OK, just as things are getting better something scarey happens. In the cornern of my neck/ear/jaw, I get this large painful swelling. I figure its an ear infection, because my counts are so low and my ears have been acting up.
So we go to my PCP who checks me out. She's not sure what it is. It's not a regular middle ear infection she says, more like a swimmer's ear, but I can bend the outside flap. She's not sure if maybe we have infllamed the lymph node and salivary gland that are there.
Inflamed? How? Are you just talking infection? Could this be another bought with lymph nodes and cancer. The good news is that the area is hot an painful to the touch which encourages the theory of infection. The bad news is that the word lymph node was used and my doctor said it's not looking like a regular ear infection.
We're doing antibiotoics for a week=10 days. I have an appointment today with my cancer doc Dougherty and Feb 6 with the guru Dr. Weinstein. It's a bit of a scare, but most likely just an infection. It's painful as hell too.
Thursday, January 31, 2008
Friday, January 25, 2008
Rolling Along
I continue to feel better and better. Rarely any sickness, maybe once every couple days and it's due to my cold-like symptoms more than any chemo nausea.
I'm hydrating ok and "feeding" well enough, although I lost another 5 pounds this week. That's not good. i'm down to 170, which is about as low as I want to go. Really, I way in at 190-195 pounds when I'm taking care of myself, so that's where I need to get to. I started at 217, yup 47 pounds ago. That weight was my highest ever and the product of indulging in snacks while I could before radiation, etc. It's getting time to get my symptoms out of the way, so I can eat and ensure my way back to 195. Then I can get my stomach tube removed!!!!!! That will be a graduation.
I'm not as tired as I have been, but my white blood counts are real low right now, making infection very easy. So, I'm not shaking hands, kissing, or doing any real public time. I'm a shut in, but that's basically what's been going on for 6 months now. It's been tough, but I can taste a return to normal life.
My dad's been up this week, and it's been nice seeing him. He's heading home soon, but I appreciate his visits, as much to offer my mom some company as the comfort he gives me. Kristina has been her usual angel self. She has tirelessly been there for me throughout this entire ordeal, and it's incredible how she's helped me. Shelly's visits have also been very helpful. All my other friends want to come and are waiting for my ok. I figure as soon as my white counts are back up, I'll be ready for visitors.
I'm hydrating ok and "feeding" well enough, although I lost another 5 pounds this week. That's not good. i'm down to 170, which is about as low as I want to go. Really, I way in at 190-195 pounds when I'm taking care of myself, so that's where I need to get to. I started at 217, yup 47 pounds ago. That weight was my highest ever and the product of indulging in snacks while I could before radiation, etc. It's getting time to get my symptoms out of the way, so I can eat and ensure my way back to 195. Then I can get my stomach tube removed!!!!!! That will be a graduation.
I'm not as tired as I have been, but my white blood counts are real low right now, making infection very easy. So, I'm not shaking hands, kissing, or doing any real public time. I'm a shut in, but that's basically what's been going on for 6 months now. It's been tough, but I can taste a return to normal life.
My dad's been up this week, and it's been nice seeing him. He's heading home soon, but I appreciate his visits, as much to offer my mom some company as the comfort he gives me. Kristina has been her usual angel self. She has tirelessly been there for me throughout this entire ordeal, and it's incredible how she's helped me. Shelly's visits have also been very helpful. All my other friends want to come and are waiting for my ok. I figure as soon as my white counts are back up, I'll be ready for visitors.
Sunday, January 20, 2008
Turning the Corner
Well, I feel like I finally turned the corner on my recent bout of chemo hell. I'm not 100% by a long shot, but I feel better, am no longer constantly getting sick, and am getting much more food and water than earlier.
It reminds me of lines from the old Speed Racer theme song:
And when the odds are against him
And there's dangerous work to do
You bet your life Speed Racer will see it through
Like so many guys my age, I idolized Speed Racer way too much. Although, truth be told, I was always more of a Racer X fan. OK, enough nerdery for now.I wanted to thank everyone for their well-wishing and beams/prayers/thoughts. It made the difference in a rough patch. Hopefully from here it's all up hill.
Soon maybe I'll eat again, be able to speak normally, and quit having to spit every 2 seconds into a bucket, but for now life is much better than it has been, and I'm grateful. Pretty much bald, but grateful.
Oh, and I was amused to see this trailer for a live action version of Speed Racer hitting screens.
http://www.youtube.com/watch?v=tO2jcwgIi8o&feature=related
Wednesday, January 16, 2008
Still Battling
I'm still battling this tough spell. I can keep down a few cans of Ensure a day now, and am vomiting a lot less frequently and voluminously. Never thought I'd use that v word in a sentence.
My mouth and throat feel like hell, and I'm tired as hell right now. This battle is no fun, but I look at the incremental progress of being able to keep meds down without vomiting them instantly and taking some Ensure vs. none.
I've all but decided on no #6 chemo, and that means if I can tough it through this, I'm reallly through the treatment. In some way, that should make it easier to endure.
I love you all for your support. Keep praying. I'm needing those beams of good thought right now.
My mouth and throat feel like hell, and I'm tired as hell right now. This battle is no fun, but I look at the incremental progress of being able to keep meds down without vomiting them instantly and taking some Ensure vs. none.
I've all but decided on no #6 chemo, and that means if I can tough it through this, I'm reallly through the treatment. In some way, that should make it easier to endure.
I love you all for your support. Keep praying. I'm needing those beams of good thought right now.
Monday, January 14, 2008
Another ER Visit
Last night I made another trip to the ER to deal with chemo illness. I'd been unable to keep anything down and was puking about 10-12 times repeatedly every time I tubed my Ensure or water. the biggest problem is that this creates a viciious cycle of more puking and malnutrition/dehydration. So, you can't let it go.
All the precautions medically, the new drugs and the doctors strategies have not done what I'd hoped and made chemo more bareable for me. Everyone seems like I am having a particularly rough reaction to the chemo and their usual magic wands like Zofran and others for anti-nausea seem to hold no sway.
I am seriously considering letting Chemo #5 be my last chemo and then using the extra time to recover and get ready for work and life. At this point, I've already exceeded the treatments of other nasopharynx patients that I know and my results are good. Honestly, my body just doesn't seem up for another round and I think it's time to let it heal and regenerate without further abuse. I will talk with my docs, but I am leaning heavily this way as of now.
All the precautions medically, the new drugs and the doctors strategies have not done what I'd hoped and made chemo more bareable for me. Everyone seems like I am having a particularly rough reaction to the chemo and their usual magic wands like Zofran and others for anti-nausea seem to hold no sway.
I am seriously considering letting Chemo #5 be my last chemo and then using the extra time to recover and get ready for work and life. At this point, I've already exceeded the treatments of other nasopharynx patients that I know and my results are good. Honestly, my body just doesn't seem up for another round and I think it's time to let it heal and regenerate without further abuse. I will talk with my docs, but I am leaning heavily this way as of now.
Saturday, January 12, 2008
Chemo #5
OK, I'm moving through chemo #5. I've been sick, as was expected, and it's a drag being in this time. However, I know it'll pass and I'll have some peace before my final chemo.
What I haven't posted yet is some tremendous news.
My very respected surgeon, Dr. Greg Weinstein, met with me on Tuesday and was astonished at the progress and results of my treatment. He kept saying you're doing extremely well, and you're going to be ok. He said most people don't see the great results that I have.
Woo-hoo!
Beyond this, he wants to wait three months from now before making a final decision on lymph node dissection in my neck. He said a PET/CT scan will be taken and if it shows cancer, then we'll cut. Otherwise, no need.
It was a great visit, and even though I felt sick because of the chemo, I was elated.
What I haven't posted yet is some tremendous news.
My very respected surgeon, Dr. Greg Weinstein, met with me on Tuesday and was astonished at the progress and results of my treatment. He kept saying you're doing extremely well, and you're going to be ok. He said most people don't see the great results that I have.
Woo-hoo!
Beyond this, he wants to wait three months from now before making a final decision on lymph node dissection in my neck. He said a PET/CT scan will be taken and if it shows cancer, then we'll cut. Otherwise, no need.
It was a great visit, and even though I felt sick because of the chemo, I was elated.
Monday, January 7, 2008
David Cole, Pharmaceutical Sponge
"I think one probably absorbs things like a sponge and things emerge without your always being aware of it."
- Jeremy Northam, British actor (and one of my favorites)
I had chemo today. For those who have never been, it's rather boring really. You get to the place and they draw your blood and test it to make sure you are healthy enough for the treatment. Then they hook you up to a large bag of saline water that drains intravenously into your body over the course of an hour. Then they hook up other bags, smaller usually, with anti-nausea meds, with magnesium (which Cisplatin depletes), and then they give you the money drug. Cisplatin. It's the big anti-cancer standard, and it's platinum-based. Platinum and life-saving. I can only imagine what the dose they put into me cost. Probably even more than the rising price of gas (petrol, to our English friend). Then another big bag of saline and I'm ready for my portable pump filled with 5FU that runs for 5 days pushing this drug into my system.
It generally takes about 5 hours to do this all, and my job is to be a big sponge and suck up the meds. There's no real nausea or pain involved during the taking of the treatment. It's usually a few days after before the anti-nausea drugs are done and the Cisplatin really begins to do its worst on your body. I find the first two weekends after treatment and the week in-between to be the darkest days of the chemo. Here' s when you barf incessantly, feel awful, and just wish it was over. I haven't looked, but you'd probably find few posts from me during these times during my last 4 chemo sessions. The good news is this is #5, and when the 10 days of hell comes it will be my next to last (hopefully ever) chemo treatment.
In the mean time , I had a great day at chemo, and again it was food related. The kind volunteer lady brought my mom a coffee and some Rold's Gold pretzels. My mom ate a few and the bag was lying there so I figured "Why not?" Well, they are hard, dry, and sharp to cut your mouth . . . could have been a wise response. I did the unwise thing and ate the pretzel. It melted in my mouth, and I chewed it very well. It went down without trouble!!!! So, I had a handful of the bastards and they were delicious. I started thinking. Are Doritos possible? Is God showing me how much he truly loves me?
My mom decides to go get some lunch at the nice little sandwich shop in the hospital. She comes back with a turkey and cheese on white with mayo and lettuce for me. And a pack of potato chips. Ruffles, not Doritos, but hey. I try the sandwich, bread and all. It shoots down without trouble!! Life is grand. Like I said when I ate that sandwhich, I felt like I was coming home. I ate most of the potato chips (again for the Englander, crisps). They were awesome and no trouble to eat. I also drank a peach smoothie and drank a couple cups of apple juice during my treatment. Two weeks ago, I never would have believed I would be eating this well this soon.
So, I decided to be bold and try a burger and fries for dinner. Wendy's has pretty greasy burgers, which is good for me and my saliva-challenged mouth. I can order them without acidic trouble makers like onions, catsup, and mustard. I wanted to try fries after the chips, too. (My English friends must be furious now. Chips=crisps, fries=chips). In any case, I gave it a go and the fries were so hard to eat. They were too dry. I put catsup on them, and the acidity hurt my mouth. The burger was a little better, but after eating maybe half, I had to give up. A little dry, and the little catsup I used was burning me too much. Oh well. I'll try it again in the future and some day re-add that to the menu.
In the mean time, I had a good day. My stomach is a little upset now, and I'm starting to feel the chemo a little (heart burn and fatigue). I'm still trying to go to a viewing tonight for a good friend's dad. Afterwards, I will really sleep like a champ, I'm sure.
- Jeremy Northam, British actor (and one of my favorites)
I had chemo today. For those who have never been, it's rather boring really. You get to the place and they draw your blood and test it to make sure you are healthy enough for the treatment. Then they hook you up to a large bag of saline water that drains intravenously into your body over the course of an hour. Then they hook up other bags, smaller usually, with anti-nausea meds, with magnesium (which Cisplatin depletes), and then they give you the money drug. Cisplatin. It's the big anti-cancer standard, and it's platinum-based. Platinum and life-saving. I can only imagine what the dose they put into me cost. Probably even more than the rising price of gas (petrol, to our English friend). Then another big bag of saline and I'm ready for my portable pump filled with 5FU that runs for 5 days pushing this drug into my system.
It generally takes about 5 hours to do this all, and my job is to be a big sponge and suck up the meds. There's no real nausea or pain involved during the taking of the treatment. It's usually a few days after before the anti-nausea drugs are done and the Cisplatin really begins to do its worst on your body. I find the first two weekends after treatment and the week in-between to be the darkest days of the chemo. Here' s when you barf incessantly, feel awful, and just wish it was over. I haven't looked, but you'd probably find few posts from me during these times during my last 4 chemo sessions. The good news is this is #5, and when the 10 days of hell comes it will be my next to last (hopefully ever) chemo treatment.
In the mean time , I had a great day at chemo, and again it was food related. The kind volunteer lady brought my mom a coffee and some Rold's Gold pretzels. My mom ate a few and the bag was lying there so I figured "Why not?" Well, they are hard, dry, and sharp to cut your mouth . . . could have been a wise response. I did the unwise thing and ate the pretzel. It melted in my mouth, and I chewed it very well. It went down without trouble!!!! So, I had a handful of the bastards and they were delicious. I started thinking. Are Doritos possible? Is God showing me how much he truly loves me?
My mom decides to go get some lunch at the nice little sandwich shop in the hospital. She comes back with a turkey and cheese on white with mayo and lettuce for me. And a pack of potato chips. Ruffles, not Doritos, but hey. I try the sandwich, bread and all. It shoots down without trouble!! Life is grand. Like I said when I ate that sandwhich, I felt like I was coming home. I ate most of the potato chips (again for the Englander, crisps). They were awesome and no trouble to eat. I also drank a peach smoothie and drank a couple cups of apple juice during my treatment. Two weeks ago, I never would have believed I would be eating this well this soon.
So, I decided to be bold and try a burger and fries for dinner. Wendy's has pretty greasy burgers, which is good for me and my saliva-challenged mouth. I can order them without acidic trouble makers like onions, catsup, and mustard. I wanted to try fries after the chips, too. (My English friends must be furious now. Chips=crisps, fries=chips). In any case, I gave it a go and the fries were so hard to eat. They were too dry. I put catsup on them, and the acidity hurt my mouth. The burger was a little better, but after eating maybe half, I had to give up. A little dry, and the little catsup I used was burning me too much. Oh well. I'll try it again in the future and some day re-add that to the menu.
In the mean time, I had a good day. My stomach is a little upset now, and I'm starting to feel the chemo a little (heart burn and fatigue). I'm still trying to go to a viewing tonight for a good friend's dad. Afterwards, I will really sleep like a champ, I'm sure.
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