There Are Easier Ways To Get Out Of Doing An Ironman 

My phone rang this morning while I was having my coffee, I didn’t recognize the number but it was a Tampa exchange so I answered it.  Andrew Messick greeted me with “You know there are easier ways to get out of doing an Ironman!”  He is right of course. But, I’d so much rather have done the Boston Marathon or still be training for Eagleman and Lake Placid in July.   

I was really struggling earlier in the week. I have had more tests in the past few weeks than I have had in my entire life. The really hard part is each one shows everything is totally within the normal range of results.  Blood, lungs, heart –  all on the good to high end of normal.  This past Tuesday I had to sit in a chair and have an IV needle inserted into my arm and sit there for over an hour while poison was pumped into my body.  I was dreading it more than anything but also wanted to just get it started so I’d be that much closer to the finish line.  

Well, Tuesday afternoon came.  I am still in awe of the entire Memorial Sloan Kettering operation.  And even more in awe of the friends and family I am blessed to have.  My husband Bryan was with me.  Shortly after I was settled into my “chemo suite” my long time friend from masters swim, Kevin, showed up.  We had some laughs and more  and it kept both my husband and me from focusing on what was happing.  Before I knew it I was done and on my way home.  

Next up is the medicine I need to take, and the vitamins and supplements I can take in the hopes of keeping my system healthy and strong.  I’ve written out my “treatment plan” and I’m treating it like a training plan, as suggested by another dear friend, Kyrsten.  I don’t want anything to set this trains off the track it’s on.  

We are now a little over three days post-chemo and two days post-Neulasta injection.  I’m still holding my breathe a bit waiting for side effects but I haven’t had anything.  Yet. A bit of fatigue, a few headaches.  Neither are my norm.  And while I’d love to think this is the way things will stay this way after each treatment, I realize it’s unlikely.  

I’ve been told that my immune system is seriously compromised so I made the decision that hugs and kisses will have to wait for a while.  I hope everyone understands why and isn’t offended.   

I wonder if I can return as the competitive (old) athlete I’ve been ?  I wonder if I can qualify for Boston again?  What about qualifying for Kona again?  First and foremost is the need to come out on top in the day to day dealings with my disease. 

Round one done, seven more to go.  Six weeks post-surgery.  My new mantra, courtesy of Sister Madonna Buder:  

          “Let me do my best, and You do the rest.”  

Taking Advice

A long-time friend was also diagnosed with breast cancer just a short time before me.  Linda is currently undergoing radiation treatments half way around the world in New Zealand. We’ve been communicating online about our experiences, feelings, treatment regimen and the like. This weekend she shared some realizations that have helped her. It was one of those “aha” moments for me.

“. . . . I was PO’ed because this cancer situation altered what I was doing in my life as well as what I ‘wanted’ to be doing . . . .  I needed to look closer at my current surroundings and note others had it far worse than I did. But my BIGGEST problem is/was . . . .  I cannot stand it when someone or something gets in my way of what “I” want to do and cancer was standing right in my way of life….. and there was nothing I could do except alter my norm. . . . “

So, there you go.  Those of you who know me understand how hard it is to accept this new norm on a daily basis.   I do accept it in the big picture but it doesn’t stop me from struggling and wrestling with the day to day details.   Despite some minor discomfort at times I still feel and look 100% heathy. I have had lots and lots of bloodwork done in addition to an echocardiogram, all results are great.  It is reassuring to know I’m starting from the best possible place as far as my condition goes. It is unsettling to know that the assault on my body to get rid of this cancer for good starts tomorrow.  IMG_3084

 

It Takes Strength To Do What You Love

A friend sent me a red flower from Fellow Flowers.   I love what the card that came with it says.

“/red/::
Love.  Warrior spirit, determined heart.  Caring for the world around me.  A passion unrelenting.  Ready for the challenge, unshakeable in my commitment.  Grit; earned through effort . . . because I said I would.  Take me to my limit and watch me work.  Bringing it – every damn day.
It takes strength to do what you love.”

There has been an awful lot of emotional turmoil for me today as I face the reality of chemotherapy starting this Tuesday.   I’ve read the card a couple of times since I got it yesterday.

What do I love?  I love life.  So, a big thank you to Erin for reminding me of the obvious.  My strength will be focused on doing what I need to do to make sure I keep living.

IMG_3255

 

Some Tough Days

So, as I write this down I’m reminded that my problems are still “first world” problems.  But, they are my issues and on Monday I was close to tears quite a few times.  I woke up and got dressed to go the pool to meet my friend to swim.  He’s training for IRONMAN Lake Placid.  I had thought we’d be training together but unfortunately, that isn’t happening.  I was happy to be back in the pool as of April 18 and not much slower than my previous pace.  Working out has made me feel good physically and mentally.  And it gives me some moments of normalcy in the midst of all this madness.  When I was changing I noticed blood on my pajamas under the arm.  It looked like it came from the incision where the lymph node had been removed.  I kind of blocked it out and continued to the pool.  I saw a nurse friend in the locker room, she didn’t know what was going on so I filled her in.  I told her what I saw this morning and asked if she’d take a look.  She said, “I’m not your surgeon’s nurse but there is a small hole there, I wouldn’t go swimming if I was you.”  So, waist deep only in the hot tub and then the steam room for a bit while I watched Ben swim.    I had an appointment today with the radiation oncologists so I asked her about it and also sent a picture to my surgeon’s office.  Nothing serious but stay out of the pool for 3 to 5 days.   It’s now Wednesday — I know it’s not the end of the world but, I still feel like crying.  Last week was the start of getting a plan in place for my continued treatment.  One thing that has become very evident is an entirely new language I’ve learned since this all started at the beginning of March.  Who knew how many different types of breast cancer there are, how many different stages and grades, or what triple negative means?  Learned another new one — adjuvant.  This was thrown out there in connection investigating whether I should have chemotherapy administered into a vein or by a port.  I could happily have spent the rest of my life never knowing what any of this meant.

So, let’s go back to last week and my appointment with my chemotherapy oncologist.  Dr. Tiffany Traina is a doctor who came highly recommended from two friends and everything I read about her impressed me.  In person, she was just as impressive.  One thing I’ve been struck by about everyone I’ve dealt with at Sloan, especially the doctors, is that they seem to be so genuinely kind.  To make a very long story short, she explained the treatment plan to me which came down to the following:  A total of 8 rounds of chemotherapy (for those of you who know about this stuff — the regimen consists of “ACT”).  The first four treatments will be the “AC” portion and the last four treatments are the “T” portion.  These treatments will happen every other week, followed by a Neulasta shot the day after each chemo treatment.  The Neulasta will be sent to me at home and I will inject myself.  Fortunately, we have specific chemotherapy and injectible prescription coverage since Bryan is retired FDNY.  Two injections cost $11,000!  I need to meet my deductible of $100 and then our coverage for these types of drugs is unlimited.  Treatment #1, 3, 5 and 7 are scheduled locally at the MSK facility in Middletown and about 20 minutes from my house.  Treatment #2, 4, 6 and 8 will be at MSK in NYC.  This will give Dr. Traina a chance to discuss how I react to the first treatment and ease the stress and expense of commuting into NYC somewhat without compromising my treatment.  The seriousness of all this creeps in just a bit more each day.  After our appointment, I was sent to the lab for some blood work.  They took 8 tubes of blood for testing.  This will mean they can monitor changes in my blood as a result of my chemotherapy.  I was scheduled for more appointments on Tuesday (yesterday):  I got an echocardiogram so they can monitor potential damage to my heart and lungs as a result of the chemotherapy.  As this was being discussed I remembered the stress test I had no long ago — Dr. Shah kept saying my heart was “perfect” and an example he would use for other patients of the advantages of exercise to keep your heart healthy and young.  I know starting from where I am at is good but do I really have to risk heart damage to get healthy?  I’m not even going to discuss all the other possible side effects.  Each drug I will be getting comes along with several pages of information that spell out all the risks, side effects and more.  This is a rhetorical question, of course.   I do understand that I do have to do this.  A healthy heart won’t do me much good if I have cancer.

The first four treatments are on the calendar.  Tuesday, May 9th is the beginning of a whole new type of training plan.  If all goes as planned treatment # 8 will be on August 15th.  What do I have to do?  Make sure I stay as healthy as possible throughout all this so there is no need to change any of these appointments.   I know that I am mentally and physically strong and healthy enough for this, I just hope that I am lucky enough to keep this train on the tracks.

So, as if all of this wasn’t enough I met with my radiation oncologist on May 1st.  Dr. Beryl McCormick also brings with her amazing knowledge and experience in her field.  I felt good when I saw her biography information included mention that her newest research will explore whether breast radiation after surgery has an impact on patients’ tolerance for exercise.  Well, if the chemotherapy information wasn’t frightening enough this took it all to another level.  Potential damage to my heart, my lungs, the muscles surrounding where the radiation is targeted (my entire right breast first, then the specific area where the tumor was removed) is associated with these treatments.  The protocol here will be 20 treatments over a 4 week period.  Every day, Monday thru Friday.  This will start about 4 weeks after chemotherapy ends, so according to the calendar, that would mean starting the week of September 11th.  The irony of that is not lost on me.

I am blessed to have so much emotional support.  Flowers, cards, thoughtful gifts and more arrive on an almost daily basis.  Some of my friends surprised me with these bracelets.  They have sent out many to friends all over the world andIMG_3083 they’ve also given me a bunch to share.  If you’d
like one please just let me know.  I really do feel an amazing sense of comfort and strength and love each time someone posts a picture or shares with me in person.

There is lots more to add — I spent an amazing day at Mary’s Place by the Sea last week and have another scheduled for tomorrow.  All I can say at the moment is if you or any other woman you know has or had cancer, check out the resources available.  I’ll share more about them another time.

I also met with my chemotherapy nurse yesterday.  But I just can’t share any more of this information at the moment.  I have a list of stuff I need to get — over the counter medications, new toothbrushes, and some other dental products, etc. for possible side effects.  Also birthday cards and the like.  Somehow or other “normal” life continues also.

 

Follow Up With My Surgeon

I got pretty much the best I could hope to hear last Friday in my follow-up appointment. Screen Shot 2017-04-23 at 6.49.48 PMI did ask Bryan if he thought there was any chance that Dr. El-Tamer would tell me this was all a big mistake and there was actually nothing wrong with me. Bryan said not a chance in hell. Mass was 1 cm and my surgeon said he got clean margins. Very minimal (a trace he said) in one node which he removed, but that makes it stage 2. That’s the good news.  It is small and only present in one lymph node.

The bad news is it is high grade and necrotic. This means it is growing fast. As explained to me, the best course is to treat this with chemotherapy. Since it is growing fast it tends to respond better. If the tumor was limited to the breast, and not aggressive or invasive just radiation after surgery would have been proposed.

So . . . how do I feel?  Except for the ugly scars, I still don’t feel like someone with cancer.

I am healing well but a slight allergic reaction to the stitches. That should be fine. I can swim and I can bike outside but I can’t run for about two more months. No bouncing activities because of the surgery. I can do pretty much anything else except lay on my stomach. I meet with the chemotherapy oncologist on Thursday, April 27 and the radiation oncologist on Monday, May 1st.

My feelings — this Thursday is when the shit hits the fan — a treatment plan will be reassuring on one hand but scary on the other.  And it means this is all real.

Here’s what I woke up to this morning.  Thank you Erin, you made me cry.  But it in a good way!

“Today, I race the first of many races for my friend, Moira Easton Horan, since she is busy beating cancer! The red flower represents strength, and she is one of the strongest women I know! Your flower is coming, Moira! I picked it up yesterday 🙂
#teamcoeur2017 #hardcoeur #cancersucks
— with Moira Easton Horan.”

18056784_10158424502470562_8269904394835679698_n

 

Thank you all so much, please keep the thoughts and prayers coming 💕💕

 

 

The Boston Marathon 2017

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

Screen Shot 2017-04-15 at 12.00.58 PM

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.

62867_10151344666277091_1617088245_n

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

 

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.

IMG_3059

 

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.

Checking In

DCIM104GOPRO
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.

DCIM104GOPRO

 

 

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.