very stormy day during this period when the machine was down when I got there and they just sent me home instead of trying to get it done. Add that day to the end, too. That made my last treatment fall on May 13. Friday the 13th.
The other memorable event during this period of the treatment involved my mask. Earlier, when I described how the mask was made I said it was so tight I could not open my mouth or eyes. I had started noticing that I could easily open my eyes and could have watched the machine do it's work if I wanted to. I do remember being told that was not a good idea. One day, the regular procedure stopped and I knew something was up. I heard the door open and both techs came in and messed with the bolts that hold the mask to the table. They were all properly secured. I could hear them talking back and forth trying to figure out what was causing the problem. They took the mask off momentarily and told me to lie very still. I looked around and was blown away! I had never felt movement in the "up" direction but the table was close to five feet in the air and they were afraid I would roll off or fall if I sat up. Very freaky! Several more minutes of messing with me and the mask and they finished the treatment.
When I got up to leave they told me what was wrong. I had lost so much weight that even my face had shrunk to the point that I needed a new mask. At that point I had enough experience with the mask that making another one was no big deal.
Sunday, October 30, 2011
Wednesday, October 26, 2011
The Plot Thickens
I have said throughout this blog that I had an easy go of it comparitively speaking but the period after my second chemo is when things started getting interesting.
On my very first meeting with Dr. E (the loud guy), I had come straight from work meaning I was wearing steel toed boots. I am in a field that requires me to carry tools and frequently climb ladders and such. Over time I have discovered that cargo pants, in addition to being very geeky, are great ways to take a few tools up a ladder without taking the entire, heavy tool bag. In this case, I don't mind losing a very large number of style points for the convenience. I also discovered it was a great way to cheat on my weigh-ins. As I continued to lose weight and have greater difficulty getting calories down I was getting dangerously close to being forced into the stomach tube thing. I made sure I never weighed in without the steel toes and the cargo pants.
It started with leaving the cell phone (the biggest droid made), wallet, keys, and loose change in my pockets for weigh-in. As the last weeks passed I would make sure whatever I had in my hands found it's way into my cargo pants pocket. "Oh I forgot to leave this book in the truck. Guess I will just stick it in my pocket." I remember one day Deb let me know she was aware of what I was doing and while she wasn't going to stop me she also wasn't going to let me endanger myself. That means I needed to keep doing my absolute best to consume calories and not go below the "redline" of 30 lbs lost.
The next challenge was my voice. It had become at best a raspy, whisper thing and some days I had no voice at all. I don't remember being told about that. I don't remember asking about it either. I also wasn't surprised. Looking at my neck in it's present state made me cringe when I thought about what was going on in my throat. Yuck. Cindy, Robin's sister, was driving me to treatment often because I was on the fentenyl patches and couldn't drive myself. She wasn't very familiar with the area so I pointed and grunted her to the treatment center. Saint Beck and my mom received the same type of directions. It was only sort of funny.
Now for the what was certainly in the Top Five Worst Moments of the ordeal. When I had my original meeting with Dr. E and Dr. K, they had told me the treatment plan consisted of 7 weeks of radiation and 3 chemos. One Thursday after the second chemo, I mentioned how many radiation treatments I had left to Dr K. She flips through the file and says, "No, forty treatments takes you until May 11". Ok I was not in the best of shape by now but I quickly checked my math:
7 weeks * 5 days/week = 35 treatments
My math was correct so where did the number 40 come from? "Well, the seven weeks is broad spectrum radiation from the jaw line to the collar bone to include the lymph nodes. The eighth week is a "boost dose" targeted at the primary tumor site." This had never been mentioned to anyone until this day. Moving that circled day on the refrigerator calendar a week further away was one of the hardest things I had ever done. The next day I was having my blood draw for my labs and complained to T about the way the 7/8 week thing was handled. I was already in a bad mood so I thought I might as well go the distance. "No one ever told me what stage I was and I never asked. What stage am I?" T turned around and pulled up my file on the computer, read a few screens and then closed my file. "Why do you want to know, I mean what difference does it make?" I told her when people asked me I wanted to know what to tell them (it may have also been said with a smart-ass tone of voice). The tumor was 1.5 inches by 1 inch, had metastisized to the lymph system and involved 5 nodes on the left side of my neck and 3 on the right side. That made me Stage Four.
That little piece of info had absolutely no impact on me. At all. I didn't care for some reason. I knew in my heart I was winning and the cancer was losing no matter what stage it was.
On my very first meeting with Dr. E (the loud guy), I had come straight from work meaning I was wearing steel toed boots. I am in a field that requires me to carry tools and frequently climb ladders and such. Over time I have discovered that cargo pants, in addition to being very geeky, are great ways to take a few tools up a ladder without taking the entire, heavy tool bag. In this case, I don't mind losing a very large number of style points for the convenience. I also discovered it was a great way to cheat on my weigh-ins. As I continued to lose weight and have greater difficulty getting calories down I was getting dangerously close to being forced into the stomach tube thing. I made sure I never weighed in without the steel toes and the cargo pants.
It started with leaving the cell phone (the biggest droid made), wallet, keys, and loose change in my pockets for weigh-in. As the last weeks passed I would make sure whatever I had in my hands found it's way into my cargo pants pocket. "Oh I forgot to leave this book in the truck. Guess I will just stick it in my pocket." I remember one day Deb let me know she was aware of what I was doing and while she wasn't going to stop me she also wasn't going to let me endanger myself. That means I needed to keep doing my absolute best to consume calories and not go below the "redline" of 30 lbs lost.
The next challenge was my voice. It had become at best a raspy, whisper thing and some days I had no voice at all. I don't remember being told about that. I don't remember asking about it either. I also wasn't surprised. Looking at my neck in it's present state made me cringe when I thought about what was going on in my throat. Yuck. Cindy, Robin's sister, was driving me to treatment often because I was on the fentenyl patches and couldn't drive myself. She wasn't very familiar with the area so I pointed and grunted her to the treatment center. Saint Beck and my mom received the same type of directions. It was only sort of funny.
Now for the what was certainly in the Top Five Worst Moments of the ordeal. When I had my original meeting with Dr. E and Dr. K, they had told me the treatment plan consisted of 7 weeks of radiation and 3 chemos. One Thursday after the second chemo, I mentioned how many radiation treatments I had left to Dr K. She flips through the file and says, "No, forty treatments takes you until May 11". Ok I was not in the best of shape by now but I quickly checked my math:
7 weeks * 5 days/week = 35 treatments
My math was correct so where did the number 40 come from? "Well, the seven weeks is broad spectrum radiation from the jaw line to the collar bone to include the lymph nodes. The eighth week is a "boost dose" targeted at the primary tumor site." This had never been mentioned to anyone until this day. Moving that circled day on the refrigerator calendar a week further away was one of the hardest things I had ever done. The next day I was having my blood draw for my labs and complained to T about the way the 7/8 week thing was handled. I was already in a bad mood so I thought I might as well go the distance. "No one ever told me what stage I was and I never asked. What stage am I?" T turned around and pulled up my file on the computer, read a few screens and then closed my file. "Why do you want to know, I mean what difference does it make?" I told her when people asked me I wanted to know what to tell them (it may have also been said with a smart-ass tone of voice). The tumor was 1.5 inches by 1 inch, had metastisized to the lymph system and involved 5 nodes on the left side of my neck and 3 on the right side. That made me Stage Four.
That little piece of info had absolutely no impact on me. At all. I didn't care for some reason. I knew in my heart I was winning and the cancer was losing no matter what stage it was.
Thursday, October 20, 2011
Bottom's up!
My mom had been with me while Robin was away and between her and Beck, kept me in line. My mom counted my calories and let me know when I was short. I remember not acting to good about it either and if I remember that, it is probably worse than I thought. I need to remember to ask her to forgive me for being a jerk.
I had this ritual. I would grab three cans of Carnation VHC and whatever meds were up in the rotation. I would sit in front of the TV, set them all down and line them up. Then, make sure the trash can is close, just in case. Then I would rub my head. It is a nervous energy thing that was around before cancer and used to be a "tell" to Robin that something was up. I would then grab a can and shake it up. Sometimes, I would pop the top then and chug the whole thing. Most times I thought too much about it not staying down and set it down....for just a second....but usually so long I had to re-shake it. At some point, it was just time. Open the can, chug it, throw it in the trash. Sit for a minute or two and make sure it was going to stay down. Two more cans to go. Intermingled with the chugging was a little more head rubbing and this ADD thing where I would either move or mix up the line of cans and meds and re-order them. Repeat the ritual two more times and that is one meal. It took almost an hour sometimes. Looking back on it now, it was ridiculous but back then I couldn't have sped up if I wanted to.
Mom and Beck were wanting some lunch and I wanted us all to get out of the house. There is an Italian place not too far from home that has great salads and I knew I could find something I could get down. Looking over the menu I found "Italian Wedding Soup". Sounded safe enough. It was heavenly. I don't know all of the spices involved but it is mainly broth with maybe some orzo and small pieces of sausage. I could taste everything. Incredible. Mom reminded me that it was only broth and I needed to find something with some calories. I chose fetuccini alfredo. This place is usually a little heavy on the sauce and for once that was helpful not only for the calories but also to help the noodles down. Couldn't taste it and didn't eat too much.
One more piece of personal info is necessary to finish this story. One of the many side effects of the chemo regimine is constipation. There had been times in my life when I thought I had been constipated. I lacked perspective. To paraphrase Dan Akroid, this constipation was of biblical proportions. I remember thinking it would have made an incredible plague. Nuff said.
So, we get home with the leftovers and I grab the to-go box as I prefered the calories from the alfredo to another friggin can of VHC. Take several bites and my stomach lets me know it's time to retire to the library. Drop trou. Have a seat. Nothing. Then I push a little...
I woke up in my son's bathtub wrapped in the shower curtain which I had pulled out of the wall when I fell sideways off the toilet. A wet bath towel was on the back of my neck where my mom had put it. And, yes, my pants are still around my ankles. Until that day I had never passed out before. It is a trip. "Can you leave the bathroom so I can pull my pants up. Thank you." We all assumed it was dehydration. My next door neighbor is an EMT and someone ran next door to see if he had a bag of fluids and an IV kit. He didn't have one but told me he would bring one home in case I needed it in the future. He said more than likely my issue was a Vasovagal nerve response thing.
Hey, who said this wouldnt be fun?
I had this ritual. I would grab three cans of Carnation VHC and whatever meds were up in the rotation. I would sit in front of the TV, set them all down and line them up. Then, make sure the trash can is close, just in case. Then I would rub my head. It is a nervous energy thing that was around before cancer and used to be a "tell" to Robin that something was up. I would then grab a can and shake it up. Sometimes, I would pop the top then and chug the whole thing. Most times I thought too much about it not staying down and set it down....for just a second....but usually so long I had to re-shake it. At some point, it was just time. Open the can, chug it, throw it in the trash. Sit for a minute or two and make sure it was going to stay down. Two more cans to go. Intermingled with the chugging was a little more head rubbing and this ADD thing where I would either move or mix up the line of cans and meds and re-order them. Repeat the ritual two more times and that is one meal. It took almost an hour sometimes. Looking back on it now, it was ridiculous but back then I couldn't have sped up if I wanted to.
Mom and Beck were wanting some lunch and I wanted us all to get out of the house. There is an Italian place not too far from home that has great salads and I knew I could find something I could get down. Looking over the menu I found "Italian Wedding Soup". Sounded safe enough. It was heavenly. I don't know all of the spices involved but it is mainly broth with maybe some orzo and small pieces of sausage. I could taste everything. Incredible. Mom reminded me that it was only broth and I needed to find something with some calories. I chose fetuccini alfredo. This place is usually a little heavy on the sauce and for once that was helpful not only for the calories but also to help the noodles down. Couldn't taste it and didn't eat too much.
One more piece of personal info is necessary to finish this story. One of the many side effects of the chemo regimine is constipation. There had been times in my life when I thought I had been constipated. I lacked perspective. To paraphrase Dan Akroid, this constipation was of biblical proportions. I remember thinking it would have made an incredible plague. Nuff said.
So, we get home with the leftovers and I grab the to-go box as I prefered the calories from the alfredo to another friggin can of VHC. Take several bites and my stomach lets me know it's time to retire to the library. Drop trou. Have a seat. Nothing. Then I push a little...
I woke up in my son's bathtub wrapped in the shower curtain which I had pulled out of the wall when I fell sideways off the toilet. A wet bath towel was on the back of my neck where my mom had put it. And, yes, my pants are still around my ankles. Until that day I had never passed out before. It is a trip. "Can you leave the bathroom so I can pull my pants up. Thank you." We all assumed it was dehydration. My next door neighbor is an EMT and someone ran next door to see if he had a bag of fluids and an IV kit. He didn't have one but told me he would bring one home in case I needed it in the future. He said more than likely my issue was a Vasovagal nerve response thing.
Hey, who said this wouldnt be fun?
Batman Begins
So far, it had been fairly easy but I could feel things starting to turn. My diet had quickly transitioned from whatever I wanted to mostly liquid to 100% liquid. The "sun burn" on my neck had gotten worse to the point that I had two spots on my collarbone that were actually open sores that needed treatment separately. One big positive, I was told I would stop making spit and would need to use synthetic saliva for the rest of my life and that was not happening. For whatever reason, not only was I making saliva but making it in such volume that the surplus was becoming a problem. I had never thrown up due to nausea from chemo, but getting sick while trying to eat while dealing with the saliva issue had become pretty common.
My mom was staying with me while Robin was in California. I was incredibly torn about this. On the one hand, she has obviously known me all my life so it would be hard to imagine a situation where she couldn't help me. On the other hand, I felt about her much the same way I felt about the twins. She had a mental image of who I am and I already did not look anything like the old me. There were a lot of people I would wish had not seen me during a 3-4 week period. It was not pretty. I could not have done it without her. It is that simple.
I guess I needed some cheering up (more on that in a minute) because the running gag was calling me a superhero, really any superhero as long as he wore a mask (get it?). This had gone on a couple of days and found it's way onto Facebook. Sister-in-law St. Beck is on Facebook and sent me a message "Your wife's name is Robin. Duh.... You're Batman." That one stuck. Next thing you know I am getting all sorts of Batman stuff via Facebook and email. It worked, I thought it was pretty funny.
Now about the cheering up... I had received an amazing gift from my neice that to this day takes my breathe away every time I think about it. I was sharing the story with T during my weekly blood draw and got pretty choked up. Anyone who knows me knows I am a pretty emotional guy. I certainly didn't think it was a big deal, I mean it was an awesome story. T gets quiet and says, "You need some help." I then got a sales pitch for anti-depressants. I was 100%, dead set against it. I didn't already have an opinion, I just didn't think I needed them. It turns out it was a discussion that should have already taken place. One of the things about the cancer fight that I was not prepared for was the relentlessness of it. Once again, I was having a fairly easy time of things but anything that was starting to bother me (sore throat, trouble swallowing, etc.) bothered me constantly. There was never a time to regroup. I was doing OK at fighting back but it was obviously starting to wear me down and it would get worse before it got better. Deb got involved at this point and also asked me what pain meds I was taking. "Pain meds?" Apparently this was another conversation that should have already taken place. I wasn't taking anything. She prescribed Fentanyl patches each of which last 3 days.
Immediately, the pain meds changed the game. Most of my puking was from choking on excess saliva while eating. It would start with what I can best describe as a muscle spasm that would continue until there was nothing left to puke. Sorry for that but I couldn't come up with a sexier way of saying it. Anyway, the pain meds stopped the spasms and while I did continue to get sick every now and then it wasn't nearly as bad. There was also some comedy involved. Fentanyl is some really cool stuff. Sometimes, I would blink and when my eyes opened people would have moved and they were usually laughing. Robin would tell me later she could see it in my eyes and tell everyone in the room, "He's gone. He will be back in a minute." It is some powerful stuff.
I read the side effects of the anti-depressant they wanted me on and said uh-uh. There are some things that are very important to me and this drug and many like it mess with those things. Not happening. In what could best be described as an intervention, several of my loved ones made it very clear to me that I needed to do whatever it takes to get through treatment and then deal with whatever is left after that. I relented and even though it was subtle, felt better almost immediately. It was the right call. By the way, the list of side effects was accurate. I would have to get to that later.
My mom was staying with me while Robin was in California. I was incredibly torn about this. On the one hand, she has obviously known me all my life so it would be hard to imagine a situation where she couldn't help me. On the other hand, I felt about her much the same way I felt about the twins. She had a mental image of who I am and I already did not look anything like the old me. There were a lot of people I would wish had not seen me during a 3-4 week period. It was not pretty. I could not have done it without her. It is that simple.
I guess I needed some cheering up (more on that in a minute) because the running gag was calling me a superhero, really any superhero as long as he wore a mask (get it?). This had gone on a couple of days and found it's way onto Facebook. Sister-in-law St. Beck is on Facebook and sent me a message "Your wife's name is Robin. Duh.... You're Batman." That one stuck. Next thing you know I am getting all sorts of Batman stuff via Facebook and email. It worked, I thought it was pretty funny.
Now about the cheering up... I had received an amazing gift from my neice that to this day takes my breathe away every time I think about it. I was sharing the story with T during my weekly blood draw and got pretty choked up. Anyone who knows me knows I am a pretty emotional guy. I certainly didn't think it was a big deal, I mean it was an awesome story. T gets quiet and says, "You need some help." I then got a sales pitch for anti-depressants. I was 100%, dead set against it. I didn't already have an opinion, I just didn't think I needed them. It turns out it was a discussion that should have already taken place. One of the things about the cancer fight that I was not prepared for was the relentlessness of it. Once again, I was having a fairly easy time of things but anything that was starting to bother me (sore throat, trouble swallowing, etc.) bothered me constantly. There was never a time to regroup. I was doing OK at fighting back but it was obviously starting to wear me down and it would get worse before it got better. Deb got involved at this point and also asked me what pain meds I was taking. "Pain meds?" Apparently this was another conversation that should have already taken place. I wasn't taking anything. She prescribed Fentanyl patches each of which last 3 days.
Immediately, the pain meds changed the game. Most of my puking was from choking on excess saliva while eating. It would start with what I can best describe as a muscle spasm that would continue until there was nothing left to puke. Sorry for that but I couldn't come up with a sexier way of saying it. Anyway, the pain meds stopped the spasms and while I did continue to get sick every now and then it wasn't nearly as bad. There was also some comedy involved. Fentanyl is some really cool stuff. Sometimes, I would blink and when my eyes opened people would have moved and they were usually laughing. Robin would tell me later she could see it in my eyes and tell everyone in the room, "He's gone. He will be back in a minute." It is some powerful stuff.
I read the side effects of the anti-depressant they wanted me on and said uh-uh. There are some things that are very important to me and this drug and many like it mess with those things. Not happening. In what could best be described as an intervention, several of my loved ones made it very clear to me that I needed to do whatever it takes to get through treatment and then deal with whatever is left after that. I relented and even though it was subtle, felt better almost immediately. It was the right call. By the way, the list of side effects was accurate. I would have to get to that later.
Thursday, October 13, 2011
Halfway Point
The second chemo marked the halfway point of treatment. My neck had changed from it's normal shade to a very healthy looking tan and then to a painful looking sunburn. I was starting to have some difficulty swallowing but was still eating pretty much whatever I wanted. Of course, I couldn't taste squat. It was subtle but starting at about the two week mark everything starting having a faint metallic taste. As time went on it got less and less subtle. I also ran into a couple of major flaws in my overall plan.
First flaw, my arms. It wasn't that long ago that I told Doogie that my veins were awesome and I wouldn't be needing a port. Since that day I had already had a full blood panel, an IV for my tongue biopsy surgery, an IV for the first chemo and one blood draw a week for the last 3 weeks. The nurses were starting to take longer and longer to pick a spot to stick me.
Second flaw, my weight. I had been eating a tremendous amount of food. I never missed a meal and super sized everything yet I was still getting a ration of crap from Dr. K every Wednesday. Every weigh in I was down a pound or two which didn't seem like a lot to me (I AM sick you know). Dr. K had bristled about my declining the feeding tube and weekly asked me if I had a stomach tube. Either she couldn't read the chart she had laying open in her lap, had a lousy memory and didn't remember my answer from the previous week or she was trying to make a point. They had allowed me 30 pounds over the duration of the treatment. They were telling me that projecting my current rate of loss I would break my limit and they would have to intervene.
My mom drove in from New Mexico to stay with me during the second chemo while Robin was at her training class in California. My sister-in-law Saint Beck drove in from Houston to help out as well. My brother-in-law Mike had called and asked if he could come along too. He and I usually talk music for hours and I couldn't think of a better way to pass the time or better people to do it with. The bad news, T was at the Southlake office today and someone else would be doing my treatment. After three attempted sticks with no success, I suggested we give someone else a shot. The doc's nurse, Deb, looked at my arms and talked a bit and ended up calling the tech from radiology that does my PETs. Bingo. Stuck me first time.
While Deb was there, I lodged a few complaints. First and foremost, I wanted Dr. K off my back. Deb is a pro and backed up her doctor but talked with me about my decision to forego the tube and my weight loss. She found the problem right away. For the last three years I had been eating and training like an athlete. Now, I was trying to gain weight by eating larger portions of healthy food. Problem was there was just not enough calorie content. Her first suggestion, add ice cream, milkshakes, and other fun stuff. Then she told us about Carnation VHC (Very High Calorie). It is a canned breakfast drink primarily for cancer patients that has almost 700 calories. She hadn't even finished telling me about it when Beck looked over the top of her iPad and said "Ordered a case. Be here tomorrow." Like I have said, I was in very good hands. Deb also gave me a number to shoot for: 3500 calories a day.
With my IV started I told the nurse I had some pain when receiving the cisplatin on the first treatment and that afterward my vein was hard to the touch from my elbow to my armpit for two weeks. I shared that information with her so she would slow down the infusion pump for the cisplatin. What I didn't know for a while was she had slowed down the pump before we even started. I received all of the fluids at the slower speed making my four hour treatment end up taking over seven hours. All of the company made the time pass so quickly. Cindy came by and got to meet everyone. There is a sign in the infusion suite that says you can only have one visitor and I had a party going on.
My chemo ran so long that the radiation techs stuck their head in the door several times, looked at my IV tree and shook their heads. The third time, they asked how much longer I would be. At that time I was just wrapping up the cisplatin so I had a large bag of fluids to go. They had a huddle and decided to unplug me, radiate me, and then plug me back in to finish up. I got out of the recliner and started walking towards radiation. The tech turned to my entourage and said "You guys wanna watch?". They let my mom, Mike and Becky come into the room and see how they bolted my head down. Then they went outside and watched the techs line me up with the x-rays and deliver the treatment. It was a very cool thing the tech did that really put my family at ease.
After that, back to the recliner to finish my bag.
First flaw, my arms. It wasn't that long ago that I told Doogie that my veins were awesome and I wouldn't be needing a port. Since that day I had already had a full blood panel, an IV for my tongue biopsy surgery, an IV for the first chemo and one blood draw a week for the last 3 weeks. The nurses were starting to take longer and longer to pick a spot to stick me.
Second flaw, my weight. I had been eating a tremendous amount of food. I never missed a meal and super sized everything yet I was still getting a ration of crap from Dr. K every Wednesday. Every weigh in I was down a pound or two which didn't seem like a lot to me (I AM sick you know). Dr. K had bristled about my declining the feeding tube and weekly asked me if I had a stomach tube. Either she couldn't read the chart she had laying open in her lap, had a lousy memory and didn't remember my answer from the previous week or she was trying to make a point. They had allowed me 30 pounds over the duration of the treatment. They were telling me that projecting my current rate of loss I would break my limit and they would have to intervene.
My mom drove in from New Mexico to stay with me during the second chemo while Robin was at her training class in California. My sister-in-law Saint Beck drove in from Houston to help out as well. My brother-in-law Mike had called and asked if he could come along too. He and I usually talk music for hours and I couldn't think of a better way to pass the time or better people to do it with. The bad news, T was at the Southlake office today and someone else would be doing my treatment. After three attempted sticks with no success, I suggested we give someone else a shot. The doc's nurse, Deb, looked at my arms and talked a bit and ended up calling the tech from radiology that does my PETs. Bingo. Stuck me first time.
While Deb was there, I lodged a few complaints. First and foremost, I wanted Dr. K off my back. Deb is a pro and backed up her doctor but talked with me about my decision to forego the tube and my weight loss. She found the problem right away. For the last three years I had been eating and training like an athlete. Now, I was trying to gain weight by eating larger portions of healthy food. Problem was there was just not enough calorie content. Her first suggestion, add ice cream, milkshakes, and other fun stuff. Then she told us about Carnation VHC (Very High Calorie). It is a canned breakfast drink primarily for cancer patients that has almost 700 calories. She hadn't even finished telling me about it when Beck looked over the top of her iPad and said "Ordered a case. Be here tomorrow." Like I have said, I was in very good hands. Deb also gave me a number to shoot for: 3500 calories a day.
With my IV started I told the nurse I had some pain when receiving the cisplatin on the first treatment and that afterward my vein was hard to the touch from my elbow to my armpit for two weeks. I shared that information with her so she would slow down the infusion pump for the cisplatin. What I didn't know for a while was she had slowed down the pump before we even started. I received all of the fluids at the slower speed making my four hour treatment end up taking over seven hours. All of the company made the time pass so quickly. Cindy came by and got to meet everyone. There is a sign in the infusion suite that says you can only have one visitor and I had a party going on.
My chemo ran so long that the radiation techs stuck their head in the door several times, looked at my IV tree and shook their heads. The third time, they asked how much longer I would be. At that time I was just wrapping up the cisplatin so I had a large bag of fluids to go. They had a huddle and decided to unplug me, radiate me, and then plug me back in to finish up. I got out of the recliner and started walking towards radiation. The tech turned to my entourage and said "You guys wanna watch?". They let my mom, Mike and Becky come into the room and see how they bolted my head down. Then they went outside and watched the techs line me up with the x-rays and deliver the treatment. It was a very cool thing the tech did that really put my family at ease.
After that, back to the recliner to finish my bag.
Wednesday, October 12, 2011
The fervent prayer of rightous men
Most books or movies have a plot that builds to a conclusion at the end of the story. I may not have realized it at the time but my plot may have reached it's summit in the week and a half prior to my second chemo.
I failed to mention in my previous posts that I had a tongue biopsy performed at Baylor Grapevine before starting treatment. The portion of my tongue where the tumor was is far enough back in my mouth that the layman would call it "throat" instead of "tongue". Dr. G told me there was no way he could get his sample with me awake as I would fight too much so it would have to be outpatient surgery. It was a piece of cake, so much so that I didn't even have a sore throat. Shortly after, Robin and I went to Roanoke, TX to a restaraunt called Twisted Root for a burger and several selections from the pickle bar (don't laugh til you've tried it). Before our food was ready Robin's phone rang. She answered and then went outside as the music is quite loud in this place. About five minutes later she returned to our table visibly upset. "I just got fired for missing work." That is, missing work to take me to and bring me home from my surgery. I didn't freak out as I had been praying for a new job for her primarily because there were things going on that were ethical problems and Robin had taken heat for not going along. We decided then not to pursue legal action as our plates were pretty full. Really, she was "free" from them. We also decided not to badmouth Dossett Dental or even really mention them by name. Oops, that slipped. Anyway, firing a 10+ year employee for taking her husband to a cancer related surgery...I want to be miles away from that Karma.
Robin quickly found another job and her new fellow employees would prove to be very supportive and would help her through some rough times. The new office approached her about becoming certified to use a laser but the class was in California and would be during my second chemo treatment. I felt great at the time and strongly encouraged her to go ahead and go to the class. I had family that could take me, bring me home and hang out in case it got bad (which I doubted would happen). Not only was it a great opportunity for her career but it was a chance for her to get away from the drama before things got bad. It wasn't easy but I talked her into it.
Before she left on her trip, a very dear friend of mine had asked if he and another mutual friend could pray for Robin and I. I have known Ken a very long time and he is the very definition of a prayer warrior. If Ken wanted to pray for me I was going to let him. We were to meet them early evening on a Saturday. That day, I walked into the house to pick Robin up and interrupted a fight between two of our dogs in the living room. In the process of breaking up the fight, I was bitten in the thumb of my left hand. Kind of the opposite of "avoiding infection" like I had been told. We separated the dogs, bandaged the bite and took a deep breath. There were certainly several reasons to call Ken and cancel but for some reason I felt I needed to go. Robin would stay home with the dogs. Next thing I know, she walks up with her purse. "I'm not going to make you go alone."
As we pulled up to the house, there were close to what seemed like dozens of vehicles parked at the house and along both sides of the street. We walked up to the door and followed someone else in. There were close to thirty people standing and talking in small groups everywhere you looked. I found Ken and he found JJ (the mutual friend). We spoke briefly and then JJ asked Robin and I to sit in the center of the living room and called the room to order. JJ introduced Robin and I to the group. He then looked at us and said "I have not told anyone what you are facing. We would like to pray and if anyone is giving something they need to share with you, they will do so." Ken sang a song and no one approached us. As he sang the second, a woman walked up to me and said "It's something in your neck isn't it?" The cancerous lymph node on the right side of my neck was very large but not large enough to see across the room. At least I think it wasn't. "I want to pray for you", turns to look at Robin, "..and I will get to you in a minute." Her prayer was whispered and I didn't hear it. It wasn't meant for me to hear anyway. Shortly, she moved over to Robin.
"You just seem to be carrying so much guilt." Robin told her she didn't believe she was. "Could it be that you have prayed for the Lord to take this from Chris and He hasn't and you think you haven't prayed hard enough?" No, don't think so. The lady went back to her seat but as several people came to pray for me, she periodically stood up and addressed Robin with another possible source of guilt. That sentence sounds horrible but the experience wasn't like that at all. It was like watching someone search for a word they could not remember; she knew something was there but couldn't find it. After the prayers, JJ delivered a message about the body of Christ and then Robin and I rose to leave. We thanked everyone for praying on our behalf. As we reached the door a young woman and her husband asked if she could pray for me before I left. She took one of my hands and placed her other hand on the lymph node. Once again, I could not hear her prayer but after several moments she quickly withdrew her hands, said "I'm sorry" and ran away. Yes, she ran. That freaked me out a bit.
The entire experience was well outside of both our comfort zones but we discussed what was said all the way home and even as we lay in bed before going to sleep. At about 4 am, Robin shook me awake and said "Feel your neck!". Where there was once a large lymph node there was now a small hard spot. It had shrunk in size by close to 90% in 6 hours! I believed in healing before my experience even though I had never personally witnessed it. There are several people I know and trust who have told me they HAVE seen it and I believe them. In my heart, I knew I had not been healed in the strictest sense. I think I had received a message from the Lord that no matter how hard this was, I would not be alone.
As for Robin, she was at her class in Cali and shared with the instructor that her husband was receiving chemo and she would be texting during class periodically to check on me. Turns out the instructors husband was also in a cancer fight. They hugged and the instructor asked if she could share the news with the rest of the class after the break. Robin agreed. Quite a different environment from her previous employer, huh? At the next break, one of the other hygienist approached Robin and asked "If you clean your husband's teeth, how could you not have seen the tumor?" It hit her like a ton of bricks. Obviously, the tumor was in my throat and not visible from inside my mouth so there was no way she could have seen it. Yet, she still had the feeling she had let me down.
Suddenly, that Saturday night made more sense....
I failed to mention in my previous posts that I had a tongue biopsy performed at Baylor Grapevine before starting treatment. The portion of my tongue where the tumor was is far enough back in my mouth that the layman would call it "throat" instead of "tongue". Dr. G told me there was no way he could get his sample with me awake as I would fight too much so it would have to be outpatient surgery. It was a piece of cake, so much so that I didn't even have a sore throat. Shortly after, Robin and I went to Roanoke, TX to a restaraunt called Twisted Root for a burger and several selections from the pickle bar (don't laugh til you've tried it). Before our food was ready Robin's phone rang. She answered and then went outside as the music is quite loud in this place. About five minutes later she returned to our table visibly upset. "I just got fired for missing work." That is, missing work to take me to and bring me home from my surgery. I didn't freak out as I had been praying for a new job for her primarily because there were things going on that were ethical problems and Robin had taken heat for not going along. We decided then not to pursue legal action as our plates were pretty full. Really, she was "free" from them. We also decided not to badmouth Dossett Dental or even really mention them by name. Oops, that slipped. Anyway, firing a 10+ year employee for taking her husband to a cancer related surgery...I want to be miles away from that Karma.
Robin quickly found another job and her new fellow employees would prove to be very supportive and would help her through some rough times. The new office approached her about becoming certified to use a laser but the class was in California and would be during my second chemo treatment. I felt great at the time and strongly encouraged her to go ahead and go to the class. I had family that could take me, bring me home and hang out in case it got bad (which I doubted would happen). Not only was it a great opportunity for her career but it was a chance for her to get away from the drama before things got bad. It wasn't easy but I talked her into it.
Before she left on her trip, a very dear friend of mine had asked if he and another mutual friend could pray for Robin and I. I have known Ken a very long time and he is the very definition of a prayer warrior. If Ken wanted to pray for me I was going to let him. We were to meet them early evening on a Saturday. That day, I walked into the house to pick Robin up and interrupted a fight between two of our dogs in the living room. In the process of breaking up the fight, I was bitten in the thumb of my left hand. Kind of the opposite of "avoiding infection" like I had been told. We separated the dogs, bandaged the bite and took a deep breath. There were certainly several reasons to call Ken and cancel but for some reason I felt I needed to go. Robin would stay home with the dogs. Next thing I know, she walks up with her purse. "I'm not going to make you go alone."
As we pulled up to the house, there were close to what seemed like dozens of vehicles parked at the house and along both sides of the street. We walked up to the door and followed someone else in. There were close to thirty people standing and talking in small groups everywhere you looked. I found Ken and he found JJ (the mutual friend). We spoke briefly and then JJ asked Robin and I to sit in the center of the living room and called the room to order. JJ introduced Robin and I to the group. He then looked at us and said "I have not told anyone what you are facing. We would like to pray and if anyone is giving something they need to share with you, they will do so." Ken sang a song and no one approached us. As he sang the second, a woman walked up to me and said "It's something in your neck isn't it?" The cancerous lymph node on the right side of my neck was very large but not large enough to see across the room. At least I think it wasn't. "I want to pray for you", turns to look at Robin, "..and I will get to you in a minute." Her prayer was whispered and I didn't hear it. It wasn't meant for me to hear anyway. Shortly, she moved over to Robin.
"You just seem to be carrying so much guilt." Robin told her she didn't believe she was. "Could it be that you have prayed for the Lord to take this from Chris and He hasn't and you think you haven't prayed hard enough?" No, don't think so. The lady went back to her seat but as several people came to pray for me, she periodically stood up and addressed Robin with another possible source of guilt. That sentence sounds horrible but the experience wasn't like that at all. It was like watching someone search for a word they could not remember; she knew something was there but couldn't find it. After the prayers, JJ delivered a message about the body of Christ and then Robin and I rose to leave. We thanked everyone for praying on our behalf. As we reached the door a young woman and her husband asked if she could pray for me before I left. She took one of my hands and placed her other hand on the lymph node. Once again, I could not hear her prayer but after several moments she quickly withdrew her hands, said "I'm sorry" and ran away. Yes, she ran. That freaked me out a bit.
The entire experience was well outside of both our comfort zones but we discussed what was said all the way home and even as we lay in bed before going to sleep. At about 4 am, Robin shook me awake and said "Feel your neck!". Where there was once a large lymph node there was now a small hard spot. It had shrunk in size by close to 90% in 6 hours! I believed in healing before my experience even though I had never personally witnessed it. There are several people I know and trust who have told me they HAVE seen it and I believe them. In my heart, I knew I had not been healed in the strictest sense. I think I had received a message from the Lord that no matter how hard this was, I would not be alone.
As for Robin, she was at her class in Cali and shared with the instructor that her husband was receiving chemo and she would be texting during class periodically to check on me. Turns out the instructors husband was also in a cancer fight. They hugged and the instructor asked if she could share the news with the rest of the class after the break. Robin agreed. Quite a different environment from her previous employer, huh? At the next break, one of the other hygienist approached Robin and asked "If you clean your husband's teeth, how could you not have seen the tumor?" It hit her like a ton of bricks. Obviously, the tumor was in my throat and not visible from inside my mouth so there was no way she could have seen it. Yet, she still had the feeling she had let me down.
Suddenly, that Saturday night made more sense....
Tuesday, October 11, 2011
Looking around.....
"When it hits the fan, and it will hit the fan, look around. There will be people that you thought would still be there with you that are nowhere to be found. There will also be people right beside you that you never would have thought would be."
When my boys read that I guarantee you they will roll their eyes. They heard it dozens of times, usually when they were hanging out with someone I might not have completely approved of and calling them a "friend". Well, cancer is probably the definition of "hitting the fan" and I didn't have to look very long to see that I was completely surrounded by friends willing to do anything I could ask. I received cards, emails and phone calls. One friend sent me a card almost every week and she did it while her sister fought for her life with leukemia. There were family members that exceeded what I could have ever hoped or asked for. Driving me to treatment later on when I was unable to do so myself. Giving Robin a break when she desperately needed it. They were there for a lot of stuff that was no fun for anyone and I would not have blamed them at all had they chosen not to be.
I kept the cards and letters in a large box and read them every day and was encouraged by them. As days passed the box got more and more full. Halfway through treatment Robin bought a bigger box. At the same time, I was meeting more and more people at the clinic and as I have said before, they were all sicker than me. One lady in particular changed the way I looked at those letters and emails. She was in the radiation waiting room and was wearing a bandana and we all know what that means, she had the same haircut as me. She had recently changed her radiation treatment time and would be waiting with me for the remainder of her treatment. My voice sucked at the time so when I introduced myself I had to sit very close to her. We shared where we were in treatment and how we were feeling. Then she spoke about her family who lived in Southlake (an affluent city approximately 10 miles away). I asked if they were in the lobby. No, they were very busy and couldn't take her to her treatments.
Are you *%*&@^!^& kidding me?
Here I was with family members arguing about who gets to take me to treatment and this wonderful woman is driving herself and basically fighting alone. Next time I went through my box I felt a little subconscious about not only the volume of well wishes and prayers but the things that were said in the cards and letters. Who the hell am I? What makes me so special? How could I get all the people sending me stuff to send her some cards and well wishes? Problem is, it's not just her. There are so many....
What makes me so special? I'm not. But my friends and family are.
When my boys read that I guarantee you they will roll their eyes. They heard it dozens of times, usually when they were hanging out with someone I might not have completely approved of and calling them a "friend". Well, cancer is probably the definition of "hitting the fan" and I didn't have to look very long to see that I was completely surrounded by friends willing to do anything I could ask. I received cards, emails and phone calls. One friend sent me a card almost every week and she did it while her sister fought for her life with leukemia. There were family members that exceeded what I could have ever hoped or asked for. Driving me to treatment later on when I was unable to do so myself. Giving Robin a break when she desperately needed it. They were there for a lot of stuff that was no fun for anyone and I would not have blamed them at all had they chosen not to be.
I kept the cards and letters in a large box and read them every day and was encouraged by them. As days passed the box got more and more full. Halfway through treatment Robin bought a bigger box. At the same time, I was meeting more and more people at the clinic and as I have said before, they were all sicker than me. One lady in particular changed the way I looked at those letters and emails. She was in the radiation waiting room and was wearing a bandana and we all know what that means, she had the same haircut as me. She had recently changed her radiation treatment time and would be waiting with me for the remainder of her treatment. My voice sucked at the time so when I introduced myself I had to sit very close to her. We shared where we were in treatment and how we were feeling. Then she spoke about her family who lived in Southlake (an affluent city approximately 10 miles away). I asked if they were in the lobby. No, they were very busy and couldn't take her to her treatments.
Are you *%*&@^!^& kidding me?
Here I was with family members arguing about who gets to take me to treatment and this wonderful woman is driving herself and basically fighting alone. Next time I went through my box I felt a little subconscious about not only the volume of well wishes and prayers but the things that were said in the cards and letters. Who the hell am I? What makes me so special? How could I get all the people sending me stuff to send her some cards and well wishes? Problem is, it's not just her. There are so many....
What makes me so special? I'm not. But my friends and family are.
Sunday, October 9, 2011
The new routine
With two radiations and a chemo under my belt, I for some reason felt remarkably good. I was still eating pretty much whatever I wanted and in large quantities. Everyone at the clinic was stressing to me how important it was to keep my weight up especially after denying the feeding tube.
I also started settling into a routine that would continue for the next two months. My appointment for radiation therapy was at 4:45 so every day at around 3:00 I would start doing the mental math of how long it would take to get to Las Colinas from wherever I happened to be working that day. Once I arrive at the clinic I sign in at the front desk and then go on back to a much smaller waiting room for the radiation suite. Everyone who is in therapy has a standing appointment for the machine so the people waiting with me that first week would become very familiar as we would pass each other every day. On Wednesdays, I had a brief meeting with the radiation oncologist Dr K. She would ask how I was doing, poke around on my neck and look in my mouth. She would also weigh me. Thursdays, I met with Doogie and he asked some of the same questions but was a little more interested in chemo related stuff. They also took blood for labs which they performed while I waited and gave me a printout of the results. The chemo can be rough on kidneys and also affects the bone marrow which affects white blood cell count.
Like I said, I felt great but as early as day four of treatment I had one side effect from the chemo. I have always had tinitis, ringing in my ears. I can honestly trace it back to an Aerosmith concert when I was a sophmore in high school. Anyway, seemingly overnight the ringing at least doubled in volume. I mentioned it to T and she kinda freaked out a little, which scared me. I remember she made a shocked face and said "Already?". That can't be good. Go home and google Cisplatin (again) and there it is in black and white under side effects: loss of hearing. There is currently no guard against the loss or way to recover it.
I also started settling into a routine that would continue for the next two months. My appointment for radiation therapy was at 4:45 so every day at around 3:00 I would start doing the mental math of how long it would take to get to Las Colinas from wherever I happened to be working that day. Once I arrive at the clinic I sign in at the front desk and then go on back to a much smaller waiting room for the radiation suite. Everyone who is in therapy has a standing appointment for the machine so the people waiting with me that first week would become very familiar as we would pass each other every day. On Wednesdays, I had a brief meeting with the radiation oncologist Dr K. She would ask how I was doing, poke around on my neck and look in my mouth. She would also weigh me. Thursdays, I met with Doogie and he asked some of the same questions but was a little more interested in chemo related stuff. They also took blood for labs which they performed while I waited and gave me a printout of the results. The chemo can be rough on kidneys and also affects the bone marrow which affects white blood cell count.
Like I said, I felt great but as early as day four of treatment I had one side effect from the chemo. I have always had tinitis, ringing in my ears. I can honestly trace it back to an Aerosmith concert when I was a sophmore in high school. Anyway, seemingly overnight the ringing at least doubled in volume. I mentioned it to T and she kinda freaked out a little, which scared me. I remember she made a shocked face and said "Already?". That can't be good. Go home and google Cisplatin (again) and there it is in black and white under side effects: loss of hearing. There is currently no guard against the loss or way to recover it.
Thursday, October 6, 2011
Day Two - First Chemo
Took off Friday as my appointment for chemo was fairly early and the process would take 4 hours. Robin went with me along with an iPod, a Kindle (thanks, Mom!), a word search, and a bag of snacks and stuff. The "Infusion Suite" was a long room with probably a dozen large recliners. Next to each recliner was an IV infusion machine. In the back corner was a bed with a hospital style wrap around curtain. In the center of the room was a small game table where someone had left a partially completed jigsaw puzzle. It was pleasant and very clean.
This day had been looming for some time but I was even up to the last minute much more calm than I should have been. I know where that peace came from but was surprised to have received it.
I have used abbreviations for people since I haven't cleared any of this blog stuff with anyone. I couldn't think of a cute nickname or abbreviation for the nurse who actually handled my treatments (2 of the 3 anyway) and took very good care of not only me but my family as well. I will just call her T. T has a special place in my heart and the hearts of my family.
T kind of gave me the run down of how the treatment would go. I would have thought it would have been more complicated but there wasn't much to it, especially from me. My job was to just sit there... She grabbed a large bag of fluids, saline I believe, which would always be step one in the treatments. She hung the bag on the tree, threaded the line and prepped my arm. When she touched my arm with the needle, I immediately got light headed and broke into a sweat. I was VERY embarrassed and told her I have never been afraid of needles and had actually been stuck more times in the last several weeks than my previous life combined! She told me not to worry and that it had nothing to do with the needle. She said, "Everyone prepares themselves for the first treatment, but until your butt is in the recliner it isn't real. Now it's real." I drank some grape juice, ate a cracker and we got on with it.
When I finished the large saline bag, T brought a splitter and on one side plugged in a small bag of anit-nausea meds and on the other side plugged in a small bag of steroids. She explained that the steroids kicked the anti-nausea meds into a whole 'nother gear and that they had much success with the combo. While I was getting the combo platter, T went into a small adjacent lab area to mix the chemo drug - cisplatin. It's kind of unnerving to see someone put on a protective smock, large gloves and a face shield, mix up a bag of stuff and then walk over and put it in your veins. That's what happened right after I finished the combo. I felt some discomfort in my arm from the cisplatin and after a few minutes waved T over and told her. She slowed down the pump a bit and things got better. After finishing that bag, I got one more large bag of saline and I was done. Right at 4 hours elapsed. I had plenty of time to ask questions during the day and this is what I had learned about the part of my treatment I had dreaded so:
1) The day and night of chemo day you feel GREAT! The steroids make you a bit jittery and you don't get much sleep that night but you feel really good.
2) Day 3 is the worst. Flu like symptoms, just yucky.
3) You get better after that but never quite make it back to where you started. For example, she said you will do great on the first one because you are at 100%. The first one knocks you down to like 60% but you eat and rest and build yourself up and in three weeks you've made it up to 85%....but now it's time for your second round. Also, that is right around the time when some of the radiation effects kick in. Bottom line, the last one is a bitch.
Unplugged me, bandaged my arm and sent me to radiation. 15 minutes later, Robin and I met Alex at a Chinese buffet and I did my best to put them out of business.
Most everything T said about the chemo treatment was accurate. The exception was I never really felt bad. The worst thing I felt was the way you feel when you are about a day away from getting sick, not achy but not quite right either. By Day 4 after chemo I was doing great again. Even went for a 7 mile run. It would be my last for a long while.
This day had been looming for some time but I was even up to the last minute much more calm than I should have been. I know where that peace came from but was surprised to have received it.
I have used abbreviations for people since I haven't cleared any of this blog stuff with anyone. I couldn't think of a cute nickname or abbreviation for the nurse who actually handled my treatments (2 of the 3 anyway) and took very good care of not only me but my family as well. I will just call her T. T has a special place in my heart and the hearts of my family.
T kind of gave me the run down of how the treatment would go. I would have thought it would have been more complicated but there wasn't much to it, especially from me. My job was to just sit there... She grabbed a large bag of fluids, saline I believe, which would always be step one in the treatments. She hung the bag on the tree, threaded the line and prepped my arm. When she touched my arm with the needle, I immediately got light headed and broke into a sweat. I was VERY embarrassed and told her I have never been afraid of needles and had actually been stuck more times in the last several weeks than my previous life combined! She told me not to worry and that it had nothing to do with the needle. She said, "Everyone prepares themselves for the first treatment, but until your butt is in the recliner it isn't real. Now it's real." I drank some grape juice, ate a cracker and we got on with it.
When I finished the large saline bag, T brought a splitter and on one side plugged in a small bag of anit-nausea meds and on the other side plugged in a small bag of steroids. She explained that the steroids kicked the anti-nausea meds into a whole 'nother gear and that they had much success with the combo. While I was getting the combo platter, T went into a small adjacent lab area to mix the chemo drug - cisplatin. It's kind of unnerving to see someone put on a protective smock, large gloves and a face shield, mix up a bag of stuff and then walk over and put it in your veins. That's what happened right after I finished the combo. I felt some discomfort in my arm from the cisplatin and after a few minutes waved T over and told her. She slowed down the pump a bit and things got better. After finishing that bag, I got one more large bag of saline and I was done. Right at 4 hours elapsed. I had plenty of time to ask questions during the day and this is what I had learned about the part of my treatment I had dreaded so:
1) The day and night of chemo day you feel GREAT! The steroids make you a bit jittery and you don't get much sleep that night but you feel really good.
2) Day 3 is the worst. Flu like symptoms, just yucky.
3) You get better after that but never quite make it back to where you started. For example, she said you will do great on the first one because you are at 100%. The first one knocks you down to like 60% but you eat and rest and build yourself up and in three weeks you've made it up to 85%....but now it's time for your second round. Also, that is right around the time when some of the radiation effects kick in. Bottom line, the last one is a bitch.
Unplugged me, bandaged my arm and sent me to radiation. 15 minutes later, Robin and I met Alex at a Chinese buffet and I did my best to put them out of business.
Most everything T said about the chemo treatment was accurate. The exception was I never really felt bad. The worst thing I felt was the way you feel when you are about a day away from getting sick, not achy but not quite right either. By Day 4 after chemo I was doing great again. Even went for a 7 mile run. It would be my last for a long while.
Wednesday, October 5, 2011
March 17th - Day One
Of everything I knew at this point, I was most scared of chemo. I had discussed it with Doogie and he had told me in broad terms what to expect but I still had the mental image of what I thought people on chemo looked like. I had also talked with Dr. K about radiation and knew that I likely wouldn't feel anything from that treatment for several weeks. There was nothing left to do but get this party started. I thought I would feel better when the waiting was over and I was closing the distance between that day and the day of the last treatment.
I had decided I was going to work as much as possible through treatment. The cancer center was on the feeder road of a tollway I use almost every day so I set up my standing appointment at 4:45 so I could whip in, get zapped and then continue on home. On Day One, I met the radiation techs (two of which I had already met when they made my mask) who showed me around the room I would spend part of every weekday for the next 7 weeks. My mask was on a shelving unit in the room. I walked in, layed down on the table and they fastened the mask down over my face and asked if I was OK. I grunted yes and they said what they would say at that point every day, "Here we go". They leave the room and the treatment starts.
I obviously couldn't see anything but I had the process explained to me by family members who were allowed to watch (I will tell that story soon!). The table I am on rises about 4 feet off the ground. That part was a surprise as it operates so smoothly, quietly and slowly that I never had the sensation of being lifted. As I was being lifted, an X-Ray machine was mechanically moved into place and one image taken from the side, another taken directly above. Then the X-Ray arm is retracted and nothing happens for a minute or so. While I am waiting, the technician is looking at my original film and the two just taken by the machine. He/She then uses a joystick and moves the two new images until they are exactly on top of the original. They press a button and the table I am on moves to the exact position of my original film. I feel the table wiggle a little bit and then the arm that does the radiating moves into place. It would then make a whining noise and three revolutions, arcs, around my neck. When it was done I could hear it pull back as the table lowered to normal height. Within seconds the tech was by my side un-dogging the t handle fasteners that hold the mask to the table. Start to finish the entire process takes from 13-17 minutes.
One down, 34 to go.
Tomorrow, another radiation treatment and my first chemo.
I had decided I was going to work as much as possible through treatment. The cancer center was on the feeder road of a tollway I use almost every day so I set up my standing appointment at 4:45 so I could whip in, get zapped and then continue on home. On Day One, I met the radiation techs (two of which I had already met when they made my mask) who showed me around the room I would spend part of every weekday for the next 7 weeks. My mask was on a shelving unit in the room. I walked in, layed down on the table and they fastened the mask down over my face and asked if I was OK. I grunted yes and they said what they would say at that point every day, "Here we go". They leave the room and the treatment starts.
I obviously couldn't see anything but I had the process explained to me by family members who were allowed to watch (I will tell that story soon!). The table I am on rises about 4 feet off the ground. That part was a surprise as it operates so smoothly, quietly and slowly that I never had the sensation of being lifted. As I was being lifted, an X-Ray machine was mechanically moved into place and one image taken from the side, another taken directly above. Then the X-Ray arm is retracted and nothing happens for a minute or so. While I am waiting, the technician is looking at my original film and the two just taken by the machine. He/She then uses a joystick and moves the two new images until they are exactly on top of the original. They press a button and the table I am on moves to the exact position of my original film. I feel the table wiggle a little bit and then the arm that does the radiating moves into place. It would then make a whining noise and three revolutions, arcs, around my neck. When it was done I could hear it pull back as the table lowered to normal height. Within seconds the tech was by my side un-dogging the t handle fasteners that hold the mask to the table. Start to finish the entire process takes from 13-17 minutes.
One down, 34 to go.
Tomorrow, another radiation treatment and my first chemo.
Monday, October 3, 2011
Imaging and other stuff...
Shortly after my diagnosis, someone told me to hang on as things would start moving very quickly. That was followed by two weeks of waiting on appointments for the imaging needed before radiation treatment could start. With one exception, this was the hardest part of the whole ordeal: the waiting. There was really nothing else to do but think. Think that obviously no one else was taking my diagnosis very seriously or they would be doing something. Think that the tumor was growing and the cancer spreading every day I sat in my house doing nothing. In more reflective moments, I tried to remember that I was one guy and the doctors who were treating me had dozens of patients who were thinking the same thing I was. I also recognized the irony(?) of the fact that I had ignored the swollen lymph node for months and NOW I expected everyone to spring into action. You know what, some things just take time.
Finally got a phone call to set the appointment for the CT and PET scans that pretty much signal that start of treatment. The CT is no biggie just lay still for a couple of minutes. The PET required a special diet the day before consisting of nothing but protein. No sugars. No carbs. Just protein. I had two huge steaks for dinner that night and that was just fine by me. I would also be having my treatment mask made that day.
On the morning of the scans, I was given an IV and then a huge syringe of sucrose and other cool stuff. Cancer LOVES sugar and lights up brilliantly in the PET machine. I was taken to the CT machine first. Job one was making the mask. Back in the day, they would tattoo small marks on the patients neck that would be used to line up the radiation machine. I would have a plastic mesh mask made that fastens to the treatment table. A couple of small BB's would be taped to the mask and are visible to the radiation treament machine. The other bonus of the mask is it immobilizes the head and neck area allowing the machine to be very precise in where the radiation is applied. The plastic mesh is kept in a tub of warm water and starts hardening as it dries. So, a small plastic block was placed under the back of my neck and then the wet mesh was placed over and formed to my face by the technicians. It shrinks as it dries so it is important that it is completely dry before removing it from my face or it will shrink more after it is removed making it too small. This took FORTY FIVE MINUTES. I am not the least bit claustrophobic but at the end of that little party I was DONE! While I was bolted down, the technicians took a CT scan. That scan and the PET scan can be fed into some software and it creates a 3-D image of my insides that can be zoomed in and rotated. Way cool.
(this pic of the mask was taken a couple of weeks after it was made. The only thing that gave me any pause was having the mesh covering my nostrils. There is that little fear that it will plug your nose and you won't be able to breathe as you absolutely cannot open your mouth. One day I asked if they could cut around my nose without compromising the treatment. Once they did that I told them I could easily be in the mask for hours with no problem. Later on in treatment, I almost fell asleep a time or two)
Once done with the mask and the CT, on to the PET machine. And the surprise..... When I layed on the table they took my brand new mask and bolted my head down so I would be in the exact position I was for the CT. The first time they bolted me down the mask had shrunk just a little bit and it freaked me out. I gave them the "let me out now" hand signal. They told me they would help me in any way they could but it was kind of late to give me any meds to calm me down. I told them I just needed to take a breath or two and I would be ready. They also agreed to slowly remove the mask as my head poked out the other end of the doughnut shaped machine. I would need to be bolted down for right at 20 minutes. A couple of deep breathes and here we go. The techs were awesome and we got it done.
As I got up to leave, the tech asked if I wanted a CD of the imaging. "Absolutely!" Big mistake. I am not a doctor and have no clue what I am looking at. I could easily identify the tumor, it was lit up like a light bulb on the CT/PET image. And there is the lymph node that started this whole mess, lit up as well. Then I scroll down and there is my kidney, also lit up in bright yellows and reds. Oh my God, the cancer has spread to my kidneys.....
A few days later my sister-in-law in Houston (another saint!) had surfed a bit and discovered that what I was looking at was not my kidney but my bladder. A couple of trips to the restroom and that yellow and red bloom would not have been on the scan. Felt like an idiot for worrying about that....
If you aren't a doctor and they ask if you want your imaging, the correct answer is "No".
Finally got a phone call to set the appointment for the CT and PET scans that pretty much signal that start of treatment. The CT is no biggie just lay still for a couple of minutes. The PET required a special diet the day before consisting of nothing but protein. No sugars. No carbs. Just protein. I had two huge steaks for dinner that night and that was just fine by me. I would also be having my treatment mask made that day.
On the morning of the scans, I was given an IV and then a huge syringe of sucrose and other cool stuff. Cancer LOVES sugar and lights up brilliantly in the PET machine. I was taken to the CT machine first. Job one was making the mask. Back in the day, they would tattoo small marks on the patients neck that would be used to line up the radiation machine. I would have a plastic mesh mask made that fastens to the treatment table. A couple of small BB's would be taped to the mask and are visible to the radiation treament machine. The other bonus of the mask is it immobilizes the head and neck area allowing the machine to be very precise in where the radiation is applied. The plastic mesh is kept in a tub of warm water and starts hardening as it dries. So, a small plastic block was placed under the back of my neck and then the wet mesh was placed over and formed to my face by the technicians. It shrinks as it dries so it is important that it is completely dry before removing it from my face or it will shrink more after it is removed making it too small. This took FORTY FIVE MINUTES. I am not the least bit claustrophobic but at the end of that little party I was DONE! While I was bolted down, the technicians took a CT scan. That scan and the PET scan can be fed into some software and it creates a 3-D image of my insides that can be zoomed in and rotated. Way cool.
Once done with the mask and the CT, on to the PET machine. And the surprise..... When I layed on the table they took my brand new mask and bolted my head down so I would be in the exact position I was for the CT. The first time they bolted me down the mask had shrunk just a little bit and it freaked me out. I gave them the "let me out now" hand signal. They told me they would help me in any way they could but it was kind of late to give me any meds to calm me down. I told them I just needed to take a breath or two and I would be ready. They also agreed to slowly remove the mask as my head poked out the other end of the doughnut shaped machine. I would need to be bolted down for right at 20 minutes. A couple of deep breathes and here we go. The techs were awesome and we got it done.
As I got up to leave, the tech asked if I wanted a CD of the imaging. "Absolutely!" Big mistake. I am not a doctor and have no clue what I am looking at. I could easily identify the tumor, it was lit up like a light bulb on the CT/PET image. And there is the lymph node that started this whole mess, lit up as well. Then I scroll down and there is my kidney, also lit up in bright yellows and reds. Oh my God, the cancer has spread to my kidneys.....
A few days later my sister-in-law in Houston (another saint!) had surfed a bit and discovered that what I was looking at was not my kidney but my bladder. A couple of trips to the restroom and that yellow and red bloom would not have been on the scan. Felt like an idiot for worrying about that....
If you aren't a doctor and they ask if you want your imaging, the correct answer is "No".
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