Today is Wednesday, Christmas Eve. I've been back on treatment since Monday, 24 radiation treatments down, 4 to go. The lips have healed, I'm feeling much better. Everything is back on track.
To all who have been following this blog, I wish you and yours the very best Christmas ever, and a very Happy New Year!
Al
Wednesday, December 24, 2008
Tuesday, December 16, 2008
Minor setbacks
Starting on Wednesday of last week, I started experiencing some of the chemo and radiation side effects that I have been managing to avoid. The first was a drastic drop in energy level. It got so bad on Thursday that I took half a day off and went home to sleep. That was the first time I've not been able to work due to sickness since I don't know when. Also on Thursday, I noticed my lips were numb.
On Friday I toughed it out at work, but pretty much went to bed when I got home.
Over the weekend, I had fairly debilitating diarhea. This is caused by the radiation. Basically my entire digestive tract is inflamed. It's also very painful to go, this is due to the tumor being in the way, and is the original symptom that started this whole thing.
On Sunday my lips erupted in a series of cold sores. Not too bad, but very annoying. On Monday when I went in to get my chemo hooked back up, I knew I wouldn't be going to work. Unfortunately, the cold sores are a show stopper. They won't provide treatment unless they are completely healed. They also won't continue the radiation until the diarhea is under control. On the up side, I'd lost 8 pounds in a week. I'm sure it's only temporary, and fat as I am, hardly noticeable.
So here I am, it's Tuesday evening, I haven't eaten a full meal in probably a week. I've got enough Immodium in my system to float a battleship. I think the diahrea is under control, but that's still iffy. The cold sores have spread to the inside of mouth and the tip of my tongue. Makes it hard to talk. My energy level is a bit better, been drinking a lot of Gatorade.
The doctor says they won't do anything until next Monday. All this stuff has to settle down before they'll continue treatment. I've taken this week and next off from work to try to rest up and heal and get back on track. This will be the first time in a long time that I've actually used my vacation time around Christmas.
Despite all the whining and complaining you've just read, spirits are good, the outlook is good, the battle continues.
On Friday I toughed it out at work, but pretty much went to bed when I got home.
Over the weekend, I had fairly debilitating diarhea. This is caused by the radiation. Basically my entire digestive tract is inflamed. It's also very painful to go, this is due to the tumor being in the way, and is the original symptom that started this whole thing.
On Sunday my lips erupted in a series of cold sores. Not too bad, but very annoying. On Monday when I went in to get my chemo hooked back up, I knew I wouldn't be going to work. Unfortunately, the cold sores are a show stopper. They won't provide treatment unless they are completely healed. They also won't continue the radiation until the diarhea is under control. On the up side, I'd lost 8 pounds in a week. I'm sure it's only temporary, and fat as I am, hardly noticeable.
So here I am, it's Tuesday evening, I haven't eaten a full meal in probably a week. I've got enough Immodium in my system to float a battleship. I think the diahrea is under control, but that's still iffy. The cold sores have spread to the inside of mouth and the tip of my tongue. Makes it hard to talk. My energy level is a bit better, been drinking a lot of Gatorade.
The doctor says they won't do anything until next Monday. All this stuff has to settle down before they'll continue treatment. I've taken this week and next off from work to try to rest up and heal and get back on track. This will be the first time in a long time that I've actually used my vacation time around Christmas.
Despite all the whining and complaining you've just read, spirits are good, the outlook is good, the battle continues.
Tuesday, December 2, 2008
Weekly Update
I had a pretty crappy Thanksgiving, despite being off the chemo for 4 days. Felt sick most of the time.
We drove up to my sister's house in Windsor on Saturday morning (about 3 hours), had a great meal. It was really nice to see everybody. The one big down side is that now my wife and kids are hooked on something called a Wii and it looks like I'll be spending my next couple paychecks upgrading my game system. Oddly enough, my last game system was a Nintendo, too. The original. We had planned on spending the night and driving home Sunday, but I was feeling pretty sick by about 8, so we drove home so I could be miserable at home, rather than in a hotel room.
Monday's chemo treatment pretty much put me in a fog for the rest of the day (see chemobrain below). Today, the cold sensitivity has really kicked in. I was brushing my teeth this morning and reached down to get a handful of water to rinse. It felt like I had grabbed hold of a 120-volt line. It's that painful numb buzzing feeling, and sticks around for about 5 minutes or so. If I breath cold air, I'm hoarse for 5-10 minutes. I'll be putting up Christmas lights outside this weekend, so that should be fun.
Also on the up side, my bowels seem to be functioning much better. The radiologist said that would happen as the tumor shrank. I guess the radiation is working, so that's good.
I guess that's about all for the past week, nothing really eventful.
We drove up to my sister's house in Windsor on Saturday morning (about 3 hours), had a great meal. It was really nice to see everybody. The one big down side is that now my wife and kids are hooked on something called a Wii and it looks like I'll be spending my next couple paychecks upgrading my game system. Oddly enough, my last game system was a Nintendo, too. The original. We had planned on spending the night and driving home Sunday, but I was feeling pretty sick by about 8, so we drove home so I could be miserable at home, rather than in a hotel room.
Monday's chemo treatment pretty much put me in a fog for the rest of the day (see chemobrain below). Today, the cold sensitivity has really kicked in. I was brushing my teeth this morning and reached down to get a handful of water to rinse. It felt like I had grabbed hold of a 120-volt line. It's that painful numb buzzing feeling, and sticks around for about 5 minutes or so. If I breath cold air, I'm hoarse for 5-10 minutes. I'll be putting up Christmas lights outside this weekend, so that should be fun.
Also on the up side, my bowels seem to be functioning much better. The radiologist said that would happen as the tumor shrank. I guess the radiation is working, so that's good.
I guess that's about all for the past week, nothing really eventful.
Tuesday, November 25, 2008
Glass Half Full
Talked about diet with my radiologist today. I am now under strict doctor's orders to NOT lose any weight. So now I have a few months to not feel guilty about being fat. There's a silver lining in every dark cloud :)
Monday, November 24, 2008
Cumulative Effects
Apparently, a lot of the chemo side effects are cumulative. Well tolerated at first, the olaxiplatin is kicking my butt today. Specifically, cold sensitivity is now real. If I hold on to a can of cold soda for more than about 15 seconds it hurts. A lot. If I try to swallow a cold liquid, it hurts like if you had a bad sore throat from a cold. Swallowing tepid or warm liquids is no problem at all. Lucky for me it's November :)
I have also done a little self diagnosis. I think I'm suffering from chemo brain. From the web site:
On another note, the radiation machine was broken today, so I didn't get zapped. It'll be fixed tomorrow morning, so I'll get a lunch-time shot of X-Rays. This will push my last day of treatment from December 22nd to the 23rd. I don't know if this effects the chemo treatments or not, I'll check with them tomorrow.
I have also done a little self diagnosis. I think I'm suffering from chemo brain. From the web site:
- Word finding. You might find yourself reaching for the right word in conversation.
- Memory. You might experience short-term memory lapses, such as not remembering where you put your keys or what you were supposed to buy at the store.
- Multitasking. Many jobs require you to manage multiple tasks during the day. Multitasking is important at work as well as at home — for example, talking with your kids and making dinner at the same time. Chemotherapy may affect how well you're able to perform multiple tasks at once.
- Learning. It might take longer to learn new things. For example, you might find you need to read paragraphs over a few times before you get the meaning.
- Processing speed. It might take you longer to do tasks that were once quick and easy for you.
On another note, the radiation machine was broken today, so I didn't get zapped. It'll be fixed tomorrow morning, so I'll get a lunch-time shot of X-Rays. This will push my last day of treatment from December 22nd to the 23rd. I don't know if this effects the chemo treatments or not, I'll check with them tomorrow.
Thursday, November 20, 2008
Getting the hang of it
I've figured out now what causes what. The oxaliplatin I get as an IV on Monday mornings makes me feel like crap for about 2 days. Tuesday night is the worst. Last week I was barfing my guts out, this week I took the anti-nausea stuff and was ok, but still a little queezy, and a LOT run down. Be Wednesday afternoon I was feeling pretty good, Wednesday evening I even worked out a bit on the elliptical. Today, Thursday, I feel great.
I also figured out how to take a shower with the port (fanny pack full of chemo hooked to a port in my upper chest that delivers the medicine directly to a vein just above the heart). The dressing isn't waterproof, so you have to cover it. Glad Press'n Seal Wrap works like a champ. It seals to the skin really well and is waterproof. It doesn't come off in the shower either. I had to mount a hook just outside the shower to hang the fanny pack on, too. This is a definite quality of life improvement.
I think I'm starting get some of the cold sensitivity from the oxaliplatin. I mentioned this to Ashley (my 14-year-old daughter) last night, so this morning she offered to start my car for me to warm it up. I thought that was very sweet, so I let her. My car is a stick shift, and you have to hold the clutch all the way to the floor to start it. But, it does have a tachometer, so you do get some indication that the motor is running. 15 minutes later, Ashley, Gloria (my 7-year-old), and I went to the car. Radio blaring, heater fan on high, engine not running. It was funny. Fortunately the car's relatively new and it didn't drain the battery. I guess Ashley needs a little more training :).
I also figured out how to take a shower with the port (fanny pack full of chemo hooked to a port in my upper chest that delivers the medicine directly to a vein just above the heart). The dressing isn't waterproof, so you have to cover it. Glad Press'n Seal Wrap works like a champ. It seals to the skin really well and is waterproof. It doesn't come off in the shower either. I had to mount a hook just outside the shower to hang the fanny pack on, too. This is a definite quality of life improvement.
I think I'm starting get some of the cold sensitivity from the oxaliplatin. I mentioned this to Ashley (my 14-year-old daughter) last night, so this morning she offered to start my car for me to warm it up. I thought that was very sweet, so I let her. My car is a stick shift, and you have to hold the clutch all the way to the floor to start it. But, it does have a tachometer, so you do get some indication that the motor is running. 15 minutes later, Ashley, Gloria (my 7-year-old), and I went to the car. Radio blaring, heater fan on high, engine not running. It was funny. Fortunately the car's relatively new and it didn't drain the battery. I guess Ashley needs a little more training :).
Tuesday, November 18, 2008
Still here
I really don't have much new to report. I'm in the second week of treatment now, and am getting a taste of things to come. My innards are inflamed from the radiation, causing all sorts of uncomfortable and generally disgusting side effects. If you've ever eaten too many jalapeños and had them burn on the way out, that's how it feels pretty much constantly now. So I have new ointments and stuff to deal with that (falls into the "disgusting" category). My stomach's been bothering me lately, so I'm on Prilosec for that. It hurts to urinate, apparently the radiation affects the bladder, and thus the burning sensation. I'm on Alleve to take care of that. I'm going to need a pill box thingy to get all this stuff organized. One thing is for sure, though, I won't be forgetting the anti-nausea stuff. On the up side, I've lost 12 pounds since first diagnosis :)
That's enough whining and complaining for one day, I suppose. I'll try not to bitch too much, I've got it easy. There are tons of people out there fighting a tougher battle than what I'm faced with.
That's enough whining and complaining for one day, I suppose. I'll try not to bitch too much, I've got it easy. There are tons of people out there fighting a tougher battle than what I'm faced with.
Subscribe to:
Posts (Atom)