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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: http://www.victoryforums.com/showthread.php?t=19914&page=2

and here: http://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. cheers
 

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Thoughts and prayers.
 

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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.
 

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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.
 

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More Power to You!...A genuine battler..You're in my thoughts and prayers.
 

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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
 

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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.
 

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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.

cheers
 

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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 **** , 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 ... :ltr: I hope you all the best , and will certainly be in touch . GET BETTER !cheers
 

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best wishes and prayin for you.cheers
 

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Character...

“Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have - life itself.”

― Walter Anderson

Made me think of you. thumb up
 

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Best wishes and speedy recovery Luciferiad. Best wishes to your family too.
Come visit us down under when you are fit and healthy again thumb up
 

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Good luck to you sir. You will be in my thoughts and prayers.

I never dreamed I would know so many people afflicted with this heinous disease. The latest is a dear friend and riding buddy. He was diagnosed last August... Only in his mid-30's, wife, kids... I tell this story because this man is a true inspiration. Through the seemingly endless chemo and radiation, illeostomy, surgeries... He has barely missed a beat. He works OT every second he is in the condition to do so in order to support his family. He and his oldest daughter race cross country motocross... Even as he was told he was stage 4, he was racing... He flat refuses to let this take him down or wallow in self pity. I hope and pray that when I'm faced with this challenge that I have the strength and fortitude someone like him, or yourself, to get through it.

God Bless you!
 

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Discussion Starter #15
Update!

Fairly good news to report. I survived conditioning chemo with very little issue. No complications while in the hospital. Blood counts started coming back up very quickly, and I was discharged on Wednesday! Once again, this was quite early (about a week and a half earlier than the norm) and my doctors were quite surprised. They'll learn; I endure.

Now is the long haul. I have to stay in Phoenix for a couple more months so my doctors can monitor me for graft vs. host disease (no signs of this yet) and other potential complications. Outside of that, I'm doing well, trying to stay active, and being bored. But the hotel room is far better than a hospital room, and I'm not tethered to an IV pole anymore.

Thanks everyone for your support. Just wanted to keep you all in the loop.
 

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Fairly good news to report.
Fantastic!

Wish I had some Idaho footage to share with ya, but I ain't nowhere near Idaho and my archaic video maker don't work with a crap on cruisers unless you want a video of the sky. It does okay mounted to my trunk facing backwards, but that's kinda goofy.

Speaking of vids, I wonder what happened to Kevin from Utah. He used to be good about uploading his rides pretty regular.

Anyway, keep up the good work. cheers
 

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Please keep up the good fight. You will be in my thoughts and prayers! Hopeful you will be back on your bike soon. Thanks for sharing your story.
 

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I'm late to this party, but want to add that I am admiring your positive attitude Luci--that's a huge ingredient to the recipe that will get you through this mess. As long as no one is telling you to pack your bags for the Pearly Gates, there's light at the end of your tunnel. I know, been there and still there. I had stage 4 and didn't know it when I launched a cross country ride. There were a few days I needed some extra rest, but other than that no symptoms. Cancer can be funny that way. I'm termed incurable but treatable and I can live with that.
But my situation pales to yours, what with a transplant and all the trimmings. Maintain that positive attitude and find things to laugh at and about, even yourself. Its the best medicine they say. No copay either.
 

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Hodgkin's is one of the cancers that can beat. I had mine and they cut me open from ear lobe to adams apples. They said I had 50% chance to live. I did 45 days straight of cobalt treatment. No one had even heard of chemo.
Your in a great place to be cured. You keep the faith and we will keep you in our prayers
 
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