The Boston Marathon 2017

Four years ago today I ran my third Boston Marathon and was blessed to be able to finish.

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I qualified again and ran Boston in 2014 and in 2016 and was supposed to be running it for the sixth time this year.  Instead, this Monday I will be in my surgeon’s office for my follow-up appointment and hope to find out more about what is to come for me and my treatment plan.

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I’ve been thinking all week about so many of my friends and teammates from the Jersey Girls StayStrong Multisport Club, my Coeur Sports Team and my other fellow Newton Running Team members.  And truth be told, right now I’m feeling a little sorry for myself.  But, I will be thinking of each one of you on Monday and wishing that I was out there running with you.  If it’s your first, or your fifth or your twentieth — soak in each and every moment of it.  I love the excitement of Boylston Street in the days leading up to the race.  I love the energy at the race expo and number pickup and seeing friends from all over the world.  I love everything involved in Marathon Monday . . . . . getting to the start, hanging out in the athlete village waiting for my wave to line up, and running every step of the way.  Especially after the bombing in 2013 I made sure to look in the faces of the spectators who still come out and cheer for us, whether we were in the first wave or the last wave.  I love the signs and the families, the kids, the senior citizens, the college students and the music.  I even love the pain of the hills, and actually look forward to Heartbreak Hill.  Because it meant the hard part was behind me and I could look forward to the firehouse where my husband always watched for me at the window, and then the turn onto Boylston Street and that stretch to the finish line.

I wish each and every one of you the best day you can have.  I have one small favor to ask if you are running — when it gets hard, run just a little bit of it for me and I’ll do my best to get you to the finish!  902005_10152760851595521_1103218482_o

 

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Surgery is Behind Me and Other Good News

The really good news came on Thursday morning — my genetic testing came back negative!  This was something that was building inside me each day since the test.  I was convinced the test would come back positive and I would have to make some hard decisions on surgery which would be much more serious than the planned lumpectomy and also involve a much longer recovery process.  My mother died of breast cancer in 1977, she battled for 10 years and was 53 when she died.  Horrific traffic on Thursday morning made it likely that I was going to be late for my first appointment of the day with my genetic counselor so I called her.  When she said “don’t worry about it — our appointment won’t be very long” I felt like a huge weight was lifted off of me.  We changed that appointment to later this week to discuss further but I don’t have any of the genes and that means neither does my daughter.

The rest of the day’s appointments — all part of my “new normal” — included a lot of mammography pics and needle pokes and even a card to show security if I get stopped at a bridge or tunnel or airport — seems I was radioactive for a few days. IMG_3049
With the genetic issue taken off the table and seeing so many children’s beds and stretchers in the halls really made what I’m going through feel way less overwhelming.  One of my nurses recognized me and we went on to discuss triathlon, she’s done quite a few triathlons herself.

Friday morning arrived all too quickly.  I carefully drank the 12 ounces of liquid I was allowed which meant one glass of water and one small cup of coffee.  Off to the MSK Josie Robertson Surgery Center for my 8:45 AM scheduled arrival time. (I’m not dyslexic but I keep seeing this as “JSRC”).  This almost felt like checking into a hotel — beautiful facility and extremely gracious staff.  My pre-op room was on the corner with huge windows overlooking the East River and the 59th Street Bridge.  Brought back so many good memories of being part of the SEA Paddle around Manhattan on my stand-up paddle board and running over that bridge many times in the NYC Marathon.    I mentioned something about the SEA Paddle to my nurses and suggested they should check the date for this year and watch for the paddlers go by.  Seemed one of the nurses had seen it from her apartment and was familiar with the event.  Well, one thing led to another and it turned out they both hope to do a triathlon one day.  I introduced them to the Women for Tri Facebook group and we had a great time talking about how to get ready to get to that start line.  All of this meant the time passed very quickly and it was time for me to walk to the operating room.

Wow, it seemed to me there must be several people who would be getting operated on in that room — it was huge!  So many people and machines.  Only one place for someone to lay down though.  I was greeted so warmly by my surgeon, Dr. Mahmoud El-Tamir.  He asked how I felt and when I said I was relieved after the genetic testing results he said he was never worried about them.  I hope he’s right about everything.  I remember sitting down, being told I was getting something to help me relax and the next thing I remember is waking up in the recovery room.  IMG_3060

I was told that I could “resume normal activity” in 24 hours, among my other discharge instructions.  That really made me laugh and I tried to explain what my previous “normal” activity was.  She modified that with “use your judgment and don’t push”.  I specifically asked about swimming and she said yes.

My surgery started at 10:15 AM, by 12:35 I was starting to be discharged and we were in the car driving home at 1:15 PM the same day.

Saturday was spent mostly at home relaxing and catching up with some friends and family.  I took a very short and slow swim on Sunday but decided against swimming today.  I got a call from my surgeon’s office this morning.  She asked if I was doing my exercises and I said that I had taken a short swim yesterday and she stopped me and said absolutely no swimming till after my April 17 follow-up appointment with my surgeon.  My prescribed exercise routine includes deep breathing, shoulder shrugs and reaching my arms straight up.  I’ve done them a couple of times today with no problem.   In addition to some easy spinning on the stationary bike and some walking on the treadmill.

Among the best advice I’ve gotten is from my friend, Kyrsten.  Make myself a training plan for my recovery.  Work less.  Sleep more.  Really focus on my eating.  Deep breathing, shoulder shrugs and arm reaches.  And bide my time till my April 17th appointment with my surgeon and then my April 27 appointment with my oncologist.  She is a specialist in the wild card of the “triple negative” part of my diagnosis.  I’m trying not to read too much online about treatment before my appointment with Dr. Tiffany Traina.  It’s her specialty and I can’t imagine I’m going to find out more than she can tell me by searching online.    And all these things are hard to accept as part of my vocabulary.  Part of the “new normal”.

I feel like this is a very boring post but I wanted to bring anyone who’s interested up to date with what’s going on.    Let’s get from here to April 17 with as much good energy and healing as I can muster.

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Reality Hits. Hard

So, as any of you who are friends with me on Facebook or Instagram know, this has been an amazing week of vacation for my family and me in the US and British Virgin Islands.  And I’m sure many of you have also figured out it has allowed me to have a certain amount of detachment from my diagnosis and what lies ahead.  This all couldn’t be as serious as the little bit of reading I’ve done online, could it?  I still feel great, I can hike. I can run, I can swim.  I can even save 78 year old Dottie from Southampton, who cramped and couldn’t handle the wind on her standup paddleboard.   I pushed her and her board for a good 500 yards, an unplanned anaerobic addition to my second swim of the day. She was grateful and lovely, and I was happy to help. So really, how bad could this be? A mistake maybe?

I had my Team Coeur kit for 2017 with me and thought about wearing it, but felt that my “Heart and Courage” kit was appropriate for my last run before starting the attack on the unwelcome parasite who’s inhabiting space in my body. 


Well, lets fast forward through the rest of the day and get to the airport the next afternoon. Our flight is delayed, we are sitting at a very crowded bar having a drink that I shouldn’t be having. My phone rings, I look and recognize the Memorial Sloan Kettering exchange so I answer. It’s a doctor who asks if I’d be part of a study of women with triple negative breast cancer. He begins to explain the difficulties in treating triple negative and how this will all be part of my pre surgical and surgical procedure. And I cut off the conversation and ask that he email me the information because I just can’t process it. And all of a sudden it hits me hard, in the middle of this crowded airport in the tropics, that I have cancer. And I have tests scheduled for tomorrow. And a surgery scheduled for Friday. And one way or the other, the course of my life has changed. And the course of treatment is going to suck. And even my surgery could become much more radical than planned at this moment. 

How do I feel about possibly needing a double mastectomy? How do I feel about losing my hair? How do I feel about chemotheapy, filling my body with poison? Radiation? All I know about radiation is my mother had burns on her back from radiation. I know I don’t want to leave my husband, or my daughter, or the grandchildren I hope to have one day. I don’t have any answers, or any control over what’s to come.  

But, just like Scarlet O’Hara, who I’ve identified with my whole life . . . tomorrow’s another day. And I just said to my husband, maybe I can set my sites on doing the Atlantic City Triathlon?  Even if I’m dead last in the sprint, it’s a start on the road back. I’m hoping DelMo can find room for a last minute entry?  I just need to get through what’s ahead.

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Checking In

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Our family vacation to St. John was scheduled randomly and quite a few months ago.  I am now even more certain that there really are no coincidences.  This trip couldn’t have come at a better time.

There is so much that I am learning and understanding and accepting about my family.  First off — my daughter Mary.  She has stepped up and taken charge of so much on this trip.  I’m so proud when I look at her and see the beautiful woman she has become.  And, grateful for the meals and such that she has put together for us.  She’s done an outstanding job and I’m gratefully taking second chair.

Next up, my son-in-law Ryan.  I’m used to being the one in charge.  Doing the research  Deciding on the next day’s adventure.  I’m grateful to pass the mantle to him.  He has made this an amazing trip.  He’s handled the logistics and the research and the driving and so much more.  Each day has been better than the last.  And once again I’m happy to take the back seat.

And my husband Bryan . . . . . what can I possibly say.  I look around each day and say thank you to him for the life we have.  Those of you who have known us for a long time will appreciate this the most — we are more blessed than I can possibly put in words.

I can’t say that I have ever “forgotten” what lies ahead but hours go by here that allow me to enjoy just living in the moment and soaking in the beauty around us.  Reality will be here soon.

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Saturday Happenings and Random Thoughts

Swam my last Saturday morning masters for a while.  I’ll be back as soon as I can, but I know it’s going to be a long road back, especially getting to the pace and lane I’ve been swimming in.  I’ve worked really hard to get to where I am, I’m going to have to work twice as hard to get back.

Next up was a short outside ride, it will be a while before I’m doing any outside rides again.  And I was reminded why the surgeon said I should stay away from road riding or even running outdoors for a while.  While turning around on a cul de sac I was literally tackled from behind by a loose dog that I didn’t even see was loose.  Well, he wasn’t loose when we passed him, he was being held by his owner.  The dog wasn’t struggling to get away or barking or anything that would have given me an idea I should be worried.  Next thing I knew, a hard strike to the back wheel and down I went, in what felt like slow motion.  That happened at the same time I heard my friend Ben saying something about stopping for a dog.  He watched it all from behind.  I only landed on my knee.  No damage to my bike or my new Coeur Sports bib shorts thankfully!  It is the first time I wore them.  PS — I absolutely love them.  Very comfy, not too bulky of a chamois and the side zip on the leg is a bonus for sure.

Some other very random reasons why everything is going to be okay and a few other somewhat illogical thoughts.

  1.  I finally have Enve race wheels.  I’ve ridden them just a few times in training.  I still need to use them in a race.
  2. I just got my Global Entry Number, it cost $100 and is good for five years.  I need to use it.
  3. I have an awful lot of nice clothes, both workout and “regular” that I need to wear more.
  4. I already paid in full for my premium share of vegetables for the upcoming season from Honeybrook Organic Farms.  I need to be able to cook and eat them.
  5. I almost bought a really cute new bathing suit this week for our vacation.  I tried it on and realized that I may want to wait till after my surgery.  Not that I’m worried about showing a scar.   I just probably won’t want to be exposing it to the sun, at least this year.
  6. I’m still fretting over first world problems.  I’m worried that I won’t be able to go to my gym since I’ll be at a high risk for infection.  Someone else I know with cancer is worried because if he can’t work it will be a struggle to support his family.
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It’s a Good Thing I’m Good at “GSD”

I’m on a couple of sub-committees as part of the Women for Tri Board, we often refer to “GSD”.  (Get shit done!)  Well, it’s a good thing I’m good at it because yesterday’s 4:00 PM phone call from Memorial Sloan Kettering (from now on referred to as MSK)  to set up my genetic counseling appointment certainly took some quick action on my part to make it happen and get results before my surgery.  I have a pretty booked schedule between now and leaving for St. John’s and then my surgery, and I didn’t factor in another trip to NYC.
MSK:  “We are calling you to set up your appointment to discuss your genetic testing”
Me:  “Okay, can you do it when I come into NYC on April 6 for my pre-op stuff?”
MSK:  “Sure, but it takes about two weeks to get the results.”
Me:  “Okay, so let’s schedule it for April 6.”
And I continued with my pre-prom pedicure appointment with my niece.

But, then I started thinking about.  And made a quick phone call back to MSK.
Me:  “So, if I wait to do the testing until the day before my surgery I won’t have the opportunity to make a decision about what type of surgery I have.  And if it comes back that I have the “gene” and would then decide to get a double mastectomy it would mean a second surgery.”
MSK:  “Yes.”
Me:  “Okay, can I come in tomorrow?”
MSK:  “Yes.”
So there you go, everything else I had planned for today out the window.

Got home last night and found an awesome hoodie and note on my front porch.  I followed Daphne’s journey and rejoiced in her remission.  She was diagnosed at 12 years old with Hodgkin’s Lymphoma Stage 2 A.   Treated at CHOP, chemo and radiation @ U PENN. In remission since November of 2016.  She’s now in high school.  If she did it I can do this too!

One priority I’m not letting go of is my morning workouts.  My friend Ben is still training for IRONMAN Lake Placid so we met at 7 AM for his 2,500 yard swim workout.  I still don’t swim like someone with cancer.  That day will come soon enough

I will keep the long version of the genetic counseling and testing to myself for the moment but it’s something I’m glad I’m able to do, not just for myself but for my daughter and my nieces and their future health  I didn’t really have many questions until I have results.  I did leave with information to read and some resources other than “Dr. Google”.

My laugh out loud moment for today is courtesy of my long time friend and my coach for many years, Brian Shea:  “I heard some news today about this friend of mine w/ a little fight on her hands.  So I say… ‘anyone who’s spent a night in the SkyTop  Lodge, can beat pretty much anything’ 😜”

 

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We Have a Plan

Okay, there is the start of a schedule.  I guess it’s going to take the place of my training plan for now.  I worked out this morning, made sure to swim and run since I didn’t know what today would bring and if either of those two things would be restricted (they aren’t, for now).  I thought a few times while I was swimming this morning that I don’t feel like someone with cancer.  I don’t swim or run like someone with cancer.  But, guess what?  I have cancer.  And that hit me hard.  Especially when we entered the building with this sign outside.

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Okay so first off what a beautiful facility and what kind and caring employees but really?  There are really this many people in the NYC vicinity with cancer????  Wow.  So — paperwork, forms, signatures, insurance cards, photo ID, etc.  Finally, in a room with a nurse, then a doctor.  For the first time, I met Dr. Mohamed El-Tamer. He has come highly recommended from two friends who have undergone extensive breast cancer issues.  Right now the conversation, examination, etc. are all a bit of a blur but here’s the bottom line.  It’s still cancer.  It’s still invasive ductal carcinoma.  It’s stage one, that’s new news.  Although they still need to perform an injection of dye before surgery he is pretty confident there is no node involvement.  I will need both chemotherapy and radiation after.  I will lose my hair.  Crap, I like my hair!  He said it will grow back better.  I wonder if it will still be grey, I mean blonde?
So here’s the new schedule:  Monday, March 27 is pre-op testing at the Sloan Kettering satellite facility in Middletown NJ.  Family vacation in St. John’s from March 28 until April 5th.  Dr El-Tamer said that it is absolutely fine!  April 6th, pre-op prep in NYC.  April 7th, lumpectomy.  April 17, post op follow up.  April 27, consult with oncologists.  3 to 4 months of chemotherapy and radiology to follow.  Twice a week.  When I explained my plans for the season the surgeon looked at me very calmly and said: “not this year”.  My response?   “These weren’t my firsts and they won’t be my last”.

According to the doctor, I will have very few limitations from surgery.  Especially about working out.  I have a feeling that the chemo may not be so forgiving but, we shall see.  I gotta take this one day at a time.

Some questions answered.  About 25% of women with breast cancer have this type of cancer.  After 5 years if it doesn’t come back I’m good. Five years is a long time.  They will do genomic testing since my mother died from breast cancer.

Every message I’ve received over the last week and especially today has meant so much to me.  Really.  A few comments made me laugh out loud.  A few made me smile about good memories.  And quite a few made me tear up.   I love my family, I love my friends.  I love and count on my Jersey Girls and my Coeur team.   You guys really are the best!    This truly sucks.  But, for some reason, I still feel like I’m blessed.

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