Here I go again... - Kawasaki Vulcan Forum : Vulcan Forums
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post #1 of 19 (permalink) Old 05-07-2014, 08:17 PM Thread Starter
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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.vulcanforums.com/forums/s...d.php?p=403570

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.

OURS
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"There is only one God, and His name is Death. And there is only one thing we say to Death: 'not today.'"
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post #2 of 19 (permalink) Old 05-07-2014, 08:47 PM
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Wow. That's a rough go. Sorry to hear of your troubles, and wish you all the best. Hopefully all goes well. Try to keep up the positive attitude! It seems to help the recovery process. Keep your eye on the prize-many more two wheeled miles

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post #3 of 19 (permalink) Old 05-07-2014, 10:49 PM
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Luciferiad, we wish you all the luck in the world man. May Godspeed your difficult journey.
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post #4 of 19 (permalink) Old 05-08-2014, 06:28 AM
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Pray with me friends.
Lord God in Heaven hear our prayer. You are Holy and Mighty. Please shower Your Love and Mercy over our brother and grant him healing! Let Your Peace and Comfort fill his soul with the Hope of Your Lovingkindness. Please let this treatment be successful. Guide those who are caring for him and wrap his loved ones in Your soothing embrace. May You be glorified in this trial. May You Will be done.
Amen!


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post #5 of 19 (permalink) Old 05-08-2014, 07:59 AM
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AMEN!! Praying for a full recovery, and many more wonderful miles. Stay strong brother!!
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post #6 of 19 (permalink) Old 05-08-2014, 08:50 AM
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Ditto Kawpoke. Saying a prayer for you too-cancer can be beaten - my son in the next room is living proof! Two years ago he had what they called one of the worst leukaemias you can get, after full body irradiation, chemo and a bone marrow transplant he is still around. Testament to a lot of prayers to our God.


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post #7 of 19 (permalink) Old 05-08-2014, 10:20 AM
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Hang in there. Remember that none of us is going to make it out of here alive, so the important thing is to make the most of each day we have.

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post #8 of 19 (permalink) Old 05-08-2014, 10:21 AM
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Quote:
Originally Posted by Kaw-poke View Post
Pray with me friends.
Lord God in Heaven hear our prayer. You are Holy and Mighty. Please shower Your Love and Mercy over our brother and grant him healing! Let Your Peace and Comfort fill his soul with the Hope of Your Lovingkindness. Please let this treatment be successful. Guide those who are caring for him and wrap his loved ones in Your soothing embrace. May You be glorified in this trial. May You Will be done.
Amen!


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Amen.
Christ be with you and your family.

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post #9 of 19 (permalink) Old 05-08-2014, 12:01 PM
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Best wishes to you Luciferiad. Keep your eye and your mind on your goals and you’ll do fine, one step at a time. In the mean time you can start an oil, Seafoam, or darkside thread; that should provide ample entertainment (and probably a few smiles). Best of luck!

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post #10 of 19 (permalink) Old 05-08-2014, 09:59 PM
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Hope this helps..........there is a book by a man who has had alot of success with treating your health problem............

Ty M. Bolinger Cancer:Step outside the box
www.cancerstepoutsidethebox.com

Also: www.mercola.com

You can Youtube...........Dr. Sherry Rodgers , Dr. Joel Wallach, Dr. Mercola.

Dr. Wallach's "Beyond Tangy Tangerine" Vitamin and Mineral Drink will help your strenght...........

Get well soon.........
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