Thoughts on World Cancer Day

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:

• The 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.

Training on Hold

Twice this spring, my marching orders have become “no activity”. When you are trying to train for a 3-day, 300 mile bike ride in early August, spending a week in May and then at least two more weeks in mid-June without being able to ride your bike at all is not the ideal situation. Thankfully, the winter and early spring was relatively mild and I was able to log some solid outdoor mileage during a time when I am usually sitting on the trainer in the basement.

So why these periods of “no activity”?  Well, here’s the story. Because of all the radiation and chemo-therapy treatments I have received over the past twenty years, I am susceptible to having a “second cancer”, a new, seemingly unrelated cancer. The list of possibilities includes melanoma, which means that I now make annual trips to the dermatologist.

My most recent visit in May found a “compound lentiginous dysplastic nevus with moderate to severe atypia and focal scar”. Translation: a mole that doesn’t look quite right that may (or may not) eventually become a melanoma. Therefore, on the spot, the dermatologist removed the mole from my lower back with the instruction to “take it easy for a week or so”. When pushed on what that meant, I was told “no exercise, let the wound heal, to reduce risk of infection”. That was the first week of no cycling. Not a big deal – it was May and here in Baltimore it rained nearly the entire month. But it did keep me from going out at least twice, possibly three times.

Well, when your dermatologist tries to remove a mole, they don’t like it when they leave some of it behind on your body, which is what happened to me. So, back to the outpatient center I went last week, expecting a quick procedure to “get the margins” of the mole and be done for at least this round. After finding this mole and seeing all my other moles on my back, the dermatologist in May suggested that my annual appointment should become a twice a year visit. But this visit wasn’t to dermatology, it was to “dermatology surgery”. I really hadn’t expect that to mean that they would really take a nice healthy chunk of my lower right back out of me and need to both suture AND stitch me up. Two more weeks of “no activity”. Not my ideal way to spend the first two weeks of summer. Argh!

The good news is that I don’t have a melanoma and that I am being watched closely. My lymph node situation continues, of course, so I am truly the ‘watched pot”. I hope I “don’t boil”.  This time to reflect on how carefully I am being watched, and the three different people that I have known this year who have been fortunate to have their cancers detected early has been a tremendous reminder to me of the importance of vigilance and annual physicals. If you are 40 years old, get in the habit of going to see your primary care physician every year. If something doesn’t seem right, go see your doctor. This is the reason why I am still alive. I found a lump in my neck in January 1996. I was seen by a doctor 2 days later. Five years ago, I found the lump in my groin. I hadn’t started seeing a PCP here in Baltimore yet, so I found one, made an appointment for three days later on a Friday. After this appointment, I had an CT scan on Monday, and an appointment with a surgeon on Tuesday. Timing is everything! While I am frustrated that a mole on my back is keeping me off my bike, I am grateful that I am the ‘watched pot’ and that it was only “atypical” and had not yet had the chance to fully develop into melanoma.

Just another reason why I ride the Pan Mass Challenge, to help improve the detection and the treatment of the diseases we know as cancer. The way that cancer will be defeated is through research, and the only way that can happen is if we the people fund it. That’s why I ride. If you would to help end cancer in our lifetime, a goal that I know we can achieve, please donate here today! 100% of your donation to the PMC will be used for live-saving cancer research and treatment at the Dana-Farber Cancer Institute.

Thank you for reading. I look forward to seeing you on the road – hopeful on my bike, soon. All the best!

Sharing My Thoughts From National Cancer Survivors Day

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

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.

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

Consider Yourself Asked

If you are reading this and you have made a donation to my #pmc2015 ride across Massachusetts – again, I say thank you! If you have not made a donation yet, here’s the scoop. This weekend, I am riding my bike 300 miles in 3 days as part of the Pan Mass Challenge. We are raising money for cancer research at the Dana-Farber Cancer Institute in Boston. 100% of each donation is tax-deductible and will go to DFCI. Each dollar matters. I ride because I can – I am a two-time cancer survivor. Our goal this year is to raise $45 million and we need some help.

I am asking you to make a donation today. Here’s the link: http://www2.pmc.org/profile/as0171. It will take you a few moments. And it’s simple – your donation will save lives.

Please check out my blog for more stories about my cancer journey and my ride.

Final Training Ride for #PMC2015

HAY! My training partner, Forza-G teammate, and friend Mark and I on training ride in Baltimore County (July 2015)

This morning, I completed my final training ride for this year’s Pan Mass Challenge. I didn’t take a selfie (this photo was taken last weekend). I just rode and thought about the people who have shared their cancer connection with me. It’s hard to ride with the sun rising in your eyes that are full of tears. Frankly, you do get used to it.

I set some goals at the beginning of the year – to be a more impactful advocate for cancer survivors, to be a better fundraiser for the PMC, to be a more engaged teammate to Team Forza-G, and to train my tail off. If I can do these things as well as my training has gone, I can rest well. I have already ridden more miles this year than any other year and this month, I have ridden more miles than I have in any other month of my life. After 1,331 miles and an estimated 82,000 feet of vertical climbing, I am officially done training and ready for the PMC.

My focus is now on enjoying my 3-day ride across Massachusetts with my 55 Forza-G teammates and our families, the 5,500 plus riders, the 3,000 plus volunteers, with all of the well-wishers along the route, and without a doubt, with my father-in-law Norm, who will be riding in his first PMC this weekend!

Special thanks to my training partner and teammate Mark D’Agostino for sharing many laughs along the roads of Maryland and Pennsylvania with me throughout the winter, spring, and summer.

Now it is my time to ask you. Will you push on with me? What are you willing to donate today to help end cancer and to see an end to the pain, suffering, and sadness that this insipid disease causes?   What if it was the life of a loved one, a friend, or a college roommate? What if it was your child? What if it was you?

Make a donation and save lives. It is that simple. Right now, you have a chance to save lives.

Last Year’s Followup Was Not That Boring

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 today! 100% of your donation to the PMC will be used for live-saving cancer research and treatment at the Dana-Farber Cancer Institute.

 

 

 

 

 

Where Does Your Donation Go?

I get asked all the time about ‘where does the money go’ from all you amazing donors. Here is a great graphic that shows how the money went to work at Dana-Farber Cancer Institute last year. This year, the event’s goal is to raise $45 million so that the 36-year total will be raised to a very cool and substantial $500 million. Yup, 1/2 a billion dollars to help cure cancer.

Remember: THE PMC DONATES 100% OF EVERY RIDER-RAISED DOLLAR TO DANA-FARBER CANCER INSTITUTE THROUGH ITS JIMMY FUND. Make your donation today

The Pan-Mass Challenge (PMC) raises money for Dana-Farber Cancer Institute and the Jimmy Fund’s lifesaving mission to conquer cancer. In 2014, committed riders, donors, sponsors, and volunteers joined together to contribute $41 million. This chart shows how Dana-Farber uses these funds to bring us closer by the mile.

You can also learn more via the video below which explains “Where The Money Goes” when you donate to my PMC ride. Dana-Farber Cancer Institute President and CEO, Edward Benz Jr., MD, explains the impact of Pan Mass Challenge donations on Dana-Farber’s mission of advancing cancer research and improving patient care. While I have always known that PMC’s support to Dana-Farber is critical to their mission, it is extremely enlightening to hear Dr. Ed Benz highlight specific advances that have been achieved because our collective efforts and contributions.

As you watch this video, I’m sure you will appreciate the importance of the donations you have made. Thank you for your continued support!