Incredible!

Wow.

Thanks for being patient as I’ve tried to put my PMC weekend into words.  Turns out, it’s hard to summarize such an experience besides saying, “wow.”

But I’ll try, of course.  🙂

We packed up our car and headed north on Friday morning, wishing we had put “PMC or BUST” in our windows.  From the moment we turned off the highway into Sturbridge, MA, the signs started.  Every shop, every overpass, every DOT Construction sign was flashing “Welcome PMC Riders & Families!!!”  Incredible!

We arrived at the registration area and were greeted by dozens of volunteers who acted as though this was their favorite weekend of the year and they could hardly wait for it to get started.  They directed us to put my bike here…where I started to get a sense of just how massive 5,500 bike riders really is.

So then I went inside, where dozens more volunteers were waiting to happily take my name. When my volunteer pulled up my info, she set everything down and grabbed a cowbell: “We have a first year rider!!!!” she screamed, clanging her cowbell.  Everyone in the room grabbed cowbells and hollered and clanged and made a huge noise.  Riders registering on either side of my clapped me on the back and said “good for you!”

Within minutes, I had an official jersey, official socks, a braclet with a barcode, and a bag full of other goodies, all of which made me an official PMC rider.  Yikes!!!

Friday night was basically a huge party.  There was music, there was food (carbs, carbs, and more carbs!)  There were people who would service your bike for you, there were temporary tatoos for your calves (apparently a cyclist requirement), and t-shirts and jewelry made out of recycled bike chains.  There were signs that said “Lick Cancer,” and signs that said “F*** Cancer.”  It was happy and silly and absolutely bursting with nervous energy.

At 5am, we were back, finding our bikes in the dark early morning and queuing up with a couple thousand new best friends.  Music was blasting, and before I knew it, I was passing under the starting banner.

And that’s when I started to see the crowds.

People talk about the crowds that line the PMC route.  They tell you that the energy will just carry you and won’t even notice the miles.  But that didn’t prepare me for what I saw.  It was 5am on a Saturday morning, and they were out in droves.  In parking lots, on highway medians, Dunkin Donuts coffees in hand, cheering for us.  They blasted classic rock out their open car windows, they held hand-made signs on poster board.  Little kids ran along the road in their pjs, all screaming and cheering like we were superstars.  Here are a few fan highlights:

• The cops.  Every town, and I understand that we passed through 43, had their police out in force.  They escorted us, stopped traffic for us, and cheered us on.  Where they had motorcycles, they rode along side us blaring music to cheer us on.
• The costumes.  Including, a full-body lobster costume, a Raggedy Anne (playing an accordion…not sure why), quite a few clowns, and several Red Sox uniforms.
• The music.  There was a full-on dance party at a Llama farm (complete with disco ball). There was also a steel drum band, a bagpipes and drums ensemble (on the same street).  There were several percussion ensembles, ranging from the guy who had assembled his drumset in his driveway and handed out percussion instruments to all of his friends and neighbors, to what looked very much to be the drum line of a high school marching band.
• The water stops.  I think I pictured a table with some 5 gallon gatorade containers to refill water bottles when I thought about “water stops.”  Oh my was I wrong.  You could tell the water stop was coming because about a half mile out, you could start to hear the music.  Entire towns turned out to staff these rest stations.  Before we were even off our bikes, volunteers with trays of orange slices and granola bars were approaching us, asking what we needed.  They circulated with gallon jugs of water and ice.  They handed out ice-soaked towels, bite-sized chocolate bars, pb&j sandwiches, and even gave massages!!!  Ten minutes there, and we were charged up and ready to ride again. It was incredible.
• And then there were the signs.  The signs made this event what it was — more than just a big crazy party across the state.  The very first sign I saw in Sturbridge said “Thank you PMC riders; traveling to Dana Farber for the PD1 study.”  (Yeah, that’s the study I’m doing.)  Another woman stood alone in a parking lot with a sign that said “You ride for me” and then listed how many treatments and surgeries she’s had at Dana Farber.  Two parents sat in lawnchairs in their driveway with a sign that showed a little chemo kid, maybe four years old.  Below his picture, they had written, “Now he’s 18 and college-bound, thanks to you!”  Another sign said, “Thank you for two more years with Chip.”  The last half mile approaching a water stop was lined with huge pictures of the Pedal Partners: kids who are in treatment at Dana Farber who are adopted as inspiration by PMC teams.  There wasn’t a dry eye in the house as we pulled into that water stop.

Perhaps the thing that was most incredible about the fans, besides just the sheer number who were there, hour after hour, and at ridiculous times of the morning, was their gratitude.  They were encouraging us, of course, and we needed that (it’s amazing how much a cowbell clanging helps you pedal up a steep hill), but they were thanking us.  Over and over and over again, they thanked each one of us as we rode by.  “Thank you for riding,” “Thank you for what you’re doing.”  The police, as they waved us across intersections, said “Thank you for riding.”  The volunteers, as they filled our waterbottles, said, “Thank you for doing this.”  A lady rode on the back of a motorcycle hollering, “I’m alive because of you!  Thank you for riding!!”  They welcomed us to their towns — in some cases, they welcomed us to their neighborhoods.  They thanked us for passing through.  They stood on the Bourne Bridge at 5am, in the dark, hollering, “welcome to Cape Cod — thank you for riding!!”  It was incredible.  Just incredible.

*sniff*

Right.  So it was all very incredible.

One more incredible moment: at Mass Maritime, where we ended our first day, they gathered the Living Proof riders and volunteers.  Out of the 5,550+ riders and the 4,000+ volunteers, there were 550 cancer survivors in the mix.  Some were 20 year survivors, and some were in active treatment, but they assembled us all and (literally) handed out glasses of champagne to have a toast.  Incredible!

I had hardly crossed the starting line on Saturday, when I thought, “oh yeah, I’m doing this again.”  There’s no question.  And so many others have said they want to ride with me.  This is not the end of my PMC journey, by any means.  For that reason, I’ve decided to keep this site alive.  “Holly’s PMC” is still a thing, and still a goal I’m working toward.  But in the meantime, there’s another road to ride.  I’m aware that not everyone who started following this blog came looking for a blow-by-blow of my treatment ups and downs.  So Holly’s PMC will stay about PMC (2014??  2015??  We’ll just have to see…)  And I’d like to invite you also to visit my CaringBridge site for medical/health/life updates.

So.  Three more triumphant pictures, and one more piece of inspiration for any of you thinking about riding with me next time:

(That’s me finishing Day 1, at Mass Maritime)

(That’s me almost fainting at the fact that I had actually RIDDEN MY BIKE TO PROVINCETOWN!!!

(And THAT is me crossing the finish line in Provincetown!)

Finally, in case you’re in need of a little motivation or just a good sniffle, here you go.  There are at least four members of my team in it, including me.  These are pictures that they took at the finish on the first day.  Thank you for being a part of my extended team over these past six months or so.  Keep pedaling, and see you over at CaringBridge in the meantime!

Tomorrow (ish) We Ride

Ok, so not tomorrow.  Tomorrow, we drive to Sturbridge for the opening ceremonies.  And then the next day, WE RIDE!  Holy Cow!!!!

Today, we pack.  🙂

So, friends, some logistics, in case you’re eagerly awaiting ride updates.

• Beginning at 5:50pm tomorrow (Friday), you can watch the opening ceremonies online, if you’re so inclined.  Click Here to stream it live.  Music starts at 5:50pm; Billy Starr takes the stage at 6:50pm
• We start riding at 5:15am (yes, in the dark) on Saturday morning
• You should be able to see my progress visually on a map here: Track Me
• If you are a twitter(er), follow #PMC2013 for updates and pictures from the pack
• Google maps of our routes are available here (Day 1), and here (Day 2)…if you’re in the area, please come join the throngs of sign-holding, cow-bell-clanging, cheerleaders!!  (If you want to try and connect, message me, and we’ll exchange numbers and details.)
• I won’t bombard folks with email/blog updates, and I am not much of a twitterer, so I’ll post updates on facebook over the weekend.  You’re welcome to connect with me there, if you haven’t already.

Finally, I can’t tell you how much all of your support has meant to me over these months of training…and I’m going to need every bit of it this weekend!!  Thank you for your donations, your messages, your texts, your virtual cow-bell-clanging…everything!  Keep ’em coming!!!

good news, bad news; questions, and answers

First, the good news: I can still ride the PMC.  (Answer #1 — yay!)

Now the not-so-good news: the brentuximab did not put me into remission.  At least, not yet. (Answer #2 — boo!)

So now the questions: what next?  More brentuximab?  Something else?  There was plenty of conversation about some of the yuckier chemo regimens out there — namely, ICE and GND — but eventually, we decided that the best first step might be a Phase 1 study of an antibody treatment.  “Phase 1” is a little scary, but it doesn’t seem to have any real side effects.  And then of course, there’s the biggest question of all: will my insurance cover that?

So while we wait for insurance authorization, here’s what the plan might look like: biking, biking, biking.  Then, hopefully, a week on the beach at the end of the PMC.  THEN, a bunch of preliminary tests for this study.  If I’m accepted, which they think I will be, I’ll be shuttling back and forth to Dana Farber on a weekly basis for six weeks.  Then we’ll regroup and see where we stand.  If I’m in remission, we’ll go to transplant.  If I’m not, we’ll do the scary chemo (boooo).

But most importantly, and most immediately, two weeks from today, I’ll be pedaling my way to Provincetown, MA.  Holy moley!

Have I mentioned that my doctor has ridden the PMC for the past 11 years?  He’s phenomenal.  Here’s the funniest moment from our visit on Thursday: as he’s leaving the room, Pam says, “So, you think she’ll still be able to ride the PMC?”  I chime in and say, “It’s only two weeks away.  I could start treatment afterwards, right…?”  His face goes white.  We all, naturally, conclude the worst: “You don’t think she can do it!?”  “It’s not a good idea?!”  He shakes his head and says, “Oh, no, I’m not worried about you at all.  I’m just realizing it’s two weeks away and I’m not ready!”

So, after delivering the lousy news that I’m not in remission, and spending close to an hour formulating a new plan with us, he somehow manages to leave the room with us all laughing and saying “see you in Sturbridge!”

For the record, it’s doctors like that that make Dana Farber such an incredible place.  For the record, also, it’s things like the PMC that generate the funding that allows doctors like that to do studies like the one I will hopefully be joining.  So.  That’s why we’re riding.  If you’ve haven’t made a donation, there’s still time!  Click here to show your support of doctors like mine.

Just keep pedaling…

I am no Mark Cavendish (!!), but this commercial still rings true.

The countdown has suddenly become one of days rather than months.  In two days (on Thursday), we return to Dana Farber for a Pet Scan and hopefully to hear the word “remission.”  In two weeks and two days, we leave for Sturbridge and the start of the PMC.  With any luck, three weeks from today, we will be relaxing in Provincetown, and preparing for transplant.

Thank you all for your support!  Keep clanging those cowbells, and I’ll keep pedaling!

Click here to make a donation.

1,000 miles!!

60 miles in to a 71 mile ride, I was glad for a reason to stop and document this exciting moment.

There was some debate and bet-placing about whether the odometer would keep counting or reset.  I was hoping for it to keep going, but wasn’t optimistic.

Tada!!

 

In other news, it’s been a 100 mile weekend, friends!  71 miles yesterday, followed by 29 this morning.  Yahoo!!!  Thank goodness for Pam, the cheerleader, team car driver, water bottle filler, and general rescuer.  She put in about 50 miles of her own, riding alongside me when I needed encouragement.  Rest day tomorrow — woot!

Tour d’Inspiration

One month from today, I will be pedaling my bike into Provincetown.  How convenient that, just when I need a little boost of inspiration, the Tour de France has begun.

I watched my first tour when I was sick.  (I’ll admit: I was rooting for Lance.)  At a time when I got winded walking up the stairs, I found the Tour wildly inspirational.  Day in and day out, riders faced obstacles and overcame them.  (And by “obstacles,” I mean things like “the Alps.”)  They got dropped, found strength, and caught back up.  A hundred times a stage, little victories took my breath away: a sprint up a particularly nasty climb, a young rider breaking away, a sign on the roadside, the peloton dropping back to allow a rider to lead through his own hometown.  It was watching the Tour that first prompted me to get out my old hand-me-down Schwinn and go for a ride.  And today, it was the Tour that inspired me to ramp up the training and commit to buckle down for a month.

If Geraint Thomas can continue riding with a fractured pelvis, and Ted King with a separated shoulder, surely, I can do the PMC with what I’ve got going on.  (Just to recap for you non-Tour-watchers, Ted King, the rider from Exeter, NH, took a dive over three crashed riders and separated his shoulder on Day 1.  Two days later, his team rode in a time trial.  Unable to put pressure of his shoulder, Ted King rode on his regular road bike, rather than his spiffy super-aerodynamic time trial bike.  And he almost pulled it off.  He finished within 7 seconds of the required time.  !!!!  Oh, and the guy who won yesterday, Mark Cavendish, started the Tour with bronchitis!  What?!  These stories make “I’m tired” sound PRETTY LAME!)

Here’s the quick health update: I had my third chemo treatment a week ago today.  Nothing else is scheduled until July 18, when we go to Dana Farber for another Pet Scan and hopefully hear that I’m in remission.  If that’s the case, the transplant process starts.  But that means a clear field to the PMC!!!  Ride first, figure out the details later.

Last weekend, we joined a bunch of other riders and friends at Fenway Park for PMC Night.  One of the highlights was seeing the “Living Proof” riders ride around the field before the first pitch.

Maybe that will be me one day!

We got snazzy Boston hats and a few strangers even made donations to our team fundraising.

Is that a Yankee in that Boston hat??

Looking ahead, this week I should log my 1,000th mile of training.  Woot!

Oh, and I’m getting incredibly close to my fundraising goal.  Just about $1,500 to go, friends!  30 training days; $1,500.  We can do that, right?!  That’s $50 a day.  Thanks to those who have already donated.  Click here if you’re ready to join that fantastic club.

Team Holly!

A few weeks ago, I threw out a few suggestions of ways folks could help us.  LOTS of you responded.  You joined marrow donor registries, and you made contributions to my ride.  And this beautiful bunch traveled from far and wide to ride with me in Newburyport, MA.  Here we are at the finish:

That’s one awesome team!  They came from Maine, Massachusetts, New York, and New Jersey.  They rented cars, borrowed bikes, and stayed in hotels.  They braved the traffic, the unknown course, and an impending nor’easter.  And we had a fantastic day!  To my teammates who rode with me, THANK YOU!  To those of you who cheered us on, gave us hugs, and supported us from afar, THANK YOU!  Keep on pedaling!

So the PMC is 7 weeks away.  Time to buckle down and start putting in the miles.  50 mile ride last weekend means a 60 mile ride this weekend.  Wooo hooo!

 

The Unknown Donor

Sometime in the past couple of weeks, a 51 year-old man got a phone call.  The caller told him that he was a full match for a patient in need of a bone marrow transplant.

Me.

I don’t know what it felt like to receive his phone call.  Maybe he signed up for the registry so long ago that he had forgotten about it.  Maybe he had signed up hoping to be a match for someone close to him.  Maybe he was excited to hear he was someone’s match.  Maybe not.

I do know what it was like to receive the call I got.

“They found a fully matched donor for you, Holly.”

…

Let’s just say it was a good thing we had pulled over before answering that phone call.

I started chemo four weeks ago.  In those four weeks, I’ve ridden some 218 miles.  Since we started this journey, you have contributed close to $3,000.  I’ve been motivated by gratitude, spurred on by outrage, and gritted my teeth against discouragement.  We’ve gotten great news, and we’ve gotten terrible news.  And there have been a lot of times when I have struggled to.  Just.  Keep.  Pedaling.

Now I find myself with another reason to pedal.  I will do my donor proud.  Whoever he is, he knows little about me.  But in a year, if he wants, he’ll be allowed to find out whose life he saved.  And when he does, I’d like him to be proud.  We’ll ride, and we’ll raise money — $20 contribution by $20 contribution — and we’ll make a difference in the fight against cancer.  Not just for me.  Will you help me?

A True Story

Two Saturdays ago, I went on a bike ride.  Here’s how it went.  (Chaplains, feel free to make meaning.)

I left my house feeling confident and in sync with the world.

By the end of mile 2, I was seriously doubting my ability to ride at all.  Maybe I had overestimated my strength.  Maybe I actually have cancer, after all, and I’m actually kind of weak.  That kind of ticked me off.

Miles 3-11 were pretty awesome.  I was flying along.  I got my mojo back, and I was feeling strong and confident.  The sun was warm, the bike lane was wide.

Mile 12 began with a beautiful single-lane bridge over a creek.  It was so beautiful that I almost stopped to take a picture.  It was so beautiful that it completely distracted me from what the road did next.  And what the road did next was go up a mountain.  The sign warned of an “S” curve.  That was kind of an understatement.  At the very least, it should be called a “Z” curve.  I actually doubted whether the laws of physics made it possible for anyone, let alone me, to ride a bicycle up such a hill.  Several people in cars (which were groaning down the hill in first gear to keep from losing control) pointed and laughed.

At mile 20, I turned onto Hope Road.  Hope Road went up over Mount Freedom.  I am not making these names up.

Mile 30-35 took me along…(wait for it)…Shades of Death Road.  Seriously.

At mile 30, I had a serious crisis of confidence.  Finally, I called home.  “Convince me I can do this,” I said.  I was not 100% convinced, but I kept pedaling.  Shades of Death Road is not particularly steep.  “Rolling” is probably the appropriate term.  However, had I been going any slower, at that point, I would have been “rolling” backwards.  Shades of Death Road is also gorgeous.  It winds along past dairy farms and horse farms, and green hills that don’t look at all like they belong in New Jersey.

When I arrived at mile 42, I realized I wasn’t going to make it.  Miles 42-44, it turns out, were on a highway.  A highway that was a) under construction, and b) didn’t have a shoulder.  Not good biking conditions.  So I called my lifeline and got a ride down to to the restaurant I was supposed to be headed for.

In the end, I wasn’t feeling super proud of that ride.  Sure, it was hilly.  But I was riding slow.  And I kind of quit without finishing.  And it’s still only a small portion of what I need to be able to do in two months.

And that’s pretty much what’s been going on these past couple of weeks.  It’s been hilly.  There have been times where if I were going any slower, I’d be going backwards.  Sometimes I’ve been flying, feeling good.  Other times…well, it hasn’t been pretty.  But there we are.  One chemo down.  Two more to go.  PMC, here we come!

(If this post has made you want to go for a bike ride — haha — I have an invitation for you!  Come ride with us on June 15!  Click here for more info.)

 

 

 

The Things We Don’t Know

Since my last post, we have learned some things.  We learned some hard life lessons about waiting and patience.  We learned some functional Spanish while spending a week relaxing on the beach in Tulum.  And we also learned that after ten years of hiding, my Hodgkins has returned.

Over the past ten years, medicine has learned an awful lot about the treatment of Hodgkins lymphoma.  We’ve learned to bond chemotherapy agents with antibodies so that the chemo can be targeted directly to the cancer cells without killing everything in its path.  We’ve learned more about how to manage nausea and other side effects.  We’ve even learned how to make pet scans more comfortable by adding specially shaped pillows and providing warm blankets.

But there’s an awful lot we still don’t know.

For instance

Where has the cancer been hiding for the past 10 years?!

Why didn’t the scans pick it up?! 

Why does this new snazzy chemo drug (the one with the antibody) put the cancer into remission but not keep it there?

Why, if you give someone a whole new immune system – using donor stem cells – does it only cure the cancer 40% of the time?!

And on and on and on.

But here we are, with loads of unanswerable questions.  But here is one question that has answers: what can I do?  So many of you have kindly asked how you can help.  And in all honesty, here are three very real options:

1. Put yourself in the registry to become a marrow donor.  I, like many others, will be hoping for a good match from among the 8 million people who have already signed up.  The more people who are listed, the better the chances are of finding a match.  Getting tested is easy and it’s free if you’re between the ages of 18 and 44.  You just go to www.marrow.org, and they will mail you a kit.  You do a little cheek swab and mail it back.  That’s it.
2. Ride with me.  On June 15, my PMC Team (the Riverside Rockets) will be hosting a ride along the Merrimack River in Massachusetts.  There are 25 and 50 mile routes.  There are even loaner bikes available.  I’ll be there.  And I would love, LOVE, LOVE to have your company along for the ride.  You can register and see the details here.
3. Donate.  Until I hear otherwise, I’m planning to ride all 192 miles of the Pan Mass Challenge.  So, incidentally, is my oncologist at Dana Farber.  Every dollar raised goes directly to support the research at Dana Farber — where hopefully they will answer some of those questions above and where I will get my next round of treatment.  This was personal before.  Now it’s sort of insanely, desperately personal.  Click here to make a donation.

Thank you to all who have sent well wishes and already contributed.  I am grateful for your support.  Please feel free to send others to this page.  Follow the blog, follow my progress.  Cheer us on.  Thanks.