Cancer Survivors Who ride

[pdrysea2]

Anyone out there who has survived cancer and rides? I've got a question (OR TWO HUNDRED)... we'll start with...

What have been your two biggest challenges and what did you do/what was the result of facing those challenges?

I am currently in chemo and looking forward to getting back on the bike... but have MANY issues and would love to hear from other survivors or friends of survivors. The question applies to anyone who has had/has any cancer. It would be great to hear what kind of riding/touring whatever you did/do now.

Thanks,

[dbrick]

Hi Paula,

I'm sorry to hear about your diagnosis.

I had squamus cell carcinoma appear in my tonsils in 2007, began radiation and chemo concurrently in July, then in December had surgery to remove the mass in my neck.

I identify only one challenge: the physical issues. I was really sick: weak from the radiation and chemotherapy, I turned out to be allergic to several of the drugs I was given to ameliorate the side effects of the radiation and chemo. It was a tough road that included multiple hospitalizations. I'd be glad to write more privately; the whole course is probably TMI for the board.

The result was: I'm still here. I returned to work in February, and began riding again later in the spring. I am changed by the experience, too: never a Type A person, I'm even calmer than before, and more willing to show and share emotion. I retired at the end of 2011 at age 64, earlier than I'd expected, and am having a wonderful time. I celebrated retirement with a five-week ride that took me into Canada and as far east as Omaha NE.

Before, I rode the bike each year more miles than I put on the car: commuting and touring both.
After, it's just the same. I am actually more physically active than before, and I weigh a bit less, too.

Another rider who had cancer like mine has a nice website: howstom.com

Every spring since 1984 I've ridden to Death Valley. Here I am on last month's trip at the Saturday night BBQ:

[akbeemer]

I'm a recent cancer patient. Diagnosed in Oct with throat cancer, went thru chemo and radiation in Nov-Dec. I was in the hospital 72 days due to the effects of the treatment and an infection. I had my first food since Nov in mid March. The results of all of this is that I am much weaker and have far less stamina. I've been on two rides of a hundred miles and did okay, but would not have wanted to go further. Recovery takes time and requires patience.

[dbrick]

Kevin's right: it takes a long time. I didn't bounce right back, took a year and a half before I began to feel whole again.

[59312]

First of all congratulations on being a survivor! For the past 15 years I have participated the Atlanta Breast Cancer walks as a member of route safety. We ride motorcycles and bicycles during the event and help the walkers safely complete the walk. I started doing this in honor of a good friend who was diagnosed with breast cancer shortly after my wife and I moved to Atlanta. She is currently a 20 year survivor. Because of her operations she doesn't have a lot of upper body strength and now rides a sidecar outfit on long trips. She does ride a BMW R75 or a Sportster to work. My wife was diagnosed with breast cancer 5 years ago (she said I brought it home from the walks) and will be a 5 year survivor this September. We have a core group of motorcyclists who do the walks and about half are women. Most of them are breast cancer survivors. We also have a male breast cancer survivor. One of our group was diagnosed last month with breast cancer and starts her therapy next week. She has a goal of riding with us in the walk this October. If you decided you wanted to get involved with this type of activity you won't find a better support group anywhere. If you have any question please feel free to pm me.

[hexst]

I'm a survivor. in Oct 1984 diagnosed with non hogkins lymphoma was given three days to live, very aggressive chemo(one of the first to be given two protocols simultaneously) for 7 months followed by a month of radiation therapy. My rad. therapy ended in June of 85 at that time two friends and I did a ten day trip from Daytona to Cape May and back. probably shouldn't have done it as I was still under 120 lbs ( down from a normal at the time of 150) On the first day one of my friends following me kept getting hit with hair that I was loosing from the radiation therapy that had grown back from the chemo. I thought that was gonna be my last ride but have had the fortune to continue since then. It was about a year and a half to get all the feeling in my fingers and feet. On that trip I had to stay covered up especially in my neck area since I was very sun sensitive from the drugs and radiation. Fight the Good Fight and good luck.

[pdrysea2]

First, thanks to each of you for replying. I hate to hear that anyone else has the cancer diagnosis, but am grateful to know I'm not alone!

I've been looking for motorcyle/cancer support groups with limited success, so those leads are great too as well as hearing about your experiences. We're in St. Louis, but ANY that you hear/know of would be great.

Bear with me if I'm slow to respond to conversation - Thursday is my next chemo (taxotere now, the first drugs were Adryamicin and Cytoxin - sp!). I've been experiencing some "chemo brain" effects as well - so I'll try to check things before I reply (even knowing this, I somehow managed to write a check this month I didn't record for ~$200 and had no recollection of it and paid one bill twice), but based on the last treatment, I may be incommunicado for a bit.

In addition to the upper body strength issues, I developed lympedema in my left arm due to having 11 lymph nodes removed in my upper chest. So I may have future issues with that and riding/camping/etc. They tell you NOT to get bug bites on the affected limb, not to burn it, cut it, or scratch it, to wear compression garments when flying and not to overwork the limb. Sigh. The good news is I found a great therapist who helped me get set up and practice "manual lymphatic drainage", slowly build some strength in the arm and "work on" the scar tissue. She "released" me Friday to handle things on my own (crossed fingers!).

Ideally, I would like to set up some kind of website where we could share information, do surveys (riding tips, nutrition on the road, strength-building, environmental issues, whatever), etc. Problem is, I don't know the best way to do that yet. By trade I'm a trainer, so it would be cool to be able to share the info we gather to help others. This forum is a start.

May the best days of your past be the worst of your future,
Paula

[pdrysea2]

Another rider who had cancer like mine has a nice website: howstom.com

This is a GREAT website! Thanks for sharing!

[pdrysea2]

Some of the good news:

* chemo is OVER!!

* I can grow my hair again

* I can eat out! That means lemon in my tea, lettuce and tomatoes on my sandwich, fresh fruit, seeing people without fear of catching something that will be BADDDD for treatment (now I'll just get sick if it happens)

* my energy can start to come back!

* I can taste things again!

* my mouth has healed!

* etc., etc.,. etc.


The not so good:

* they stopped the chemo because of increased side effects including neuropathy - my fingers hurt/are numb/tingle, my feet/toes have some numbness...

* off to have a sigmoidoscopy next week for possible intestinal ulcer

* other miscellany that's annoying but at this point, livable

* onward and upward on what I call the "parade of doctors" - we WILL see this thru


The ugly:

* I'm sending hubby off to the Iowa rally without me - no way I can go - that's what's ugly. He deserves a break and will have FUN! I haven't been to Iowa for several years but always dream of the potato pancakes at the Amana colonies...


Have a great weekend all! Get out and ride - I'll be dreaming of doing the same soon.


Paula

[dbrick]

That's it: one foot in front of the other. Repeat.

Keep it up!

[hexst]

Oh yea! the little victories add to winning the battle keep looking UP!

[t6pilot]

I had prostate cancer six years ago, cryo-focal freezing been cancer free since, ride as much as possible
Very good friend just had stomach removed, cancer his third bout with the evil stuff, he rides daily, makes frequent stops for nutrition.
Keep riding, when you stop doing the things you like/love, you get depressed, and it makes a bad situation worse

[AKsuited]

I've had cancer 4 times but luckily it was basal cell skin cancer and was easily treated. I lost a good friend to melanoma which was extremely tragic because melanoma can and should be caught early, in which case it is easily treated. It still bugs me that my friend had seen my surgical wounds from having basal cell skin cancer removed from my face and yet he still became a victim of melanoma because he didn't have a suspicious spot looked at by a dermatologist.

My younger brother had melanoma but he was lucky that it was on his forehead and a family friend insisted he see a doctor. The lesion was removed and he has been fine ever since.

Harry

[Voni]

Sure do admire your attitude!

Keep us informed. We care

Voni
sMiling

[laurie]

Hi Paula,
I am also a survivor. I also went through the same chemo you have had. I celebrated being done with my initial treatment by riding from Seattle to Cabo and back with my husband and friends. Eventually your strength returns and you should be able to get back to longer rides. My lymphedema actually improves when I ride as long as it is not too hot. I think the arm position helps in addition to doing the exercises. If it becomes a problem I go swimming and that seems to help. Unfortunately my cancer came back and I have been in chemo for the last 2 1/2 years, but I can still ride and it is my most favorite escape. I call my motorcycle my therapist! Hope you are able to get back to riding and enjoying the bike. Wishing you the best.

Laurie