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 Post subject: A plea to my fellow cruisers! I need some help & support!
PostPosted: Sat Apr 07, 2012 3:46 pm 
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Joined: Fri Nov 23, 2007 10:38 am
Posts: 447
Location: Boston, Ma. Put on a happy face!!!
Hi Jamily,
So the reason I've been MIA for so long is that in June '11 I was diagnosed with advanced stage 4 Appendix cancer which had spread and caused extensive tumors throughout my abdomen. When Appendix cancer spreads from the origin and seeds in the abdomen it's called Pseudomyxoma Peritonei, or PMP. It's an extremely rare and deadly form of cancer. Most doctors will never see a case come through there office. Alot of people get misdiagnosed initially. The doctors that are experts in this cancer and it's treatment are few and far between. Luckily, there is a specialist here in Boston I was immediately refered to.

Within 3 weeks of diagnosis I was scheduled for a radical and invasive surgery to remove all the tumor if they could.
I was opened from pelvis to sternum. My abdominal cavity was full of tumor, but fortunately it was all surface tumors and easliy removed. It was miraculous that it hadn't invaded any vital organs such as the liver, stomach or pancreas.
Along with the tumors I had several peices of my insides removed as well. They took my; Appendix, Gall Bladder, Spleen, 1 ft of colon, 1 ft of small intestine, my entire omentum (fatty layer that cover the entire abdominal cavity, they scraped tumor off my diaphram, peritoneal abdominal layer, bladder and removed tumor from my pelvis. The surgery was succefull in removing all visible tumor which is very good.

Immediately following the surgery they perform a procedure called a HIPEC (Heated Intraperitoneal Chemotherapy). They close up the incision but leave a tube in the bottom and top, then they pump a very concentrated chemo solution heated to 110 degrees to hopefully destroy any microscopic cells.
I was recovering good from the surgery and sent home after 7 days. I was home for about a week when I got sicker than I've ever been, severe pain, vomiting, shivering, semi-blindness, passing out, etc. I was rushed to the hospital where I collapsed in a whellchair in the emergency room and woke up in the ICU 8 days later with drain tubes and an Ileostomy bag coming from my belly.

Apparently I had developed a nasty infection at the surgical site where they resected my colon, the sutures came undone and I had feces leaking into my abdomen. I went into septic shock and was developing blood sepsis. They told my Mom I had a 50/50 chance. I was on life support and they almost lost me one day during the surgeries. i had to have 2 emergency surgeries to repair the problems and they gave ma an Ileostomy to isolate my colon and let it heal. I remained in the hospital for another month. I went from 220lbs to 160lbs in 6 weeks. My body was devistated and I was so sick. After finally getting home it took me months to recover from the experience, get better and get my energy back.
The Ileostomy bag was no fun. In the beginning it kept leaking stomach fluids under the adhesive of the bag and burning my skin. It was horrible. I was only supposed to have it for 6-8 weeks but when they did a test they found my colon still had a perforation that hadn't healed yet. So he told me we would check every 2 months and reverse the Ileostomy when the colon healed. It never healed. i had the Ileotomy bag for 7 months.

Eventually I figured out how to manage the bag, prevent the leaks and I got really used to it as I was getting better. I had learned to live with it. In fact, by Oct I was socializing again, going on trips to NH with my girlfriend, ran security at Bear Creek Festival as I do every year, did the Phish New Years run in NY city, was back in the gym by Dec/Jan, my belly incision had fully healed and I was feeling good.

In Jan my doc took another look at the colon and told me it hadn't healed and he'd have to open me up again to fix it in order to reverse the Ileostomy and get rid of the bag. I was not thrilled about more major surgery but I went in on feb 7th to get it done. I had also developed a fistula and hernia he needed to fix as well.
My surgeon was only supposed make a 4-5 incision but when they opened me he realized I had so much scar tissue, etc that they couldn't get at what they needed to get at...so he opened me all the way sternum to pelvis again for the 4th time in less than a year! :shock:

I was released home after about 5 days and 2 days home I started getting fevers, shivering and in severe pain. I knew I was had developed an infection and was rushed back to the hospital. They discovered had "acute E-coli infection of the anterior peritonial cavity". They had to stick a drain tube through my abdomen while I was concious to drain it. No fun. I was put on IV antibiotics and sent home 3 days later with the drain still in me. A week later, I started to develop another infection but I caught it early enough and it was treated with an overnight stay & oral antibiotics. Eventually the infection subsided. It sucked!

But, the surgery was done! The Ileostomy bag was gone! I was going to get the drain tube out and was looking forward healing up and having a beautiful summer avoid of surgeries, bags, tubes, pain meds, etc.
I arrived at my surgeons office and he told me that when I was in surgery a few weeks before he had biopsied 4 lymph nodes and resected the peice of damaged colon. The pathology results showed 1 out of 4 lymph nodes and the outer surface of the colon showed small clusters of cancer cells present! WTF!!!!?

So now Im required to do 6 months of bi-weekly chemo called FOLFOX. 3 days per round for 12 rounds. They infuse you with one drug the first day at the clinic and you're sent home with a pump that gives you anpther drug for 46 more hours. I just finished my first round Thursday. I was told to expect extreme sensitivity to touching and drinking cold things while doing the round. I never got that side effect. Other expected side effects are fatigue, nausea, diahrea, mouth sores, neuropothy (numbness in hands and feet) among others. I din't real.y get any of these side effects this past week except fatigue, very lethargic yesterday especially. Couldn't sleep well. Loss of appetite a bit one of the days but not nausea. Im hoping that this is a sign that I wont get severe side effects. they say everyone is different and reacts differently. Alot of people tell me that it's cumulative and I'll eventually feel some side effects. Im just hoping maybe after going through 10 months of hell, pain and suffering I'll catch a break. I'm hoping this chemo treatment will do the trick and I can move on with my life! :wink:

Regardless, Im already moving on with my life! Life is for living right!? Im going to Jazzfest in a few weeks and I still plan on having a great summer/year; working and attending some music festy's, traveling, camping, BBQ, gardening, exercising and making the best of it. I'll be back at Bear Creek and Im already pre-booked for JC11. I'll finally get my robe and RO status this year! :D

Through all of this I've found a great desire in my heart to help others with this horrible misunderstood disease, raise awareness and funds for research of treatment and hopefully someday a cure.
In fact, I've recently organized a cancer benefit event happening next weekend 4/15 in Boston called DC presents "Beat the Funk out of Appendix Cancer & PMP".
This will be an amazing night of awesome live funk bands (including members of Sam Kinninger Band, Lettuce, John Browns Body, Alan Evans Trio, special guest vocalist and JC alumni Michelle Sarah of Coppertonic, etc) funknjazz DJ's, food n drink, live raffles and an online auction going up in a day or so with some great items including:
-2 VIP Bear Creek Music Festival tix
-an original Benjammin TieDie Tapestry and 7 Walkers vinyl both signed by Billy Kreutzmann, Papa Mali, George Porter Jr. & Matt Hubbard
-original art and apparel by LEBO
-original art buy longtime Jamcruise artist Jonah Anderson
.....and much much more!

Check it out! Here is the FB invite!
https://www.facebook.com/events/123405607788584/

Here is the link to buy tickets, donate or link to the upcoming auction.
http://dcrockspmp.pmpcure.org/

I'm teamed up with a legit 501c3 charity called the PMP Research Foundatin pmpcure.org to ensure all the funds raised go towards PMP Research Grants!

Please support my cause!
If you're local, get a ticket, come on out to the show!
If you can't be here please please please find it in your hearts to donate to my event and support this very rightous cause!
Every little bit helps!
The life you help save might be mine!
Thank you & very sincerely,
DC :D

**please share with anyone who might be interested in helping out!

_________________
"Aslan....It's pronounced D-Sizzle"


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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Sun Apr 08, 2012 12:18 am 
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You are a trooper and an inspiration...Donation sent!

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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Sun Apr 08, 2012 1:48 am 
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Best wishes to a full recovery! We have yet to meet, but hopefully on JC11 ... still not sure I can fund JC11, but this seems like a worthy cause! I faced a different kind of mortality but it does open your eyes to the limited time we get on this planet and how to accept the gift just being able to experience each new day and the people that make life so great and interesting. I will be a non attending supporter of this cause but donation made. Again, best wishes for a full recovery and success in helping others!

Peace!
GD

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Nine mile skid, on a Ten mile ride.

JC8, JC10


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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Sun Apr 08, 2012 10:09 am 
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Joined: Fri Nov 23, 2007 10:38 am
Posts: 447
Location: Boston, Ma. Put on a happy face!!!
Thank you sooooo much guys! I really appreciate it. Facing a situation like this definately opens your eyes to how fragile and precious a gift life is. You start to see things very different. I see everyday I've lived and everyday I continue to live as such a blessing. It's made me more empathetic to others, love my family more, appreciate my friends more, appreciate my god, appreciate the clear blue sky as much as the grey rainy day, stop and smell the flowers, etc. Things that used to make me mad don't bother me as much. I'm definately worried about the unknown and have certainly had my very bad days, but I continue to be very strong of body and mind, have a positive outlook and am convinced I will beat this. I think that's half the battle! Alot of folks would keep this kind of thing to themselves but I let all my friends know right from the beginning, along with my family creating a very large support system that I dont think I could get through this without! I also get the satisfaction of sharing my experience and raising awareness of PMP.
Find me on the boat....it'll be easy....just look for the guy with the giant scars down his belly lounging at the pool! :wink:

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"Aslan....It's pronounced D-Sizzle"


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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Sun Apr 08, 2012 10:49 am 
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Joined: Thu Dec 25, 2008 11:12 pm
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Location: Northern Virginia
I was sad to hear about the latest but you're one hell of a fighter and you can totally do this, you've proven that already. :DANCE: I'm sure we'll see you at Bear Creek, but it'll be BRRRRRRR and we'll have to wait to admire the scar on the warm ship. :P Have a great event next week, I'm going to send the link to some Boston friends too!

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"This banjo needs some wah."
"a perfect blend of functional and dysfunctional rolled into one smiling package of joy"
"What happened, you ran out of fabric?"


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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Sun Apr 08, 2012 10:46 pm 
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Joined: Wed May 14, 2003 1:10 pm
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Love you. What is the deal with the auction?


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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Mon Apr 09, 2012 12:50 am 
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Joined: Fri Nov 23, 2007 10:38 am
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Location: Boston, Ma. Put on a happy face!!!
evenstar wrote:
Love you. What is the deal with the auction?


Hoping to go live with it tomorrow! :)

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"Aslan....It's pronounced D-Sizzle"


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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Mon Apr 09, 2012 8:24 am 
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Location: Washington DC
I knew you had been going through a rough stretch health wise, but I had no idea it was this horrible. Man, I wish you all the best. Keep on fighting as you have, with the positive spirit you display here I am sure you can see this through all the way to the end!

I will spread the word about the event, and hopefully I will get to see you and say Hi at Jazz Fest in a few weeks!

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“One good thing about music, when it hits- you feel no pain”

Bob Marley


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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Tue Apr 10, 2012 10:17 pm 
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Joined: Wed Aug 19, 2009 8:44 pm
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Oh man. This is a pretty awful road block, but I think that your positivity will carry you through it. Best of luck to you. I am continually inspired by human resilience. You just added to that inspiration. Donation sent and information forwarded to others.


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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Wed Apr 11, 2012 9:16 am 
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You are an inspiration. I know that it is not easy. I had a large (and a couple small) abdominal tumors removed last month, invasive abdominal surgery sucks. I was lucky, everything came out the way it should and I am on the road to a full recovery now. I know you will find your way past this soon, I can see that you are a fighter, Keep Fighting! I have sent a donation and also forwarded this to some friends of mine that gave me support through my surgery.

Healing Light!

Allison.


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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Wed Apr 11, 2012 11:58 am 
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Joined: Fri Nov 23, 2007 10:38 am
Posts: 447
Location: Boston, Ma. Put on a happy face!!!
Hello funky people!
Our auction site is up! https://www.biddingforgood.com/auction/ ... =154853486
I've started adding items such as the Bear Creek tix, Celts tix, Signed 7 Walkers Album and Benjammin Tie Die Tapestry. I will continue to add items through the day! There are also some pretty high end items donated by other organizations. You can also add items to contribute to the auction yourself. If you see something you like and are on the fence about buying it, just remember that all the money goes directly to PMP Cancer research! Bidding will continue live at the event! Thank you sooooo much for the support! -DC

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"Aslan....It's pronounced D-Sizzle"


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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Wed Apr 11, 2012 5:17 pm 
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It's just gut wrenching to read what you're going trough. I'm sending you all the positive energy I can. Also sent your charity some $$$. I'm looking forward to meet you at JC. I know people who have had cancer and it seems that the best weapon you can use in that fight is the "mind over matter" factor. From your post it sounds like you have plenty of that! Hang in there, man!!
Knut

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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Thu Apr 12, 2012 5:23 pm 
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Location: PDX
DC,

We funking love you !!! Keep on fighting, brother

Sending you a few Phish Tahoe posters, a Lost Sailor belt & hopefully a few 'Grateful Don' buckles.Great talking to you last night.....can't wait to see you out west this summer.


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 Post subject: Re: A plea to my fellow cruisers! I need some help & support
PostPosted: Thu Apr 12, 2012 9:45 pm 
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Joined: Fri Nov 23, 2007 10:38 am
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Location: Boston, Ma. Put on a happy face!!!
Thanks so much to those of you who have donated. I'll be sending you a personal thanks after the event!
You guys rock! :CLAP:
Much much love!
DC

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"Aslan....It's pronounced D-Sizzle"


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