I am a film buff. If I like a movie I will watch it several times and sometimes even memorize some of the dialog. I have several favorites but "Saving Private Ryan" is a very special film to me. It is critically acclaimed for it's cinematography and it is an incredible story. The scene that makes this film so meaningful to me may be a bit of a surprise.
The setting is Europe just days after the invasion at Normandy. Capt. John Miller and seven men search for Private James Patrick Ryan to tell him that his brothers have died in combat and that he, as the last remaining male in his family is to return home. This is well before the days of digital communications, GPS, etc. and the entire region was shrouded in the fog of war. This was no easy task. After weeks of walking across western Europe, Capt. Miller finds Private Ryan but loses nearly all of his men and his own life in the process. The scene which changed me is the last scene of the movie.
Private Ryan, decades from the events of Normandy, returns to Arlington National Cemetary to pay his respects to the man who gave the ultimate sacrifice while tracking him down to send him home. His wife and family are with him but seem to be puzzled by Ryan's nervousness. As he stands in front of the headstone of Capt. Miller he turns to his wife and asks "Tell me I have been a good man?" His wife starts to answer and looks at the headstone. She realizes her husband was there to settle accounts...to pay a debt.
I know it is just a movie but that scene changed the way I viewed the phrase "a good man". The men I know that are good men have many things in common. If you tell them they are "a good man" they will deny it, some of them even bristle a bit. They will tell you they are not perfect and perhaps even share some of their flaws. Yet even their flaws make them good men. They know grace and mercy because they recognize they have been shown grace and mercy. They have a standard of conduct they hold themselves to and if they were to honestly describe it to you, it would be apparent to both of you that it is unattainable. Yet that standard is what drives them and makes them who they are. Some of them are large, mountains of men and others so average in appearance that you might walk right past them and pay no mind yet they all would place themselves in physical, political or financial harms way to help someone in need. Without hesitation.
Many people say these men are much too trusting and easy to take advantage of. But to trust someone is to trust them completely; it is the only way they know how to trust. It's as if no matter who they meet, they only see the good in that person. They love the same way they trust, completely. Done in half-measures it may be something else but it is not love.
Tuesday, December 31, 2013
Tuesday, November 27, 2012
Anniversaries galore!!
(wrote this a while back and for some reason never published it. someone might find something useful here)
With my diagnosis being in February 2011, it seems like every few days or so it is the one-year anniversary of something, first radiation, first chemo, first PET scan. I haven't posted in a while so I should catch you up.
I have gained most of my weight back. In fact, I could have probably gained it all back but decided to stay at the 190 mark or so which is about 20 pounds lighter than my old weight. I must confess that I really wanted to stay at 185 but blew by it so fast that I dropped anchor at 190. I have been hitting the gym like a madman and running every chance I get. My body changed dramatically through the ordeal and in a good way. My wife tells me I am leaner and I have stayed one waist size smaller for the same weight. However, I do not recommend my weight loss program...
I spent about 8 weeks in swallow therapy. That little trip started with a very funny phone call. My phone rings and a very pleasant lady on the other end tells me she is a speech therapist and that I had been referred to her for eating/swallowing issues. I wasn't the one who complained, I was referred by the cancer clinic so we were both confused. We started the process with a little interview in which I told her I was fine and if this was as good as swallowing was gonna get, I had already adapted. I went into the process thinking it was a waste of time and that I was already good. She convinced me to give things a try. We did a swallow study which involves turning an X-ray table on it's end, standing in front of it and eating/drinking several different things mixed with barium. It doesn't taste bad. It doesn't taste. If someone hands you a loaded spoon and says "This is applesauce.", that tells you everything you need to know. "This is a water consistency. This is nectar consistency." Everything is white and devoid of taste. The actual x-ray is one of the coolest things I have ever seen. You can see the "food" get chewed, balled up and swallowed and follow it on the screen into my stomach. Unfortunately, that is also where the trouble started.
There is a little flap everyone has that, when you swallow, flaps down and seals your airway so you don't inhale food or drink. Everyone has done this at least once triggering an instant coughing fit. Unfortunately for me, the nerves that start that coughing fit were fried by radiation meaning I could inhale water, soda or beer (probably beer) and not even know it. That is not good. Little pieces of food also tended to hover around an area where I could possibly inhale them. That started the therapy which involved lots of swallowing. Sometimes with water. Most of the time dry and most of the time while doing something wierd with my tongue to make it even harder to swallow. For a guy that doesn't make enough spit to begin with, it gets hard pretty quick. After a while we added a little machine I called the ShockMan (crap, most of the people who read this aren't old enough to remember the WalkMan. oh well). They stick electrodes on my neck and start to crank the juice which tightens whatever muscles they need to make it even harder to swallow. It's not unpleasant but I don't want to buy one so I can play at home. My first follow up swallow study showed much improvement but still showed some stuff hanging around. Six more weeks of therapy and I would have bet you money I was 100% but failed that test too. Right now we are in a holding pattern: we are either going to roll with things the way they are or possibly more therapy.
With my diagnosis being in February 2011, it seems like every few days or so it is the one-year anniversary of something, first radiation, first chemo, first PET scan. I haven't posted in a while so I should catch you up.
I have gained most of my weight back. In fact, I could have probably gained it all back but decided to stay at the 190 mark or so which is about 20 pounds lighter than my old weight. I must confess that I really wanted to stay at 185 but blew by it so fast that I dropped anchor at 190. I have been hitting the gym like a madman and running every chance I get. My body changed dramatically through the ordeal and in a good way. My wife tells me I am leaner and I have stayed one waist size smaller for the same weight. However, I do not recommend my weight loss program...
I spent about 8 weeks in swallow therapy. That little trip started with a very funny phone call. My phone rings and a very pleasant lady on the other end tells me she is a speech therapist and that I had been referred to her for eating/swallowing issues. I wasn't the one who complained, I was referred by the cancer clinic so we were both confused. We started the process with a little interview in which I told her I was fine and if this was as good as swallowing was gonna get, I had already adapted. I went into the process thinking it was a waste of time and that I was already good. She convinced me to give things a try. We did a swallow study which involves turning an X-ray table on it's end, standing in front of it and eating/drinking several different things mixed with barium. It doesn't taste bad. It doesn't taste. If someone hands you a loaded spoon and says "This is applesauce.", that tells you everything you need to know. "This is a water consistency. This is nectar consistency." Everything is white and devoid of taste. The actual x-ray is one of the coolest things I have ever seen. You can see the "food" get chewed, balled up and swallowed and follow it on the screen into my stomach. Unfortunately, that is also where the trouble started.
There is a little flap everyone has that, when you swallow, flaps down and seals your airway so you don't inhale food or drink. Everyone has done this at least once triggering an instant coughing fit. Unfortunately for me, the nerves that start that coughing fit were fried by radiation meaning I could inhale water, soda or beer (probably beer) and not even know it. That is not good. Little pieces of food also tended to hover around an area where I could possibly inhale them. That started the therapy which involved lots of swallowing. Sometimes with water. Most of the time dry and most of the time while doing something wierd with my tongue to make it even harder to swallow. For a guy that doesn't make enough spit to begin with, it gets hard pretty quick. After a while we added a little machine I called the ShockMan (crap, most of the people who read this aren't old enough to remember the WalkMan. oh well). They stick electrodes on my neck and start to crank the juice which tightens whatever muscles they need to make it even harder to swallow. It's not unpleasant but I don't want to buy one so I can play at home. My first follow up swallow study showed much improvement but still showed some stuff hanging around. Six more weeks of therapy and I would have bet you money I was 100% but failed that test too. Right now we are in a holding pattern: we are either going to roll with things the way they are or possibly more therapy.
Thanksgiving Again!
Just revisited the blog and saw my last post was one year ago. A ridiculous amount of stuff has happened in the past year and nearly all of it good. Since the tongue cancer thing was what started the blog to begin with, lets just start there.
I remain cancer free (Thanks be to God!). In all honesty and to those who may happen upon this who are looking for info, here are the hangers on issues from the battle:
1) Medium volume, non-stop ringing in my ears from the Cisplatin. I learn more every day about what makes it worse and what doesnt. Easy on the caffeine. Get plenty of sleep. I loose some ability to communicate in a very noisy place as others voices get lost in the din.
2) Really strange spit. I am told there are two components to saliva, one thick and one thin. I dont make as much thin as a normal person but I MAKE SPIT. That is a huge plus. I actually make enough to run 3 miles without carrying water. The cold weather does impact that but I am adapting. I know some people who went through what I did and dont have any spit and maybe never will. I have not lost sight of the fact that I am very blessed.
3) Swallow issues remain. Swallowing is OK for the most part. I know what causes me problems and I avoid it (stringy stuff, granola, bread, etc.). I love chicken tacos which are stringy, so I soak them in salsa. I love bread so I soak it in gravy. It is such a minor complaint but I just have to give a little thought to what Im eating and adjust accordingly.
4) Neck cramps. Im not gonna get tough guy with you on this, they bring me to my knees. I am lifting weights at the gym which does make matters a little worse. It can be any muscle in my neck but the worst are the ones where the pain is at the point where the neck muscle attaches to the back of my skull. Once they cramp, you can tell they will cramp again if you turn your head just so... kind of like when your hamstring is on the verge of cramping. At some point the cramps will override my desire to lift and that will be that.
5) My taste is back but not like it was. I love some things I just liked before. Some of the things I loved before do nothing for me now. Pecan pie was the one food item I could not live without. Now, its just OK and it breaks my heart. Fortunately, beer has replaced pecan pie as the one food item I could not live without AND it healed my broken heart. Viola!
I have 3 friends who have all won their battle with head/neck during the last year and one friend who didnt make it. The guys who made it did better than I did and made me very proud! I continue to attend the SPOHNC meetings and try and help any new folks and I cant help but learn something that helps me, too.
My amazing wife wanted me to skydive for the one year celebration. As she was looking for deals, she found an outfit in the midcities that lets you drive a sports car for an hour (www.driveyourdream.com). She surprised me with a drive and picked the car for me, a Lamborghini Gallardo. Way way cool. A couple of days after purchasing the drive-around, up pops a deal on skydiving. So one week after tearing up the Fort Worth streets in the Gallardo, I jumped out of an airplane at 10,800 feet. It was every bit as cool as I thought it would be.
I remain cancer free (Thanks be to God!). In all honesty and to those who may happen upon this who are looking for info, here are the hangers on issues from the battle:
1) Medium volume, non-stop ringing in my ears from the Cisplatin. I learn more every day about what makes it worse and what doesnt. Easy on the caffeine. Get plenty of sleep. I loose some ability to communicate in a very noisy place as others voices get lost in the din.
2) Really strange spit. I am told there are two components to saliva, one thick and one thin. I dont make as much thin as a normal person but I MAKE SPIT. That is a huge plus. I actually make enough to run 3 miles without carrying water. The cold weather does impact that but I am adapting. I know some people who went through what I did and dont have any spit and maybe never will. I have not lost sight of the fact that I am very blessed.
3) Swallow issues remain. Swallowing is OK for the most part. I know what causes me problems and I avoid it (stringy stuff, granola, bread, etc.). I love chicken tacos which are stringy, so I soak them in salsa. I love bread so I soak it in gravy. It is such a minor complaint but I just have to give a little thought to what Im eating and adjust accordingly.
4) Neck cramps. Im not gonna get tough guy with you on this, they bring me to my knees. I am lifting weights at the gym which does make matters a little worse. It can be any muscle in my neck but the worst are the ones where the pain is at the point where the neck muscle attaches to the back of my skull. Once they cramp, you can tell they will cramp again if you turn your head just so... kind of like when your hamstring is on the verge of cramping. At some point the cramps will override my desire to lift and that will be that.
5) My taste is back but not like it was. I love some things I just liked before. Some of the things I loved before do nothing for me now. Pecan pie was the one food item I could not live without. Now, its just OK and it breaks my heart. Fortunately, beer has replaced pecan pie as the one food item I could not live without AND it healed my broken heart. Viola!
I have 3 friends who have all won their battle with head/neck during the last year and one friend who didnt make it. The guys who made it did better than I did and made me very proud! I continue to attend the SPOHNC meetings and try and help any new folks and I cant help but learn something that helps me, too.
My amazing wife wanted me to skydive for the one year celebration. As she was looking for deals, she found an outfit in the midcities that lets you drive a sports car for an hour (www.driveyourdream.com). She surprised me with a drive and picked the car for me, a Lamborghini Gallardo. Way way cool. A couple of days after purchasing the drive-around, up pops a deal on skydiving. So one week after tearing up the Fort Worth streets in the Gallardo, I jumped out of an airplane at 10,800 feet. It was every bit as cool as I thought it would be.
Sunday, December 4, 2011
Thanksgiving
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
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
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.
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