Well, here I go again... - Victory Forums - Victory Motorcycle Forum
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post #1 of 32 (permalink) Old 05-07-2014, 07:57 PM Thread Starter
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Default Well, here I go again...

Last year I shared that I had treatment-resistent refractory stage 2 Hodgkin's lymphoma and had been admitted to the Mayo Clinic in Phoenix for an autologous bone marrow transplant. The forum showed an outpouring of support....despite the bickering and sniping (which I actually enjoy sometimes), you guys are pretty great examples of the two-wheeled brotherhood. If any you new guys wanna read that freakin depressing story, check it out here: https://www.victoryforums.com/showthr...t=19914&page=2

and here: https://www.victoryforums.com/showthread.php?t=21042

Well, since I went home last may I haven't shared much. Hate to be a downer, you know? Everybody got problems, don't need to hear about mine too. I kinda accidentally jacked the recall thread the other day, so I'd like to elaborate on what I said there, and catch up those of you who might be interested.

thing is, the high-dose chemo didn't eliminate my cancer last April. I wouldn't even call it relapse, because that's being way too generous. With an autologous transplant, we rely on the powerful chemo alone to do the job, but my cancer is resilient. It adapts. So I came in with cancer, and I went home with cancer. Everything else related to the transplant went beautifully, I'm happy to say. A couple minor complications that were easily handled, released from the hospital 4 days ahead of schedule, home by 44 days after transplant. Waaaaay ahead of the 4 months they say you should plan for. Unfortunately, I knew what I was going home with, and my oncologist at the Mayo and I had already discussed the next step: allogeneic (using a donor) bone marrow transplant. And I refused.

I went home and started an almost brand-new biologic treatment (the first and only for Hodgkin's) that seemed to work very well at first. I got to make 5 or 6 really great motorcycle trips with my wife. Put almost 9000 miles on the XR. My treatment showed promise and there were studies showing it could be used for long-term care as well. It fried the nerves in my hands and feet so they're numb and tingly, but still mostly useful, but no other issues from it.

Sadly, in January, my PET/CT scan showed that wasn't going to be a viable option. I wasn't stabilized. I had gone from stage 2 to stage 4 with metastasis to the liver and lung. When the treatment quit working, it quit hard. Well, that was the clincher. I would have to proceed, even tho I absolutely did not want to. I wouldn't have, had my condition not worsened.

I started a new chemo regimen that really didn't do much but dry out my skin and thin my hair some, but it nuked the cancer hard. I was able to catch some miles on the XR this spring too. Got restaged in early April, and we looked good to go.

We found 2 donors in the international registry (siblings weren't an option even tho I have 5 of them...only share both parents with 1 and she's got autoimmune issues and other factors that disqualify her). Went ahead and boogied back down to Phoenix for a week of testing...despite everything, I was still healthy enough for transplant. I managed to sneak in renting a XC from Scottsdale Indian-Victory for a nice 400-mile day ride, but that will be my last time on 2 wheels for some time.

So here I am again, trapped in a hospital room, just wanting to get better, get home, and ride. But this time I'll be in this room for closer to a month, and definitely have to stay in Phoenix till August...no going home before 100 days post transplant. Not only is there going to be high dose chemo, but we count on the donor's stem cells to recognize the cancer as foreign and attack it. That comes with its own risks, just as dangerous as the cancer. The donor cells might recognize my body as foreign and attack this. Serious business, this.

Once again, you guys will have to be my lifeline to motorcycling. My bike's 800 miles away, and it might be a long while before I'm healthy and strong enough to be riding it. Share pics, share stories, have good rides. Any of you visit Idaho, I definitely want a write-up and pictures.

You can call me Billy. Or Luci. But don't call me Shirley.

Mine:
2011 Cross Roads, crimson red
Lloyd'z ATS, IAV, VFC-III. Vic "High Performance" air filter. Ness Big Honkers. Funsies.

Hers
2015 Vegas 8-Ball

My musings:www.billyrulez.wordpress.com
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post #2 of 32 (permalink) Old 05-07-2014, 09:15 PM
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Best wishes and good luck. Keep up the fight.
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post #3 of 32 (permalink) Old 05-07-2014, 09:25 PM
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Thoughts and prayers.

2015 Cross Country (bought new 7/11/15)
2015 Suzuki V-Strom DL650 (bought new 4/26/17)
2006 Triumph Rocket III Classic
1/4 turn throttle ring
Tank riser
VM-1 DR cams
Timing wheel +4
Lloydz high-flow air cleaner
Bassani baffled OEM mufflers
PC-V 118hp 116tq
If it's not broke, make it better
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post #4 of 32 (permalink) Old 05-07-2014, 09:26 PM
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You sir are among the few reasons I retain some hope for our species. I am honestly in awe of your grace.
Expect pestering with photos.

Red.
2012
Cross Country Tour.


We can't help it
We just keep moving
It's been that way since long ago
Since the stone age chasing the great herds
We mostly go where we have to go

That was written by James McMurtry
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post #5 of 32 (permalink) Old 05-07-2014, 09:39 PM
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You sound like a very persistant and strong individual so I'm sure you will do everything you can to fight the fight.

Retired USAF, IYAAYAS!

2008 V-Star 1100 Custom Bobber project

2011 Crimson XR with Forged Highway Bars / Hard Bags / Passenger Backrest, Ness parts including Smooth Layback Plate Frame/Mount / Rad 3 Mirror / deep cut grips / drivers floorboards /shifter peg / brake peg / passenger pegs. Witchdoctor black rack, Lloydz filter / timing wheel / VFC III, 7Jurock windshield, Drag Specialties seat.
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post #6 of 32 (permalink) Old 05-07-2014, 09:46 PM
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More Power to You!...A genuine battler..You're in my thoughts and prayers.

Victory Vegas 2010
Lloydz 109"cube big bore
" " 495 cams
" " TorqueTubes
" " timing wheel @4 deg.
" " Primary plate
" " IAV
RPW Slash pipes
PCV
Progressive 465 rear shock
Kingpin USD Forks
18" XC front wheel
1 3/4" 'Burleigh Bars'
Stebel air horn
12.106 @110.90mph
114/123

Victory Cross Country 2010 (106)
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" " VM1 Cams
Home gutted exhaust
Maximus
Both tuned by [email protected] Dyno
110/116

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post #7 of 32 (permalink) Old 05-07-2014, 11:43 PM
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I am right down the street. No longer a Vic owner, went to the HD team but would love to be there for you and your wife. If she needs a break or company or just some folks to hang out with let me know. And anything you need just name it

Dave

Blame it on me
2014 HD Street Glide
2013 Vision Sunset Red
2006 Jackpot sold
2006 Vrod Screaming Eagle (sold)
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post #8 of 32 (permalink) Old 05-08-2014, 01:25 AM
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You're in my prayers. Keep your chin up, and hope you get back in the saddle soon.

Sent from my SM-P600 using Forum Fiend v1.2.7.

Please add your bike's year and model to your signature. Here's why.
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Riding: 2011 Cross Roads & 2016 Springfield
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Blest with victory and peace, may the heav'n rescued land
Praise the Power that hath made and preserved us a nation.
Then conquer we must, when our cause it is just,
And this be our motto: "In God is our trust."
And the star-spangled banner in triumph shall wave
O'er the land of the free and the home of the brave!
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post #9 of 32 (permalink) Old 05-08-2014, 08:04 AM
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You sir are an inspiration. The tone of this post left me in awe as well. I really don't know what to say. But I'm saying it anyway. Stay strong man. Kick its ass.


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post #10 of 32 (permalink) Old 05-08-2014, 08:50 AM
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You are in my thoughts and prayers brother , It is inspiring how this thing is kicking your ass right now , and you probably feel like shit , and yet you still get out for 400 mi day trips with zero complaints , just happy as can be to be on a bike ... This gives a new kind of meaning to guys that are healthy complaining cause their asses are sore from riding ... I hope you all the best , and will certainly be in touch . GET BETTER !

2014 Cross Country
2014 XC , Lloyds A/F , Timing Wheel +4 , PCV , Miller Mufflers , 1/4 Turn Throttle Ring , Dyno Tuned by KMC Powersports 98HP 113 TQ
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