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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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September 27 – my 5th #chemoisdone cancer-versery

27 Sep

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.

29 Aug

[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

28 Aug

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

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.

usna_072316

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

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.

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

Final Training Ride for #PMC2015

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

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?

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.

 

 

 

 

 

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