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.
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”
Yesterday, Team Forza-G reached a milestone – $500,000 raised this year for the Dana-Farber Cancer Institute and the Pan Mass Challenge. Very proud of this achievement by our team of 62 riders. Thanks to all of you who have donated to my ride this year!
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.
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…
If you are reading this and you have made a donation to my #pmc2016 ride across Massachusetts – again, I say thank you! If you have not made a donation yet, here’s the scoop. Next weekend, I am riding my bike 200 miles in 2 days as part of the Pan-Mass Challenge. We are raising money for cancer research at the Dana-Farber Cancer Institute. 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. The Dana-Farber is the research center that first found the treatments for Hodgkin s Lymphoma, which I battled. Our goal this year is to raise $46 million and we need some help.
I am asking you to make a donation today. Here’s the link:http://pmc.org/egifts/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.
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, 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 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.