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Half-life

23 Mar

I am often telling Michele that “today is another one of MY DAYS“. An anniversary that only I remember – the days I found a lump, the days I was diagnosed, the days of my surgeries, the days that I found out that the cancer that had invaded me was gone, the days that the treatments ended.

Today is another one of those days.

First and foremost, it is my birthday, so it is a day that I share with my mom and dad, my family, and my friends. But this one, I have been thinking about for a while.

I was diagnosed with Type 2A Hodgkins Lymphoma when I was 22 years old. I have now celebrated 22 birthdays since that DAY. So half of the birthdays of my life.  One of the images that I comes to mind is of a young girl, maybe 8 or 9, who I would sit in the radiation oncology waiting room with way back in 1996. I don’t remember speaking with her. I remember her and her mom vividly. But I’ve been thinking that her half-life day would would been as a teenager. I hope that she made it to see that birthday and many more.

 

Also on our mind these days is a dear family friend and her kids. All signs so far are good that she will see many more birthdays – her own, and those of her girls.

And sadly on my mind as well today are two families that have recently lost a dear family member from this disease after long, challenging battles. May the remainder of their days be filled with good memories of their loved ones, rather than the harsh realities of their lives with cancer.

I will undoubtedly be serenaded with “Happy Birthday” a number of times today. I am thankful to be around to hear those lyrics.  Twice in my life, 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.

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?

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 in August, is raising money so that cancer will be cured. 100% of your donation will go directly to Dana-Farber Cancer Institute’s unrestricted funding. In this day and age where research funding is under attack, these funds are crucial. 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

livingproofsticker

September 27 – my 5th #chemoisdone cancer-versery

27 Sep

Nearly all of us have these dates that are burned into our memory banks. The obvious ones are the days that we got married or the days our kids were born. Other days stick because of their historic significance. Some of these days are sad, as we mark the loss of a loved one. It is on these days when we often are perhaps our most contemplative and reflective. We try to understand where we have been and were we are going, and perhaps, if we are lucky, we can understand the path that we have followed.

Treatment 12

September 27, 2011 – Final chemo treatment. Living Proof again!

Today is one of these days for me. As I have mentioned in this space many times before…. the picture below shows me as I am getting ready to receive my 12th and final chemo treatment five years ago today. I have friends who celebrate their birthday today and know of a few couples who celebrate their anniversaries. But today, this day will always be one of reflection, mixed with happiness and remorse. As we move into this new era of not being actively monitored, obviously there is a joy of survival. But the memories of those who have passed from cancer, the images of the children that I saw each week while getting radiation 20 years ago, the conversations I had with fellow patients who were parents and grandparents – those are etched in my mind as well, a ongoing reminder that my mission to beat cancer did not end on this day five years ago, but that it had only just begun.

This year, as I have been sharing my 20th and 5th year anniversaries of my cancer treatments, I have received tremendous support, both emotionally and in terms of donations made to my PMC ride. Donors to my ride have been more generous than ever, contributing over $9,000 to the PMC and Dana Farber this year. And the PMC team that I am so proud to be on has also received unprecedented support this year, as we have already surpassed our team goal and eclipsed $500,000 in total donations brought in. But this PMC event, for me, is more than the money. There is a passion, a commitment, that is common among the PMC ridership that I cherish – we are all motivated to see the day when cancer is no longer the formidable foe that it has been for all of human existence. I share a bond with an even more select group of the ridership who have experienced cancer first hand and, this year, have had more interesting conversations with my fellow Living Proof riders than ever before. It is our shared desire and commitment towards this goal that pushes me onward.

There were days this summer, in the midst of training for the PMC, when I was questioning whether or not my tenth would be my last. Or if I should at least take a break. But then to be around the riders, the Living Proof, and my teammates for an entire weekend – those thoughts quickly were swept away, knowing that our work is not yet done. That work that I committed to be a part of when I left the oncology ward five years ago today – to end cancer in our lifetime. My part is small, to provide some motivation and inspiration to fund the research for the cures. But it is my part, my mission, my passion, my commitment.

I will end this ramble by sharing a quote I took from a speaker at a conference that has been guiding my vision for my #lifewithcancer moving forward – excited to see what comes of it:

“Do not spend you life trying to prove yourself. Spend your life trying to improve yourself”

Five years later.

29 Aug

[guest post by Michele]

In the middle of Andy’s cancer treatment and for an untold duration thereafter, I desperately wished for someone to just tell me when it would probably be behind us.   I yearned for that singular powerful instant in which to say cancer is over and we had moved on, that one definitive celebration that represented freedom.  Its promise kept me going some days.

Little did I know that the disruptive intensity of cancer’s arrival would never be matched in its departure.  Like grief, healing has its own convoluted timeline with its fits and spurts, its painful lulls and setbacks.   Andy’s recovery as a patient, mine as a caregiver, and ours as a family were rarely if ever in sync.  Routine and observable milestones seemed entirely irrelevant to the process.  In truth, nothing about healing or recovery bore remote resemblance to the chronological time that had once appeared so steady.  This was wildly unsatisfying.

Some of you know that this experience prompted me to forgo time entirely for a bit.  It seemed so unreliable.  I began to form plans only at the last minute and grudgingly at that.  If pressed to advance plan, I always couched it as “probably” and “possibly”.  Every “commitment” had an exit strategy, many of which were executed.  Plans that went as planned were truly a surprise to me when they occurred.  On a birthday, I announced that I would age in reverse for a bit and I believe that I actually did.

Our latest observable moment is Andy’s release from oncology patient status.  Is this it?  Is this our moment?  He transitions from the discomfort of monitoring to the, albeit milder, discomfort of freedom and release of the safety net.   Pre-scan anticipation, “What if there’s something?  How much has it changed?  What if it is overmonitoring?” will be replaced with the occasional, “What if it returns?  How will we know?”  This is the very essence of #lifewithcancer.

To be clear, we have no complaints.  Far from it.  Our lives are more healed than ever before.  I recently made a haircut appointment weeks in advance and then actually showed up for it, a milestone that Andy instantly recognized.  We are intensely aware of surviving, of the luxury of recovery, because we know too many for whom clear scans and release from oncology patient status may well be unattainable.  But milestones beg reflection, and this is a truth rarely told.  Turning points of healing can be subtle, ill-defined and sometimes only seen in retrospect.  Most of ours were.  They require an insightful eye and an open heart.  Observable metrics like time are overly simplistic and leave much to be desired.  Yet we celebrate them nonetheless.

To all the open hearts that supported our recovery, and to all who continue to celebrate milestones with us –  both time-bound and less concrete – we remain so very thankful.

Another Anniversary – this time #20

24 Jul

Today is the 20th anniversary of my first last round of cancer treatment. For those reading who are confused by that last sentence, on July 24, 1996, I received my final radiation treatment as part of my treatment against Hodgkin’s Lymphoma. I was cancer free until the Spring on 2011, when I found a lump and started chemo. So today is the anniversary of the first time I had my last cancer treatment.

usna_072316

Yesterday, in 90+ degree heat, teammate Mark (at right) and our friend Bill (center) took a break on our 50 mile ride in Annapolis.

Yesterday, I got out for my first 50-mile ride since the spring, due to all the ailments I mentioned in recent posts. Today, Mark and I backed it up with another 55 miles. We got toughened up by some mechanical issues. My 10th PMC is merely two weeks away, I haven’t always loved my time on the bike. Only in the last few years, since my recurrence, have I truly fallen in love with cycling, finding the time on my bike to be a glorious place to think about my situation, my life, the world around us, and to think about the far to many people that I know who are battling cancer or have recently succumbed. I keep looking for more motivation to help inspire me in my fundraising efforts. What I realized today, especially after coming back after today’s ride to learn of the passing of a teammate’s friend, is that I can’t be more motivated or passionate. I, like so many, live and breathe the cause of defeating cancer as quickly as possible. Every day that passes, more lives are lost or changed.

All of this reminds me of what lays ahead of me in two weekends. I will ride my bike 200 miles across Massachusetts and complete my 10th Pan-Mass Challenge.

I ride the PMC for many reasons. I recently blogged about many of them here. I ride for my fellow survivors and our loved ones who have been taken from us to soon. I ride to inspire a belief that cancer can be overcome because of ground-breaking research and to help raise the funds to make that dream a reality.

I ride the PMC for birthdays and anniversaries. I think about all of the birthdays that I have had that without that radiation treatment back in 1996 that I would have missed. And, as every cancer survivor knows, there are lot of anniversaries – the day you were diagnosed, the day you started treatment, the day you finished. And hopefully, the day you found out you were cancer-free.

I write a lot on my birthdays and these anniversaries. I am reminded every day that I am a cancer survivor, but on these days, for some reason it takes on a different meaning. I have not been shy about  celebrating my 20th year of beating cancer the first time, my 10th Pan Mass Challenge ride, and my 5th year cancer-free since round 2 in 2011. I am proud to be Living Proof that all the research that this ride and many other worthy events has funded and I share all of these things with the world with the hope that the momentum we have in defeating this disease will continue until the job is done.

Since I started this post, odds are, someone was told that they had cancer. I know that they are probably very afraid and scared of what is to come. We all have the opportunity to create cures for cancers. I got one. Then I got another one. Not everyone does. Please give the gift of life today by contributing and sponsoring research and treatment at the ground-breaking Dana-Farber Cancer Institute! Click here to donate.

Thank you for making a difference.

 

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.

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

4 Feb
[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

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)

Cue the music

23 Mar

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

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