Status!
Comments from Carmen will be in RED...
It has been a few weeks since I wrote an update, so I thought it was time. We have completed 5 of the 8 chemotherapy sessions, so we are on the homestretch with my spa days. The radiation sessions have lived down to advertisement as the more challenging aspect of my treatments, and we have only completed 15 of 35 treatments. This is primarily a rundown of what life is like:
The only noticeable effect from the chemotherapy has been a resurgence of my early teenage skin quality. The acne which was such a chick magnet in high school (magnetically repulsive that is) combined with my highly unstable voice have made me feel like a teenager again.
Here's where Ryan really let his nerdy flag fly!
From an engineering standpoint the radiation treatments are fascinating. As I discussed before they lay me flat on my back and use my custom mask to lock my head into place. The technicians then take a couple of minutes to align my body properly. Each session starts with a CT scan to double check my alignment to ensure the right parts of me get zapped. Once the alignment are verified and any adjustments are made with slight movements of my table, the radiation show starts. They do their verification by preforming a CT scan before every treatment. The process is quiet and painless. I receive about 200 rad of proton radiation each day from an 8X8" emitter. To put it in another way, that's like getting 400,000 dental x-rays per day. That's a lot of frakking radiation! The shape of the radiation field is constantly adjusted by shielding vanes in the emitter as the machine rotates around my head to create a 3D region where the energy is deposited to melt the cancerous cells away. The precise targeting of the cancerous regions is why they take so much care to align me correctly.
The effects of the radiation treatments are really not so fascinating. The medical staff have noted that I have had worse than average reactions to the treatments. The sore throat, severe dry mouth, and headaches started within the first week. We are thinking that this may be due to his red hair and fair skin. We kept pushing the envelope on what I could eat to see what was tolerated and I was able to handle many things for the first couple of weeks. Dry, crunchy, acidic, and spicy food and drink were the first to go on the intolerable list (bye, bye diet Mountain Dew). At this time, however, I am mostly limited to a liquid diet, and even that burns as it works down my throat. Carmen just gave me a GUMMY vitamin, and I could have swore she wrapped that thing in a Carolina Reaper pepper. We worked hard to fatten me up with a high-calorie diet, but I've lost some weight and my calorie intake has dropped significantly over the last few days. He's lost 8lbs in a month. Now if he were healthy and actually trying to, this would be awesome. His calorie intake has dropped from a high of about 2300 to now 1200-1500. Anyone who has ever tracked calories or weight trained knows that this big of a drop in consumption can cause some dramatic weight loss.
Since I can do trend-analysis with the best of them, we are opting for the feeding tube now so that I can have it put in before I lose too much strength. We don't have an appointment yet to have it installed. Hopefully soon. My energy level has fallen dramatically. I find myself taking involuntary naps during the day. I have slept for as much as 13 hours at a shot (which I don't normally ever do).
Worse even than the throat pain, the radiation has stiffen and slowed my jaw and throat muscles. This creates a sluggishness in my swallowing reflexes which puts me at risk of choking every time I ingest anything. It's very scary. To help with this, we see a voice coach. She's actually a speech therapist. I told her I was shooting for the dulcet tones of Frank Sinatra. It turns out what she is really doing is help me not choke to death. She prescribed several throat and mouth exercises (all of which suck) and told us to thicken any liquids I drink. The thicker liquids flow slower and allow my throat time to properly react. I guess I will work on my lounge singer act later. My voice is - at best - a rasp if I can do more than whisper.
And now, the worst effect of all has just started. The doctor had promised that I would lose my beard, permanently, after the first 1-2 weeks of treatment. After that didn't happen, I allowed myself to have a glimmer of hope that maybe, just maybe, I would be special. But alas, it doesn't seem to be that way. At first I noted that my skin was hyper-sensitive, and now, I have started shedding. 😢ðŸ˜
More to follow. Hopefully we can be more upbeat in the future!
It has been a few weeks since I wrote an update, so I thought it was time. We have completed 5 of the 8 chemotherapy sessions, so we are on the homestretch with my spa days. The radiation sessions have lived down to advertisement as the more challenging aspect of my treatments, and we have only completed 15 of 35 treatments. This is primarily a rundown of what life is like:
The only noticeable effect from the chemotherapy has been a resurgence of my early teenage skin quality. The acne which was such a chick magnet in high school (magnetically repulsive that is) combined with my highly unstable voice have made me feel like a teenager again.
Here's where Ryan really let his nerdy flag fly!
From an engineering standpoint the radiation treatments are fascinating. As I discussed before they lay me flat on my back and use my custom mask to lock my head into place. The technicians then take a couple of minutes to align my body properly. Each session starts with a CT scan to double check my alignment to ensure the right parts of me get zapped. Once the alignment are verified and any adjustments are made with slight movements of my table, the radiation show starts. They do their verification by preforming a CT scan before every treatment. The process is quiet and painless. I receive about 200 rad of proton radiation each day from an 8X8" emitter. To put it in another way, that's like getting 400,000 dental x-rays per day. That's a lot of frakking radiation! The shape of the radiation field is constantly adjusted by shielding vanes in the emitter as the machine rotates around my head to create a 3D region where the energy is deposited to melt the cancerous cells away. The precise targeting of the cancerous regions is why they take so much care to align me correctly.
The effects of the radiation treatments are really not so fascinating. The medical staff have noted that I have had worse than average reactions to the treatments. The sore throat, severe dry mouth, and headaches started within the first week. We are thinking that this may be due to his red hair and fair skin. We kept pushing the envelope on what I could eat to see what was tolerated and I was able to handle many things for the first couple of weeks. Dry, crunchy, acidic, and spicy food and drink were the first to go on the intolerable list (bye, bye diet Mountain Dew). At this time, however, I am mostly limited to a liquid diet, and even that burns as it works down my throat. Carmen just gave me a GUMMY vitamin, and I could have swore she wrapped that thing in a Carolina Reaper pepper. We worked hard to fatten me up with a high-calorie diet, but I've lost some weight and my calorie intake has dropped significantly over the last few days. He's lost 8lbs in a month. Now if he were healthy and actually trying to, this would be awesome. His calorie intake has dropped from a high of about 2300 to now 1200-1500. Anyone who has ever tracked calories or weight trained knows that this big of a drop in consumption can cause some dramatic weight loss.
Since I can do trend-analysis with the best of them, we are opting for the feeding tube now so that I can have it put in before I lose too much strength. We don't have an appointment yet to have it installed. Hopefully soon. My energy level has fallen dramatically. I find myself taking involuntary naps during the day. I have slept for as much as 13 hours at a shot (which I don't normally ever do).
Worse even than the throat pain, the radiation has stiffen and slowed my jaw and throat muscles. This creates a sluggishness in my swallowing reflexes which puts me at risk of choking every time I ingest anything. It's very scary. To help with this, we see a voice coach. She's actually a speech therapist. I told her I was shooting for the dulcet tones of Frank Sinatra. It turns out what she is really doing is help me not choke to death. She prescribed several throat and mouth exercises (all of which suck) and told us to thicken any liquids I drink. The thicker liquids flow slower and allow my throat time to properly react. I guess I will work on my lounge singer act later. My voice is - at best - a rasp if I can do more than whisper.
And now, the worst effect of all has just started. The doctor had promised that I would lose my beard, permanently, after the first 1-2 weeks of treatment. After that didn't happen, I allowed myself to have a glimmer of hope that maybe, just maybe, I would be special. But alas, it doesn't seem to be that way. At first I noted that my skin was hyper-sensitive, and now, I have started shedding. 😢ðŸ˜
More to follow. Hopefully we can be more upbeat in the future!
Hugs to you both. I'm not totally caught up on this. Wishing the you the best in the new year.
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