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.

 

 

 

 

 

Advertisements

The Big PMC Announcement (with Video)

Thanks to all my friends and family who donated to this year’s ‪Pan Mass Challenge – every single dollar you donated is heading to the Dana Farber Cancer Institute. Saturday night at a gala event at Fenway Park, the Pan Mass Challenge announced the largest total gift in the history of the event (and $1 million more than the goal). This gift brings the 35-year total donation to $455 million. It is the largest sum ever contributed to a charity by any athletic fundraising event anywhere in the world. The $41 million gift is $2 million more than the 2013 donation. This increase is a tribute to the commitment all of you have to this mission and this event. I personally have friends and teammates who have gone to Dana Farber for their treatment and are Living Proof that your donation is saving lives. On behalf of these friends, I humbly say THANK YOU!

I know that the research done at DFCI has made me a cancer survivor twice over as well. And I believe that one day, we won’t have to do this any more because DFCI and others will find the cures for all cancers. Until then, I am grateful for your donations, support, and encouragement. I’d share more right now, but I’ve got to get on my trainer – ‪PMC 2015 is just around the corner.

Here is the video they showed Saturday night at Check Presentation event to announce record-breaking donation by the Pan-Mass Challenge to Dana Farber. Sure if you did the slow-mo, I’m in there somewhere- certainly in all those Living Proof  photos.

This pretty much wraps the 2014 PMC year with a big live-saving bow. Only 56 days until I register for PMC 2015 so we continue on the path of stopping cancer.

 

Another Way to Support My Ride

I have told you before about the generous offer by my high school friend and independent fantasy author Jamie Tinker to donate 1/2 of the proceeds of sales from his first book The Widow’s Warning and his upcoming new releases to the PMC! [Available on Kindle, iBooks, Kobo, & Nook! Download yours today]

Jamie’s friend and talented poet Valeri Beers (another Mainer!) has also hopped on board and is donating a portion of the proceeds from the sales of her debut collection of poems, “…details…” to my PMC ride campaign. I am so honored and touch by her generosity! You can download it from Amazon for your reading device or purchase your own print version at Createspace for only $3.99! How about that – you can support a newly published poet and help fund cancer research all at the same time?

ABOUT …details…

Debut collection from talented Maine poet Valeri Beers. An intriguing collection of poems full of evocative imagery. Love, love lost, and yearning are major themes in this collection showing broad talent in a compact style.

And check out Valeri’s blog here.

 

Thanks to both Jamie and Valeri for sharing their talents with the world and for their generosity.

Recapping PMC 2014 and My Trip to Maine (Pt. 3)

Read PART 1 and PART 2

After 3 straight days on the bike, going from the western edge to the easternmost tip of the Commonwealth of Massachusetts, I would seem logical that I could only spend my only true vacation day of the entire trip by going for a bike ride. My Facebook post that day summarizes the 20-mile ride.

Enjoying my vacation day on the Cape with a bike ride! Evidently pulling a bike trailer with our 4-year old for 20 miles on the Cape Cod Rail Trail is considered a cool down ride. She’s going to be a great coach someday – whenever someone tried to pass me, she said “come on Dad, go faster”.

The following day, Tuesday, Michele and I headed up to Maine to see my mom and dad. As I have mentioned in this space, my dad has been diagnosed with Stage IV pancreatic cancer and has already started treatment.  After his 2nd chemo, just prior to the PMC, he was diagnosed with an infection and was treated in the emergency room. By the time we got there, it was one week later, and I was impressed by his energy. I spent Wednesday taking him to his doctor and then running errands with him while my mom, Michele, and a family friend went to Acadia National Park and Bar Harbor (unfortunately in the rain).

My dad holding Shannon when she was about 2 weeks old
My dad holding Shannon when she was about 2 weeks old

Thursday was a treatment day, chemo #3.  I took my dad to the cancer center. It was my first time in a cancer treatment room since September 2011. While the setup was different than the cancer center that I was treated in, the language and questions were the same, the procedures and safety measures were the same, and the caring nature of the staff was the same.  It is not uncommon for an adult child to take their parent to chemotherapy in this day and age – but it is certainly less common but not unprecedented that the adult child has been through the protocol already.  I had expected almost to have a reaction to being in that environment, chills or sweats, or a turn of my stomach. I followed my dad’s lead though, and was calm and comfortable with the surroundings.

At the end of this week, my dad will have his 4th chemo treatment which will then be followed, a few days later, by a PET scan. This scan will provide some insight as to how effective the chemotherapy regimen has been.  We will be hoping for the best, and fearing the worst.

So to recap this recap – PMC ride was EPIC and WET, my dad is doing as well as can be expected, and cancer still sucks. Thank you for taking the time to read and for the positive thoughts and prayers that you have sent to my family.

If you have made a donation to the PMC this year, THANK YOU! If you would still like to help end cancer, hopefully in our lifetime, you still can – simply visit http://www.pmc.org/as0171. Make a donation and save lives. It is that simple. Right now, you have a chance to save lives. 100% of every dollar you donate will go to the Dana-Farber Cancer Institute through its Jimmy Fund. Thank you!

Recapping PMC 2014 and My Trip to Maine (part 2 of 3)

(read PART 1 here)

SATURDAY, AUGUST 2nd: DAY 1

from Sturbridge to Bourne

Our 8th annual PMC Living Proof photo - me and my amazing friend Diane!
Our 8th annual PMC Living Proof photo – me and my amazing friend Diane!
We only see each other once a year, but I wouldn't trade those brief moments for the world.
We only see each other once a year, but I wouldn’t trade those brief moments for the world.

Despite riding nearly the entire day in the rain, Saturday was an absolutely amazing day – we had so much fun, as there was little traffic. I felt no lingering effects of the leg cramps from the day before. The rain really picked up after Mile 80 in Lakeville.  By the time I got to our team PIE STOP in Wareham to see Michele, Shannon, and the rest of the Deckers, I could barely feel my hands. That pie was so good, but all I craved at that point was a hot shower and clean clothes, both of which were easy to get – as long as I got on my bike again and rode 6 or 7 more miles in the rain.  After 100 miles, that was pretty easy.

My favorite part of PMC weekend, which I have talked about many times before, is reconnecting with fellow survivors at the Living Proof photo, especially my dear friend Diane, who it turns out was riding with one of my new teammates all day long (hey Diane – you really should join our team, we have PIE!), and one of my personal inspirations, Carie, who rode this year’s PMC with her son!

The official 2014 Living Proof photo. Over 500 survivors rode or volunteered at this year's PMC.
The official 2014 Living Proof photo. Over 500 survivors rode or volunteered at this year’s PMC. This group thanks to your donation gets bigger (AND LOUDER) each and every year. Yes, I am in there somewhere.
Our official Team Forza-G photo, 51 total riders this year! Weve now raised over $1.75 million to date and over $285,000 in 2014.
Our official Team Forza-G photo, 51 total riders this year! So far in 2014, we’ve raised over $285,000.

 

SUNDAY, AUGUST 3rd: DAY 2

from Bourne to Provincetown

The roads were wet in the morning, but dried out by mid-morning. Again, a great day on the bike with my team. I had the opportunity to lead our peleton for a few miles.   We rode together all day and a large group of us finished together. My thanks to Mike Weiner for riding with me up Route 6 into Provincetown when I fell back from our larger group. We really cranked it up those last few miles. My final mileage over the three days was 260 miles, not the 300 miles that I had planned but nevertheless the most I have ever ridden in one weekend and by far the most fun I have ever had on the bike.

Our team Living Proof ranks grew 50% this year with the addition of Betsy, who kept us all in good spirits with her humor and energy all weekend.  Our plan had been to take our team Living Proof photo on Saturday, but the world conspired against us. Thankfully, we found each other in Brewster at the 2nd Sunday rest stop.  I’d go for a bike ride with these two any day, any where, any weather.

Annual Team Forza-G Living Proof photo! Betsy (left), Suzanne, and me.
Annual Team Forza-G Living Proof photo! Betsy (left), Suzanne, and me.

 

Read More: PART 3: #DADCHEMO UPDATE

GO BACK and read PART 1:  DAY ZERO

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

Recapping My 3-Day PMC Ride and Visit to Maine

It is hard for me to imagine that 2 weeks have passed since my team and I arrived in Sturbridge, MA to start the 2014 PMC.  Let me see if I can come up with some words to describe this year’s 3-day ride across Massachusetts.

WET

THERAPEUTIC

FAST

EPIC

My 2014 PMC weekend started with the news that my dad, who started chemotherapy treatment in earlier July, had been admitted to the hospital due to an infection. Thankfully, the infection and his blood pressure were quickly controlled and his stay in the hospital was short. That fortunately meant that my trek across Massachusetts and the planned trip up to Maine following the PMC were still on schedule.

This year’s ride included an extra adventure, riding what my teammates have long called “DAY ZERO” from the New York & Massachusetts border to Sturbridge, MA. My good friend Barry Davis, himself a 34-year PMC rider, drove a large group of us from the Boston area out to Lenox in a school bus on Thursday afternoon.

pmc2014_dayzero_bus
As you can tell, we were very excited to get off the bus! Thanks Barry and Mark for getting us to Lenox safely!

FRIDAY, AUGUST 1st: DAY ZERO

A number of us started Friday morning at our teammate Kevin’s house in Lenox.

pmc2014_day0_start

And then we met the rest of the group riding on the Town Square in Lenox, MA. Twenty of us in total, heading west first to the NY state line, then east to Sturbridge.

pmc2014_dayzeroriders

pmc2014_dayzero_ride
Riding Day Zero. Yup – I can ride a bike!

The highlight of my Day Zero ride was completing a 4-mile, 700 foot climb at mile 50. The day’s plan though then went awry when leg cramps hit me hard on mile 60. I was done for the day, so I hopped in one of our support vehicles, got hydrated, and arrive in Sturbridge.

Later on Friday, as is our tradition, my teammates and I enjoyed the live PMC Opening Ceremonies at the Sturbridge Host Hotel. This year’s show was broadcast live on the Boston CBS affiliate and hosted for the first time in the history of the event by a PMC rider, CBS Boston’s own Lisa Hughes.

pmc2014_openingceremony
Not sure what Kevin is doing in the background here, but I am obviously telling Ben that I think he is awesome.
pmc2014_ceremony
some of Forza-G at the Opening Ceremonies

This year’s show was great – feel free to watch the opening ceremonies here:

 

READ MORE: PART 2- #PMC2014 SATURDAY & SUNDAY

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

Tomorrow, I Ride

My family is a cancer family.

My paternal grandmother (lung) and grandfather (prostate), my maternal grandmother (breast), my aunt (breast), my mom (breast) and most recently my dad (pancreatic) have all been stricken. And me too (lymphoma).

I made a commitment, before my daughter was even born, that I would give back to those who passed before me.

Each time I ride, I think about that commitment, and pray that my daughter will never have to worry about cancer or ride the PMC because cancer will be beaten forever.

My family is a cancer family.

That is why I ride – because one day, we will win and I have to know that I did my part.

If you want to check it out, here are the routes for this weekend:

Friday’s Ride: http://ridewithgps.com/routes/2968375
Saturday’s Ride: http://ridewithgps.com/routes/2968291
Sunday’s Ride: http://ridewithgps.com/routes/2961868

Donations are always welcome AND will help save lives by supporting cancer research and treatments at the Dana-Farber Cancer Institute. Please give today! http://www2.pmc.org/profile/as0171