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

 

 

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 today100% 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.

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

2016: How could it be 20 YEARS…or 10 YEARS or 5 YEARS? Where does the time go?

[Note: On the occasion of today being World Cancer Day, I finally sat down to write my annual appeal that lives on my PMC donation page and I am sharing it here for your reading pleasure]

 

Many of my college friends will remember the day, in February 1996, the year after I graduated, when I told them I had cancer. During those days, these friends gave me more than I could ever hope to return to them.

Many of my Boston friends will remember when I held my first PMC fundraising event at Harpoon in July 2007. On this day and over the years since, these friends have supported my ride, joined me on the road, and given me more than I could ever hope to return to them.

My Baltimore friends remember learning that my cancer had returned in April 2011. In those days and the years since, these friends and families have been integral in getting me through treatment and the long recovery that followed and incredibly supportive of my PMC efforts despite the fact that many of them have no idea where Sturbridge, MA is. These friends have given me, Michele, and Shannon more than we could have expected, and we can only hope that we can match the generosity of love and spirit that they have shared with us.

When I get on my bike, whether it is in the basement on the trainer or out for ride… it is these moments and these friends who I think about. These moments act as a reminder of what I have been through. The surgeries. The horrible chemo treatments. The unforgiving recovery. That first ride after chemo, all 2 miles of it. The dozens and dozens of blood tests and CT scans. The uncertainty of what is next. These friends motivate me to get over that next hill, to go for that next ride, to spend another hour in the basement on my bike going absolutely nowhere. Because so many have told me about family and friends who have been diagnosed with cancer… or have been lost to this disease. I push and grind and push and grind each year to raise funds for Dana-Farber so that these friends no longer have to worry about the hearing the dreaded words You have cancer or your child has cancer or your mom has cancer.

This year’s PMC, my 10th ride, will be my way to personally celebrate all these people and moments. PMC weekend is always very emotional for me. Being with all the cyclists focused on raising massive funds for a cure and spending time with fellow survivors is always very moving and emotional. I feel like I am either crying or laughing the whole weekend. As this year coincides with my 20th anniversary of my initial bout and the 5th anniversary of my recurrence, I plan to spend a lot of time connecting with friends who have help me and my family through the years and through the treatments and say thank you. I ride the PMC because I don’t know what else I can do to end cancer except raise money, raise awareness, and be thankful for the opportunity to just be able to ride.

So, as I embark on 8 months of training so I can ride 300 miles in 3 days in August, I say to you thank you for all you have given me through the years in your friendship and support and, of course, your generosity. Since you are reading this now, I hope that you will take another moment to help me in the cause to help end cancer in our lifetime. Any amount is welcome, and I am grateful for your contribution. Thank you!

Make your donation to help end cancer today

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)
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?

Everyone Has A Reason

I am so thrilled to share this video with everyone. Not because I am in it, although I am very honored and proud of being included. It is because for my many friends and family who only know the PMC through me, this is a chance for me to introduce you to some of my very special teammates on Forza-G.

It is with great pleasure that I introduce to you:

  • our team founder and insatiable captain Matt Dillis,
  • my great friend and perhaps the best person I know, Jaime Schier, who talked me into doing the PMC,
  • and my fellow cancer survivor Betsy Bowman who inspires me with her humor, spirit, and love of life.

I would love your comments. Thanks to our teammate Jay for conceiving of and producing this video piece.

 

We Are Forza-G

Members of Team Forza-G talk about the origins of the team and why they ride the Pan Mass Challenge. Video courtesy of Last Minute Productions.
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The 2015 ride is 2 weeks away – please help us achieve our fundraising goal by making a donation at http://www.pmc.org/tf0086.

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