All during treatment I said I did not want to remember anything. As the days pass and I return more and more to "normal", it sometimes seems that the last 9 months never really happened. Suddenly now I don't want to forget any of it. I don't want to be "Cancer Boy" the rest of my life but I also feel funny about letting all of those memories go. Which brings me to Thanksgiving...
Right after the Ten Days of Hell I was telling anyone who would listen that getting cancer was a blessing and that I was glad it had happened. I knew how stupid that sounded but I really meant it. I just wasn't sure why. After reflecting on it over the last couple of weeks, I figured some things out. First and foremost I was thankful for all of the people that were in any way involved in my treatment and recovery and there are a BUNCH of you.
But the reason I remain glad I went through what I did is that my eyes were opened to the people and things I walked by EVERY SINGLE DAY and either took them for granted or was too busy to pay any attention. For the life of me, I can't remember one thing that I was in such a hurry to do or see that I just blew right by, oblivious. The real shame would have been for me to live the rest of my life with those blinders on and miss the beauty I was stepping over and driving past.
I don't wish illness on anyone but I do have a wish for everyone who reads this. I hope that sometime during this holiday season you see or hear something for the first time only to discover it has been there the whole time. I hope that discovery leads you to search for whatever else you may have been missing.
God Bless you all and Merry Christmas,
Chris
Sunday, December 4, 2011
Monday, November 14, 2011
How are you today?
I am fine. Really, I'm good.
On October 29th 2011 at 10 am, roughly 7 months after I was diagnosed I heard Dr. K tell me there were no traces of cancer on my last PET. I knew it in my heart but hearing her say it made it official. In less than a year I had:
It is an incredible story but I am not incredible at all. In fact, I am not just being modest when I tell you that I am not particularly tough, not particularly strong. I am a very average guy. Which means if you are reading this and you have recently been diagnosed with a cancer like mine, you can beat it too. I am serious. Surround yourself with friends and family that want desperately for you to succeed. Talk to SURVIVORS ( when I felt like crap, I never drew strength from talking to other people who felt like crap. Sometimes, I felt a LOT better after helping someone who was not doing so well though.). SURVIVORS know how you feel now and they know what got them through it. Their suggestions may or may not work for you but they are always a great place to start. Look for your local SPOHNC chapter and attend a meeting. Take a pad and a pencil. Several badasses will tell you how you can be a badass, too. Take notes.
If this is your first time here, you have to read the posts backwards. Here is a link to the first one:
http://iwishihadbetternews.blogspot.com/2011/09/its-really-nice-place-to-start.html
I would love to hear from you if this blog has been helpful. Tell me if it didn't help at all, too.
God's Blessings on you all!!
chris
On October 29th 2011 at 10 am, roughly 7 months after I was diagnosed I heard Dr. K tell me there were no traces of cancer on my last PET. I knew it in my heart but hearing her say it made it official. In less than a year I had:
- Completed a half marathon
- Been diagnosed with stage iv squamous cell carcinoma in the base of my tongue
- Received 3 chemo treatments and 40 radiation treatments
- Over a dozen blood draws, 2 surgeries, over 80 head x-rays
- Drank over 150 cans of Carnation VHC
- Lost 40 pounds
- Lost my dad
- Recovered and returned to the gym and gained 25 of my lost pounds back and ran a 5k.
It is an incredible story but I am not incredible at all. In fact, I am not just being modest when I tell you that I am not particularly tough, not particularly strong. I am a very average guy. Which means if you are reading this and you have recently been diagnosed with a cancer like mine, you can beat it too. I am serious. Surround yourself with friends and family that want desperately for you to succeed. Talk to SURVIVORS ( when I felt like crap, I never drew strength from talking to other people who felt like crap. Sometimes, I felt a LOT better after helping someone who was not doing so well though.). SURVIVORS know how you feel now and they know what got them through it. Their suggestions may or may not work for you but they are always a great place to start. Look for your local SPOHNC chapter and attend a meeting. Take a pad and a pencil. Several badasses will tell you how you can be a badass, too. Take notes.
If this is your first time here, you have to read the posts backwards. Here is a link to the first one:
http://iwishihadbetternews.blogspot.com/2011/09/its-really-nice-place-to-start.html
I would love to hear from you if this blog has been helpful. Tell me if it didn't help at all, too.
God's Blessings on you all!!
chris
Saturday, November 12, 2011
SPOHNC
I was continuing to struggle with what looked like everyone else to be depression. I thought I was doing fine and really didn't understand what they were talking about. When Robin finally told me she was going to pretty much demand I talk to someone, I knew it was serious. I know a guy at church who is a psychologist so I gave him a call. We know each other well enough that he couldn't be the one to see me but I thought I would give him the Cliff Notes version of things and see where he thought I should go. He told me about the Beck Depression Inventory which is a standard testing vehicle and then told me not to bother taking it...yet. He told me it is very common for people this close to cancer treatment to test as depressed (the fact that I had also lost my dad practically insured a positive result) and that a period of time similar to the grieving process should be allowed to pass before I get too worried. He told me to seek help if I thought I needed it now but that what I was feeling was quite the norm.
Robin had also contacted a national body called SPOHNC which stands for Support for People with Oral, Head and Neck Cancer to ask about support group meetings. They put her in touch with a local guy and they spoke on the phone for quite a while (I was told later. At this point she had not told me what she was up to). She was describing the difficulties I was dealing with and he stopped her mid-sentence. "Robin, everything you have described is perfectly normal and matches my experience to a T." Later that day Robin told me we were going to the SPOHNC meeting Saturday morning. I may have mentioned it before but will mention it again here, I am NOT a support group kind of guy. I do, however, recognize my wife's wisdom and to the meeting we went.
We met in a conference room in a small hospital that is pretty quiet on weekends. It was a smaller gathering than usual and the facilitator of the meeting asked each one around the table to introduce themselves and speak briefly about their disease and treatment. Within a minute or two I felt like a complete and total jerk for feeling sorry for myself for even one minute. Most of them were 10 or more years post-treatment meaning that when they were treated they didn't get the cool IMRT machine like I did. They basically blasted away with radiation from jaw-line to collar bone. Some of them received their radiation in two treatments PER DAY. One guy ended up losing about 3 inches of his jaw bone on his left side and they filled the void with part of his left pectoral muscle. The guy sitting next to me makes absolutely no saliva and has not eaten solid food in five years; he gets his nutrition solely from Ensure. What was most amazing is the attitude of each and every one of them. They were smiling, laughing and even cracked jokes about themselves. I was sitting in a room full of badasses.
They were also full to the absolute brim with information that they couldn't wait to share with me. They knew right where I was because they had been there too. What did they tell me? How about this...
1) I was comparing myself.. my eating, my strength, pretty much everything... to the old me. It may be sad but it is no less true that the old me was gone for good. There are things about me that are changed forever. The guys at the table told me I was not the pre-cancer guy, and I was certainly not the sick guy anymore, I was this third person. And he is not bad. It was incredibly liberating to hear that from them. I had a blank slate to start with as this 3rd guy.
2) I had been most depressed about the rate my swallowing was improving. It wasn't. I found out it probably won't. Most of the guys (and they are 10+ years further along) said eating had not been fun since completing their treatment. After hearing that I took a long look at where I was and decided that if this was as good as my swallowing was going to get, I could live with it. Once I made that decision and was OK with it, any improvement I do see will just be gravy.
3) I learned several things I need to keep a pretty close eye on the rest of my life. I will need to have frequent thyroid checks as that poor organ was right in the way during radiotherapy. If it is going to give me trouble it will be in about two years. The carotid artery of people who have had radiation therapy in their neck can be problematic later in life. None of this was said in a way that scared me at all, it was more like one friend telling another what to look out for during an upcoming journey.
4) This one was my favorite! I said something about passing out in the closet and pinching the nerve in my neck. As I described the sensation I felt when I lowered my chin to my chest one guy laughed out loud and several of them just started shaking their heads affirmitively. "Thats called L'Hermittes Sign. It is caused by the chemo and radiation and lasts about 18 months." I almost started crying. I wasn't crazy! The guy who told me what it was called pulled up the Wiki page on his iPhone and slid it to me so I could read it. The symptoms were incredibly familiar.
Meeting with these guys completely turned me around. I think that day is when I started really healing.
Robin had also contacted a national body called SPOHNC which stands for Support for People with Oral, Head and Neck Cancer to ask about support group meetings. They put her in touch with a local guy and they spoke on the phone for quite a while (I was told later. At this point she had not told me what she was up to). She was describing the difficulties I was dealing with and he stopped her mid-sentence. "Robin, everything you have described is perfectly normal and matches my experience to a T." Later that day Robin told me we were going to the SPOHNC meeting Saturday morning. I may have mentioned it before but will mention it again here, I am NOT a support group kind of guy. I do, however, recognize my wife's wisdom and to the meeting we went.
We met in a conference room in a small hospital that is pretty quiet on weekends. It was a smaller gathering than usual and the facilitator of the meeting asked each one around the table to introduce themselves and speak briefly about their disease and treatment. Within a minute or two I felt like a complete and total jerk for feeling sorry for myself for even one minute. Most of them were 10 or more years post-treatment meaning that when they were treated they didn't get the cool IMRT machine like I did. They basically blasted away with radiation from jaw-line to collar bone. Some of them received their radiation in two treatments PER DAY. One guy ended up losing about 3 inches of his jaw bone on his left side and they filled the void with part of his left pectoral muscle. The guy sitting next to me makes absolutely no saliva and has not eaten solid food in five years; he gets his nutrition solely from Ensure. What was most amazing is the attitude of each and every one of them. They were smiling, laughing and even cracked jokes about themselves. I was sitting in a room full of badasses.
They were also full to the absolute brim with information that they couldn't wait to share with me. They knew right where I was because they had been there too. What did they tell me? How about this...
1) I was comparing myself.. my eating, my strength, pretty much everything... to the old me. It may be sad but it is no less true that the old me was gone for good. There are things about me that are changed forever. The guys at the table told me I was not the pre-cancer guy, and I was certainly not the sick guy anymore, I was this third person. And he is not bad. It was incredibly liberating to hear that from them. I had a blank slate to start with as this 3rd guy.
2) I had been most depressed about the rate my swallowing was improving. It wasn't. I found out it probably won't. Most of the guys (and they are 10+ years further along) said eating had not been fun since completing their treatment. After hearing that I took a long look at where I was and decided that if this was as good as my swallowing was going to get, I could live with it. Once I made that decision and was OK with it, any improvement I do see will just be gravy.
3) I learned several things I need to keep a pretty close eye on the rest of my life. I will need to have frequent thyroid checks as that poor organ was right in the way during radiotherapy. If it is going to give me trouble it will be in about two years. The carotid artery of people who have had radiation therapy in their neck can be problematic later in life. None of this was said in a way that scared me at all, it was more like one friend telling another what to look out for during an upcoming journey.
4) This one was my favorite! I said something about passing out in the closet and pinching the nerve in my neck. As I described the sensation I felt when I lowered my chin to my chest one guy laughed out loud and several of them just started shaking their heads affirmitively. "Thats called L'Hermittes Sign. It is caused by the chemo and radiation and lasts about 18 months." I almost started crying. I wasn't crazy! The guy who told me what it was called pulled up the Wiki page on his iPhone and slid it to me so I could read it. The symptoms were incredibly familiar.
Meeting with these guys completely turned me around. I think that day is when I started really healing.
Monday, November 7, 2011
Oops I Did It Again..
Some amazing things had been happening with my eating habits. I was very close to maintaining the 3000 or so calorie level I kept during treatment but was adding more and more solid foods. Lots of ice cream, milkshakes, etc. I couldn't taste anything which really takes a lot of the fun out of meals but I could meet family and friends out on the town and share a meal. Very, very cool. I remember asking Dr. K when my taste buds would return and she said four weeks. Later on, the topic came up at Dr. G's office and I asked him the same question. His answer was 18 months to 4 years. Ouch.
Turns out they may both be right. Robin and I were doing something in Arlington and it got close to lunch time. We knew there was a Pappasito's very near by and that used to be one of our favorites. It was always possible that I would be unable to eat whatever I ordered wherever we would have gone, but I was willing to try. The cheese enchiladas tasted like heaven. What had tasted like black and white for close to four months now tasted like color in HD. I still can't do hot....yet. I miss jalapenos. Now for the bad news, I still can't taste sweet. People I have spoken to who would know say that the taste of sweet may be many months to years away. I will be so happy to have it back when it does come back.
Oops, I Did It Again
I have a morning ritual that I follow almost every day. Shower, shave my head, dry off, deodorant, walk to closet, underwear, socks, pants, sit down and put on boots, stand up and put on shirt. Every day, the same ritual. Well, this morning went in the same order until the "stand up and put on shirt" step. This day, I stood up and got light headed. I have been light headed before and I have always just waited a moment and let it pass. When I came to, I had fallen forward, hit my head on a shelf in the closet and split the skin from the corner of my left eye across the bridge of my nose and cracked my eye orbit. My face was covered in blood by the time Robin got to me. She had heard the crash and thought I had fallen in the shower. I knew it wasn't good the moment I woke up. We dressed the cut and made sure I was otherwise OK. Then I got something to eat and went on to work. A week or so after the fall, I noticed that when I dropped my chin to my chest I felt something like an electric shock down my buttocks all the way to my heels. Great. Apparently I had hit my head hard enough to pinch a nerve in my neck. There was no way I was strong enough to deal with anything to do with my neck. It would have to wait.
As I said a moment ago, I was eating like crazy. I was not, however, gaining any weight. Part of me knew that our bodies can use a large amount of calories just repairing itself. Between the radiation and the chemo, there was plenty to be repaired. The longer I went without gaining weight the more I started to wonder if there might be something else wrong with me. There were a couple of other things that had started to have an impact on my attitude at the same time. My swallowing was NOT coming along at all. I could chew my food thoroughly and swallow and everything would make it to roughly my Adam's Apple and stop. No amount of additional swallowing could make it move. I had to wash every swallow down with a large gulp of water. With the amount of food I was eating, it took 2 liters of water to get it all down. It is also a very slow process. I started becoming a little self conscious about how long it took me to finish a meal. No one ever said anything but I knew it was a problem. The ringing in my ears was at max volume and will likely not get better. I had always accepted it but now adding that on top of everything else and I am suddenly in a pretty deep funk.
Robin had gotten to the point where she strongly urged me to speak with someone and get some help. I am not one to readily admit I need help and definitely not one to seek it out. It didn't take long for Robin to convince me it was time do something. She called national group that helps people with my kind of cancer, SPOHNC. The folks at Support for People with Oral, Head and Neck Cancer were awesome. They directed Robin to a support group meeting on a Saturday morning. By the way, I am also NOT a support group guy. I went anyway and it was another major turning point in my recovery from treatment.
Turns out they may both be right. Robin and I were doing something in Arlington and it got close to lunch time. We knew there was a Pappasito's very near by and that used to be one of our favorites. It was always possible that I would be unable to eat whatever I ordered wherever we would have gone, but I was willing to try. The cheese enchiladas tasted like heaven. What had tasted like black and white for close to four months now tasted like color in HD. I still can't do hot....yet. I miss jalapenos. Now for the bad news, I still can't taste sweet. People I have spoken to who would know say that the taste of sweet may be many months to years away. I will be so happy to have it back when it does come back.
Oops, I Did It Again
I have a morning ritual that I follow almost every day. Shower, shave my head, dry off, deodorant, walk to closet, underwear, socks, pants, sit down and put on boots, stand up and put on shirt. Every day, the same ritual. Well, this morning went in the same order until the "stand up and put on shirt" step. This day, I stood up and got light headed. I have been light headed before and I have always just waited a moment and let it pass. When I came to, I had fallen forward, hit my head on a shelf in the closet and split the skin from the corner of my left eye across the bridge of my nose and cracked my eye orbit. My face was covered in blood by the time Robin got to me. She had heard the crash and thought I had fallen in the shower. I knew it wasn't good the moment I woke up. We dressed the cut and made sure I was otherwise OK. Then I got something to eat and went on to work. A week or so after the fall, I noticed that when I dropped my chin to my chest I felt something like an electric shock down my buttocks all the way to my heels. Great. Apparently I had hit my head hard enough to pinch a nerve in my neck. There was no way I was strong enough to deal with anything to do with my neck. It would have to wait.
As I said a moment ago, I was eating like crazy. I was not, however, gaining any weight. Part of me knew that our bodies can use a large amount of calories just repairing itself. Between the radiation and the chemo, there was plenty to be repaired. The longer I went without gaining weight the more I started to wonder if there might be something else wrong with me. There were a couple of other things that had started to have an impact on my attitude at the same time. My swallowing was NOT coming along at all. I could chew my food thoroughly and swallow and everything would make it to roughly my Adam's Apple and stop. No amount of additional swallowing could make it move. I had to wash every swallow down with a large gulp of water. With the amount of food I was eating, it took 2 liters of water to get it all down. It is also a very slow process. I started becoming a little self conscious about how long it took me to finish a meal. No one ever said anything but I knew it was a problem. The ringing in my ears was at max volume and will likely not get better. I had always accepted it but now adding that on top of everything else and I am suddenly in a pretty deep funk.
Robin had gotten to the point where she strongly urged me to speak with someone and get some help. I am not one to readily admit I need help and definitely not one to seek it out. It didn't take long for Robin to convince me it was time do something. She called national group that helps people with my kind of cancer, SPOHNC. The folks at Support for People with Oral, Head and Neck Cancer were awesome. They directed Robin to a support group meeting on a Saturday morning. By the way, I am also NOT a support group guy. I went anyway and it was another major turning point in my recovery from treatment.
Well?
Time for the follow up PET. I was all smiles because in my heart I knew I was done. Showed up at Radialogy Associates at 7:00. Yes, I am an early riser. The day before I followed the same diet I had for my first PET: no sugar or carbs, nothing but protein for 24 hours. Change into scrubs and go back to my room. The tech finds a vein after two tries and takes a little blood from the IV to make sure my glucose level is OK before giving me the radioactive sugar. After he pumps that into the IV, they turn out the lights and I lean back in a huge recliner for a little over an hour as the solution works it's way through my system.
An hour later, a little knock on the door and it's off to the scanner. I don't have to use the mask any more as they are just looking for cancer this time and not using the imaging for other purposes. There are a couple of breathing instructions, "Breathe in. Hold it." Stuff like that. No biggie. Since RA is right next door to the cancer center, I ran next door and said hi to Deb and T. It was really good to see them. They thought I was looking pretty good, especially my neck. That reminds me of something I should have put in the "Odds and Ends" post....
Sometime between the second and third chemo, I had been at work and shortly after drinking my lunch had gotten sick. I cleaned up a bit and then went and sat in my truck for about 20 minutes. When I returned to the area I was working in I discovered that someone had stolen approximately $1,000 worth of my tools. The worst part of this disaster was that one of the things in my stolen bag was an $800 Fluke meter of my bosses which I had to replace. Next thing you know it is 3:00pm and time to head to Las Colinas for radiation. When I pulled up in the parking lot I just broke down and cried. Several minutes later I gathered myself and pasted a smile on my face and went inside. One by one everyone I passed told me how good I looked. If one person had said it, I would have said they were just being nice. Two might be a coincidence. But it was everyone! This was crazy! The only difference I could tell was that I was smiling. I hadn't thought much about it but I can almost guarantee that no one in that office had seen me smile in a long time. I made it a point to smile every day after that.
A week passes and it's time to go back to the cancer center for them to read my PET results. Dr. K read the results and it was not at all what I expected. "The tumor is 95% gone and all but one of the lymph nodes responded perfectly." What the hell is this 95% crap? I know she saw my shoulders slump and she quickly added that I was actually a little ahead of schedule. Even this long since my last treatment the radiation was still doing it's thing. I don't know where I got the idea that I would get a 100% clean bill of health at this reading but it was most certainly my expectation and I was bummed. Not only that, the one lymph node concerned them.
The lymph node decision went back to my ENT, Dr. G. He told me he wanted the radiologist that read the scan to re-read it with him so they were looking at the same thing. Shortly after that meeting I received a call from his office setting up the surgery to remove the remaining node. The surgery would be at Baylor Grapevine (the same place I had my tongue biopsy). If it is possible to love a hospital, I love Baylor Grapevine. Their out-patient setup is amazing. Even in the operating suite it took them six sticks to get an IV going. A little "happy juice" and I could have cared less.
The surgery was no big deal at all. For whatever reason, I respond really well to the anesthesia. It knocks me out when it is supposed to and when it's time to wake up and leave, I can wake up and leave. During admissions, one of the questions they ask is if you have passed out recently. I thought about it and then decided to tell the truth, "Yes, I have". I got to wear a bracelet that I actually left on for several weeks afterward. The primary meaning is obvious but I kept it on as a spiritual reminder that even though I was on a high right now, I had best be on my guard!
A week later, I went to Dr. G's office for a routine post-surgery follow up. He walked in and was as happy and animated as I had ever seen him. "The pathology came back on the lymph node and it was radiation damage. That is very good news." What else could it have been? I had never even considered the fact that had it been cancer, I would have been in very deep doo-doo. I never asked the question and never even considered the possibility that it could have been very bad news. Ignorance is bliss, I guess.
Next up, another PET in 3 months.
An hour later, a little knock on the door and it's off to the scanner. I don't have to use the mask any more as they are just looking for cancer this time and not using the imaging for other purposes. There are a couple of breathing instructions, "Breathe in. Hold it." Stuff like that. No biggie. Since RA is right next door to the cancer center, I ran next door and said hi to Deb and T. It was really good to see them. They thought I was looking pretty good, especially my neck. That reminds me of something I should have put in the "Odds and Ends" post....
Sometime between the second and third chemo, I had been at work and shortly after drinking my lunch had gotten sick. I cleaned up a bit and then went and sat in my truck for about 20 minutes. When I returned to the area I was working in I discovered that someone had stolen approximately $1,000 worth of my tools. The worst part of this disaster was that one of the things in my stolen bag was an $800 Fluke meter of my bosses which I had to replace. Next thing you know it is 3:00pm and time to head to Las Colinas for radiation. When I pulled up in the parking lot I just broke down and cried. Several minutes later I gathered myself and pasted a smile on my face and went inside. One by one everyone I passed told me how good I looked. If one person had said it, I would have said they were just being nice. Two might be a coincidence. But it was everyone! This was crazy! The only difference I could tell was that I was smiling. I hadn't thought much about it but I can almost guarantee that no one in that office had seen me smile in a long time. I made it a point to smile every day after that.
A week passes and it's time to go back to the cancer center for them to read my PET results. Dr. K read the results and it was not at all what I expected. "The tumor is 95% gone and all but one of the lymph nodes responded perfectly." What the hell is this 95% crap? I know she saw my shoulders slump and she quickly added that I was actually a little ahead of schedule. Even this long since my last treatment the radiation was still doing it's thing. I don't know where I got the idea that I would get a 100% clean bill of health at this reading but it was most certainly my expectation and I was bummed. Not only that, the one lymph node concerned them.
The lymph node decision went back to my ENT, Dr. G. He told me he wanted the radiologist that read the scan to re-read it with him so they were looking at the same thing. Shortly after that meeting I received a call from his office setting up the surgery to remove the remaining node. The surgery would be at Baylor Grapevine (the same place I had my tongue biopsy). If it is possible to love a hospital, I love Baylor Grapevine. Their out-patient setup is amazing. Even in the operating suite it took them six sticks to get an IV going. A little "happy juice" and I could have cared less.
The surgery was no big deal at all. For whatever reason, I respond really well to the anesthesia. It knocks me out when it is supposed to and when it's time to wake up and leave, I can wake up and leave. During admissions, one of the questions they ask is if you have passed out recently. I thought about it and then decided to tell the truth, "Yes, I have". I got to wear a bracelet that I actually left on for several weeks afterward. The primary meaning is obvious but I kept it on as a spiritual reminder that even though I was on a high right now, I had best be on my guard!
A week later, I went to Dr. G's office for a routine post-surgery follow up. He walked in and was as happy and animated as I had ever seen him. "The pathology came back on the lymph node and it was radiation damage. That is very good news." What else could it have been? I had never even considered the fact that had it been cancer, I would have been in very deep doo-doo. I never asked the question and never even considered the possibility that it could have been very bad news. Ignorance is bliss, I guess.
Next up, another PET in 3 months.
Sunday, November 6, 2011
Odds and Ends
A couple of things came to mind recently that I'm not really sure where they fit in the timeline but are worth writing about.
Water
From the second chemo on I had an obsession with water. A very, very frequent daydream of mine (especially when the meds kicked in) was standing in the backyard with a garden hose just letting the water run over my head. Brita or someone had a commercial running about that time that follows a drop of water over a waterfall, into a lake and then filtering down to an underground aquifier. I was convinced it was some of the greatest footage ever placed on film and was almost moved to tears. A friend of Robin's had suggested I spray Willard's Water on my neck (HIGHLY Recommended!) to aid in the healing process. It is a concentrate that we diluted and placed in a spray bottle. I would sit on the couch and periodically spray my neck and eventually even my shaved head. It was almost a spriritual experience. I haven't discussed this with any of my support group friends to see if they had a similar experience. I am probably just wierd.
The Rangers
I had started treatment in March and things had started getting interesting in April which happens to be the start of baseball season. I have been a baseball fan most of my adult life and roughly split my emotions between the Astros, the team of my youth and the Rangers, my hometown club. Once I was unable to work, there was eating, sleeping, and baseball and that was about it. I was always working towards seeing the next game. If I was having a bad day, I would look at the schedule and know all I had to do was make it to 7:30 and then I could watch the game. They didn't even know it but they helped me through some rough times.
Prayers
I know I had a post relating to a specific spiritual event during treatment but there are a few other things that happened that bear repeating. Later in treatment when my neck was nasty and I didn't have much of a voice, I put a fly fishing rod on Craigslist. It had gone a couple of weeks and I finally had an email wanting more info. The guy and I swapped several email and text messages until he had gotten serious enough that he wanted to see the rod. The appointed day arrived and as luck would have it was stormy as all get out. Lightning everywhere and a driving rain that would come and go. I texted the guy back and told him I was pretty sure he didn't want to wave a 10' fiberglass rod over his head in this weather. He was committed and we agreed to meet in a Lowes parking lot. He brought a friend who was an experienced fly fisherman (the guy I had been texting was just learning) who brought a reel and strung the rod. He cast in the rain storm for about 10 minutes and told his friend it was a very good rod and worth my asking price. As we were finishing the transaction, he asked "If you don't mind me asking, what is wrong with your neck?" I told him about the cancer and treatment. Then he says, "My friend and I are pastors at The Village Church in Lewisville. Can we pray for you?" So he, his friend, Robin and I held hands in a circle in a driving rain in front of a Lowe's as the two pastors prayed for us.
One day we were in a Quiktrip getting iced tea and as Robin opened her wallet to pay, several business cards fell to the floor. I bent over and picked up a few as did a man with a small child who was in line behind us. I thanked him in my raspy voice and we walked to the car. As Robin reached for the door handle, I felt a tug on my sleeve. It was the guy with the kid who had been behind us in line. "I don't know what is wrong with your voice but I feel like I am meant to pray with you. Would that be OK?" Once again we are in a circle in a parking lot with people we don't know listening to them pray for Robin and I.
It made me think of how many times I had a fleeting thought of praying for someone I had seen somewhere. I had always been too busy or too scared of being embarrassed or rejected so I just kept moving.
Weezy
Weezy is my oldest son, Alex's dog. When Alex moved back home from Austin, Weezy came back with him. We are dog people. All of us. The last few years before the twins moved to Abilene for school, they worked at a large dog boarding house in Southlake. Robin and I even helped out during the holidays if they were short people. As an aside, I will forever treasure the times when my entire family was working together. What an amazing gift! Back to Weezy... I don't mind if dogs sleep on my bed as long as they are on top of the covers and at my feet. I'm asleep anyway and they dont bother me. Well, for several weeks (months?) before my diagnosis Weezy had tried to sleep on top of my head. Not near my head, on top of it. He would sniff my head and neck. It was not allowed and it was driving me crazy. He is a very good dog and is usually very obediant. At some point we just decided he had turned wierd. Between my second and third chemo, he suddenly moved back to the foot of the bed. It was several days later before Robin and I put 2 and 2 together. Could Weezy have smelled or sensed the tumor? We have all seen the stories on the news and it is not a particularly rare phenominon. I am convinced that was the case.
Unfortunately, now no one wants Weezy to sleep with them.
Water
From the second chemo on I had an obsession with water. A very, very frequent daydream of mine (especially when the meds kicked in) was standing in the backyard with a garden hose just letting the water run over my head. Brita or someone had a commercial running about that time that follows a drop of water over a waterfall, into a lake and then filtering down to an underground aquifier. I was convinced it was some of the greatest footage ever placed on film and was almost moved to tears. A friend of Robin's had suggested I spray Willard's Water on my neck (HIGHLY Recommended!) to aid in the healing process. It is a concentrate that we diluted and placed in a spray bottle. I would sit on the couch and periodically spray my neck and eventually even my shaved head. It was almost a spriritual experience. I haven't discussed this with any of my support group friends to see if they had a similar experience. I am probably just wierd.
The Rangers
I had started treatment in March and things had started getting interesting in April which happens to be the start of baseball season. I have been a baseball fan most of my adult life and roughly split my emotions between the Astros, the team of my youth and the Rangers, my hometown club. Once I was unable to work, there was eating, sleeping, and baseball and that was about it. I was always working towards seeing the next game. If I was having a bad day, I would look at the schedule and know all I had to do was make it to 7:30 and then I could watch the game. They didn't even know it but they helped me through some rough times.
Prayers
I know I had a post relating to a specific spiritual event during treatment but there are a few other things that happened that bear repeating. Later in treatment when my neck was nasty and I didn't have much of a voice, I put a fly fishing rod on Craigslist. It had gone a couple of weeks and I finally had an email wanting more info. The guy and I swapped several email and text messages until he had gotten serious enough that he wanted to see the rod. The appointed day arrived and as luck would have it was stormy as all get out. Lightning everywhere and a driving rain that would come and go. I texted the guy back and told him I was pretty sure he didn't want to wave a 10' fiberglass rod over his head in this weather. He was committed and we agreed to meet in a Lowes parking lot. He brought a friend who was an experienced fly fisherman (the guy I had been texting was just learning) who brought a reel and strung the rod. He cast in the rain storm for about 10 minutes and told his friend it was a very good rod and worth my asking price. As we were finishing the transaction, he asked "If you don't mind me asking, what is wrong with your neck?" I told him about the cancer and treatment. Then he says, "My friend and I are pastors at The Village Church in Lewisville. Can we pray for you?" So he, his friend, Robin and I held hands in a circle in a driving rain in front of a Lowe's as the two pastors prayed for us.
One day we were in a Quiktrip getting iced tea and as Robin opened her wallet to pay, several business cards fell to the floor. I bent over and picked up a few as did a man with a small child who was in line behind us. I thanked him in my raspy voice and we walked to the car. As Robin reached for the door handle, I felt a tug on my sleeve. It was the guy with the kid who had been behind us in line. "I don't know what is wrong with your voice but I feel like I am meant to pray with you. Would that be OK?" Once again we are in a circle in a parking lot with people we don't know listening to them pray for Robin and I.
It made me think of how many times I had a fleeting thought of praying for someone I had seen somewhere. I had always been too busy or too scared of being embarrassed or rejected so I just kept moving.
Weezy
Weezy is my oldest son, Alex's dog. When Alex moved back home from Austin, Weezy came back with him. We are dog people. All of us. The last few years before the twins moved to Abilene for school, they worked at a large dog boarding house in Southlake. Robin and I even helped out during the holidays if they were short people. As an aside, I will forever treasure the times when my entire family was working together. What an amazing gift! Back to Weezy... I don't mind if dogs sleep on my bed as long as they are on top of the covers and at my feet. I'm asleep anyway and they dont bother me. Well, for several weeks (months?) before my diagnosis Weezy had tried to sleep on top of my head. Not near my head, on top of it. He would sniff my head and neck. It was not allowed and it was driving me crazy. He is a very good dog and is usually very obediant. At some point we just decided he had turned wierd. Between my second and third chemo, he suddenly moved back to the foot of the bed. It was several days later before Robin and I put 2 and 2 together. Could Weezy have smelled or sensed the tumor? We have all seen the stories on the news and it is not a particularly rare phenominon. I am convinced that was the case.
Unfortunately, now no one wants Weezy to sleep with them.
Saturday, November 5, 2011
The Rest of the Story
As fast as things had gone down hill, now they were heading right back up again. I don't remember if it was Day 11 or Day 12 exactly, but in the same way I had felt dramatically worse every day now I was feeling stronger every morning. In pretty short order, I decided I was done with the Fentanyl patches and just didn't put a new one on. Ok, that didn't work out so well so I asked Deb for a script that was half the strength of the one I had been using. I didn't even finish the half-strength box before I didn't need them at all. I also cold-turkey quit the anti-depressants like you are not supposed to do and while it was weird for a week or so, haven't had to go back. The goofy side effects from them continued for several months.
My neck skin was healing much better than expected and all of the docs ooh'ed and ahh'ed over the fact that I wasn't going to scar, especially in the two nasty spots on my collarbone. I was as spritually high at this point as I have ever been in my life. A huge crowd of friends and family had gathered around me and carried me across the finish line. I wanted EVERYONE to know how cool that was. As soon as I was off the pain meds, I went back to work. I ended up missing a little over 3 weeks of work.
I should talk about that for a moment. I may have missed 3 weeks of work but I was probably useless to them for at least two more. The great people I worked for knew it was important to me to, as best I could, continue normal life during treatment. When things started to get tough, they found things I could do so I could still contribute. I know a few times I fell asleep at my desk and when I woke someone had turned the lights off. They certainly watched out for me. They were my friends, prayer warriors and cheerleaders and played a huge part in my success.
As good as I was feeling, there were a few things that weren't progressing as fast as I would like. My voice and swallowing ability first on that list. I was told the follow up PET scan would be four weeks after my last treatment to allow everything to heal. The PET picks up cellular activity and a whole area healing would light up enough to possibly hide any potential remaining cancer. About a week before the PET, I went by the Center to let them know I wasn't healed enough for the PET. They were very kind and assured me 1) you will NOT be 100% healed in four weeks, 2) you are on or a little ahead of schedule in the healing timetable and 3) we ARE doing the PET next week. Come on, Chris...relax.
My neck skin was healing much better than expected and all of the docs ooh'ed and ahh'ed over the fact that I wasn't going to scar, especially in the two nasty spots on my collarbone. I was as spritually high at this point as I have ever been in my life. A huge crowd of friends and family had gathered around me and carried me across the finish line. I wanted EVERYONE to know how cool that was. As soon as I was off the pain meds, I went back to work. I ended up missing a little over 3 weeks of work.
I should talk about that for a moment. I may have missed 3 weeks of work but I was probably useless to them for at least two more. The great people I worked for knew it was important to me to, as best I could, continue normal life during treatment. When things started to get tough, they found things I could do so I could still contribute. I know a few times I fell asleep at my desk and when I woke someone had turned the lights off. They certainly watched out for me. They were my friends, prayer warriors and cheerleaders and played a huge part in my success.
As good as I was feeling, there were a few things that weren't progressing as fast as I would like. My voice and swallowing ability first on that list. I was told the follow up PET scan would be four weeks after my last treatment to allow everything to heal. The PET picks up cellular activity and a whole area healing would light up enough to possibly hide any potential remaining cancer. About a week before the PET, I went by the Center to let them know I wasn't healed enough for the PET. They were very kind and assured me 1) you will NOT be 100% healed in four weeks, 2) you are on or a little ahead of schedule in the healing timetable and 3) we ARE doing the PET next week. Come on, Chris...relax.
Friday, November 4, 2011
Release the Hounds
It had finally arrived, the last day of treatment!
I stepped up onto the scale and by the time I stopped moving the little sliding weights I had lost almost exactly 30 pounds which was the red line limit of how much they would allow me to lose before forcing me to get a stomach feeding tube. In my head, I spun around and did an end zone dance right in front of Dr. K. Booyah!
It was all smiles from everyone as I made my way back to the radiation suite for the 40th and last time. I had maintained a "no photographs" policy for the duration of the treatment. Early on when asked I had said there are some things I just dont want to remember. Robin asked again that day if she could take a few pictures. Things were different now and I relented. She took one of me bolted down to the table and a couple of both the old and new masks. I had also decided earlier if they offered me the masks I would say thanks but no thanks. Same reason, memories I just didn't want. I hop up on the table, get bolted down, and the remainder of the process went smoothly just like it had 99% of the time before. The door opens, they unbolt me and thats it.
There is a bell mounted right outside the door of the treatment room. This bell is rung by the patient after their last treatment and can be heard throughout the office. Robin got the camera phone ready and I rang the bell three times. Most everyone involved in my treatment was there and there was applause, a certificate and a gift box of chocolates. They offered me the newest mask and I changed my mind on it too and accepted it. Then they said they would see me in four weeks for the follow up PET scan. Nothing until then, no blood draws....no weigh ins. That was a good day.
Sorry for the quality, it's a picture of a picture. This was taken Mother's Day 2010. I think every man should pose for pictures for his wife once every 25 years...
**** NOTE ***** If you read the rest of this post you must PROMISE me that you will read the next post as well. It's fixing to get ugly but the rest of the story is it gets better and you need to read the rest of the story!
Ok, if you are still reading, here we go.
Not only does the little bell signal the end of treatment, it also wakes the Hounds of Hell. If you remember, the OJD told me my pain would peak at ten days after my last treatment. Throughout the entire previous eight weeks I had strutted around the Cancer Center like I owned the place and acted like I was just too tough for cancer to even mess with. Around Day 3 of 10 I started losing that cockiness. I am guessing that Day 3 was the day I felt the first effects of the first "Boost Dose" that had been given exactly a week prior. It wasn't just a little worse, I felt like hell. Day 4 didn't seem like only one day worse than 3. By Day 5 my bravado was long gone and I was scared. Five more days?!
The problem is you can't call Time Out. What is coming is already on the way. There is no stopping it. In the hospital, when they check on you they ask you to rate your pain on a scale of 0 to 10. Well, I was getting a whole new scale.
Day 6 I remember being curled up in a ball on our living room couch with my head on Robin's lap and saying "I'm not gonna make it." I have no idea what that meant, there is nothing left to do BUT make it. I was very diligent on keeping my Fentanyl patches fresh. They are time release so every so often I would feel the patch kick in and would close my eyes. I would always say a little prayer "When I open my eyes, please let it be tomorrow." My eyes usually came open after about an hour. I don't remember Days 7 - 10. I can tell you OJD did not over-sell the experience.
Over the 8 week treatment period I had lost exactly 30 pounds. Between Day 6 and Day 10 I lost 10 more. I had started treatment at around 210 and at my lowest weighed 165.
I stepped up onto the scale and by the time I stopped moving the little sliding weights I had lost almost exactly 30 pounds which was the red line limit of how much they would allow me to lose before forcing me to get a stomach feeding tube. In my head, I spun around and did an end zone dance right in front of Dr. K. Booyah!
It was all smiles from everyone as I made my way back to the radiation suite for the 40th and last time. I had maintained a "no photographs" policy for the duration of the treatment. Early on when asked I had said there are some things I just dont want to remember. Robin asked again that day if she could take a few pictures. Things were different now and I relented. She took one of me bolted down to the table and a couple of both the old and new masks. I had also decided earlier if they offered me the masks I would say thanks but no thanks. Same reason, memories I just didn't want. I hop up on the table, get bolted down, and the remainder of the process went smoothly just like it had 99% of the time before. The door opens, they unbolt me and thats it.
There is a bell mounted right outside the door of the treatment room. This bell is rung by the patient after their last treatment and can be heard throughout the office. Robin got the camera phone ready and I rang the bell three times. Most everyone involved in my treatment was there and there was applause, a certificate and a gift box of chocolates. They offered me the newest mask and I changed my mind on it too and accepted it. Then they said they would see me in four weeks for the follow up PET scan. Nothing until then, no blood draws....no weigh ins. That was a good day.
Sorry for the quality, it's a picture of a picture. This was taken Mother's Day 2010. I think every man should pose for pictures for his wife once every 25 years...
Bell Day (a little over a year later)
Ok, if you are still reading, here we go.
Not only does the little bell signal the end of treatment, it also wakes the Hounds of Hell. If you remember, the OJD told me my pain would peak at ten days after my last treatment. Throughout the entire previous eight weeks I had strutted around the Cancer Center like I owned the place and acted like I was just too tough for cancer to even mess with. Around Day 3 of 10 I started losing that cockiness. I am guessing that Day 3 was the day I felt the first effects of the first "Boost Dose" that had been given exactly a week prior. It wasn't just a little worse, I felt like hell. Day 4 didn't seem like only one day worse than 3. By Day 5 my bravado was long gone and I was scared. Five more days?!
The problem is you can't call Time Out. What is coming is already on the way. There is no stopping it. In the hospital, when they check on you they ask you to rate your pain on a scale of 0 to 10. Well, I was getting a whole new scale.
Day 6 I remember being curled up in a ball on our living room couch with my head on Robin's lap and saying "I'm not gonna make it." I have no idea what that meant, there is nothing left to do BUT make it. I was very diligent on keeping my Fentanyl patches fresh. They are time release so every so often I would feel the patch kick in and would close my eyes. I would always say a little prayer "When I open my eyes, please let it be tomorrow." My eyes usually came open after about an hour. I don't remember Days 7 - 10. I can tell you OJD did not over-sell the experience.
Over the 8 week treatment period I had lost exactly 30 pounds. Between Day 6 and Day 10 I lost 10 more. I had started treatment at around 210 and at my lowest weighed 165.
Tuesday, November 1, 2011
The End! (ehhh, not so much...)
I haven't talked about Doogie much lately because there hasn't been much to say. One time, Doogie said he was going to talk to T and make sure she was actually putting the chemo in the bag because I wasn't really showing the effects the way most do. I was very scared of the third and final chemo because my strength was way down and the radiation was kicking my butt. Doogie said that most of his patients had said the second chemo was the worst and I was already weeks past that one. Well, you're not done till you've done all three. Let's do it.
You mean pleasant like today?
It wasn't bravery or toughness but it didn't phase me a bit. Seriously, at this point I was very committed. Let's do the whole thing and let's do it right so I don't have to do any of it again! That's not to say that I knew there was more or was OK with it. A little part of me felt defeated because tomorrow was the day circled on my calendar when I was DONE. To find out there was more to it didn't surprise me much. By the way, the words of OJD above may look harsh but they weren't delivered harshly at all. He just wanted me to know what I was up against and I appreciated it greatly.
It ended up taking five sticks because my veins were trashed. Finally got a good stick in the top of my right hand. This one took the normal four hours and there was a party atmosphere in the room. A very sick man spent an hour or so in the suite and we tried our best to be respectful. When he left, we had the place to ourselves and got a little rowdy. T and the crew made the last one very special.
The next day was Thursday and my weekly meeting with Dr. K. I guess I felt bad enough to get ornery and I had Robin with me, of course, so we were going to let her know how we felt about several things. Fortunately for all concerned, she was on vacation and had another doctor see her patients. I don't remember the docs name and I feel horrible about that because he gave me more information in our 30 minutes or so together than I had gotten from Dr. K in total! Looking back, it was not entirely her fault. I had gotten pissed off early on and was probably not a very good listener anyway. For the sake of the blog, I will call this guy OJD (Old Jewish Doctor).
OJD walked into the patient room and introduced himself. He explained that Dr. K was on vacation and he was seeing everyone this week. He also said he doesn't rely on patient files so like it or not I was going to get a thorough once-over. I didn't mind at all. We talked about my weight. We talked about the skin on my neck which had two pretty bad looking, oozy spots at the points of my collar bone. He gloved-up and felt where the tumor used to be (not fun). He asked how many treatments I had left. I smiled and said tomorrow is my last one. He didn't smile but asked if I was ready.
"Hell yes, I'm ready and glad this is over."
He kind of looked over the top of his glasses like you would expect an OJD to do. "That's not what I'm talking about. Are you ready for the next two weeks?" He could tell by the look on my face that I had not a clue what he was talking about. He explained:
Remember how you didn't feel any effects of the radiation for the first few weeks? Not only are the physical effects of the radiation delayed but they are also cumulative. They build up over time. Your last 10 treatments will have been a "boost" dose specifically targeted at the tumor site. Tomorrow may be your last treatment but you will not physically feel the full effect of the 40 treatments until approximately 10 days after the last treatment. You know how microwave dinners tell you to leave them covered for several minutes after removing them from the oven because they are still cooking. We've been cooking you for 40 days. The next 10 days will not be pleasant.
You mean pleasant like today?
It wasn't bravery or toughness but it didn't phase me a bit. Seriously, at this point I was very committed. Let's do the whole thing and let's do it right so I don't have to do any of it again! That's not to say that I knew there was more or was OK with it. A little part of me felt defeated because tomorrow was the day circled on my calendar when I was DONE. To find out there was more to it didn't surprise me much. By the way, the words of OJD above may look harsh but they weren't delivered harshly at all. He just wanted me to know what I was up against and I appreciated it greatly.
Sunday, October 30, 2011
Home Stretch
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.
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.
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".
Thursday, September 29, 2011
Commercial Break
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.
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.
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.
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