It’s a Ride and a Race

Later this morning, my father-in-law Norm and I will be heading out to Sturbridge, MA to get ready to spend our weekend on our bicycles. It’s Pan-Mass Challenge weekend – this will be my 11th ride and Norm’s 3rd. Cycling has become a year-round activity for both of us, so training for the ride never stops. I will often be asked during the year “Are you doing the race again this year?” or “are you ready for your race?” I try not to correct them anymore – “it is ride, not a race”, I used say. Because the cycling event itself is a supported ride, across Massachusetts.

But it is a race. The race is to see how quickly we can fund the curing of cancer. I ride in 38 degrees in February thinking about cancer. I ride in 95 degree heat in July thinking about cancer. I ride the PMC, thinking about cancer. Thinking about all the pain and suffering cancer has given me. Thinking about all that cancer has taken from my friends and their families. Thinking that one day soon, cancer will be defeated. To me that means, the researchers and doctors that the PMC funds and others will have discovered and mastered the mechanisms to make cancer cells obsolete quickly and at low impact to the individual when they show up in the human body. Not some. ALL. Period. End of story. End of cancer.

It is a race. While we are getting closer to this day each and every year, we are not there yet. My dad has been going through treatment for 3 years now for pancreatic cancer with no end to treatment in sight. The mother of my daughter’s best friend has been undergoing breast cancer treatment for months now. One of my PMC teammates just lost his cousin 10 days ago. In the past 12 months, I know of countless other people who have similar stories.

Who do you know that is going through cancer treatment right now? Or has recently? Have you ever wondered…. who’s next?  I know I do. I look at my wife, who hadn’t met yet when I beat cancer the first time, and wonder if she’ll have to deal with cancer someday. I look at my 7 year old and am so thankful that I am able to watch her grow up – she was 1 when my cancer recurrence happened and we didn’t know what was next. And now with our 4 month old son entering the world, I pray that both my kids will never have to hear the words “you have Hodgkin’s Lymphoma” with knowledge that there is an ever so slight genetic component involved with the disease.

It is with all this on my mind this morning, that I finish packing and head out to Sturbridge, ready to ride a bicycle 192 miles in the next two days.  The 6,200 cyclists that I will be riding with this weekend all do this to raise money for life-saving cancer research and treatment at Dana-Farber Cancer Institute  (DFCI). The PMC raises more charitable dollars than any other single event in the country – $547 million since 1980 and $47 million last year alone. This year’s goal is  $48 million. Your donation brings us Closer by the Mile to ending cancer.

You have generously donated in the past. I hope that this note finds you well and that you will again make a donation that is going to save lives.

We are PMC and Now We Ride!

100% of your donation will go to cancer research and treatment at Dana-Farber Cancer Institute through its Jimmy Fund. I have made a personal commitment to raise $10,000. I hope you can you will again support my fundraising effort.

It’s Almost Time to Ride

I hope this note finds you well and enjoying the summer. Usually by now, I have already written a number of posts inviting you to make a donation to my Pan Mass Challenge ride. This year, a couple of things have kept me from my typical schedule.

First, and foremost, our family grew by one this spring, when Adam Winston joined us on April 6. Being a two-career household, balancing the unique schedules and needs of a 7-year old and a newborn, well, something had to give… in some part that has been my blogging and fundraising for the PMC. Happily, with the patience and accommodation of Michele, Shannon, and Adam, I have done more training for this year’s ride than I have ever done in the past. The bike has become my physical and mental therapy, a steady pick-me-up, a much-needed break from the swirling and shifting that our world is in 2017. While this will be my 11th PMC, I can honestly say that I truly started to enjoy cycling about 4 years ago and now am in love with it. My time with family and my time on the bike has left only fleeting moments here and there in which to even contemplate fundraising and continue to advocate for cancer research.

It does help that Shannon likes to go for 10 mile trail rides every now and again!

My second reason is perhaps a bit more complicated. Over the years, I have shared my personal cancer story and those of my family – my mom, dad, grandma, grandfather, and aunt. I have been moved by so many stories from the many survivors that I have the pleasure of knowing, and of others who have been taken from us to soon.

This year, both my mom and my mother-in-law have lost life-long friends.  The mom of one of our daughter’s best friends is going through treatment for breast cancer now.  I have struggled for months for the words to share about all of this.  For each survivor I know or meet, there is a sense of validation. That the years I have devoted to raising money for the Dana Farber Cancer Institute have been worthwhile. That the $76,000 that you have helped donate in my name via the PMC and the collective $547 million that this event has raised since 1980 is making a difference. And then there is the flipside, that it is not enough, that we are still losing people each day that should be cancer survivors and live out the rest of their days. As one of these survivors, now for 21 years, I know this is the typical survivor’s guilt. It is part of Life With Cancer.

It has always been these feelings – the validation and the guilt – that have motivated me to do this. To hop on a bike for 2 days and 200 miles to go across Massachusetts – at first, that was a challenge. Now, the challenge I have taken on is to advocate and help raise funds so that our kids and their friends don’t have to live in a world where their friends are lost to cancer when they are in high school, or college, or before they are married, or while their kids are still in school, or before they get to watch them get married, or before they get to hold their own grandchild and take them to their first game. Or to go on a bike ride with them.

Pan Mass Challenge is the ultimate challenge: to defeat cancer.  If riding a bike across Massachusetts with 6,000 other folks during the first weekend in August each year gives us the best chance to make this challenge a reality, then I’m the first to sign up.

So, the PMC is only 2 weeks away, and I am a long way from my fundraising goal. I am writing to ask you and about 200 of my friends, colleagues, acquaintances, and family members to again donate. Everything that I have learned in the past 21 years, since I was first diagnosed in 1996, about cancer research has led me to believe that cancer will be made history, possibly even in our lifetime.  It HAS TO BE IN OUR LIFETIME! But not without our help. That is why I ride the PMC – to help make this dream of a world without cancer a reality. Your continued emotional and financial support is what will make this happen.

Please take a moment this weekend to make your donation on my PMC webpage.

Thank you for your continued support,

Andy

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.

September 27 – my 5th #chemoisdone cancer-versery

Nearly all of us have these dates that are burned into our memory banks. The obvious ones are the days that we got married or the days our kids were born. Other days stick because of their historic significance. Some of these days are sad, as we mark the loss of a loved one. It is on these days when we often are perhaps our most contemplative and reflective. We try to understand where we have been and were we are going, and perhaps, if we are lucky, we can understand the path that we have followed.

September 27, 2011 – Final chemo treatment. Living Proof again!

Today is one of these days for me. As I have mentioned in this space many times before…. the picture below shows me as I am getting ready to receive my 12th and final chemo treatment five years ago today. I have friends who celebrate their birthday today and know of a few couples who celebrate their anniversaries. But today, this day will always be one of reflection, mixed with happiness and remorse. As we move into this new era of not being actively monitored, obviously there is a joy of survival. But the memories of those who have passed from cancer, the images of the children that I saw each week while getting radiation 20 years ago, the conversations I had with fellow patients who were parents and grandparents – those are etched in my mind as well, a ongoing reminder that my mission to beat cancer did not end on this day five years ago, but that it had only just begun.

This year, as I have been sharing my 20th and 5th year anniversaries of my cancer treatments, I have received tremendous support, both emotionally and in terms of donations made to my PMC ride. Donors to my ride have been more generous than ever, contributing over $9,000 to the PMC and Dana Farber this year. And the PMC team that I am so proud to be on has also received unprecedented support this year, as we have already surpassed our team goal and eclipsed $500,000 in total donations brought in. But this PMC event, for me, is more than the money. There is a passion, a commitment, that is common among the PMC ridership that I cherish – we are all motivated to see the day when cancer is no longer the formidable foe that it has been for all of human existence. I share a bond with an even more select group of the ridership who have experienced cancer first hand and, this year, have had more interesting conversations with my fellow Living Proof riders than ever before. It is our shared desire and commitment towards this goal that pushes me onward.

There were days this summer, in the midst of training for the PMC, when I was questioning whether or not my tenth would be my last. Or if I should at least take a break. But then to be around the riders, the Living Proof, and my teammates for an entire weekend – those thoughts quickly were swept away, knowing that our work is not yet done. That work that I committed to be a part of when I left the oncology ward five years ago today – to end cancer in our lifetime. My part is small, to provide some motivation and inspiration to fund the research for the cures. But it is my part, my mission, my passion, my commitment.

I will end this ramble by sharing a quote I took from a speaker at a conference that has been guiding my vision for my #lifewithcancer moving forward – excited to see what comes of it:

“Do not spend you life trying to prove yourself. Spend your life trying to improve yourself”

Five years later.

[guest post by Michele]

In the middle of Andy’s cancer treatment and for an untold duration thereafter, I desperately wished for someone to just tell me when it would probably be behind us.   I yearned for that singular powerful instant in which to say cancer is over and we had moved on, that one definitive celebration that represented freedom.  Its promise kept me going some days.

Little did I know that the disruptive intensity of cancer’s arrival would never be matched in its departure.  Like grief, healing has its own convoluted timeline with its fits and spurts, its painful lulls and setbacks.   Andy’s recovery as a patient, mine as a caregiver, and ours as a family were rarely if ever in sync.  Routine and observable milestones seemed entirely irrelevant to the process.  In truth, nothing about healing or recovery bore remote resemblance to the chronological time that had once appeared so steady.  This was wildly unsatisfying.

Some of you know that this experience prompted me to forgo time entirely for a bit.  It seemed so unreliable.  I began to form plans only at the last minute and grudgingly at that.  If pressed to advance plan, I always couched it as “probably” and “possibly”.  Every “commitment” had an exit strategy, many of which were executed.  Plans that went as planned were truly a surprise to me when they occurred.  On a birthday, I announced that I would age in reverse for a bit and I believe that I actually did.

Our latest observable moment is Andy’s release from oncology patient status.  Is this it?  Is this our moment?  He transitions from the discomfort of monitoring to the, albeit milder, discomfort of freedom and release of the safety net.   Pre-scan anticipation, “What if there’s something?  How much has it changed?  What if it is overmonitoring?” will be replaced with the occasional, “What if it returns?  How will we know?”  This is the very essence of #lifewithcancer.

To be clear, we have no complaints.  Far from it.  Our lives are more healed than ever before.  I recently made a haircut appointment weeks in advance and then actually showed up for it, a milestone that Andy instantly recognized.  We are intensely aware of surviving, of the luxury of recovery, because we know too many for whom clear scans and release from oncology patient status may well be unattainable.  But milestones beg reflection, and this is a truth rarely told.  Turning points of healing can be subtle, ill-defined and sometimes only seen in retrospect.  Most of ours were.  They require an insightful eye and an open heart.  Observable metrics like time are overly simplistic and leave much to be desired.  Yet we celebrate them nonetheless.

To all the open hearts that supported our recovery, and to all who continue to celebrate milestones with us –  both time-bound and less concrete – we remain so very thankful.

No Longer An Oncology Patient

Last Monday, August 22nd, I went to the cancer center for another set of bloodwork, a CT scan, and a follow-up with my oncologist. After that follow-up, I wrote this:

Usually, I hope to come back from these visits being called #boring. I’ve spent the week reflecting on this news – I knew it was a possibility and it is really great news. And I am slowly but surely getting used to the fact that the safety net of these follow-ups is no longer there. I am cautious though. And I will be vigilant. I have to be. I’ve already had one recurrence. And while you and I both want to think that Hodgkin’s won’t come back a third time, the fact of the matter is that is just a wish, a hope, a dream.

What I know today is

• that I am still cancer free after five years,
• that I am healthier physically and hopefully mentally than I have been in years,
• that I have a strong support system around me,
• that I am inspired and committed to do my part to rid the world of cancer,
• that I am indebted to my wife and our daughter, our family, and our friends for all the love and support during these tumultuous days,
• that cancer is beatable and I will advocate until my last days for the treatments to continue to improve so that a patient’s quality of life can be maximized
• that I need to figure out what this whole ‘not being a cancer patient’ thing is all about
• that my #lifewithcancer continues, because it has helped shaped my thinking, defined a purpose, and focused my passions.

In this space, in the very near future, I will share some stories from my 10th PMC, which was earlier this month.  It was a fantastic weekend for a bike ride. Til the next time…

Yours in life,

Andy

 

 

Another Anniversary – this time #20

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.

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.

 

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