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Cancer Survivors Who ride

pdrysea2

New member
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,
 
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. <g> 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:
 

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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.
 
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.
 
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.
 
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.
 
Great to hear from each of you

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
 
The good, the bad, and...

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
 
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
 
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
 
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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
 
I had not been feeling just right and after a series of quick exams decided to change physicians. The first physical with the new doc was to be a two part affair. I returned to my office after the first half to see my message light blinking. It was my new doctor and he wanted to see right away. He would wait until I could get back no matter the time. This visit lead to a referral to an oncologist he already set up while waiting for me to return for the next day. At the end of day two I was told I had stage 4B Hodgkins. I was told to go home tell my family, contact my lawyer to get my affairs in order and contact my minister and plan my funeral. Then he looked me square in the eye and said, then I want to admit you to hospital tomorrow at __a.m. for some more tests, drain your lung and start curing the cancer. This was the beginning of 18 months of chemo followed by a month of radiation.

I had ridden to the first assessment appointment. At one point early on in treatment my oncologist told me to stop riding. My immune system was nonexistent and road rash was a greater risk to me than the cancer. I told him I had already sold the bike as part of ?getting my affairs in order.? Hmmm was his response as he made a note in his papers.

Roughly two years later we were talking about test results as part of my remission follow up. The results were good. He was pleased with the stamina I was showing as I recovered from the side effects of radiation. As the exam ended he began writing and telling me; ?This is not a prescription but it is your doctors advice at this point.? He put it in an envelope and handed it to me. I read it in the car during the drive home. The note read: Find your helmet and buy a motorcycle.

This was twenty two years ago. My medical record since then is a disaster. I rarely get sick in the normal way of colds or flu, instead opting for two more bouts of different forms of cancer and a quadruple bypass. Part of my recovery plan made up with my doctor in all of them was a return to riding and other activities I enjoy at the appropriate time. Life is the treatment. Chemo, radiation, recovery and riding are events in that treatment.

I wish many more riding events for you in the future of your life. Good luck.
 
Thanks for your post.

Interesting about your "first" doctor - I had not been feeling right and the last two visits had gone with lists of things that just weren't right. He brushed them aside. It was like my body was pushing different buttons trying to get my attention. Good thing I didn't listen to him! I now have a new primary.

"The note read: Find your helmet and buy a motorcycle." How great is that?? Riding is good treatment!!

I have been working on my stamina using a pedometer to track steps and have gone from around 2,000 steps (roughly 1 mile) a day (during chemo weeks it was usually less than 1,000) to more than 7,000 every day for the last 4 days (even topped 8 yesterday!). I'm exhausted at the end of the day, but determined. I WILL soon be back on the bike - I've got some surgery next week so it will be a little longer, but not much! :)

It sounds like when you do something, you really go all out. Sorry to hear you've had such medical issues. My husband had an emergency triple by-pass, so I have an idea of what you went thru with that. Thank you for your encouragement - it means a great deal to me!
 
Thanks Laurie!

Laurie,

Great idea -- perhaps if I ride daily, I won't need to do the manual lymphatic drainage "massage"? :)

Do you wear compression garments when you ride? I've got a sleeve and custom glove, which fortunately I don't have to wear every day now. Usually I'm good with kinesio taping and recently don't need to do MLD every day.

I'm sorry to hear your cancer came back. How did you find out? Some of my cancer buddies haven't felt like their aftercare plans included enough screening for a return.

It's great to hear from you!
 
Good news!

In a previous post, I believe I mentioned there is actually HAIR growing on my head! It gets even better!!! I have progressed from peach fuzz to CARTOON HAIR!! -- what's there is very sparse and tends to stand out from my head. And it's long enough that I can actually grasp it!! I'm loving it.:groovy

Also on the good news front: Sigmoidoscopy and colonoscopy were clear; pelvic ultrasound was clear*, electromyography test (electrical stimulation of muscles to check for nerve damage) showed only minor damage to one nerve in each leg so we're hopeful the neuropathy will continue to fade, and I (!) mowed the lawn yesterday! OK, so it was a zero turn mower and so it wasn't really much work... but it sure felt good!

* the medical oncologist at one of my last visits asked when I was having my hysterectomy. This was completely out of the blue - we had discussed in December because of an extensive family history of cancer, but I'm negative for the BRCA 1/2 gene and NO relatives had ovarian cancer despite lots of breast cancer. So this was a real blow to me - another 6+ weeks for recuperation after surgery - another 6+ weeks off work -aaarrrrrrrrggggghhhh! I was REALLY angry, which is quite out of the ordinary for me. Went to the gynological oncologist and he said "what are you doing here??? the risk from surgery is greater than the risk of ovarian cancer!" Oncologist had been on vacation and I think he did not review my chart before the appointment and confused me with someone else. Doesn't do much for my trust in him... :(

Next week: CT scan, Bone scan, Bone density test, outpatient surgery to remove chemo port (it's been problematic), remove implant ports, and what I'm calling "touch-up" surgery on reconstruction. The plan is to go BACK TO WORK the week of July 22, starting part time and working up each week to more hours. Wooo hooo!
 
Post treatment question

1. Did any of you get a "Summary of Treatment/Care Plan Summary" explaining your diagnosis, treatments received, dosages, etc. after you completed treatment?

2. What about a "Followup Plan"? This would discuss what tests to get when/who to follow up with, risk of recurrence, health issues to expect, what symptoms should result in a doctor visit, etc.

I've asked for both, not sure what I'm going to get. My oncologist hadn't volunteered this information, but when I asked, said he'd "put it in a letter".

Thanks!
 
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