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Posted: Mon Mar 30, 2009 9:11 am
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you will be in my prayers sir, just keep doin what you love the most and dont let anything stop from doin it.

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Posted: Mon Mar 30, 2009 9:20 am
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Mike;

I've been out of work since November, 2007. I went through 2 major back surgeries last year, and subsequently, went through a severe bout of depression. I'm not used to not working. Unfortunately, yours is a much more serious situation. I will keep you in my prayers and thoughts.
God Bless.........

Rick


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Posted: Tue Mar 31, 2009 4:00 pm
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Hi Mike,

One of the great things about the chemobrain side-effects that wipe out a lot of lymphoma survivors, including me, is time passes very fast. I don't know if you'll have it like we do because we get adriamycin, bleomycin, vinblastine, which are all documented to play you like an F chord, and on top of that we get dacarbazine which can't be good, just based on the name and the puking. Anyhow, the tests are never really very good. It's the secret of medicine that survivors discover - they've got barely a clue. I mean, they know what lymphoma is now, and they even came up with a toxic potion that kills it most of the time (and part of you) but that's as far as it goes. Maybe due to the anti-wisdom bias of the Dark Ages, even leading to burning people with old knowledge of medicine, we barely know anything. At least, science shows certain treatments work and they can go with them. In the end, the way you know the treatment worked is because you don't get sick and die. When I had my first series of tests after treatment a couple of months, they included a CT scan and it came back bad. I mean, I was told in several meetings including the bigwig from Sunset who showed me the pictures, that I had "persistent disease" and I had a 1/3 chance of living with radical bone marrow transplant treatment. A later test was negative though and so we did nothing. I'm still here several years later, showing I didn't have it after all. What happened, I had a crown go bad during chemo and then developed a little infection under the crown that was causing the lymph node to respond and get big. Lymph nodes are funny that way. Fortunately they did the other test that was clear and didn't kill me or screw me up even worse with more treatment. So my point is simply that we have to be Zen about it and live life to the fullest, not overdoing it though, to make the most of what we have left. Maybe that's 60 years, or we all get implanted into 1000 year androids and have regular oil changes, or maybe it's a year or two. I had a 2/3 chance of living for five years after diagnosis roughly, but thought it was a 98 percent chance. They told me I had a 1/3 chance of living with radical treatment after the test came back bad. Now, I've got a chance of developing acute leukemia from the treatment - 1 percent - and actually I have had the symptoms of leukemia for years. Those symptoms, though, are also typical of the pain and fatigue common among chemo-lymphoma survivors. What's it all add up to? So many people have passed away since I was diagnosed several years ago, and I'm still here. Did they know they would go someday? I'm lucky because I do know. What can we do?

Personally, my answer is don't fear the reaper. Faith is there to help, but not a cartoon faith or an easy faith. More like the Faith in Job and Ecclesiastes, and Jesus's teachings. Also, there's a point when you cannot go on, and I didn't get there during treatment but I could see it from where I was. My constant bone-weariness now also is a heavy reminder. It's good to know also that life is real and good, and now, and that also suffering also does end, when it comes to that. I don't know much about Blue Oyster Cult's views on God, but there's truth in this song imho.

All our times have come
Here but now they're gone
Seasons don't fear the reaper
Nor do the wind, the sun or the rain..we can be like they are
Come on baby...don't fear the reaper
Baby take my hand...don't fear the reaper
We'll be able to fly...don't fear the reaper
Baby I'm your man...

Valentine is done
Here but now they're gone
Romeo and Juliet
Are together in eternity...Romeo and Juliet
40,000 men and women everyday...Like Romeo and Juliet
40,000 men and women everyday...Redefine happiness
Another 40,000 coming everyday...We can be like they are
Come on baby...don't fear the reaper
Baby take my hand...don't fear the reaper
We'll be able to fly...don't fear the reaper
Baby I'm your man...

Love of two is one
Here but now they're gone
Came the last night of sadness
And it was clear she couldn't go on
Then the door was open and the wind appeared
The candles blew then disappeared
The curtains flew then he appeared...saying don't be afraid
Come on baby...and she had no fear
And she ran to him...then they started to fly
They looked backward and said goodby...she had become like they are
She had taken his hand...she had become like they are
Come on baby...don't fear the reaper

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Posted: Wed Apr 01, 2009 6:54 am
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strat58cat wrote:
In the end, the way you know the treatment worked is because you don't get sick and die. When I had my first series of tests after treatment a couple of months, they included a CT scan and it came back bad. I mean, I was told in several meetings including the bigwig from Sunset who showed me the pictures, that I had "persistent disease" and I had a 1/3 chance of living with radical bone marrow transplant treatment. A later test was negative though and so we did nothing.


How much time occured between the two tests?

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Posted: Wed Apr 01, 2009 8:46 am
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The tests with the different results were taken right after each other. I don't recall exactly the time lag, but basically they were taken around the same time. One test, a CT scan, was done first. Then the other test, a Gallium scan, was done. Then the results for the CT scan came back as very bad. I had meetings all week with doctors including the big one on Friday where they said I had the 1/3 chance to live, with radical bone marrow transplant treatment. The doctor even asked me whether I wanted to get started on the preparation for the bone marrow transplant, or did I want to wait on the results from the Gallium Scan. I said, of course, let's check the Gallium scan and make sure. Doc said don't go kill yourself or something since you have the 1/3 chance of living, and all the time I'm telling people they have no chance. I was about 36. Nice, I thought, this Doc needs to work on his bed side manner. The following week, the Gallium scan results came back - clean. To some extent, they are taking shots in the dark but they do the best they can.

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Posted: Wed Apr 01, 2009 8:52 am
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Mike,

I know what you're going through. I saw this movie "Vanilla Sky" a couple of years after I finished chemo. It's not a great movie, but it deals with this guy who has a terrible accident and then he gets reconstructed - or does he? They guy - played by Tom Cruise - wakes up sometimes thinking he's still disfigured. You can go through something like that for a while after having gone through a cancer diagnosis and treatment. With the risk of leukemia that I have, and the fact the chemo side-effects of pain and bad fatigue are basically the same as leukemia symptoms, that really doesn't end. The only thing to do is go along the lines of Ecclesiastes or the letter from James in the New Testament and realize we don't know how long we've got, and we can make the most of it while we're here. Cancer survivors are given a great gift, which is we know that sunny days end.

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Posted: Wed Apr 01, 2009 11:11 am
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Mike ,Hope you feel good and are continuing to recover .Thats cool being offered the gig and you would surely rock. I think the late hours and mostly bad road food might be a little too much at this point,anyway having the offer is nice.
You have always been in our prayers and thank you for sharing I think this thread has help many Paul


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Posted: Sat May 16, 2009 6:27 am
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Thanks to everyone for their prayers and positive comments. I just read the first post in this thread and it's been about a whole year since this whole journey began.

I'm still a bit sore where the surgery was (scar tissue/adhesions?) and have slight neuropathy still, but mainly in feet.

Next week I begin the CT and PT scans, blood tests, etc. to see if the chemo did what it was supposed to do. After that I have a follow up for mediport maintenance and to get the results from my oncologist on May 26th.

If the news is good (I'm really hoping and praying!) I'll be able to have the surgery to remove the mediport and catheter that's been implanted in my chest. A little while later, maybe even late summer, I'll need my follow up scope check.

I can't urge you enough to stay on top of your health. Early diagnosis can be a huge factor in surviving this horrible disease.

We're off to help our son move home from college for the summer (trying to keep busy and not dwell on the procedures and possible outcome), but
again I want to thank all of you for your continued support.


Sincerely,
/Mike

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Posted: Sat May 16, 2009 6:44 am
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Thanks for the update Mike and know that me and my family continue to pray for you and your family. Mojo from the swamplands of Louisiana my friend. Enjoy the weekend! :wink:


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Posted: Sat May 16, 2009 7:15 am
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Thanks for updating us Mike. You will be in my thoughts next week.

I too will be picking up a college student. My eldest granddaughter's goes to Johnson & Wales in Providence, RI - so we will going down to pick up all of her stuff (and more most likely) next Friday.

Major mojo is beaming your way Mike. I hope all goes well, both with your son and the medical issues.

Take care,

Gil 8)

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Posted: Sat May 16, 2009 9:55 am
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Oklahoma mojo sent! 8) Mike

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Posted: Sun May 17, 2009 5:54 am
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Thanks again for your positive support!

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Don't leave home without it!


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Posted: Tue May 19, 2009 10:10 am
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Mike, daily prayers and good vibes from metro Chicago.

'Looking forward to your being so healed and robust, this thread will go into the archives.


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Posted: Tue May 19, 2009 10:41 am
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JSJH wrote:
Mike, daily prayers and good vibes


+1. I am praying and pulling for you Mike! You are definitely in the home stretch! Hang in there brother!

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"Show me a crowd where the band is loud and my drunken ballet is in fashion!" Jerry Riopelle


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Posted: Wed May 20, 2009 4:56 am
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Thanks again to everyone!

I had the scans done twice. After the first one, they claimed they couldn't get a good image and wanted to increase the IV dye.

They sent me to the lab to have blood drawn to see if the kidneys were strong enough to "work harder" with the increased dosage.

I thought that the jug of chalky stuff would have been enough, but what do I know?

On the second trip into the radiology center, they were able to get better images. I'll get the results next Tuesday.

Now it's wait and wonder, but thinking positive!

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Don't leave home without it!


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