Tag Archives: Hodgkins Lymphoma

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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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

 

 

Training on Hold

20 Jun

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

8 Jun

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

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

Consider Yourself Asked

30 Jul

If you are reading this and you have made a donation to my #pmc2015 ride across Massachusetts – again, I say thank you! If you have not made a donation yet, here’s the scoop. This weekend, I am riding my bike 300 miles in 3 days as part of the Pan Mass Challenge. We are raising money for cancer research at the Dana-Farber Cancer Institute in Boston. 100% of each donation is tax-deductible and will go to DFCI. Each dollar matters. I ride because I can – I am a two-time cancer survivor. Our goal this year is to raise $45 million and we need some help.

I am asking you to make a donation today. Here’s the link: http://www2.pmc.org/profile/as0171. It will take you a few moments. And it’s simple – your donation will save lives.

Please check out my blog for more stories about my cancer journey and my ride.

We are getting closer… every day

4 Jun

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.

Reminders of The Journey

1 Apr 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.

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)

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