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.
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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.
By the way, I’m not obsessive, I’m DRIVEN!
~Jerry
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.
This will truly be a Happy Thanksgiving!
Happy rashes,
~jerry
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.
Here are a couple of photos of the helmet
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
~jerry
Last year at this time I promised one of my doctors that I would be in shape to ride in the Pan Mass Challenge. Well the melanoma thingy got in the way.
I was telling Virginia my nurse practitioner at BIDMC about my promise to Dr. Jeff Spillane, a long time PMC participant when she told me in her very quite way that she was also a rider. I nearly fell on the floor. If you ever met her you would swear that she couldn’t pedal a bike a block, never mind half way across the Commonwealth of Massachusetts. Well, Virginia has done it 13 times, only taking time off when she was expecting her children.
To date, the PMC has raised more than $239 million that has been used to improve the lives of those suffering with cancer. It is the largest single contributor to the Jimmy Fund, bringing in nearly 50 percent of its annual revenue.
My goal is to spend the next year getting healthier and then getting in shape to ride and to raise the money needed to become a rider.
Now that will really kick Melanoma in the Butt won’t it
Jerry
Alone…. As the time between infusions and checks has increased I sometimes feel that we should be doing more. It’s like my security blanket has been taken away. It is comforting knowing that I can contact my team easily by email and get a response and support quickly, but it’s a bit like a withdrawal from my lifeline. I know better, I’ve read and re-read, researched earlier results and I know this is the course of treatment. I’m sure this will get better as time goes on.
Lucky… The ipi appears to be working for now, I’m recovering my strength. I have not shown any symptoms of any of the mets. I’ve got a fantastic family and a great group of friends who are praying and pulling for me.
Hopeful… That the results of all the trials convince the FDA, Medarex, and BMS to get ipi available as a regular treatment option… Quickly. It appears to be an option for many.
Thankful… That there are so many dedicated Doctors, Researchers working together to fight the beast. Most of all to all of you warriors out there and the angels who have gone before us. Your contribution to beating the beast is immeasurable.
Lest I forget, I’m most thankful for the medical team a BIDMC. WOW!, I feel like I have my own “A TEAM.” It’s a great, caring staff. Bless you all.
Jerry
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