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Half-life

23 Mar

I am often telling Michele that “today is another one of MY DAYS“. An anniversary that only I remember – the days I found a lump, the days I was diagnosed, the days of my surgeries, the days that I found out that the cancer that had invaded me was gone, the days that the treatments ended.

Today is another one of those days.

First and foremost, it is my birthday, so it is a day that I share with my mom and dad, my family, and my friends. But this one, I have been thinking about for a while.

I was diagnosed with Type 2A Hodgkins Lymphoma when I was 22 years old. I have now celebrated 22 birthdays since that DAY. So half of the birthdays of my life.  One of the images that I comes to mind is of a young girl, maybe 8 or 9, who I would sit in the radiation oncology waiting room with way back in 1996. I don’t remember speaking with her. I remember her and her mom vividly. But I’ve been thinking that her half-life day would would been as a teenager. I hope that she made it to see that birthday and many more.

 

Also on our mind these days is a dear family friend and her kids. All signs so far are good that she will see many more birthdays – her own, and those of her girls.

And sadly on my mind as well today are two families that have recently lost a dear family member from this disease after long, challenging battles. May the remainder of their days be filled with good memories of their loved ones, rather than the harsh realities of their lives with cancer.

I will undoubtedly be serenaded with “Happy Birthday” a number of times today. I am thankful to be around to hear those lyrics.  Twice in my life, my birthday was shrouded by the specter of cancer.  Then, thanks to all the research, clinical trials, and bravery of the cancer patients who came before me, I received life-saving treatment. I will never forget those birthdays as the uncertainty and fear that filled those days have motivated me to this day.

Today, I encourage you to think about the people in your life – do you know someone who is going through cancer treatment?  Do you know a survivor? Do you know the pain and struggle of a cancer diagnosis and treatment firsthand?

There are many rides, runs, walks, and charity events raising money to fight cancer as well as innumerable other diseases. The Pan-Mass Challenge, which I will again ride in August, is raising money so that cancer will be cured. 100% of your donation will go directly to Dana-Farber Cancer Institute’s unrestricted funding. In this day and age where research funding is under attack, these funds are crucial. You can learn more about how the Dana-Farber uses these funds here.  I hope that in honor of my birthday and in honor and memory of those that you know that have battled cancer, you will make a donation today. It will save lives. It will move us one day closer to the end of cancer.

Thank you!

Donate here: http://www2.pmc.org/profile/AS0171

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Thoughts on World Cancer Day

4 Feb

It has been a while since I shared in this space. Our world has become very agitated, on all levels and much of my daily bandwidth has been internally focused on family, friends, and our country. This week, my attention has been re-centered on my own personal activism, ending cancer in my lifetime.  Then I wake up this morning, reminded of this cause, by World Cancer Day.

But first, a call-to-action. Or maybe better said, a call-to-activism.

What I strongly believe is that the world is a better place when we are inspired by a cause to make it better. We may differ in what the cause is… doesn’t matter.  What if each of us could have the passion and commitment to rally for a group of people in need or the betterment of our civilization, and if we could attempt to leave our planet in a better place when we leave than when we were born, and if we could take the baton from the generation before and give it to the next knowing that we made a difference, then we could really get some amazing things accomplished. Being an advocate and an activist is more than just writing a check. That is called being a donor or supporter – which are still important roles. But without the activist, there are no donors. Without the activist, there are no causes. Without the activist, our culture and society will not move forward.  I ask you, what is your cause?  Find one. Develop your voice. Inspire me to support you. Become an activist!

And now back to my cause….

This week, I crossed paths with our cancer enemy in many ways.

  • Sunday: We delivered a meal to a family that is battling breast cancer. It gave us a chance to check in and see what else we can do to help. And to listen.
  • Monday and Tuesday: I kicked my PMC training for 2017 into high gear with some long training sessions. As I spin, I think about all those I have been riding for and about my fellow Living Proof riders.
  • Thursday: We learned that a family friend passed away after a long battle. Devastating news for all of us.
  • Friday: I got two bits of good news – a dear friend celebrated her sixth cancer-versary (aka 6th year from her diagnosis) and a Forza-G teammate learned that she has now 36 months cancer free.

And now today, it is World Cancer Day. Maybe you knew that. You probably didn’t.  I have spent the last hour or so looking up the latest stats and research. The news on the cancer front is mixed.
Here are a few stats that I’ll bring to your attention:

  • wcd2016_cancer_incidence_mortalityThe number of people living beyond a cancer diagnosis reached nearly 14.5 million in 2014 and is expected to rise to almost 19 million by 2024. In the U.S., cancer death rates have been dropping since the early 1990s. (Analysis: Research is creating treatments that are saving lives!)
  • Approximately 40% percent of men and women will be diagnosed with cancer at some point during their lifetimes. (Analysis: That is 2 out of every 5 people. Yikes!)
  • More than 60 percent of the world’s new cancer cases occur in Africa, Asia, and Central and South America; 70 percent of the world’s cancer deaths also occur in these regions. (Analysis: Our advances here in the U.S. have not yet been shared with the developing world. No surprise here.)

So more people are surviving and the death rate is dropping here in the USA. But not everyone is surviving. For many a cancer diagnosis is a death sentence. Sometimes within weeks or months. Sometimes it may take years. Either way, I believe that the diseases that we know as cancer as curable and that we can be part of the generation that made cancer a disease of the past, like small pox and polio for the generations that came before us. So on this World Cancer Day, give a hug to a survivor,  you probably know many, do something nice for someone in the midst of treatments, and consider supporting or donating to the research that will make the curing of cancer possible.

As I prepare for my 11th Pan-Mass Challenge, I think about our family friend who is going through cancer treatments, a teammate who recently had surgery to remove her latest cancer threat, and another teammate who lost a sibling to this disease. I won’t stop until the mission is accomplished – to end cancer. This is not a moonshot – ending cancer is a game-changer for all the generations to come. #itstimetoendcancer

All donations are welcome.

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Another Anniversary – this time #20

24 Jul

Today is the 20th anniversary of my first last round of cancer treatment. For those reading who are confused by that last sentence, on July 24, 1996, I received my final radiation treatment as part of my treatment against Hodgkin’s Lymphoma. I was cancer free until the Spring on 2011, when I found a lump and started chemo. So today is the anniversary of the first time I had my last cancer treatment.

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Yesterday, in 90+ degree heat, teammate Mark (at right) and our friend Bill (center) took a break on our 50 mile ride in Annapolis.

Yesterday, I got out for my first 50-mile ride since the spring, due to all the ailments I mentioned in recent posts. Today, Mark and I backed it up with another 55 miles. We got toughened up by some mechanical issues. My 10th PMC is merely two weeks away, I haven’t always loved my time on the bike. Only in the last few years, since my recurrence, have I truly fallen in love with cycling, finding the time on my bike to be a glorious place to think about my situation, my life, the world around us, and to think about the far to many people that I know who are battling cancer or have recently succumbed. I keep looking for more motivation to help inspire me in my fundraising efforts. What I realized today, especially after coming back after today’s ride to learn of the passing of a teammate’s friend, is that I can’t be more motivated or passionate. I, like so many, live and breathe the cause of defeating cancer as quickly as possible. Every day that passes, more lives are lost or changed.

All of this reminds me of what lays ahead of me in two weekends. I will ride my bike 200 miles across Massachusetts and complete my 10th Pan-Mass Challenge.

I ride the PMC for many reasons. I recently blogged about many of them here. I ride for my fellow survivors and our loved ones who have been taken from us to soon. I ride to inspire a belief that cancer can be overcome because of ground-breaking research and to help raise the funds to make that dream a reality.

I ride the PMC for birthdays and anniversaries. I think about all of the birthdays that I have had that without that radiation treatment back in 1996 that I would have missed. And, as every cancer survivor knows, there are lot of anniversaries – the day you were diagnosed, the day you started treatment, the day you finished. And hopefully, the day you found out you were cancer-free.

I write a lot on my birthdays and these anniversaries. I am reminded every day that I am a cancer survivor, but on these days, for some reason it takes on a different meaning. I have not been shy about  celebrating my 20th year of beating cancer the first time, my 10th Pan Mass Challenge ride, and my 5th year cancer-free since round 2 in 2011. I am proud to be Living Proof that all the research that this ride and many other worthy events has funded and I share all of these things with the world with the hope that the momentum we have in defeating this disease will continue until the job is done.

Since I started this post, odds are, someone was told that they had cancer. I know that they are probably very afraid and scared of what is to come. We all have the opportunity to create cures for cancers. I got one. Then I got another one. Not everyone does. Please give the gift of life today by contributing and sponsoring research and treatment at the ground-breaking Dana-Farber Cancer Institute! Click here to donate.

Thank you for making a difference.

 

Sharing My Thoughts From National Cancer Survivors Day

8 Jun

Last Sunday was National Cancer Survivor Day. Every year, this day has become a day of reflection on what cancer has given me. Here is a list of all the special things and people that swirled in my mind this year. They are in no particular order.

  • 20 years of living with cancer
  • 2 specific days of devastation
  • many many days of uncertainty
  • at least 4 biopsies
  • 1 major surgery
  • 1 less organ (spleen)
  • 2 days of morphine induced haze after that sugery
  • 1 permanently damaged thyroid gland
  • 2 bone marrow biopsies that I would not wish upon anyone
  • 46 radiation treatments
  • 12 chemo treatments
  • over 40 CT scans
  • at least 8 PET scans
  • all the nurses and technicians and doctors and hospital staffers I have met in Rochester and Baltimore
  • months upon months of painfully slow recovery
  • weeks of wondering if chemo-brain was ever going to end
  • all of the family, friends and friends and family of friends who were taken to soon
  • going to the cancer center on my 43rd birthday for a follow-up visit
  • my favorite Harpooner and fellow survivor, Kathy
  • my mom
  • my aunt
  • both of my grandmothers
  • my grandfather
  • my dad
  • missing the PMC in 2011
  • all of the meals that my cycling team and our friends in Baltimore provided for us in 2011
  • the hundreds of cards that we received that summer
  • falling over on my bike trying to go up the Bellona Avenue hill on one of my first rides in 2012
  • finishing my first PMC in 2007
  • riding my bike on PMC Day at Fenway with 29 other survivors to commemorate the PMC’s 30th ride
  • finishing the PMC in 2013
  • being able to up my Pan-Mass Challenge from 2 days and 200 miles to 3 days and 300 miles the last couple of years with some of my teammates
  • how one of my teammates almost took me out last year on that extra day
  • $66,825.14: total amount that my friends, family, and acquaintances have donated in my name since 2007
  • Betsy, Suzanne, Diane, Carie and all of the Living Proof riders and volunteers that I share a toast with each August
  • the family that is going to have a devastating day tomorrow
  • my three friends this year who have started down their own journey with cancer
  • my family who has been through cancer too many times
  • my team, Forza-G
  • my Decker family
  • how I hope beyond hope that our Shannon will live in a world without cancer.
  • wondering if my lymph nodes will ever decide to be boring again
  • the mental and physical release that cycling has come to provide to me
  • everything that Michele and I have been through in the recent years
  • how truly lucky I am…
  • and fortunate…
  • and grateful
  • and COMMITTED.

20

22 Feb

I don’t remember all the details. I know I was at the office of the ENT (ears,nose, throat) surgeon who had removed an enlarged lymph node from my neck the week before. It was at Highland Hospital in Rochester, NY. It was sort of a grey, drizzly day.

The words from the doctor, that’s what I remember. I don’t even remember the doctor’s name. Just his words….

“The pathology report on the lymph nodes says that you have Hodgkin’s Lymphoma.”

I don’t really remember anything else from that day. I think maybe I called my parents and told my bosses at work. February 22, 1996. I was 22 years old.

It was twenty years ago today, the day my personal cancer journey began.

So much has happened along this journey since then. The surgeries. The radiation. The long recovery. The years of follow-up scans. The family and friends who have also had their journeys. My aunt. My Grandpa. My Grammie. My mom. My colleague at Harpoon. My dad. The self-exams. The unbelievable, irrational feeling of finding a new lump 5 years ago. More surgeries. Chemotherapy. Another long recovery. More scans. More uncertainty. The realization that at any point in time, you can be back on the surgery table to remove another lump and facing more treatments.

Those are the emotional and physical hurdles.  But the journey has also pushed me to advocate and fundraise for better treatments and cures for cancer. I started cycling and doing the Pan Mass Challenge in 1997 – this August’s ride will be my 10th. With the support of my family and friends, we have collectively raised over $65,000 for the world-renowned Dana-Farber Cancer Institute. I’ve been fortunate enough to be a part of a great team devoted to this cause – we’ve raised over $2.25 million in the last 10 years. Being a part of the PMC as a Living Proof rider has been the most important thing I have done in my life, outside of being a husband and father.

And what does this anniversary hold for me today? Another follow-up visit to the oncologist, of course. Another trip to the Cancer Center and more blood work. No scans today, hopefully, unless the blood work suggests that a look is needed. I’ll get an update on what the next treatment would be should the lymphoma return. And I really hope it is the most boring appointment ever.

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Would you donate $20 today to help me celebrate my 20th year of survivorship AND to create a cancer-free world? Cancer-free – it seems far-fetched, but I’ve been following the world of cancer research for 20 years and I know that this is not a pipe dream, moonshot idea – each and every day, we are closer to this goal than ever before. So $20 to support this effort seems like a pretty good deal. To top it off, I will pledge to ride 1 minute on my trainer in March for each and every dollar donated for each dollar donated by the end of February. My dream is that I will have to spin for more than a 1,000 minutes next month – that’s almost 17 hours of training.  I’ve done 1,000 minutes since the start of the year (7 weeks).

Please Donate Here: http://www.pmc.org/as0171

Last Year’s Followup Was Not That Boring

18 Jul

One year ago this week, I was trying from afar to support my dad as he was starting his chemo treatments and to help my mom as she was managing the abrupt changes in her household that cancer was again causing. I was also gearing up for my eighth PMC and my first effort at our team’s Day Zero ride from the New York border to Sturbridge – a mere extra 100 miles piled on top of the main event’s 192. And I was reeling from a followup visit that was not boring enough.

If you have read my blog or are friends with me on Facebook, you will know that my oncologist and I use the term “boring” to describe when I have bloodwork and CT scans that show no evidence of cancer. Last July 14th, I had my regular oncology followup early in the morning. The procedure for these followups were the same back in 1996-2000 as they are today. Get blood drawn. Get CT scan. Wait. Talk to doctor. Boring. Go home or go to work. But this time, it wasn’t boring.

The oncologist actually wasn’t there that day – I spoke with my nurse. She looked at the paper a few times and took a deep breath. It didn’t strike me that something was wrong. I honestly don’t remember what she said, it was something about lymph nodes…. abdomen… enlarged… talk with Doctor…. more tests needed.  I was stunned. That was not BORING!

I haven’t shared this part of my cancer journey with many people. Let me jump ahead to the end before I tell the rest of the tale – at my last CT scan in May, the lymph nodes were no longer enlarged or showing any cancer-like tendencies, and we have gotten back to regular monitoring and followup. I am not being treated like I am having a possible recurrence. Back to just being your everyday, average, two-time cancer survivor. That’s the good news.

But I am sharing this story of the close call and the 10 months of uncertainty and discomfort that it caused in our lives because this is not uncommon. As diagnostic technology advances, more people are learning about ‘possible cancers’ or other potential diseases at a very early time. Sometimes, the body just takes care of these things. Other times, the body needs some help. Twice, I’ve needed that help. This episode last summer, it seems that my body took care of it. Who knows how many times my body has just taken care of it?

The stress caused by learning that you may be having a recurrence or may have cancer can be paralyzing. As I rode the PMC last year, I wondered if I would ever be able to do it again. I tried to learn about what the treatment options for round 3 of Andy vs. Hodgkins Lymphoma were going to be. The answer is that it is really serious stuff with some pretty serious risks. I wondered if the stress of not knowing if I was having a recurrence was going to actually going to cause me to have a recurrence.

Somehow, we pushed on. As summer turned to fall and then winter, I doubled down on my cycling training, hoping to spin my legs so hard that the lymph nodes would shrink. That makes sense right? But really, I had to workout to tire my mind so that I could sleep. I spoke with a few different oncologists about how to get a second opinion. All this while going through more tests, scans, and biopsies to determine if the initial results showing “enlarged mesenteric and pelvic lymph nodes” were truly “compatible with disease recurrence” (that’s what the report said). We couldn’t make a plan until we knew if it was a recurrence or not and that wasn’t going to happen until the nodes shrunk or we could identify biopsied cells as lymphoma.

In August, there was a PET scan. Still enlarged and metabolically looking like possible cancer. Then in September, they did a needle biopsy. Unfortunately, the location of these nodes is inside my abdomen and pelvis – they don’t want to do surgery to remove one or some (as they have done both times in the past) until they have more definitive PET results or a more accessible-via-surgery node. The needle biopsy was inconclusive. So we wait. November was a CT scan that showed more of the same. The tension and stress continued to build. I didn’t broadly share this as we went through it because we didn’t know what was going on.  I didn’t have cancer. But I didn’t not have cancer either. And if we did find out that it was a recurrence, there would be plenty of time to discuss and share. We had a few close friends and family members to discuss this with, but that too was challenging and, at times, exhausting, just sharing the many steps, options, and results as they presented themselves.

After the November scan, my oncologist said that we would check my blood again in February. Nothing extraordinary there. So we waited until May to do more bloodwork and another PET scan. Certainly at this point, 6 months after my last scan, there would be something different, some movement one way or another. And there was – the report from that PET scan reads “near complete resolution of the metabolic activity previously seen external iliac lymph nodes”. And most all of the nodes were back to their normal size and all of them had shrunk in size.  All that to say – my body was taking care of it and that the recurrence was called off.

And all of a sudden, I am expected to go back to the rest of my life. It has taken me a couple of months to be able to have some perspective on this experience and be able to share it. I’ve taken this near recurrence as a reminder about how delicate my health, both physical and mental, truly is. I’ve thrown myself in full bore into cycling – I am nearing my goal of riding more miles before this year’s PMC than I actually rode all of last year (including the PMC and Day Zero). I am taking steps to reduce my general stress level, eat better, and be more fit. I am proud to say that I weigh the same today as I did when I co-captained the 1990 Bangor High School soccer team – at one point, around when we got married in 2002, I weighed fifty pounds more than I do today.

And finally – my unwavering commitment to raise awareness about cancer survivorship and to fundraise for the Pan Mass Challenge and the Dana-Farber Cancer Institute has somehow become more impassioned.  My anticipation for being part of this year’s ride and the Living Proof photo is off the charts. And I am planning something even bigger than a 300-mile, 3 day ride in August for next year, when I will be celebrating being a 20-year cancer survivor, a 10-year PMC rider, and, thankfully, 5-years of being cancer-free. Stay tuned for an announcement after the end of this year’s ride and fundraising.

Thank you for taking the time to read. If you have been kind enough to donate to the PMC already, thank you for your generosity and for helping make cancer history. If you would like to donate and help end cancer in our lifetime, a goal that I know we can achieve, please donate here today100% of your donation to the PMC will be used for live-saving cancer research and treatment at the Dana-Farber Cancer Institute.

 

 

 

 

 

17 Days Until the 2015 PMC… Why Will I Be Riding 300 Miles in 3 days?

14 Jul

Why I Ride

This year is my 9th year riding the Pan-Mass Challenge! For a number of reasons, this is going to be a very meaningful ride for me.

I’ll be riding for my dad, who is doing well one year into his treatment for pancreatic cancer.

I’ll be riding in memory of my grandfather, who battled prostate cancer, and my grandmother & aunt, who each battled breast cancer. 

I’ll be riding for my mom, who is a breast cancer survivor.

I’ll be riding for my wife and her family, who saw me through my recurrence just four years ago.

I’ll be riding for my daughter, so that she may never have to face this horrible disease.

I’ll be riding for my many friends who have faced this scourge head on.

I’ll be riding to thank all of those who have donated the money that created the treatments that allowed me to celebrate many birthdays (my own and those of others).

I ride for my fellow Living Proof riders, especially my teammates Diane, Suzanne, Betsy, and Melissa.

I’ll be riding because I can. I am fundraising because I am Committed.

In 17 days, I will hop on my bike and go the extra mile. Actually, I will go 100 extra miles to be exact. I will ride 300 miles (not the mere 192 miles of the official Pan-Mass Challenge), all the way across Massachusetts from the NY border to the end of Cape Cod in just 3 days.

Why? Because we need to make cancer a distant memory.

Please make a donation today to remember those who have passed, to honor those who are stricken, and to end cancer in our lifetime. Thank you!

Reminders of The Journey

1 Apr With my amazing Forza-G teammate Suzanne at the PMC Living Proof Portrait Portrait Project opening reception at the Museum of Fine Arts in Boston. Suzanne was one of the 43 survivors featured in this work by photographer Michael Casey.

At the beginning of April each year, I always have cancer on my mind. For both my bouts with cancer, April is when all the surgeries and treatments started. In the past week, I have been reminded of the collective power of those that have survived through the Pan-Mass Challenge​ #LivingProof Portrait Project, the enormous challenge in front of the cancer research community to find a cure via the PBS series “Cancer: Emperor of All Maladies”, the possibility of that cure being found sooner than later by the thanks to the 60 Minutes segment on the polio vaccine clinical trials happening at Duke right now, and the tremendous heartbreak that a friend’s family is experiencing as one of their own enters her final days.

With my amazing Forza-G teammate Suzanne at the PMC Living Proof Portrait Portrait Project opening reception at the Museum of Fine Arts in Boston. Suzanne was one of the 43 survivors featured in this work by photographer Michael Casey.

With my amazing Forza-G teammate Suzanne at the PMC Living Proof Portrait Portrait Project opening reception at the Museum of Fine Arts in Boston. Suzanne was one of the 43 survivors featured in this work by photographer Michael Casey.

One of the patients featured in Episode 2 received her treatment at Hopkins, so there are many of the images of her and other patients in this episode are in the very rooms where I received my treatment in 2011. It was a difficult watch for me yet fascinating and I encourage you to take the time. Episode 3 airs tonight on PBS and all are being replayed so set the DVR (or you can watch online at the link below)

Episode 1: Watch Here
Episode 2: Watch Here
Episode 3: (I will add the link when it gets posted)

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