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.

Click here for Maureen’s Relay Donation Page

Click here for Jerry’s Relay Donation Page

Check back to our pages for updates

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.

Charlie needed a truck so he purchased my Dodge and plows.  I started hunting around for a replacement to the old clown car (1986 Toyota Tercel 4wd wagon, 212k).  The clown car had served me well for the past year.  I bought it a few years ago for Aunt Mary and she wasn’t driving any longer so back to me it came and just in time.  I needed a small car to navigate the underground parking lots at the hospital.  The bonus was that it got great mileage and required NO maintenance.

As soon as I started getting serious about a 2000 Volvo wagon my trusty clown car bit the dust. A front axle U-Joint failed.  Luckily I was not on a highway or far from home.  I hated to see that little car towed off a couple of days later.  It’s on it’s way to become a good refrigerator for some lucky person. *G*

The Volvo is a great car, picked partially because of the AWD, driveabliltiy, low mileage (109k) for a 2000, and  large enough cargo area for most of our camping gear with some added to the roof racks..  NOTE…. Even though I bought the car for the right price after doing a ton of research it’s not a car for the faint of heart in dealing with maintenance.  In that regard it hasn’t let me down.  The good news is that I’ve done the majority of service myself.  I’m so happy that I’m able to work on the car.  I’ve even started to clean up work area’s in the garage and straighten out tool boxes.

I look forward to at least adding 100k miles to the Volvo before I move to something else.

On the 25th I had lunch with Herb & Bibe Schnitzer when I was in Concord visiting the Melanoma Foundation of New England mfne.org (more on that later).  The Schnitzer’s are doing great in their condo on the brook.  Herb served 15 years on the Yarmouth Board of Selectmen and Bibe was the ultimate volunteer.  I hope to get back to visit with them on a regular basis.  I just have to get a bit stronger so I can arm wrestle the check away from Bibe “When you come to my house, I pay” Schnitzer.

Had a great meeting with the folks at mfne.  I’ve made the mfne my melanoma charity of choice.  They are patient/caregiver oriented and center the majority of their efforts those support areas.  Like many smaller foundations they run lean and mean with only three very dedicated staff and a whole range of volunteers.

We discussed some fund raising ideas and I offered to work with them on a major redesign of their website.  I’m pleased to announce that after a long “fact finding” period they have agreed to take my offer of assistance.  We will start the process a bit later in May when my schedule allows a bit more time.

March 2010

FIRST REAL BIKE RIDE OF 2010.. SPRING IS COMING!!!!

March and April are kind of a blur with the preparations for the May town meeting and the RACCA Spring Conference starting a day later. I took out my papers for reelection to my 7th term as a Selectman.  I’m finishing my 18th year in May. (technically 18 years 1 month due to a change in the day of election.)

Trial Week 60 March 30th… I HATE MARCH…

The scans were fine, but one of my blood tests revealed a potential problem with my pancreas.  No treatment.  What a downer… It was a long ride home.

Repeat blood tests showed another elevation.  Specialists reviewed my CT scans and suggested a wait and see. So I’m on hold for 12 weeks.  It’s an eternity.  I have confidence in the treatment that it is still active, but the concern about the pancreas is overwhelming.  Blood tests in April showed an improvement which is promising, but I have to wait a few more weeks for the next round.

April 2010

A big decision.  I decided that it was time for me to step down from the Board of Selectmen.  18 years is enough.  I’ve already started a few little volunteer projects to fill some of the time.

A great start to bicycling season.  The bike is smooth with updated gears and a fresh tuneup. Also purchased a few new accessories.

My strength seems to have improved drastically the last few months and it shows in the bike rides.  This past Saturday I completed a 28 mile trip on the bike path.  I did the first 12.5 without a stop and at a new (for me) high average speed.  Stopped for a quick burger at Wendy’s at the Orleans Rotary and enjoyed a nice ride back to the start in Dennis.

I won’t ride much for the next couple of weeks.  Town Meeting is next Monday and Tuesday followed by a trip to Scottsdale for the spring conference.  I get back on Saturday the 8th and go to Beth Israel for scans on the 9th.  Blood tests on the 11th with scan results.

I get a bit of down time with just followup from the conference and no major deadlines.

That’s all for this edition.

~jerry

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.

By the way, I’m not obsessive, I’m DRIVEN!

~Jerry

————————————————————————————-

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.

This will truly be a Happy Thanksgiving!

Happy rashes,

~jerry

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.

Here are a couple of photos of the helmet

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….

~jerry

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

~jerry

“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.

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.

I am truly happy that my participation in this trial made her decision a bit easier, but I don’t feel like a hero.  I’m just an average Joe trying to stay alive for all the time I’m destined to have.  As many of you know this is my second trial.  The first started ten years ago when my local oncologist referred me to Beth Israel and the trial arm under the direction of Dr. Atkins.  (See the pages on the sidebar for full details)

Shortly after I was accepted into the trial my local oncologist, Dr. Chingos, thanked me for participating.  I must have looked a bit taken aback and admit I was a bit naive about medical trials.  He explained that even though I was now in a control (unmedicated) arm of the trial that my participation was important to the outcome and for future patients.  Since that moment I’ve viewed that as one of my “pay it forwards.”

It’s also kind of ironic that for the first 9 years I never really felt like a survivor.  What did I survive?  Yes I had melanoma, but I was a stage I  I’d been NED (no evidence of disease) for 9 years so I felt strange trying to claim the status of “survivor” when those I knew as survivors had been through “the mill” I was certainly not equal to them.

So who are my heroes?

First and foremost my wife Maureen.  I can’t begin to explain the strength that she gives me every day.  She is there for me every day.  She doesn’t pamper me nor does she put up with any of my BS. She’s the only person I know who will stand toe to toe with me and make me quiver, all 5’2″ of her.

My father and my mother. I don’t know if there is enough space even in the digital universe for me to write all that would be needed to describe my feelings and their importance to me.  I’m not going to spend the time to repeat the truely personal feelings and emotions in this post.

I’m going to leave out the relatives and the host of teachers and other adults that had a strong influence on the person I became.  It’s strange that we don’t really appreciate their guidance  until much later, so if you get a chance before it’s too late tell them!

Every person who ever participated in a medical trial for death threatening conditions. (period) Every single one.  They made medicine what it is today and laid the groundwork for what it will be in the future.  I and many others benefit daily from their participation and sacrifices.  For those of you who have never the possibility of a trial here’s what those folks faced.  First they were most likely really sick, many facing real bad prognosis.  Then if it’s a double blind trial they face a 50% chance of not getting the real meds or maybe they will be placed in the least effective branch of trial.

Shortly after I was diagnosed and was about to enter the trial one of Maureen’s co-workers confided that her late husband had been stage IV  and was an early participant in a melanoma trial.   He and others like him are my heroes.

I chat daily with group of melanoma patients, some  in trials for many different treatments of melanoma, others have sucessfully ended treatments and are their to support the rest of us.  They are  folks just like you and me who have been dealt a really rotten hand and what a great group of people they are.  Some have been fortunate to have been stage IV and now NED for many years.

We seem to have new folks join us daily as they check resources on the web. I swear it almost seems like a group embrace occurs across the world in phases as folks check the forums.  Now please understand me when I say this, they are all individuals with all the failings and promises held by individuals.  I don’t think anyone qualifies as a saint.  Some are very religious and some are aethiest, most don’t say.  Some days they are cranky and irritable and other days they are not.  Some days they can be sarcastic and close to mean, but you begin to understand them and I promise you that even the crankiest of the cranky will go through hell and high water to help someone else in need.

My “A-Team” All the doctors, nurses, nurse practitioners, technicians and support folks who have dedicated their lives to the fight against cancer.  I’m not going to even try to list them by name.

Every young person who has ever donned a uniform in service to our country! no need to expand on this one.

~Jerry

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.

This fetish for good corn at the end of the season is all consuming.  Today Maureen and I visited one of our local farm stands.  While it’s not a working farm anymore and it sells more plants than veggies they generally have good corn.  They truck their corn in fresh every morning from mainland farms.  They won’t say where they go, but relatives have seen there trucks at farms northwest of Boston.  Well it’s been a bit disappointing this year.  The corn has been SKINNY and short.  Not full taste either and our visit today almost convinced us that corn season was closed for us.  After checking the meager offerings we walked away dejected and just craving one more meal.

Well, it was mid afternoon and the sky was overcast so going to the beach for coffee / tea / chat was not in the cards.  I suggested we visit a real farm about 20 miles away.  Maureen agreed so off we went on what could have been a fool’s errand.  (don’t forget who was driving)

As we reached the halfway point the clouds parted and the afternoon sun poured down on the marshes around us.  We remarked at the beginning color changes in the marshes and meadows leading up to the dunes of Sandy Neck Beach.  Soon enough we will be huddled at home around the wood stove on afternoons.  What a beautiful day for a drive.

We arrived at the crowded farm to find a decent supply of fat and full corn.  It didn’t take long to pick our two day supply from the table and join the line at the cashier.  We heard that they still have a “good” supply in the fields.  Now it’s just a question of which will happen first, the first killing frost or the last ear to pick.   I wonder who gets the honor of the last ear?

The sun followed us almost all the way home as we meandered along the tree lined roads.  The leaves are drying and soon will be showing their true colors.  Fact: green leaves are not the natural color of tree leaves.  The green is the color of the chemical reaction of the clorofil.  It was truely a bonus day for us and we had two meals of corn ahead.

Now good corn on the cob can be served with almost any main dish.  Before you get to fancy in your meal planning remember this one caution; good butter & sugar corn will make anything on the plate look second rate so don’t get too fancy.  Tonight it was just cheeseburgers and the corn on the cob made the whole meal heavenly. I was going to use the term “Cheeseburgers in Paradise” but didn’t want to horn in on what’s his name.  Besides, it was Corn in Paradise.

Picture this; a plate full of fresh, steaming corn on the cob, gleaming yellow and white in color, just waiting for the addition of an amble amount of butter (margarine) and a shake or two of salt.  So hot you can’t hold it in your hands so you poke a couple of those prongy things in each end.  As you bring the corn to your lips the butter drips on your chin and that’s just the beginning of the fun.  The first bite is heavenly, followed by ooohhhs and awwws from the celebrants. Good corn has a firm but yielding skin but a very smooth and sweet pulp. Tonights corn was as good as it gets and we’eve got a bit more to look forward to.

The heck with the carbon footprint of a 4o mile round trip it’s October and there is still good corn.

Ain’t it great to be alive!

~Jerry