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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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.

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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

Last Year’s Followup Was Not That Boring

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.

 

 

 

 

 

17 Days Until the 2015 PMC… Why Will I Be Riding 300 Miles in 3 days?

Why I Ride

This year is my 9th year riding the Pan-Mass Challenge! For a number of reasons, this is going to be a very meaningful ride for me.

I’ll be riding for my dad, who is doing well one year into his treatment for pancreatic cancer.

I’ll be riding in memory of my grandfather, who battled prostate cancer, and my grandmother & aunt, who each battled breast cancer. 

I’ll be riding for my mom, who is a breast cancer survivor.

I’ll be riding for my wife and her family, who saw me through my recurrence just four years ago.

I’ll be riding for my daughter, so that she may never have to face this horrible disease.

I’ll be riding for my many friends who have faced this scourge head on.

I’ll be riding to thank all of those who have donated the money that created the treatments that allowed me to celebrate many birthdays (my own and those of others).

I ride for my fellow Living Proof riders, especially my teammates Diane, Suzanne, Betsy, and Melissa.

I’ll be riding because I can. I am fundraising because I am Committed.

In 17 days, I will hop on my bike and go the extra mile. Actually, I will go 100 extra miles to be exact. I will ride 300 miles (not the mere 192 miles of the official Pan-Mass Challenge), all the way across Massachusetts from the NY border to the end of Cape Cod in just 3 days.

Why? Because we need to make cancer a distant memory.

Please make a donation today to remember those who have passed, to honor those who are stricken, and to end cancer in our lifetime. Thank you!

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…..

Do you remember what happened to you 19 years ago today?

I do.

Here I am during the summer of 2011 - about to get chemotherapy to help rid my body of  Hodgkins lymphoma. #19for19
Here I am during the summer of 2011 – about to get chemotherapy to help rid my body of Hodgkins lymphoma. #19for19

It was a day that changed my life.

It was the day that I first became a cancer patient.

I didn’t think back then what life was going to be like when I was 41 years old.

I was just hoping that I’d get to 23.

And now, all these years and one recurrence later, I am still going and committed to helping create a world that is not afraid of cancer. A world that can cure and control cancer once it enters a body in a way that is humane and allows everyone to maintain their quality of life. That is why I am asking everyone to make a donation to my annual PMC ride for the Dana-Farber Cancer Institute today.

Would you donate $19 today to help me celebrate my 19th year of survivorship AND to create a cancer-free world? That 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