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Posted: Wed Jul 30, 2008 6:34 am
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Thanks again for the well wishes and positive support. The G-DEC post by Brad really made my day today and I think I really needed to hear some great news like that.

The Oxaliplatin basically knocked me down from yesterday's infusions...makes me think of that Chubawamba song that goes something like..."I get knocked down, but I get up again...you're never going to keep me down" :wink:

Anyway, I'm dragging this pump around again, but being VERY careful and keeping in mind the ten foot IV line this week!

One of my oncology nurses told me about this :

http://www.amazon.com/Heal-Your-movie-e ... 8E787V10ST

The author has helped many to not just survive,but eradicate their cancer.

Again, thanks for the prayers, mojo and positive thoughts and comments!

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Posted: Wed Jul 30, 2008 3:58 pm
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Today's infusions went pretty good. I asked about if anything was available to help with the neuropathy side effects and was told to try some folic acid and B-12 vitamins, but steer clear of any multiple vitamins with iron (due to any possible adverse reaction of another side effect.)

I tried to log in awhile ago and got the message that the community was down :( , but glad to see it back again. :)

I met another musician, well, a drummer :P at the clinic today and he was there supporting his wife who was undergoing chemo for breast cancer. Anyway, we talked about music for some time and I told him about this great Fender community and wrote down the url, so he promised that he'll mention it to his guitarist and bassist (both Fender players) and maybe we'll have a couple of new members joining soon.

-Mike (doing a little PR work while at chemo) :wink:

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Posted: Wed Jul 30, 2008 4:00 pm
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Great news Mike! Glad to hear you're doing well, recruiting new members, and making fun of drummers :lol: Again, a continuing best of luck with the rest of your procedures.


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Posted: Wed Jul 30, 2008 4:11 pm
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citizenerased wrote:
Great news Mike! Glad to hear you're doing well, recruiting new members, and making fun of drummers :lol: Again, a continuing best of luck with the rest of your procedures.


Thanks citizenerased, it had to be done :wink: and thanks for the well wishes!

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Posted: Wed Jul 30, 2008 4:33 pm
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Mike get everything you can to keep your spirits up (maintain a stiff upper lip as we say in blighty) get the dvd, soundtrack and tshirt. stay positive especialy into your 2nd and 3rd weeks after chemo, thats when it really hits hard and also where i think you will make the most progress, which will be boosted by a positive mentality.
Fight on brother
prayers and blessings from england to you.

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Posted: Thu Jul 31, 2008 6:30 am
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nikininja wrote:
Mike get everything you can to keep your spirits up (maintain a stiff upper lip as we say in blighty) get the dvd, soundtrack and tshirt. stay positive especialy into your 2nd and 3rd weeks after chemo, thats when it really hits hard and also where i think you will make the most progress, which will be boosted by a positive mentality.
Fight on brother
prayers and blessings from england to you.


Thank you nikininja, and all. I'm halfway through my second cycle right now and will be leaving soon for my last infusions for this week. My bloodwork patholgy remains good so far and all-in-all I don't really feel bad, or as bad as I've heard/read of others tolerating this.

I did wake up this morning and noticed a "sunburn" type red face and neck, but no temperature and I feel fine. I'll see what they say when I get to the clinic today about that. They do recommend staying out of the sun while on chemo and I have been, but maybe just the little bit of going out for a short walk makes that much of a difference?

Today, I also get my "leash' taken off :? and get "unplugged" from the portable pump of Fluorouracil that's been infused around the clock since Tuesday morning. That is a GREAT feeling when they take the needle out and clean the mediport! :)

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Posted: Thu Jul 31, 2008 12:57 pm
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Mike,

My positive vibrations are being sent towards you on the wings of prayers. You are already 1/6th done and you just got started. Follow what the doctors say and you'll come through. I also am on folic acid and vitamin b. A neurologist at Kaiser Permanente told me to get on the supplement, even though my levels were normal, due to the cancer/chemo related neurological damage. Folic acid is very crucial to the nervous system and high levels may help preserve the central nervous system, or even reverse damage. If you're taking folic acid, you have to get plenty of the other vitamin bs also. Since the neurologist a few years ago, my primary physician at Kaiser Permanente also recently told me to stay on it. So for years, I've dropped (folic) acid every day. I've dropped more (folic) acid than Jim Morrison or John Lennon. My condition has not changed, but it hasn't gotten worse with age either, and so the vitamins may be doing some good.

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Posted: Thu Jul 31, 2008 1:04 pm
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Miami Mike wrote:
Today, I also get my "leash' taken off :? and get "unplugged" from the portable pump of Fluorouracil that's been infused around the clock since Tuesday morning. That is a GREAT feeling when they take the needle out and clean the mediport! :)

I remember that so well. I was being pumped four days at a time. If you would unplug it from the wall, battery power would last about 10 minutes then it would start beeping like crazy over and over.
I hope that this all works out for you Mike.


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Posted: Thu Jul 31, 2008 1:08 pm
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Just got home from clinic and it went pretty good. The sun has much stronger UV ray effects on your skin while undergoing chemo treatments I was told. I'll have to find a hat to wear when I go out I guess.

It's a very hot and muggy day and I'm really kind of rundown, but also restless in a way.

strat58cat, I hear ya, the Folic acid and Bs will be added to my system to counter or at least decrease the neuropathy effects and hopefully in the long run, give me the ability to bounce back. Yeah, 1/6th done! :wink:

I can only hope that the next five months go as well as this first month has gone, but I have a strong desire to kick this crud and to prevent re-occurence, so I remain steadfast in my determination that I will beat this !

Again, thanks to all for the helpful insight, positive comments, well wishes and good thoughts...it really means a lot to me!

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Posted: Thu Jul 31, 2008 1:20 pm
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"rundown, but also restless in a way"

I know the feeling all too well, Mike. Sounds like Zod's also been down this road. What I used to do when I was on ABVD for six cycles (which is different but similar in effect) is try to get to just run down. I know that sounds a little funny, but I couldn't stand that restless feeling. I would exercise until I was tired. At first, I was on the exercise bike like before I was on chemo, but later figured out I needed to watch not to overdo it. So I would walk. When that restless feeling hit - steroids, chemo, all of it helps to create that restlessness - I would go for long walks. I would walk until I got rid of that restless feeling that was driving me nuts. I would even walk around what was then a small apartment for hours. Always some entertainment going of course - music, a book on tape, the t.v. if inside, whatever I could find. Just being tired I could handle, but not tired and the restlessness. Also, unless I walked out that restlessness, I couldn't sleep. Once I was just tired, that was more peaceful. Since the chemo ended in 2001, the restlessness is gone but not the tiredness, but tiredness I can handle.

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Posted: Thu Jul 31, 2008 1:27 pm
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I agree that both you (strat58cat) and zod speak from experience. I'm about to put on some music right now and doze off a bit. My wife's birthday is tomorrow and I'll be thinking of something nice that I can do for her. She has been by my side forever and has been very supportive and strong while going through this traumatic experience.

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Posted: Thu Jul 31, 2008 1:38 pm
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I had a large lump pop up on the area between the neck and left shoulder back in 1997. It turned out to be a synovial sarcoma, a rare soft tissue sarcoma. The longest 9 months of my life. I went through chemo and radiation and had surgery to remove the tumor, followed up by more radiation. I have never felt the same since then, tired all the time and my left shoulder cramps up alot but at least I'm still here.
Hope your wife has a nice birthday.


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Posted: Thu Jul 31, 2008 5:10 pm
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Hi Zod,

We all pay a price -- all of us who survive cancer. At least now, the wall of denial to quote SRV in the medical establishment has come down and they recognize it takes a toll on us. As I sit here right now, my career is very different than I thought it would be. Everything hurts with extreme and painful fatigue that's called fibromyalgia. My eyes look like I got punched under each of them - black eyes. This is all despite my no smoking, no drinking, lots of vitamins and healthy food, clean-living lifestyle. We pay a price, and we lose the ability to do some of the things we used to do, or planned to do, but we gain some other things that help make up for it. I gained insight into my own human condition. I gained more appreciation for and hyperfocus on music. I gained the ability to lend an encouraging word and experience to fellow human beings who are having to face cancer. Whatever the odds of living out the five years when cancer can recurr are - and I thought mine were 97 percent only to discover later they were more like 50 percent - to face down cancer is to face down death. We have done it. It can make us better, or not, depending on us. By our example of survival and our ability to prosper despite cancer and the aftermath, we can encourage other people and provide a shoulder to lean on, or even to cry on. That's a great gift we've gotten and we should try to make the most of it. I would, except I'll forget all these high-minded thoughts by tomorrow and just remember my GAS for an Eric Johnson and a FMT HSS Am Dx. :? It's all the pretty pictures that do it.

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Posted: Fri Aug 01, 2008 6:37 am
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Well, I'm doing okay today. It felt great to wake up and not be "plugged in" to that pump with the IV line attached to the needle in my chestport. :)

I'm having more of the cold sensitivity (no iced coffee this morning :cry: ) but overall, I'm dealing with it pretty good. Maybe just a slight feeling of nausea, but tolerable. Very hot and muggy still.

August 1st, my wife's birthday and one month (of six) chemo sessions now finished. I'm hoping that the neuropathy subsides enough so we can get out and do something to celebrate. If not tonight, then maybe in the next few days.

You guys have been a great inspiration and as you may imagine, it really helps a lot to read the positive comments and well wishes. Thanks again!

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Posted: Fri Aug 01, 2008 7:59 am
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Good to hear Mike.

A Very Happy Birthday to your wife. Do something special with her today.

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