Half-life

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

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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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.

Treatment 12
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

 

 

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.

20for20

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