All About Me

It’s been the best of days, it’s been the worst of days.  Let me look at the best first.  Yesterday was my daughter and son-in-law’s first wedding anniversary.  There is truly nothing more that a mother wants than to see their children happy.  Bryan and I are blessed to spend a lot of time with Mary and Ryan.  No life is ever perfect, but it’s a joy to see a young couple who are building a strong future together.  This past weekend was another gift — we had a great time at the Mets game on Saturday hanging out with Mary’s new best friend Ronnie Darling followed by Chinatown for dinner and a foot rub.  We spent a bonus day together on Sunday lounging by our club’s pool with some sun, lunch and cocktails.  IMG_3489  I spent Monday at Sloan Kettering, meeting with the dermatologist and the integrative medicine department.  Lots of good information, but an overwhelming sense again today of I just don’t want to be doing this.  Insurance nonsense, like coverage denied for an eye drop that includes an applicator (which makes it cosmetic) but without the applicator it’s covered.  All that’s done is create days of delay in getting my prescription refilled.

More insurance nonsense — I’ve had trouble sleeping since chemo started.  Not surprising based on my treatment protocol I’ve been told.  And not harmful.  Acupuncture could help.  MSK has acupuncture practitioners.  They are “preferred” providers with my insurance company.  My insurance company doesn’t cover acupuncture but does offer a discount on preferred providers.  MSK acupuncture practitioners are not included as preferred providers.  There are lots of others listed but none connected with Sloan.

I’m feeling a bit pissy about all this tonight.  Neuropathy is one of many new side effects I need to be concerned with on the last four rounds of chemo (tomorrow is #4 and final of “AC”).  Apparently, Taxol brings a whole different set of issues.   My choice is to suffer through ice baths for my hands and feet in spite of my Reynauds to hopefully deter the neuropathy in my hands and feet which will seriously interfere with swimming, biking and running.  My plan — I can tolerate a lot of pain if it’s for a purpose.  So, I may just have to suffer through the Reynauds (temporary) to prevent the neuropathy.

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Another day spent working on cancer-related issues.  Another day that I’d rather have spent doing something else.  But, to turn it around to the positive I guess I need to be grateful for insurance and all the things in my life that support me on this journey.  But, sometimes it just sucks and feels like time better spent doing something else.

Suggestion to my sleep issues.  Get offline a few hours before I go to sleep.  So, I’m giving myself an 8PM cutoff.  Which is now.  Check back in tomorrow, after some Honeymoon Ice Cream.

Too Much To Share And Not Enough Time

I’ve been trying to update my blog for over a week now.  So, before I fall into the trap I fell into a couple of years ago I am just going to put down what’s on my mind however it comes out.  I’ve been working on this since my second round of chemo, and I’m now coming up on a week after my third round.  283710_10150897557158141_1530693404_n

Here was the best news I heard from my chemo nurse on Thursday.  “If you haven’t had any side effects yet there is a very good chance you won’t have any.”

I’ve now made it through three of the four rounds of the first drugs (“AC”) and my side effects have been minimal to non-existent.  Well, except for losing my hair.  This was a much bigger deal to me before it actually happened than it was once it happened.  There was so much wondering about if and when it would happen and I couldn’t help but wonder what I would look like and how I would feel emotionally.  Now I’m just wondering how I will feel after each of the upcoming treatments.  One more of the “AC” and then four of the Taxol.  I’d love to feel no worse than I have so far. I was anxious to see my blood test results before chemo last Thursday.  Almost everything went up (that’s what the Neulasta injections do.)  The only thing that went down was my red blood cell count.  It started out on April 27 at 4.58, on June 8 it was 3.97.  The normal range is 4.00 to 5.2.  My chemo nurse said it was absolutely nothing to worry about.  I’ll keep trying to eat more of the foods that could possibly help, although I remember my oncologist saying that there was nothing that I could do that would impact these numbers.

This past Friday was nine weeks since my surgery.  The incision from the lumpectomy is healed over, and the incision from the lymph node seems to have finally stopped re-opening (keep your fingers crossed on that one, please!).  Eight weeks was when I was able to start running again.  So, baby steps — Friday was a 3-minute run / 1-minute walk from my home.  Monday in Lake Placid was a 5-minute run / 1-minute walk all the way around Mirror Lake.  Tuesday in a gentle rain I ran for 3 miles without stopping and felt great.  And Sunday here at the Jersey Shore absolutely sucked!  But, my friend and long time runner Mike told me not to stress about it — everyone had trouble running on Sunday because of the temps and the air quality.

I am so grateful that I was able to get away for a few days last week to one of my most favorite places to visit.  I have so many wonderful memories in Lake Placid, both from racing, from training and also just spending time here.  It felt so good to run on familiar roads — I left town on Route 86 towards Cobble Mountain Lodge. IMG_3404I knew that there were new owners and it was great to see so many improvements underway.  We stayed there for many, many wonderful trips to Lake Placid!  Left on Northwoods and up the hill that I’ve biked so many times.  The uphill didn’t kill me, and my heart rate stayed in a reasonable range.  Left again when I reached Mirror Lake Drive.  I remembered running and riding that stretch, and I was picturing the day that I’m back here racing again, and finishing up the run and heading towards the Oval for my finish.  That’s going to be a special day for sure!  I forced myself to stop at 3 miles and walked back to the hotel for my cool down.  I want to run again so I knew not to push it.

What I was really reminded of during the trip is what my friend Melissa posted — “what this sport has given me is so much more. It fills my life with so much – adventures, new challenges, beautiful places and new friendships.”  My friend Amy lives near Lake Placid and came to visit last Monday afternoon.  I still can’t find the words for her gift.

 

I met Amy and her daughter Ruby back in 2015 because we are both on the Coeur Sports team, that year she was first overall female at IRONMAN Lake Placid.  The beauty of this sport and this lifestyle is that we are all on the same journey.  And people like Amy understand what it all really means.

Fast forward to my chemo this past Thursday and a picture that has been a big hit on social media and among our friends.  I got set up for my treatment, my husband Bryan got up and asked “do you have a pillow?”  I said yes dear, I’m all set.  His response?  “No, I mean do you have a pillow for me?”  My nurse came in at that point and found him a pillow.   I’m grateful he was also able to get comfortable during treatment LOL!  IMG_3425

There’s so much more in my head and in my heart.  But, let’s get this posted and I’ll keep working on the next one.  I had quite a few amazing moments this weekend.  Several women from my club raced at Eagleman this past weekend — one of the races that was on my schedule.  Mary, who placed 5th in our age group, told me that she received many shout outs of go ‘Jersey Girl & do it for Moira Horan‘ from cyclists who passed her.  (Mary is more of a runner, but doing awesome on her bike!)  And Rachel, who’s on the board of Women for Tri with me and a new mother told me, in connection with her win at IRONMAN Boulder, 9 months after her son was born, that she “channeled some Moira strength”.

So there you go.  There’s a lot more in my head, and a lot more in my heart.  And I still every once in a while have a moment where I stop and can’t quite catch my breath about the enormity of all this.  But, I spent an amazing weekend with family and friends, and who really has anything more than today?

An Emotionally Uplifting Day

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.

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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.

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Peter Smith and me at the “Spring Lake 503” annual party.

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.

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An Emotionally Draining Day

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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 talkIMG_3306ed 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.  TIMG_3321he 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.

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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!

 

 

 

 

 

 

Side Effects?

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.

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“Sometimes You Can’t Make It On Your Own”

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.IMG_3083

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.”  

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.

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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.

 

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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