Philly LiveStrong Challenge coming up…

John giving Nathaniel a kiss after completing the 2008 Philly LiveStrong

John giving Nathaniel a kiss after completing the 2008 Philly LiveStrong Challenge.

ThePhilly LiveStrong Challenge is coming up on Sunday.  John was a strong supporter of the Lance Armstrong Foundation.  He admired Lance as a cyclist & admired his dedication to fighting cancer.  John & I once had a conversation where he said that if anybody had was strong enough to win the Tour de France seven times, beat cancer, he was the person who had the strength and courage to fight cancer & hopefully beat the disease!  John & I both read Lance Armstrong’s books, It’s Not About the Bike:  My Journey Back to Life & Every Second Counts, and we both loved the books and Lance’s determination & fighting spirit.  John had said several times that Lance should have died… he shouldn’t have beat his cancer.  I can’t speak for John, but I know in my mind that was one of the reasons that I kept fighting… with cancer there are so many stories of people who should have died, but survived.  Why did they make it?  Who knows, but one thing is for certain.  They never gave up!
I’m going to let John do the “writing” here for a little bit.  One of the things that I’ll cherish is what John so eloquently left in his own words.  His personality, intelligence, and character shine through in his writing.  So… here is what he wrote on our website reguarding the challenge & forming Team Smitty for this year.  This was written on December 2, 2008 which is after John’s stage III diagnosis, but before the onset of stage IV.
A look back on my LIVESTRONG Challenge
Posted on Tuesday, December 02 @ 21:09:15 EST   [ Edit | Delete ]
Topic: John P Smith II

First of all, I want to apologize for taking so long to write this final summary of my LIVESTRONG Challenge experience, which took place August 24th near Philadelphia. As you may remember, the LIVESTRONG Challenge is the Lance Armstrong Foundation’s signature fundraising event inspired by the hope, courage and perseverance of Lance and the nearly 12 million Americans affected by cancer. Each year thousands of people take the Challenge, uniting individuals to stand together to fight cancer. This was my first year participating, and I chose to ride the 100 mile option. It was both a personal challenge and a way to honor those affected by cancer.

I learned of the LIVESTRONG Challenge last year, in the aftermath of my surgery to remove the malignant melanoma from my chest and as I was becoming very interested in cycling. It seemed like the perfect opportunity to take my new found love and use it, not only as a way to show cancer that it cannot defeat me, but to honor the memory of my parents- both of whom I lost to cancer, and to do something to help eliminate this terrible disease from the face of the Earth.

So I registered in January 2008 and sent out my first round of emails to friends, family, and coworkers. The response was tremendous and by the end of the month I was well on my way to my fundraising goal. As the year went by, I continued to send out updates of my progress as I worked on building up my cycling endurance, and the donations kept coming.

It was my goal not just to finish the Challenge, but to do so strongly and in a reasonable time. My first ride of the season was on March 23rd and I did my best to ride as often as possible. I rode into work each shift along the B&A Trail, from Glen Burnie to Annapolis which would take about an hour and each week I tried to get in a longer ride that I had the week before.

I was doing pretty good until July when cycling took a back seat as the birth of our son Nathaniel approached. As Mary got closer to her due date, I quit riding the bike into work in case I needed to make a fast getaway. Prior to the day of the Challenge the only ride I had on my bike in two months was 80 miles on August 9th as I participated in the Kent County Lions Club’s “Ride to See” which took me from Galena to Rock Hall and back.

The lack of riding made would make it a tough ride, but I was determined not to quit and vowed that no matter what, I was going to do what I had promised everyone. Looking back, I think it made the whole experience that much more rewarding for me. I battled cramps for the last half of the ride and there were many times when I thought I wouldn’t be able to continue. I stopped frequently to catch my breath & stretch. I cried. I cursed myself. I pedaled on…

You can see the data captured by my Garmin cycling computer at the following link: http://trail.motionbased.com/trail/invitation/email/accept.mb?senderPk.pkValue=145659&unitSystemPkValue=2&episodePk.pkValue=6613791

The support for the race was tremendous. There were police officers at all the intersections and the rest stops were well staffed. Many of the residents were out and cheering, and one gentleman was offering free repairs. It just so happened that the first time I had to stop because of the cramps was just down from his house. Before I knew it, he was there asking if everything was okay. It meant a lot. Like the day before, when we went to pick up my registration packet, and I stepped up to the volunteer who asked for my name to check me in. I told her, she looked down on her sheet, found my name, scanned across, and let out a warhoop of “Twenty-Eight Hundred Dollars!!” which was followed by the cheers of all of the other volunteers there. I had to smile.

That’s right. I reached, and exceeded, my fundraising goal of $2,500. The response from my friends and family was remarkable. Many people chose to give a lot more than I thought they would. To those of you who donated, I thank you very much for understanding how important this cause & event are to me and greatly appreciate your contribution. Donors can expect a gift package in the near future as a token of my appreciation. To those who were unable to donate, your words of encouragement and well wishes served as motivation to get me out on the bike and helped strengthen my desire to do the absolute best I could in completing the Challenge.

You can see who donated and check my final total at last year’s fundraising page: http://philly08.livestrong.org/johnpsmith2 %5BMKS comment – link no longer active]

With all of the stops, the ride took me over eight hours. Not exactly what I was shooting for… I finished just before the cutoff time, which served as my sole motivation in the last 18 miles. I pushed myself unbelievably hard to make sure that I finished under my own power and wasn’t picked up by the “broom wagon.” As I passed people I shouted words of encouragement to them. I stopped only briefly, just before coming onto the campus of the Montgomery County Community College, which hosted the event, so I could call Mary and let her know that I was almost to the finish line so she could be sure and see me.

Mary had her own adventure that day and we asked an awful lot from Nathaniel, who was just over a month old at the time, but seemed to tolerate the long, warm day well up until the ride home. It was a long day for us all, but well worth the effort– Not just our effort, but the efforts of all those involved.

Participation at the Philly Challenge was astounding as nearly 5,000 participants and more than 700 volunteers came out and raised just shy of $3 million. Because of the fundraising efforts of all participants in each of the four Challenge locations of Portland, San Jose, Philadelphia, and Austin, the 2008 LIVESTRONG Challenge Series saw 17,772 participants contribute over $9.7 million to the fight against cancer!

The net proceeds raised by LIVESTRONG Challenge participants directly benefit the Lance Armstrong Foundation and serve to support their mission to help inspire & empower cancer survivors to live life on their own terms, and help contribute toward cancer prevention, research and access to screening and care, hopefully making life better for the more than 12 million Americans currently stricken with cancer.

If you’d like more information on the Challenge or the Lance Armstrong Foundation you can visit their websites at http://www.livestrongchallenge.org/ and http://www.livestrong.org/.

Registration for next year’s event opened today, and I just finished signing up.

This year I won’t be asking anyone for donations, I think it’s too much to ask with the state of the economy. I have toyed with the idea of getting a bike store to donate a bicycle to raffle off though, so we’ll see how that turns out. This year it is more about a personal goal. I need something to focus on and take my mind off what I have learned since August.

It seems that cancer can’t get enough of me.

In September, less than a month after the Challenge I went to my oncologist for a routine follow-up just like I had done every three months since the surgery. If everything was clear, I would get to come every four months. It wasn’t. As he always does, Dr. Elias checked my groin, armpits, and neck to feel for swelling in my lymph nodes. This time he thought he felt a lump under my right arm. He wanted me to come back in two weeks, so he could check again.

I was worried, but not overly worried because when I reached under my arm I couldn’t feel anything. I kept feeling under my arm as the days went by. The weekend before we were due back to the doctor’s office Mary & I were watching an episode of “House.” The fictional doctor was diagnosing a patient in Antarctica via webcam. He was guiding her through a procedure when she felt a lump under her skin. Mary wondered if I could feel anything… I scoffed and said “No!” knowing I had just felt under my arm a couple days before. I reached under my arm again, but this time I could feel something. And not only could I feel it, but when I raised my arms over my head, I could see it, the size of a walnut.

We returned to the doctor on October 8th. It was a short visit. He told me that he was sure that it was my melanoma that had spread. They asked me when I wanted to schedule the lymphadenectomy. I answered ‘the sooner the better.’ They booked me for the morning of the 13th and sent me to the hospital’s lab for blood work, then up the road for a PET/CT scan. It was a long day. Nathaniel is a remarkable baby. He was sooo good…

The surgery went well. The doctor said that the PET/CT scan was clear except for the one area, and that it looked like it was just one lymph node that was affected. I wondered why it spread when my original Sentinel Lymph Node biopsies were clear. He explained that the test sometimes fail to show anything even though it was there. They’re working on a better test, using Stem Cells. They added my case to the list of ones to retest. With any luck, my misfortune will help someone in the future.

I went back to him on the 22nd and everything was healing well. I’ve continued to heal well and will return to work on December 8th. It will be good to get back. The plus side is that I’ve gotten to spend some wonderful time with my son.

Hopefully this will be the end of it… Melanoma is the deadliest skin cancer. If it is caught early, before it gets too big, then removing it typically solves the problem. If it goes too long, gets too big and spreads then survival rates go down dramatically- 25-60% (5yr) for Stage III, which is what I am now. There are no approved treatments beyond surgery. Chemo/Radiation are not effective…

They offered me the biotherapy Clinical Trial again. The last time I decided not to do it. The trial lasts two years. For the first year I would have to give myself daily injections of medication that is meant to boost my immune system. Three times a month I would have to get blood drawn so they can track the results. Each month I would have to go to the doctor’s office to get injected with a vaccine that was made from my own tumor. The idea is to teach my immune system to fight and kill the cancer cells. It sounds good in theory. I dread having to do it. The side effects are supposed to be minimal, tolerable, and a whole bunch of other things. I feel great right now. Even the mildest side effect, the feeling of being “run down,” would make me feel worse than I do right now, and I despise having to feel “sick.”

I worry how it will affect my desire to do the things I want to do, if it’ll make me feel like not riding my bike, if it will adversely affect my ability to do my job. I don’t want to ask my co-workers to pick up my slack. I don’t want them to have to cover for me. I don’t exactly have the type of job where I can just “take a break” if I feel like I need one, as the clinical trial nurse suggests, and I don’t want that type of job either. In short, I don’t want cancer directly or indirectly through the treatment of it, to run my life and it tears my insides out to think that it is going to.

Nor do I want cancer to make Nathaniel grow up without a Dad, and that fear trumps all the others. So I’m going to do the trial anyway because it’s the best option I’ve got. I’m going to stop frequently and catch my breath. I’m going to cry. I’m going to curse myself. And I’m going to pedal on…

Thanks again for your generosity this past year and understanding how important this cause and event are to me. Together we made a difference! I’ll be sure to keep in touch and let you know how things go in 2009.

And again, in John’s words, from his 2009 Philly LiveStrong page

Unite with me in the cancer fight and support my fundraising efforts
I learned of the LIVESTRONG Challenge during the latter part of 2007, in the aftermath of my surgery to remove a malignant melanoma from my chest and as I was becoming very interested in cycling. It seemed like the perfect opportunity to take my new found love and use it, not only as a way to show cancer that it cannot defeat me, but to honor the memory of my parents- both of whom I lost to cancer, and to do something to help eliminate this terrible disease from the face of the Earth.Although I was too late for that year’s Challenge, I registered in January for the 2008 edition and sent out my first round of emails to friends, family, and coworkers.The response from my friends and family was remarkable and I exceeded my fundraising goal of $2500. Not bad for a first timer, if I do say so myself.

The birth of my son made cycling take a back seat for a while and I wasn’t as prepared for the Challenge as I would have liked.

The lack of riding made it a tough ride, but I was determined not to quit and vowed that no matter what, I was going to do what I had promised everyone. Looking back, I think it made the whole experience that much more rewarding for me. I battled cramps for the last half of the ride and there were many times when I thought I wouldn’t be able to continue. I stopped frequently to catch my breath & stretch. I cried. I cursed myself. I pedaled on…

Little did I know, that I was doing it while cancer was again growing in my body.

In September, less than a month after the Challenge I went to my oncologist for a routine follow-up just like I had done every three months since the surgery. If everything was clear, I would get to come every four months. It wasn’t.

My melanoma had spread and I had a lymphadenectomy in October.

Since then my cancer has progressed despite treatment with a clinical trial. I now have tumors in my lung, liver, kidney, and bones in addition to lymph nodes in my neck & groin. My doctor has put me off work and told me not to exert my legs. The tumor in my pelvis will probably make sitting on a bike impossible.

I underwent surgery at the National Cancer Institute but they found additional tumors which precluded their recommended treatment and am now undergoing high-dose IL-2 treatments at Johns Hopkins.

My hope to be healed & better in time for the Challenge in August. I doubt I will be able to ride the 100 miles I’ve signed up for, but hope that some of my friends will ride or walk for me. Check out TEAM SMITTY to see who has committed to helping me out!

 

So… a few days before the challenge, TEAM SMITTY is up to 24 members & has raised at least $6566 (I don’t believe the money from the Stan & Joe’s fundraiser has been added yet.)  All I can say is JOHN WOULD BE SO PROUD!

I’m just a little shy of my $500 fundraising goal, but hopefully I can get there.

Well, that’s it for now… Nathaniel wants up, the horses need to eat…

(hopefully, I can add some more links in later, but I need to get kiddo up) *edited to add links 13:40 AM 8-21*

Advertisements

About Mary K. Smith

I was widowed in July 2009, when I lost my beloved husband, John, to melanoma. Cancer SUCKS. We have a young son who was just a year old when his father died. I live on a small farm in Maryland which is home to horses, cats, and a dog. I started this blog as a way for me to heal, a way to remember my husband, and eventually I'd like to share it with our son so he can see the love that his father had for him, the love that we had for each other, what a great person his father was, and how hard his father fought to live.
This entry was posted in Cycling, Events in honor of John, LiveStrong Challenge, Nathaniel, Pre-stage IV and tagged , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s