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

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.

 

 

 

 

 

We are getting closer… every day

I believe that cancer is about to be defeated and I’m doing my part. Please join my effort to find the cures that will wipe out cancer from our world: donate today: http://give.pmc.org/as0171

Here’s a 30 second video showing the results that are being achieved at Dana-Farber Cancer Institute with the money that is being raised. Learn about the research breakthroughs, clinical leadership, and ongoing mission of DFCI.

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)

Quite the week

Last week started with me celebrating my 19th anniversary as a cancer survivor. But it was filled by three events that mark the ups and downs of my life with cancer.

The first event was by far the saddest and most tragic. We learned that the mother of another child at our daughter’s daycare was taken from her family far too young by colon cancer. Our daycare community in the last week has been rallying around the surviving  husband and their two young daughters. My prayers for this man have been focused on allowing him to remember his wife and their love with happiness and not heartache.

The second event was the exact opposite news – A college friend announced that she had just had stage one melanoma removed surgically and that she was now cancer free.The melanoma was found one week after she gave birth to her first daughter. Kind of the exact opposite. Her prognosis is excellent she is now cancer free and she has already started to preach the importance of sunscreen, as she recently posted online:

 “Know your body, trust your instincts, go to your dermatologist bi-annually (or anytime something new crops up or changes) AND WEAR SUN SCREEN ALL THE TIME, even in your car or out running errands. These actions can save your life – it did mine.”

Well said!

@ waterstop 4, day 1
At a rest stop during the 2010 PMC – Norm at right. So excited he’s getting in the saddle this year and riding first Pan-Mass Challenge!

The third and final event is one that brings me great joy. After many years of watching and supporting me in my PMC rides (including waking up at 4am on Sunday morning to drive me to the second day start in Bourne – he didn’t do this just once, he has done it EVERY SINGLE YEAR), my father-in-law Norm has decided to join the cause himself. He will be riding with me and my team from Sturbridge to Provincetown the first weekend in August. Pretty freaking cool.

I invite you to support Norm’s PMC ride, just as you have generously supported me through the years, especially if your last name is Decker, Pazzaglini, Blandini, Narog, Barr, Scanlon, or Mamer, just to name a few.

As always, this ride is all about putting an end to cancer. The race is not to get to the finish line in Provincetown, but the race is to save lives. Whether you make a donation to me or Norm or another PMC rider, you can rest assured that 100% of your donation is going into the research that ultimately will save lives.

Donate today:  Andy Seguin  |  Norm Decker