“People die … Why we should go on, you might ask? Why don’t we all just stop and lie down where we are? But there is another truth, too. People live. It’s an equal and opposing truth.”
“What are my chances? It was a question I would repeat over and over. But it was irrelevant, wasn’t it? It didn’t matter because the medical odds don’t take into account the unfathomable. There is no proper way to estimate somebody’s chances, and we shouldn’t try because we never can be entirely right, and it denies people of hope. Hope that is the only antidote to fear.”
Lance Armstrong. It’s Not About the Bike: My Journey Back to Life. Berkley Books, New York, 2000; 3-4.
“I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you… we are in charge of our Attitudes.”
Rev Charles Swindoll.
“It’s about Kickin’ Melanomas Butt.” Jerry Sullivan
Look a Likes
I am am not a VICTIM of cancer. I am a person fighting an illness. I do not mind sharing my story. JOKE with me, LAUGH with me, CRY with me, TALK with me, TOUCH my life, but never PITY me ~jerry
UPDATE – April 26, 2010
Relay for Life.
Maureen and I are participating the Dennis Yarmouth Relay for Life. We would appreciate your consideration of a small donation. We will be members of Team Special K formed by employees at Wixon Middle School in memory of Kim Oliver a grade 8 science teacher who passed away from Breast Cancer.
The Dennis-Yarmouth Relay for Life will be held June 18-19 at D-Y High. Maureen came home from school and told me about the school relay “Team Special K” named in honor of Kim Oliver an eight grade science teacher who passed away after a battle with Breast Cancer.
Maureen told me she was volunteering to walk so I thought it would be great to support her efforts and will join her in the Relay. Even though I love to ride my bike, I really hate to walk and don’t do well. Maureen’s gonna kick my butt!
During her high school years Amanda walked with friends, later I found out that one of the reasons she did was because of my earlier diagnosis of Melanoma. She never made a big deal of it.. just did it.
Well fast forward. I’m now Stage IV and fortunate to be in medical trial that seems to be working. Last year I couldn’t walk to get out of my way. This year I feel more like a 20 year old.
The Melanoma Foundation of New England is my favorite Melanoma charity, and I’ll work hard with whatever time I have left for them, but I would like to ask you to consider a small donation the American Cancer Society in memory of Kim.
Lets back up a bit, rewind if you would. I’ll do my best to keep the update to the point.
December 2009.
440 miles on the bike at Planet Fitness. I was all set for 500 when I came down with the “cold from hell.”
The holidays were great. Nice crowd at Mary’s Christmas Eve and a great breakfast Christmas Morning. NO TEXTING AT THE TABLE GIRLS!!!! I guess I’m just an old fuddy duddy.
January 2010
My 48th week in the trial was reached on January 5th. Last year as we were getting the trial info Dr. Atkins told us that he had a patient in a similar trial using the same treatment that was then at week 48 and it was a milestone. Well I found out that that gentleman is still going strong at week 96. Scans were good and treatment went well with a few minor side effects. My immune system seemed to go crazy attacking the “cold from hell.”
Seems kind of funny sitting out during a snow storm. I did get one call to help out the young man who took over my plow route.
February 2010
My brother surprised me when he told me that he was selling his landscape business and was going to work for Penny, his wife. They expanded the offerings at the Village Store and Charlie was going to be the “Sandwich King” of the Dog House Deli. Charlie was even going to deli school.
I guess I’ve been hooked by this cycling thing. In some respects it’s my way of fighting back. My doctors are doing everything they can do to keep me alive and I’m just along for the ride.
When I started getting my strength back (thank you Ian) with the testosterone treatments. I knew that I had to get back into some type of reasonable shape. I had gained almost 45 pounds during the 9 months leading up to the diagnosis and I was just bloated.
Once I got back on the bike and decided that I should have the goal of at least one day of the Pan Mass Challenge I knew I found a way to fight back. Cycling! I had to get in shape and the way I figure if I can take a load off my system by being healthier all the better. The added benefit is that if this bastardly disease goes out of control I’ll be in better shape to tolerate some of the other treatments.
I’ve got a long way to go. I figure that I have to lose the equivelant of one small person to be at a real healthy weight.
All that rational out of the way. I’m have a good time working at this. During the month of November I have pedaled 328 miles with 8 days off due to schedule problems. From the day I started being able to track mileage on the bike sometime in October I’ve logged a total of 434 miles.
With the bad weather I’ve been forced into the fitness club most days although I did get to do a few “real” miles on Thanksgiving. The weather was a bit cold by the roads were only damp and most of the leaves had been washed to sides of the road so I rode until my lungs started complaining from the cold air.
So I am a bit obsessed with this cycling thing. I’m even looking forward to the ability to do long rides in the spring once the weather turns back. The stationary cycling does have it’s benefits besides warm and dry. There is no interruption for traffic / intersections / etc. There is no coasting down a hill and I’m able to keep a steady pace for the entire length of the ride. I can also vary the intensity of the workout. I’m increasing one step a week right now.
My legs are coming back to the shape I expected. I’m not loosing weight as much as I’m loosing inches. My testosterone levels have increased markedly and I’m just reach the 3 month mark when I should see the beginning of the significant impact according to the doctors.
I’m still not a bear on the hills because I’m carrying a lot of weight but on average terrain I can hold my own. I can’t wait to see what it will be like this spring after a few steady months of work.
Note: The written MRI report was slightly different and indicated that there were Four measurable mets rather than the Three originally indicated on the oral report. It’s still a very good indication and a total reduction of over 55% in tumor load ~jerry
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Just go back from Beth Israel. Initial MRI results ( written report not available yet) indicates that there are only Three of the little buggers left in my brain. The radiologist didn’t quite put it that way, the verbal report went like this “Of the THREE measurable etc…..” With shrinkage its about a 70% reduction in tumor load.
The CT scan showed stability in the lung mets and NO ACTIVITY in the abdomen.
Minor changes to my blood chemistry. Need Potassium and more Salt. Nothing major.
Let’s get one thing out of the way first. I’m a sentimental, emotional person. PHEW! That’s enough for now Dr. Freud.
When I started riding the bike and decided to make it something serious I took my new bike helmet with me to my appointments and asked all the health care professionals who worked with me to sign the helmet. It reminds me that it’s taken a whole team effort to get me riding and somehow it makes the sore butt and muscles worth the effort.
After a relative of a Warrior Angel asked permission to write names on his NY Marathon shirt I decided to add the names of Melanoma Warriors and Warrior Angels to my bike. The Trek Hybrid I picked up has a good sized frame and there are so many spots to put names. I want people to know why I’m riding when I start entering fund raising events. It will also give me a sense of purpose as I pedal during training and honor all who are listed on the bike.
The first name on the bike is that of my uncle/godfather John Sullivan, Warrior Angel.
I’d be honored to add your name or that of your Warrior Angel to the bike. Please send me an email Jerry AT JerrySullivanCapeCod.com
Everyone who asks about the names will get a brief written request for support of a melanoma charity of their choice.
It’s been awhile since I’ve posted and I’ve really not mentioned too much about the workouts. I’m still trying to get 6 workouts a week of 10 miles or more. This past Saturday was a glorious fall day so I celebrated with a 21 mile trip on the Cape Cod Rail trail.
On the days that it’s wet or too cold I head to Planet fitness and work on a stationary bike. It’s a good break because I can work on keeping a cadence and the workout options will throw in random climbs so the workout is pretty good.
I’m slowly building up my endurance and plan to do some distance fund raising rides next summer….
I had my 36th week clinic visit on the 13th of October. The scan results were good. Today they were confident to confirm that the tumors on my adrenal gland and small bowel were “resolved” GONE for us common folk. All the other tumors were “stable” or slightly reduced. I’ll have the printed copies in a couple of days so I can compare it all.
The blood work was all within limits so I received the maintenance treatment. I’m now on a six week scan / twelve week treatment schedule. As long as the scans and blood work are good I advance to the next six week interval.
About a month ago a blood test revealed that my testosterone level was very low. So in addition to the thyroid treatment I’m now on testosterone therapy. It seems like my energy is increasing daily. I’m riding my bike on a regular basis building up my endurance and strength. As long as the weather doesn’t get too cold or wet I’ll be riding. During the bad weather I’ll be using the equipment at Planet Fitness. My goal is to qualify to ride at least one day of the Pan Mass Challenge next summer.
Today I passed my bike helmet around to my medical team. I’ve asked them all to sign the helmet so I can remember them all as I ride. The main message on the helmet is “It’s about Kickin’ Melanomas Butt”.” The helmet is starting to look neat with all the messages. Sometime soon I’ll post a picture
Today a woman I know called me her hero. I thanked her and as she continued on she explained that because I was in a medical trial she felt it was easier for her to consider a trial for her own battle with an advanced cancer. We chatted for awhile about treatments and hospitals and are forever bonded by the shared experiences.
I’ve known this kind lady for many years, but until recently not for much more than a hello and how are you and the family, but now we had something real and threatening in common. It’s easy to stop by and chat for a moment and add a couple of encouraging words and understand a bit of what each of us is experiencing. Read More »
What is it about this seasonal delicacy that drives people crazy, almost a lust, have to have it, hunt different farm stands for the best ears. After all this innocent looking veggie has been around since the before the pilgrims landed in nearby Plymouth.
In our little corner of the world real corn season starts around the tail end of July and is usually over by mid September. This year seems a bit of an oddity or maybe we’ve just spread our wings a bit in our search for late season delights. Let me set the record straight before I go any further. Real corn can rarely be bought at supermarkets. So rare, that we’ve only encountered decent “store bought” corn one time in the last ten or so years.
The butter and sugar (yellow & white) variety is by far the local favorite and in my opinion only grows well in the soils north of the beaches of RI and south of the White Mountains. We’ve been fooled in southern Rhode Island with some very flat tasting fresh off the stalk corn. It must be the soil in the area. Locals liked it though.
It’s maintained that corn should be picked and cooked immediately as the sugars start converting immediately after picking. I think that is overstating the case, but not by much. Fresh corn is not 3 days old on the shelf. Today’s corn should mean picked this morning, sold today. Read More »
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