Month: May 2017

I caught sight of my shadow on Friday while walking Brody.  And I saw the shadow of a balding man with a bad combover trying to hide what was going on.  And I saw the wind taking chunks of my hair and sending it flying everywhere.  I went home and made another call to Christine at Depascal, it’s time to buzz the rest of my head.  Not totally bald yet, we left just a bit of stubble — sort of a Sinead O’Connor look.  I’ve found this step actually feels good.  It’s over and done, my hair is gone and I don’t have to wonder will it happen, when will it happen, how will I look?  I like it, and that’s a good thing because it’s going to be a while before I have hair again.

The big happening for this weekend was the Spring Lake 5 on Saturday, a hallmark of the start of summer here at the Jersey Shore.  For those of you not from this area — the Spring Lake Five is a 5-mile run held on the Saturday of Memorial Day weekend in the town of Spring Lake, New Jersey.  It brings over 12,000 runners to this shore town with about 3,000 residents.  Spring Lake is only about 2 square miles so it’s really quite an event for the town.  I’ve been running it since the early 90s and it wasn’t until Saturday morning that I remembered what an important place this race has in my running and triathlon history.

I was a swimmer from an early age, and continued to swim through high school.  Well, until some of the parents on the team decided I wasn’t a good influence and I was kicked off the team.  It was twenty years before I started swimming again.  I certainly wasn’t a runner — I thought it was actually a pretty dumb thing to do.  Somewhere along the way I started smoking and would smoke up to two packs a day.  I did finally quit for the last time a few years after our daughter, Mary was born.  The last time I quit Bryan suggested I join a gym.  I was happily working out with weights but walking on the treadmill was getting a bit boring.

I remembered that there was some sort of running event connected with my favorite party of the summer at Peter and Diana Smith’s house.

Running seemed like a good idea, I could run before the party!  Well — the rest, as they say, is history.  I’ve run fast and I’ve run slow at this race.  I’ve had many goals for the race.  I’ve worked hard to be among the top 100 women finishers and earn a mug.  I’ve worked just as hard to be among the next group of female finishers and hoped for a rose when I crossed the finish line.  My all-time most prized accomplishment at the Spring Lake Five was to be the first female finisher at the Smith’s party and win the “Spring Lake 503” trophy, which I did in 1996.

The unwritten rule was that once you won you weren’t eligible to win again.

I still find that I have a certain amount of disconnect with what’s going on.  Bryan dropped Tricia, Karen, Nancy, Heather and me off at the race in the morning.  My hands were full walking towards Ocean Avenue.  I had a sweatshirt, my race belt with my number, my trucker hat and my phone in my hands.  I thought maybe I should just put the hat on.  But I stopped myself — I wanted a picture at the start line, and I didn’t want to have “hat head”.  Oh yea, I don’t have any hair.

And now I’ve walked the five miles.  I was blessed to have the company of my niece, Heather.  We walked and talked, and ended the day with over 14,000 steps each.  And I guess the competitor in both of us is still there, we were proud of the fact that we negative split.   And I’m grateful for the opportunity to have gotten to know her a little bit better.

All in all, a good day, a good weekend, and a good life.

 

 

 

Tuesday was a good day, at least in my new normal.  Bryan and I got into NYC stress free this time, taking the Seastreak Ferry and then walking the mile and a half to Sloan Kettering on East 66th Street.  I found out from two different people that Seastreak has an agreement with the American Red Cross — anyone who is commuting into NYC by ferry for cancer treatments is eligible for a very nice discount on a round trip ticket for themselves and one companion.  I don’t think we will be stressing over driving in again!

First up was my blood draw.  I was very curious to see the difference from before my first treatment.  A half hour after the blood draw I met with my chemo oncologist.  Dr. Traina was very pleased — all my important numbers were higher (good) than before my first treatment, and everything was still within the normal range.  We talked about my minimal / lack of side effects and she was again very pleased and explained the ones I did have.  She also said that the slight hair loss on Monday and Tuesday would accelerate greatly after my treatment on Tuesday.  More on that subject later.  But I’d like to say that my hair has looked especially nice over the last week.  Here’s an awful selfie from Monday morning when I first noticed that my hair was starting to fall out.  I usually like getting compliments on my hair but each time someone said something about how nice my hair looked all I could think was “not for long”.

Two dear friends, Kelly and Melissa, had invited me to go with them to Lake Placid — they are both training for upcoming races and since I had to cancel my training camp this spring they planned a mid-week trip on their own.  I didn’t think I could make it since I had a chemo treatment scheduled for the Tuesday that we would be in Lake Placid.  I did have it on my list of questions to ask but Bryan jumped ahead of me and asked if it would be possible to switch my treatment from Tuesday to Thursday and she said absolutely no problem!  Those of you who know me personally also know how much I love spending time in Lake Placid.  So, I have a trip to Lake Placid coming up, the week after Memorial Day!  Not sure how much actual training I’ll be doing but easy swims, bikes, and walk/runs are in my future in the Adirondacks.  Any time spent there, even if I just sit by Mirror Lake, will definitely rejuvenate me!

We got the rest of my chemo treatments (the last four of Taxol) on the calendar.  If all goes as planned my last chemo will be August 15th.  Scheduling my 20 radiation treatments won’t happen till closer to August 15th, I’m to call and schedule an appointment with my radiation oncologist around the time of my 7th chemo treatment on August 1st.

I was called back while having an early lunch that they were ready for me so Bryan and I got ourselves back to Sloan as quickly as possible to get things going.  The sooner we start the sooner I’m done!  The treatment “suites” in NYC aren’t quite as nice as those at Sloan in Monmouth but then again, that facility is brand new.   Things perked up though when Christy from the Integrative Medicine Department came to see me.  She wanted to know if I would like a massage and/or guided relaxation when my treatment started.  I quickly said “yes!”  What a relaxing way to start the poison drip.  We talked a bit more after she was done.  I found out that they also offer acupuncture, yoga classes and more.  I’m definitely going to call about the acupuncture since I’m still having trouble sleeping through the night.  About an hour later the drip was done and we were on our way back to the Seastreak Ferry and headed home.

So, let’s get to the emotional part of this week — my hair!  As Bryan said, losing my hair has been the one thing that everyone has been definite about.  “You will lose all your hair and it will happen shortly after your second treatment.  The slight “shedding” from Monday and Tuesday turned into a full on shedding on Wednesday.  How and when to take the plunge and buzz it?  Well, I woke up this morning and very gently combed my hair, here’s what I came up with.   Went to the gym to work out (1-1/2 hours on the treadmill walking, 1 hour on the bike all told today.)  The shower after my workout yielded even more hair falling out after a very gentle shower, cream rinse and soft towel dry.  An easy comb and I came away with even more hair falling out.  And this had me crying in the locker room!  Fortunately, my locker neighbor, Maryann, showed up, heard me out and helped me move on.  I came home but could feel my head tingling and anytime I touched my head I came away with loose hairs.  And truthfully, my hair wasn’t looking so great today.  I tried to figure out for how many more days I could put up with this emotional turmoil and texted Christina at Depascal and told her what was going on.  She said to come into the shop in 20 minutes.   Bryan came with me and I brought myself a glass of wine.  Christina put on some rock music and got out the buzzer.  She cropped most of it pretty closely and left some “style” on the top.  We both know this won’t last more than a day or two.  And you know what — it is a huge relief to be one step closer to my hair taking a temporary vacation.

So, let’s see how this goes.  I’ve got two basic ideas for the scarves, and we will see what works with the hats.  So, the moment I have been dreading is here.  Most of my hair is gone and what’s left will be done over the next day or so.  If this is the worst problem I have to deal with throughout all of this I will be one very lucky person.  But that doesn’t make it any easier to handle in the short term.

I still think Daphne has me beat in her picture with the sweatshirt she gifted to me, but I’m getting there!

 

 

 

 

 

 

Chemo #2 of 8 coming up tomorrow.  How did everything go the last two weeks?  Pretty damn good, all things considered.  No nausea, so I’ve had no need to take the “as needed” medications.  No real “bone aches” from the Neulasta injection that stopped me from doing what I always do.  Some random unusual aches last week which started on Wednesday morning and happened again on Thursday and Friday morning but nothing that was not completely bearable.  My heart rate when working out is a solid 10 beats per minute higher than normal for the effort levels I’m putting out when swimming, biking or walking.  We’ve even thrown in a new piece of equipment, a stair climber.  It’s really hard!  So, I’ve scaled back my efforts and even stopped when necessary to keep my heart rate in what I would consider zone 1 efforts.  This is something I want to talk to my oncologist about tomorrow.  I don’t really have any other side effects to talk about except that I’m still having a hard time sleeping.

But, there is one other side effect creeping its way in — the hair on my head has started to fall out.   And that sucks.  It’s purely cosmetic, and I’m not a high maintenance person when it comes to hair and makeup.  I’m really not sure how I’m going to handle this — I have two options for wigs, a ton of scarves (that I haven’t started figuring out how to tie yet), and a ton of hats — baseball hats, running hats, trucker hats, straw hats, and even a cowboy hat!   I’m not sure how my 61-year-old face is going to go with a bald head, but we will find out soon enough I guess.

I keep obsessing over the calendar — how will the next 7 treatments go?  Will I stay on schedule?  When will my last chemo / Neulasta injection be?  How soon can radiation start?  Will it be three or four weeks in between?  When will radiation end?  And in between all that — will I be able to keep the few social commitments I have made?  Will I be able to go to Lake Placid for the race on July 23?  Not to race of course, but to cheer for my friend and training partner Ben, and all the other athletes racing.  Will I be able to go to Kona to spectate again this coming October?  And I know the answer to all those questions — there is none until the time comes.

I’m dreading tomorrow but also anxious to keep this show on the road.  It brings me one step closer to the end.

Part of the soundtrack of my life, and words that struck a deep cord in me this morning.  When U2’s song came up on my iPod today it really made me stop and say an internal thank you.  I realize how true this is on a daily basis and I am beyond grateful for all the friends and family that I have to support me at this point in my life.  Especially now,  when I really need it.  I feel like I keep using the word “grateful” so much lately, but it is a sincere and honest feeling.  I have an amazing family.  I have a few genuine friends.  I have a huge network of good acquaintances around the world.   And yes, I have cancer.  That sucks big time, but it just needs some really aggressive treatment to give myself the best shot of it not returning.

So, that brings me to the point of this post.  This Saturday I am taking part in a walk to support Mary’s Place By The Sea.  Very appropriate, since it’s two more weeks before I can run.  I was aware and had supported Mary’s Place before with some fundraising events.  But until I spent my first afternoon there as a woman with cancer, I didn’t truly appreciate how special Mary’s Place is.  Every woman should have an opportunity to have a shoulder to lean on in their journey through cancer.  And for many women, that’s the only shoulder they have.

And I have to admit, sometimes I feel guilty that I do have so much support — prayers, meals, cards, experiences, and so much more.  And other people have to worry about getting healthy and also have to worry about how they are going to pay the bills.  That could come for us one day but it’s not an issue at the moment.   And I have a feeling that all the messages of support — like this video from my Coeur Sports Team — will continue to carry me through an awful lot.

So, in my honor, in honor of the women in your life who have or may one day be touched by cancer, think about making a donation to our Jersey Girl StayStrong Multisport Club fundraiser in connection with the walk.

In the meanwhile, I made it through my first chemo and Neulasta injection with nothing that I can complain about.  Some strange “pains” yesterday and today but each time it happens I compare it to what I put myself through voluntarily in an Ironman or training or the like and it comes up empty.  I accept that it will change and that’s okay — I’m grateful for the two week reprieve.  My body is healing from surgery, in spite of the annoying incision under my arm.  And I’ve made so many new connections to women who have gone through or are going through something just like me.  And if you’d like a band to show your support please just send me your address and I will make sure it gets in the mail to you.

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.”  

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.

 

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 and 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.