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Post subject: Brad? Fund Raiser?
Posted: Wed Jun 25, 2008 8:09 am
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Brad,

I was wondering, out of the kindness and support that everyone has been showing for Miami Mike and his situation, would we be allowed somehow to create a fund raiser on this forum to offer assistance with Mikes medical bills?

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Post subject: Re: Brad? Fund Raiser?
Posted: Wed Jun 25, 2008 8:25 am
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Barry Pullis wrote:
Brad,

I was wondering, out of the kindness and support that everyone has been showing for Miami Mike and his situation, would we be allowed somehow to create a fund raiser on this forum to offer assistance with Mikes medical bills?

i'm for it


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Posted: Wed Jun 25, 2008 8:29 am
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Barry, I appreciate your thoughtfulness, but as far as I know, my wife's insurance (through her employer) should cover most of the expenses.

Of course, I'll know more as I get more involved with the next phase of the treatment.

This is the treatment plan that I'll be on beginning in a couple of weeks :

http://en.wikipedia.org/wiki/FOLFOX

Since I've had to sub out the gigs that I had booked, I'm hoping to be able to scrape some extra (non medical bill) cabbage for maybe a G-Dec to keep my chops up with, but the neuropathy side effects might even limit my playing.

I don't really know and won't know until I get into some kind of routine (if there is such a thing) and see what and how the treatments and side effects are tolerated.

It is very thoughtful of you though !

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Posted: Wed Jun 25, 2008 8:33 am
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Miami Mike wrote:
Barry, I appreciate your thoughtfulness, but as far as I know, my wife's insurance (through her employer) should cover most of the expenses.

Of course, I'll know more as I get more involved with the next phase of the treatment.

This is the treatment plan that I'll be on beginning in a couple of weeks :

http://en.wikipedia.org/wiki/FOLFOX

Since I've had to sub out the gigs that I had booked, I'm hoping to be able to scrape some extra (non medical bill) cabbage for maybe a G-Dec to keep my chops up with, but the neuropathy side effects might even limit my playing.

I don't really know and won't know until I get into some kind of routine (if there is such a thing) and see what and how the treatments and side effects are tolerated.

It is very thoughtful of you though !


Just trying to reach out best way I know how. As we have all been saying, we are here for you in some way shape or form.

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• '86 Charvel Model 2 (Black)

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Posted: Wed Jun 25, 2008 8:34 am
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Miami Mike wrote:
Barry, I appreciate your thoughtfulness, but as far as I know, my wife's insurance (through her employer) should cover most of the expenses.

Of course, I'll know more as I get more involved with the next phase of the treatment.

This is the treatment plan that I'll be on beginning in a couple of weeks :

http://en.wikipedia.org/wiki/FOLFOX

Since I've had to sub out the gigs that I had booked, I'm hoping to be able to scrape some extra (non medical bill) cabbage for maybe a G-Dec to keep my chops up with, but the neuropathy side effects might even limit my playing.

I don't really know and won't know until I get into some kind of routine (if there is such a thing) and see what and how the treatments and side effects are tolerated.

It is very thoughtful of you though !

mike has your doctor suggested the new cyber knife
treatment?


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Posted: Wed Jun 25, 2008 8:34 am
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A friend and fellow musician had a similiar diagnosis and surgery along with treatment last year. I received an email from him yesterday describing what his experience was like that I'd like to share :

Mike, I'm glad to hear from you. I was thinking about your appointment this morning.

I had the Fol Fox treatment with 5FU, Leucovorin and Oxaliplatin, which sounds like what you will have. Because mine was rectal cancer, I also had the radiation. It sounds like you're fortunate and won't have to have that.

Definitely get the port. I saw many people try to go through treatment without it, and I think they regretted it. Often, they would have to get stuck multiple times for the nurses to find a good vein. With the port, they have a large target, and it only requires one poke per round of treatment (the needle stays in until they disconnect the pump on the third day of treatment. I'll discuss that later).

The 5FU causes diarrhea, the Leucovorin didn't give me any real side effects, and the Oxaliplatin (Oxy) causes the neuropathy. The major combined side effect is loss of energy. I would sleep every day when I got home from treatment. On the first day of treatment each round, I would be green, and really wiped out.

Each chemo day, they would start by hydrating me with saline for about an hour. While the saline was going, they would take a blood sample to make sure my white blood cell count was high enough (CBC blood test). It was always OK, so I never missed a treatment because of the white blood count. The only treatments I had to miss were because of my infection, and I was too dehydrated by diarrhea to get treatment.

The next step was to hang 2 different bags of anti-nausea meds to infuse one after another. On the first day of each round, I would get both the Oxy and Leucovorin at the same time. It would take about 4 hours for the whole process on the first day. At the end of the day, they would give my 5FU infusion over a few minutes, with a syringe. Then they would connect my infusion pump, which will infuse the remainder of the 5FU over 22 hours. They scheduled my appointments so the 5FU would just run out (or be really close) at the beginning of the next treatment appointment. The infusion pump is worn around your waist, kind of like a fanny pack, with the tubing running up to your port (mine is in my left upper chest).

The second day of the round is the same as the first, except no blood test, and no Oxy is given. The second day goes a little quicker, generally. They disconnect the pump and start the saline, then anti-nausea meds, then leucovorin. When that's done, they infuse the 5FU, then reconnect the pump with a new bag in the pump. If I remember correctly, the second day of 5FU was about 1/2 the amount as the first day. Again, it's given over 22 hours.

The third day, they remove the pump, then flush the port and remove the needle. You go home and rest.

On the fourth day, I would get an injection of Neulasta. It is a drug that helps keep your white blood count up. You can give this to yourself, or take it to the offect and have them inject you. It is a prescription that comes in a prefilled syringe, so I had it mailed to me, and my wife would administer it (I think I mentioned previously that she's a nurse). I don't care for needles, so I let her take care of it. Actually, now that I think about it, I'm not so freaked out by needles any more. Some doctors use a different drug, which I think is taken over several days instead of the single injection. Neulasta has a side effect of aches and pains, especially in the hips. It causes your bone marrow to kick into overdrive to keep the white blood cells up, and the hips have a lot of marrow. It is an expensive shot. I think each syringe is about $1200. Luckily, my insurance covered it, but it caused me to max out my prescription coverage for the year last year.

I usually didn't feel too bad after the third day. The anti-nausea meds have a side effect of constipation. This holds off the diarrhea that the 5FU causes. I always started day one on Tuesday, and ended on Thursday with the pump disconnect. Saturday afternoon is when the constipation always seemed to leave, followed closely by the diarrhea. This would last for a few days, but was not unbearable (until I got the infection and was in the bathroom every 5 minutes).

There is a week between treatments to enable you to recover. I didn't feel too bad that week, for the most part. My biggest problem was exhaustion. Doing the smallest task would wipe me out. Take a lot of naps. You'll find that you will have a good time of the day, followed by the down time. Schedule your activities during the good time, and rest in the down time.

There are 2 anti-nausea meds that they prescribed me for home use, but I didn't have to use them too often. They were Zofran and Compazine. They work differently, so you can use both at the same time. Compazine is faster acting, but shorter duration. Zofran takes longer to work, but is longer acting. They will both have the side effect of constipation, so keep that in mind. Sometimes, they would have me take them just to get the side effect to act against the diarrhea. They also had me keep Immodium on hand, in case the diarrhea got too bad. I think I used that mostly during my radiation treatment (which was done in conjuction with treatment, during the middle 4 rounds).

The main, lasting side effect that I still have is the neuropathy. I'm still working on regaining stamina and strength. I'm not back to where I was, yet. The neuropathy is difficult at times. I didn't have lasting effects until the last 3 rounds of treatment. It basically feels like your getting pricked with needles in your fingers, and sometimes toes. If you drink something cold (cooler than room temp, I found), you'll feel your throat kind of tense up/close up when you swallow. If that happens, change to a warmer drink, or warm your drink up. If you reach into the refrigerator, wear gloves. You won't like the feeling in your hands when you grab a cold jug of milk. I made this mistake, and immediately put my hands under warm water. My best suggestion would be to get a pair of winter golf gloves, and wear them around the house during treatment weeks. If it gets too bad, talk to your doctor, and they can modify the Oxy dose.

I take another med that has a side effect of numbing nerves. I think that this drug masked the extent of my neuropathy, and I may have permanent neuropathy. The doctors said it could take over 6 months to go away. My feet always feel like they are cold, even if they are actually hot. I wear socks all the time, because the tile and hardwood floors are kind of painful. My hands feel like the finger tips are numb. I've cut my finger tip (accidentally) without feeling it. The best way to describe it is the numbness/tingling you get after you hit your finger while hammering, but constant. I haven't really been playing my guitars because I can't really feel the strings. Typing takes quite a bit of effort now, because I can't feel the keys, or the little bumps on the F and J keys. I'll often find myself off by a key to the left or right, and have to type things over if I'm not looking at the monitor. It's taken me about 45 minutes to type this note, which has probably only taken you a couple of minutes to read, and I'm a fairly fast typist. Granted, a few minutes were used to get my thoughts together.

Because of the time of year I had treatment, I went through the Winter. I was unable to go out and shovel when it snowed, and had to bundle up more than usual. This was one of the most difficult things for me, not because I like to shovel snow, but because it killed me to see my wife go out and do it. To top it off, we had near record snow this year. I tried to go out once, and she yelled at me to get back inside. She told my doctor on my next visit, and he yelled at me too. Because of where you live, you will have to take the same precautions when it gets cold.

I hope this bit of info helps you to know what to expect. Of course, you may not have these side effects at all.

I know what you mean about being young at the doctor's office. I was 36 when I started treatment, and was the youngest, by far, just about every time. There was one or two days where there were people probably a few years older than me, but that was it. It was a strange feeling. I could tell that some people were not doing very good with the treatments, and I felt so bad for them. They were doing the best they could, but it was taking a toll on them, and there was nothing I could do to help them.

You'll have a lot of free time while sitting in the chair during treatment. Our office has a TV, but my mind wasn't really into watching. I took my Ipod and just closed my eyes, listened and relaxed. I also would take magazines and books, and I would occasionally journal. Some people would bring laptops or portable DVD players and headphones. Some ladies would knit. Some people would just sleep. I sometimes miss that time (but not the treatment part), because it was my time, and I knew I would have it, and nothing would interrupt it. I did a lot of reflection about life during that time. Now I find it difficult to get such a large block of time to do so.

Hopefully they come back that it wasn't rectal cancer, and you won't have to go through the radiation. I was told that with colon cancer, radiation doesn't help, because colon cancer doesn't come back to the same spot in the colon, if it comes back. Rectal cancer tends to reoccur in the same area, so the radiation targets the area to get rid of any lingering cells.

Sorry about the length of this email. I tried to get a lot of info to you. I'm sure I missed something, so if you have any questions, please let me know. I also have an unopened copy of the book, "100 questions and answers about colorectal cancer" if you would like it. The oncology nurse gave me one, and so did the radiation-oncology nurse. If your interested, I'll send it right out. It has a lot of information that I found helpful.

"Take care of yourself. That is your only job right now." That's what my oncologist told me, and I think he was right. This is a time that you have to let others help you and take care of you when you need it. You only need to concentrate on making yourself better.

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Post subject:
Posted: Thu Jun 26, 2008 12:26 am
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Barry: just to answer your original question, I certainly have no problem with anything that's going to get Mike's thoughts off of the situation that he's facing.

That said, if not for the neuropathy concern Mike mentioned, I was going to suggest maybe we work together to help him get a G-DEC (i.e., as an alternative to asking for straight-out cash donations). I *might* even be able to assist in that effort. ;-) Of course, Mike would have to pipe in here as to whether that would be appropriate or even desired given the circumstances.

My one word of caution here: as you know there are many other forums out there that tend to employ rather aggressive, guilt-inducing tactics to get their visitors to make donations, and we're simply not down with that. So, if you do proceed with something here, just make sure you keep it positive, upbeat, and entirely 100% voluntary!

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Posted: Thu Jun 26, 2008 7:16 am
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count me in!


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Post subject:
Posted: Thu Jun 26, 2008 8:10 am
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Brad Traweek - Fender wrote:
Barry: just to answer your original question, I certainly have no problem with anything that's going to get Mike's thoughts off of the situation that he's facing.

That said, if not for the neuropathy concern Mike mentioned, I was going to suggest maybe we work together to help him get a G-DEC (i.e., as an alternative to asking for straight-out cash donations). I *might* even be able to assist in that effort. ;-) Of course, Mike would have to pipe in here as to whether that would be appropriate or even desired given the circumstances.

My one word of caution here: as you know there are many other forums out there that tend to employ rather aggressive, guilt-inducing tactics to get their visitors to make donations, and we're simply not down with that. So, if you do proceed with something here, just make sure you keep it positive, upbeat, and entirely 100% voluntary!


Brad,
Thanks for your kind response. I am not sure how to go about getting donations for Mike, or even where anyone who was "voluntarily" interested would send donations. My initial thought would have been to have any donations sent to Fender (care of you) and then Fender write out a check from the Forum to Mike.

The G-Dec sounds like a great idea. And perhaps anyone interested could donate for that instead?

Mike has already voiced his feelings, but we must be able to help somehow. And already folks are logging in and volunteering by saying they would donate.

Let's see what Mike says about your message.

Thanks again!

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Posted: Thu Jun 26, 2008 10:51 am
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Brad Traweek - Fender wrote:
Barry: just to answer your original question, I certainly have no problem with anything that's going to get Mike's thoughts off of the situation that he's facing.

That said, if not for the neuropathy concern Mike mentioned, I was going to suggest maybe we work together to help him get a G-DEC (i.e., as an alternative to asking for straight-out cash donations). I *might* even be able to assist in that effort. ;-) Of course, Mike would have to pipe in here as to whether that would be appropriate or even desired given the circumstances.

My one word of caution here: as you know there are many other forums out there that tend to employ rather aggressive, guilt-inducing tactics to get their visitors to make donations, and we're simply not down with that. So, if you do proceed with something here, just make sure you keep it positive, upbeat, and entirely 100% voluntary!


I think if Brad could set up a location for us to send any voluntary donation, getting a G-Dec should be no problem at all. As many "regulars" that come here, it shouldn't take much of a donation (each) to get up to the price of a G-Dec. In turn.....perhaps Fender itself, could help by only charging a wholesale price (would never ask Fender to lose any money on it), or whatever price, say.......a dealer would pay for it. Like I said.....as many regulars that are here....it should only require a small donation.

Also.....if this becomes a reality.....the thread that is used to announce the project should be locked, so that if some of us are away for a week or two, it'll be there for when we get back. I'm always traveling back and forth between two locations, one of which, I rarely have puter access.

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Post subject:
Posted: Thu Jun 26, 2008 11:21 am
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Actual implementation would be easy cheesy, no worries there. That said, let's wait for Mike to pipe in here with some thoughts -- he may not even want this degree of attention cast on what no doubt is one of the most traumatic experiences of his life!

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Posted: Fri Jun 27, 2008 6:40 am
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Thanks again to all for the positive and thoughtful comments and suggestions, prayers, good thoughts and general upbeat posts.

I originally didn't want to mention anything about my cancer situation because I was afraid that it would result in a "pity party", but I was extremely happy to see and read how this community has poured their hearts out with positive posts for me, as well as for Chet, and it has really overwhelmed me and my family.

I've been doing a lot of thinking in trying to get my thoughts together before writing this. I realize that I may not be able to gig on a regular basis for a long time, and having a G-DEC to keep my chops in shape for the occasional gigs that might come back after the chemo treatments, would be something that I cannot afford due to medical deductables, co-pays, etc.

That being said, I would be very humbled and greatful if anyone would want to help me to acquire a G-DEC, but I want to make it perfectly clear that if so, it would be completely voluntary, as Brad has mentioned.

I have an appt at the chemo clinic on Monday and will have a minor invasive surgery to have a "medi-port" implanted on Tuesday which will save some of my veins from the needles while undergoing the chemo treatments. The port will be implanted in my chest above my heart (this scares me !)

I still wake up and think that this is all a bad dream and can't be happening to me, but then reality kicks in, and I know that I need to be strong for myself and my family. The positive comments have helped a lot and if nothing else, I am grateful for those alone.

That being said, if it happens (G-DEC), I will be forever greatful, but if it doesn't, I will understand. Words just can't express what I'm feeling at this time. This community shines for me with kindness, strength and positive vibes which show in your comments. Thank you again to everyone in the Fender Community here and at FMIC !

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Posted: Fri Jun 27, 2008 8:08 am
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Brad Traweek - Fender wrote:
Actual implementation would be easy cheesy, no worries there. That said, let's wait for Mike to pipe in here with some thoughts -- he may not even want this degree of attention cast on what no doubt is one of the most traumatic experiences of his life!


Now that Mike has spoken I say lets get this ball rolling.


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Posted: Fri Jun 27, 2008 12:49 pm
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Mike: thanks for the response, and best of luck to you Monday and Tuesday! You'll be in our thoughts.

Regarding the fundraising component, sounds like we're cleared for takeoff -- let me get the details solidified on this end and will start a new "sticky" thread early next week on this topic.

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Posted: Fri Jun 27, 2008 12:51 pm
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FWIW, I got a bill in the mail today for $3986. for my scope procedure !

I called the insurance company and they claimed I only need to pay a co-payment of $150.

I asked the insurance person if they could straighten it out with the hospital and was told, "no, we don't do that." :evil:

So after several voice-prompt greetings from the hospital billing group, I finally got a person who agreed that the bill was incorrect and they will re-bill me for $150.

As a side note* (It was billed as a non-standard procedure, if they didn't find the malignant tumor, it would have been covered at 100% with my primary care doc's referral, but it had to be billed as an outpatient service due to the nature of the findings).* It still doesn't seem right.

I can only imagine what the surgery, hospital stay, radiology and other bills will trickle in like. :roll:

Ringo was right - "It Don't Come Easy"

Have a good weekend everyone !

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