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

 

 

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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!

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

Long Time, No Blog

It has been a while since I last wrote. It certainly has not been because I haven’t been thinking about the PMC. Nor has it been that I haven’t been thinking about friends and friends of friends who are actively in their own personal battles against cancer. The basic reason is that life is being lived.

Much of the time that I spent blogging over the past years, since my recurrence, has thankfully been claimed by training for the PMC. Since first getting back outside in early April, I have logged over 600 miles and 40 hours riding around Baltimore, and in Connecticut and Pennsylvania, too. I am on pace to do more training than I have ever done for the PMC before. And it is a good thing too, because I am planning that in 2 months that I’ll be riding 300 miles in 3 days from one end of Massachusetts to the other.

Roadside, Western Connecticut Emu
Roadside, Western Connecticut Emu
Another training ride across state lines
Another training ride across state lines

Each time I roll out for a training ride, I proudly wear one of my many PMC or Team Forza-G jerseys, knowing that I am part of a fundraising army. One on a mission, each year going a little bit farther than the last. I recently told someone here in Maryland about the PMC. I told them how far I was going to ride. Jaw drops. I told them how many people. Jaw drops a little further. Then I told them how much money – $45 million. They asked “over how many years?” to which I replied “that’s this year”. Jaw hits floor. I’ve had this same conversation again and again. The scope of what the PMC and all of the riders is trying to do is massive. And it is necessary. And it will one day be completed.

But that day has not yet come… so we continue to train, and push ourselves to go farther. To come back from battling cancer to inspire and help lead the charge. To ask again, for what probably seems like the 100th time, for donations. To dream about the day that I won’t need to do that. To worry about the day that I won’t be able to do any of this. But until that day, I will push on, like so many have before me, and so many more inspiringly do each and every day.

Now that you have taken the time to read this post today, won’t you take another moment, to make a difference yourself by giving? 100% of your donation to the PMC will be used for live-saving cancer research and treatment at the Dana-Farber Cancer Institute.

Basically, your donation will save someone’s life. Someone like me.

All you have to do is click here…..

With my amazing Forza-G teammate Suzanne at the PMC Living Proof Portrait Portrait Project opening reception at the Museum of Fine Arts in Boston. Suzanne was one of the 43 survivors featured in this work by photographer Michael Casey.

Reminders of The Journey

At the beginning of April each year, I always have cancer on my mind. For both my bouts with cancer, April is when all the surgeries and treatments started. In the past week, I have been reminded of the collective power of those that have survived through the Pan-Mass Challenge​ #LivingProof Portrait Project, the enormous challenge in front of the cancer research community to find a cure via the PBS series “Cancer: Emperor of All Maladies”, the possibility of that cure being found sooner than later by the thanks to the 60 Minutes segment on the polio vaccine clinical trials happening at Duke right now, and the tremendous heartbreak that a friend’s family is experiencing as one of their own enters her final days.

With my amazing Forza-G teammate Suzanne at the PMC Living Proof Portrait Portrait Project opening reception at the Museum of Fine Arts in Boston. Suzanne was one of the 43 survivors featured in this work by photographer Michael Casey.
With my amazing Forza-G teammate Suzanne at the PMC Living Proof Portrait Portrait Project opening reception at the Museum of Fine Arts in Boston. Suzanne was one of the 43 survivors featured in this work by photographer Michael Casey.

One of the patients featured in Episode 2 received her treatment at Hopkins, so there are many of the images of her and other patients in this episode are in the very rooms where I received my treatment in 2011. It was a difficult watch for me yet fascinating and I encourage you to take the time. Episode 3 airs tonight on PBS and all are being replayed so set the DVR (or you can watch online at the link below)

Episode 1: Watch Here
Episode 2: Watch Here
Episode 3: (I will add the link when it gets posted)

Cue the music

Yes – today is my birthday. #42 to be exact.

I will undoubtedly be serenaded with “Happy Birthday” a number of times today. I am so thankful to be here to be awash of those glorious lyrics.  Nineteen years ago this March,  and then again, four years ago this March, 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.

fighting

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? Most likely you do – there are 15 million cancer survivors living in the United States today, nearly 1 out of every 20 people.

fightingforthem

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, is raising money so that cancer will be cured. 100% of your donation will go directly to Dana-Farber Cancer Institute’s unrestricted funding. 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