Someday We’ll Look Back On This And It Will All Seem Funny

Somehow I doubt it will ever seem funny, but realizing that today was radiation #19 of 20 made looking back on this a reality.  I’m really and truly almost done with my treatments.  A seven-month journey from that initial and just “routine” mammogram.  And a course change, from a planned season of a family trip to St. John, the Boston Marathon, Eagleman, IRONMAN Lake Placid and the hope of racing the IRONMAN World Championship again.

I am so grateful that my husband Bryan and I got to make another trip to St. John, this time with our daughter Mary and our son-in-law Ryan, before the devastation which was caused by Hurricane Irma.  But it makes it that much sadder to see the beautiful places we visited so recently.  Most are now destroyed, and we are still wondering about many of the wonderful people we met.

I’ve kept up training to the best extent that I could, and I’m finally seeing some of it working.  My paces in everything are improving, my heart rate is still higher than it used to be but it’s much better — I don’t immediately go to the 130s and 140s before I’m even making an effort.  I haven’t done a race at all this season and I miss it!  I have two events planned for when I’m in Kona — I’ve signed up for the 2.4 mile practice swim on the IRONMAN course (not a race) and the PATH 10K.  That won’t be much of a “race” for me but it has a start line and a finish line, and I’m looking forward to it!

Radiation has been interesting — a total of 20 treatments plus a set-up and a “practice” appointment.  What’s entertaining is that for as sophisticated as the equipment is, I was “marked” with a sharpie marker and some clear stickers in four spots on Thursday, to pinpoint where my targeted radiation is.  Isn’t there something more sophisticated that could be done other than this?  My skin was fine, up until Friday.  That’s when my skin looked badly sunburn and started itching terribly.  The nurse told me today that the side effects could and probably will worsen over the next two weeks before they start to improve.  Tomorrow is my last radiation treatment.  I hope it’s the last time I ever walk into this room again!

img_0118img_0117Tomorrow is also my follow-up appointment with my medical oncologist, Dr. Tiffany Traina.  We will discuss what options I have for continued preventative treatment (not many, since I’m “triple negative”) and what my ongoing plan will be.

So, that means that in many ways one major leg of this journey ends tomorrow.  Just writing that has made me cry — so many emotions. Joy, that it’s over.  Fear that it will never really be over.  Relief that I get my life back and that my schedule no longer revolves around chemo and radiation.  Annoyance with the effects of the chemo on my nails — losing toenails I’ve dealt with but losing fingernails?  Never.  And I’ve developed issues with my fingernails — separating from the nail bed, and a fungus and infection underneath.  I’ll lose most of them, and it will take 6 months for them to grow back.  First world problems for sure, but not attractive and potentially very painful.  The thought of hitting a lane line has me committed to wearing paddles for all my swims till this is fixed.    Yup, more first world problems.  But, reminders that there has been a major bump in the road in my life.  I’m sure it will all pass as quickly and as slowly as the rest of this journey has.

Some of my favorite messages lately have been from my friend’s children.  From 5-year-old Celia:

“Is Moira going to be ok?
Yes, she’s gonna be awesome
Yes, she had no hair, she still looks pretty though.”

And from 6-year-old Lily:

“Lily, my hair is growing back.  But I don’t understand why it’s silver 😉
Hmm, well I bet it will be silver for a little while and then it will be blonde again.”

It Ain’t No Sin To Be Glad You’re Alive

There are no coincidences. A live version of “Badlands” (I always prefer the live versions of this song) came on the radio this morning as I was on my way to radiation #10 of 20, and it brought back a lot of memories.  I was reminded of all the Ironman races I’ve done, and the words to that song have carried me through.  I usually sing it to myself during the second half of the marathon.  Then I really thought that this is just like an Ironman — I’ve had my surgery and all that’s left is a couple of scars, I’ve finished chemotherapy with no hair and a lot of skin rashes and now I’m in the second half of my radiation treatments.  This is just another kind of badlands.

“For the ones who had a notion, a notion deep inside,
That it ain’t no sin to be glad you’re alive
I wanna find one face that ain’t looking through me
I wanna find one place,
I wanna spit in the face of these…

Badlands, you gotta live it every day,
Let the broken hearts stand
As the price you’ve gotta pay,
We’ll keep movin’ ’til it’s understood,
And these badlands start treating us good.”

I’m left with the only choice that I’ve ever had — keep moving, till these badlands start treating me good.   That will only be when I’m out the other side of all of this.  I don’t like a lot about radiation.  My two technicians, Chris and Elena, couldn’t be nicer.  The facility is beautiful and the room is like stepping into the future.  It’s a quick process — 1 minute and 15 seconds to be exact.  A bit over two minutes when I also need x-rays (once a week).  Fortunately, I don’t actually see the bank vault type door which closes during the treatment.  When it was mentioned once and I actually noticed the door it made me feel very claustrophobic although the room is huge.  But radiation, different but in many ways just like chemotherapy, also carries with it a lot of risk.  But, it’s all risks I feel I need to take.  If cancer ever comes back I don’t want any regrets about the choices I made about my treatment.

I finished reading a book this weekend that was part of one of the many thoughtful gifts I have received.  Patty put together a box of books that were recommended by friends.  Aimee recommended a book called November 9, by Colleen Hoover.  Something towards the end of the book also really spoke to me.  It’s something that has been inside me since this journey all started back in March.

“But that’s the thing about cancer.  They call it the fight, as if the stronger ones win and the weaker ones lose, but that’s not what cancer is at all.

Cancer isn’t one of the players in the game.  Cancer is the game.

It doesn’t matter how much endurance you have.  It doesn’t matter how much you’ve practiced.  Cancer is the be-all and end-all of the sport, and the only thing you can do is show up to the game with your jersey on.  Because you never know . . . you might be forced to sit the bench for the entire game.  You may not even be given the chance to compete.”

This doesn’t mean I’m being negative at all.  But, it’s a reality I’ve had to face and there was something reassuring about reading it in black and white.

On the other side of all of this, I spent two days in Chattanooga this past weekend, at the IRONMAN 70.3 World Championship.  I guess I could write about the excitement and pride I felt about being on Women for Tri board that helped shape some of the format surrounding two days of racing, an all-women race on Saturday followed by an all-men race on Sunday.  What was more exciting and really spoke to my soul was the people.  Triathlon has grown so much since I first got involved back in the 90s, and even more so since it’s inception of course.  But what I love about it and what keeps me coming back is the bonds that I’ve made over the years because of the sport.  I loved seeing so many friends.  And I’ll leave it at that, with some pictures from the weekend and a renewed desire to be back on a starting line soon.

 

Chemo Done, We Are On To Radiation

I will use the power of positive thinking and I designate Tuesday, August 15th as my last trip into NYC for labs, my last visit with my oncologist (well not really the last but the last for her to prescribe chemo) and my last trip to the “treatment suites” for chemotherapy.  My lab results came back good — a part of me will miss this two-week status check.  I’d really like to have a two-week update to check on my system as it works its way back to normal, without all the drugs.  My main questions were answered — I should allow about a month and then slowly add back foods I’ve stayed away from like rare meats, raw seafood and ease up a bit about my hyper-sensitivity to potential germs.  Although I tend to forget not to hug or kiss people when I see them.  She suggested that I give myself a month and then proceed slowly and cautiously.  I asked about anything that I would take after chemo and radiation is done, it’s something to discuss with my oncologist at my next appointment on Tuesday, September 26.  There is a drug that is in clinical trials and already FDA approved for another type of cancer.  Seems there are promising results from this drug for women who are triple negative / androgen positive, which I am.  So we will discuss enzalutamide again at that visit.  Ugggh, part of me wants this and part of me doesn’t — I’m that person who’d rather not even take an aspirin.  Just another reminder that this is all part of my new normal.  We will cross that bridge when I get there.  My husband Bryan asked the “elephant in the room” question — what’s my prognosis?  The answer — we will be watching you closely for the next two to three years.  Not sure what else I can say about that for the moment.  There’s a lot of living to be done in these next two to three or twenty or thirty years.  That’s all I have.

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Sunday Funday with my family.

On to the treatment suites and my last chemo.  After the last experience I was very vocal about my vein issues and the nurse was very empathetic.  She took her time but still the results were that the first two veins collapsed.  She spent a lot of time looking for another vein but finally left and returned with who I assume is the resident expert.  She was a bit more brusque and said that there is no reason why I couldn’t use my right arm and that latest research says it’s fine in spite of the lymph node involvement.  Well, I’d rather not but I didn’t have to go down that road since she struck gold with a good vein in my left arm and off we go.  Three plus hours passed quicker than I thought they would. I definitely missed the steroids in a couple of days, though.  Last chemo, last steroids, last Neulasta injection.  Sorry, I won’t miss any of you!

I had a good ride on Wednesday but on Thursday I was totally and competely exhausted.  I did ride but all I could think of the entire ride was I’m so tired that I don’t even want to put my bike back in my car.  Ran knew something was wrong, I wasn’t even talking.  When I said how I felt about taking my bike home he promptly put it in his garage and said it will be here for when we ride tomorrow.  Which we did.  I spoke to his wife about the ride a few days later.  She asked why I didn’t stop.  I’m not quite sure except I’ve never stopped, or called for a ride home, or dnf’ed a race.  And I don’t plan on doing it any time in the forseeable future either.  My concession that day was to come home, take a shower and take a nap on the front porch.  And then take a nap on the couch.  And then tell Bryan I was just too tired to cook dinner and proceeded to go to bed!  So, I’ll designate Thursday, August 17th as my worst post chemo day and move on.  But since my worst day involved feeling crappy on a 17-1/2 mile ride and averaging just under 15 mph, I will remain grateful for my first world problems.  All my workouts are posted on my Strava and I look forward to the day I look back and see how far I’ve come from today.

Radiation next.  My feeling about it — let’s get it started and finished as soon as possible.  With that as my motivation we scheduled “setup” for Monday, August 21st and my first appointment on August 28.  Well, setup went quickly in spite of the first unpleasant staff person I’ve come across as MSK.  I’m just going to let that go in spite of all the mis-information she gave me.  Since I don’t settle for answers that don’t make sense I decided to follow up with my doctors and found out the correct answers.  Another space age room with space age technology, a few pictures and I was out of there.  Those two weeks went by quickly between that last chemo treatment and what I thought was going to be my first radiation treatment.  Seems someone messed up and I was only scheduled for a “practice” and not an actual treatment.  Kind of annoying but it was nice to find out that my actual radiation appointment would be a less than 5 minutes and was not claustrophia-inducing;.  The downside is that it extends my schedule for one more day and ends up with treatment #20 on September 26.

This will all cut down on my bike time but I had some amazing rides over the last few weeks with friends and training partners Ran, Martin and Gal.  Ran is probably my training partner sould mate.  When I told him I was going to have to cancel our ride this past Sunday his response was no, let’s just start earlier.  And he’s the one who drives into NYC every day for a high stress business and also has a family!  We managed a 140 mile week followed by a 150 mile week, I’m good with that under any circumstances.

So now it’s time for a swim / run focus.  My current plan — get up early and swim, head to Holmdel for my radiation and then head to Holmdel Park for whatever I can manage.  The Holmdel Park cross country course and the roads around the Park have always been among one of my most favorite places to run so I figured I’ll take this as a sign.  I’m slow but it’s okay — I felt a few glimpses of a runner today, even if it was on the downhills!  And who really cares about all those high school runners who are zipping around the park???  No matter how tough it is to look at the pace I’m swimming and biking and running in black and white, when I’m in that moment it feels good.  And I know that to many people it’s a good pace.  So once again, it’s my first world problems.

There are moments that bring me to tears.  Like when I opened a beautiful addressed envelope from my niece, Heather — a phenomenally talented artist.  The ribbon is just one of her drawings. But what touched me even more is her card.  I’m reminded of one of my favorite Avett Brother songs — “if you’re loved by someone you’re never rejected, decide what to be and go be it . . . . . ”

It was especially great to catch up with another of my best friends, it’s been too long Bryan but it’s also like we saw each other yesterday!  Great fun and let’s paddle soon . . . . . SEA Paddle again next year?

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Radiation #2 tomorrow.

And I Know Someday I’ll Walk Out Of Here Again

Chemo treatment 7 didn't start out well. When the first vein collapsed I tried to keep a good attitude, after all I've been very lucky so far. When the second and then the third vein they tried collapsed I wasn't quite so calm anymore. And then when a nurse suggested we could try my right arm because "you only had one lymph node removed" I put my foot down and said absolutely not! All the instructions and warnings I have been given have been to not use my right arm for blood pressure, for blood draws, etc. because of the risk of lymphodema. When they described it as swelling of the arm I wasn't too worried, until they told me it's permanent. "Only" one or not, I'm taking no chances. Fortunately a new nurse came in and found an untapped "good" vein along the back of my arm and on the fourth stab they were successful. And so began the third treatment — Benadryl, Dexamethasone and Paclitaxel (Taxol or "poison"). Since I didn't stop breathing during the first two rounds of this drug the nurse no longer waits in my room with an oxygen tank.

Other side effects that have happened over the last two weeks — my eyebrows are pretty much gone, along with the majority of my lower eyelashes. My upper eyelashes have thinned but a good amount of them are still there, although they also seem to be falling out. I caught sight of myself in the mirror the other day and thought wow, you look like one of those people in the commercials that pull on your heart strings. Oh wait, sometimes I forget . . . . I am one of "those" people.
Which brings me to something else: complete strangers are really, really nice to me. No one cuts me off on a line. Complete strangers pay for my coffee at Starbucks. Even people on the streets of NYC look me in the eye and smile and give me an encouraging word. It's going to suck when my hair grows back and people return to their usual asshole behavior. All of which has really made me think about how we all judge people by their appearance. If I hadn't lost my hair no one would have any idea what I'm going through. So what's the lesson here for me? Time to remember that none of us know what's going on with the next person, they may have a way tougher road in front of them than any of us realize.

The neuropathy and the tests I had this past week are an interesting development. The tests I had with the neurologist this past week were interesting. Dr. Tzatha described my symptoms as "mild" but I was very unsettled to learn just how much feeling I don't have in my feet or in my hands. She also said that based on my lack of proprioception she was surprised that when I walked with my eyes closed that I didn't stumble or fall. She attributed that to my fitness, so once again my lifestyle choice has made a difference in my quality of life.
So much to look forward to this week — last chemo, last labs, last neulasta injection. And time to start the road back. And look forward to my trip to Kona with my friends Amy. Who kicked ass today at USAT Nationals!

The End Is In Sight

I have no patience to just sit back and wait for things to happen.  Chemotherapy #6 was coming up and I really wanted to get my radiation schedule set. So I took advantage of the option on the MSK portal to message my radiation oncologist and got a quick return phone call. And just like that, there is an end date.  Radiation appointments are now officially on the calendar with a final treatment scheduled on September 25 at 8 AM. Just about eight weeks to go, but who’s counting? I’m excited that my schedule will no longer be controlled by doctor appointments.  For someone who’s never been sick before, this has been difficult, to say the least.

 

Doesn’t leave much “wiggle room” to do much of anything but make sure I’m ready for the next day’s treatment.  I still sometimes feel like I am looking at myself from an out of body perspective – is all this really about me?

I’m also still struggling with my limitations.  I get tired, well it’s not really just tired.  It’s a different kind of fatigue. Kind of like the way I’ve felt in the weeks after an Ironman.  But like all the other side effects, it’s not so tough to take most of the time, and I’ve learned to adapt.  They are all temporary.  I hope.   Until I tried to put on my wetsuit, the day after chemotherapy.  The neuropathy hadn’t flared up, yet.  The cold therapy during treatment and the Celebrex had helped immensely.

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Until I put on my wetsuit to swim on Wednesday after we arrived. Let’s just say that the little voice in the back of my head that every once in a while suggested I was a wimp for not continuing on with training for Lake Placid was quieted right then and there.   I have a very high pain tolerance.  Let’s just say that by the time my wetsuit was half on I was close to tears, and if there hadn’t been other people around I would have just cried. I swam the rest of the week in Mirror Lake in just my swim skin, much easier to put on.  Fortunately, the weather and water temperatures made that manageable.

There were so many high points to our week in Lake Placid I don’t really know where to start.  Maybe I should just leave it at that — I love being there at pretty much any time and I especially love the energy of race week.  I really made an effort to not overdo it, I wanted to make sure I conserved energy for race day and especially working at the finish line till midnight.  First up, we ran into a long time good acquaintance who lives in the area.  He shared his good news with us — he had just won $5,000 a week for life!  Couldn’t be happier to hear about good things happening to good people.  Well, I could be happier, if it was me 🙂

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Next up, I finally got to meet my friend Kelly and Ryan’s adorable daughter Ivy in person, otherwise known as Little Ivy Otter!  I’ve been watching her grow up on social media but it was so awesome to finally get to hold her, and to pinch her cheeks!  It was great to be able to support and cheer for Ivy’s dad, Ryan Heisler, and to be at the finish line to watch him cross.  Ryan’s race report is quite moving, and I’m touched to know that I helped in some small way to make his journey to that finish line possible.  The week continued to be invigorating for me, it’s always great to see so many old and new friends.

Before our Women for Tri meet-up, I did catch up with Mike Reilly (otherwise known as the “Voice of Ironman) for the best picture of the week!

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So many more highlights and memories made over the week — dinner with my Coeur Sports team, my friend and teammate Amy winning for the second time as first female at IRONMAN Lake Placid (with a 9:46 at 40 years old I might add!), my friend and one of my training partners, Ben, finishing his first IRONMAN and beating my best swim, bike and overall finish times . . . . . but not my best run, Ben (there’s always next year LOL!) . . . . and just more than I can even remember at the moment.

 

I’ll leave this with being so grateful for an amazing workout this morning with one of my favorite people to train and just hang out with.  Ran will always be faster than me, but always pushes me to be just that much better, and all I need to do is make sure I push him to get out the door.  This morning I felt that little bit of the “old me” that’s still in there in spite of all the drugs and treatments and the like.  Yes, just in time to start the two-week cycle all over again.  Tomorrow is #7 of 8 and how amazing and exciting and awesome is that???

Things I Will Never Take for Granted

  1. The relative peace and quiet of life outside of NYC.  Jackhammers, buses, taxis, too many people, helicopters and more on my walk back to the ferry.  I don’t miss New York.
  2. Living close to NYC.  I have access to some of the world series best cancer specialists at Memorial Sloan Kettering.
  3. Being a triathlete.  It’s given me the discipline to follow a plan, it’s kept my heart and lungs healthy. It’s made the pain in my hands and feet that much more tolerable, since I’ve caused far more discomfort to myself, and paid a lot of money to do it.
  4. My love of healthy eating.  Seriously, I love fresh vegetables.  I love organic food, I’d eat raw vegan if I had the time and the money!  Well, maybe except for the occasional hot dog, beer, or glass of wine.
  5. My hair.  I said to Bryan the other day that one thing I never imagined was that one day I’d be bald.  I really don’t mind how I look with no hair.  Or, maybe I’m just delusional about how I look.  All I know is that’s hats, scarves, wigs, etc. would not be fun in the summer.
  6. The NYC Fire Department.   I’m blessed to have good insurance.  I was reminded of this again today when I checked on some prescriptions I need.  Although my copayment is a bit over $100, without insurance just one prescription would have been over $600. And let’s not forget that $5,500 injection I give myself every other week after chemotherapy for a grand total of $44,000!  Combined with a program from Amgen the cost to me is only $25 for two injections.  A special thank you to my friend Kelly for all you do with Amgen and Breakaway From Cancer.
  7. Good veins.  As I head into treatment #6 of 8 tomorrow, I don’t think I’ll ever look at those veins in my left hand and left arm the same.  They’ve taken a lot, and still have a bit to go but I haven’t had an issue yet.  A solid four plus hours with an IV needle in my arms does leave a mark, though.
  8. An amazing network of friends and acquaintances.  I can’t say enough about this.  Everything means so much, even though I may not always say so.  All the cards, the thoughtful gifts, the visits, remembering to call and ask me if I want to swim or ride or run, and so much more reminds me of all I have to be grateful for.
  9. My family.  Nothing ever takes the place of family.
  10. Being raised Catholic.  I take great comfort in my beliefs.  I don’t feel I have the words to say any more than that.  Each time I go into NYC by myself I stop in St. Patrick’s Cathedral.  And while I may not have always remembered to say thank you when life was good, I do stop each morning and read from a book that my friend Amy suggested I read.  I take a few minutes each morning, usually on my front porch with my coffee and read the day’s reading from “The Power of Being Thankful” by Joyce Meyer.  365 Devotions for Discovering the Strength of Gratitude.  I’m still grateful and find more and more to be grateful for each day.

I just need to get through tomorrow — labs (I wonder where my blood levels are at now?), a visit with my chemotherapy oncologist, treatment #6 (which means there are only two more left) and then I can finish packing, wake up on Wednesday and head up to Lake Placid!  I’m so looking forward to meeting up with some of the Women for Tri community in person, watching my friends race, and doing my part to make sure everyone hears the words “You are an Ironman”!

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We Really Are More Than Half Way

Another two weeks of ups and downs.  On one of my runs last week, as I struggled to manage my heart rate on an easy and very slow effort run, I realized just how much work I will have ahead of me once treatment ends.  I really haven’t had a good season of racing for quite a while.  During 2015 and then 2016 I happily made my focus about my daughter and her wedding.  This was supposed to be “my year”.  Well, we all know how 2017 is going.

 

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Wearing my new favorite sunglasses from Roka, the Phantom Aviators!  

 

As I thought about getting back to my previous level of fitness I realized that it would be best to get myself a coach to work with.  It’s been a very long time since I worked with a coach for myself, not since the 2007 season  The first person who came to mind is someone I’ve gotten to know because of the Coeur Sports Ambassador Team that I’m part of — Sonja Wieck, the founder of Rising Tide Triathlon Coaching.

 

I’m staying active, swimming between 2,000 and 2,500 meters about three times a week, running about three times a week and biking twice.  While I am grateful that I am able to get out and do these things, and I accept that my body is fighting more important battles at the moment, it’s sometimes frustrating and even a bit depressing to see how slow I am when I compare myself to what I was able to do before my surgery in April.

Some pics, just because I can still find time for me to enjoy the summer.  Everyone should have this much fun at an 80th birthday party!  Happy birthday, Lou Hansen.

On the treatment front, I survived the first 4 rounds of chemotherapy and 5 is coming up this Wednesday.  I have had minimal side effects to the “AC” (Doxorubicin and Cyclophosphamide) portion of my treatment.  A change came last Saturday when I woke up with horrible sensations in my feet and even worse in my hands.  The only way I can describe it is that my feet felt like I had run a really hard marathon and my hands felt like I had carried too many of those plastic supermarket shoppings bags that were heavy.  Not life-altering but definitely a difficulty.  A couple of times it was so bad I found myself with a headache as a result.  Calls to the doctor’s office led me to learn that there really isn’t much that can be done about it, I just have to suffer through the temporary neuropathy.  When asked by the doctor’s office if I was in pain, I couldn’t say yes — I’ve done much worse to myself by my own doing in the past, and quite often I’ve paid a lot of money to do so.  The only possible treatment offered was acupuncture, which I had scheduled for last Thursday with my long time friend, Shelby Sickles of Harmonious Balance.  The neuropathy in my feet is greatly minimized and my hands are better, although the right still bothers me more than the left hand.   I realize all this can change once we have another round of chemo, but I’ve scheduled acupuncture for once a week at least through the rest of my treatments, the last of which is on August 15.

Which brings me to treatment #5 this coming Wednesday.  This starts the switch to the Taxol (Paclitataxel) treatments.  The actual “drip” part of this treatment is much longer than the first four of AC which had been described as taking an hour, but in reality was more like two hours in the room and an hour and a half with an IV in my arm.  Lots of questions floating around in my head:  will I be one of the “rare” patients who are allergic to the drug?  Apparently, Taxol can cause a very quick and severe reaction if I am allergic.  So much so that first I’ll be heavily dosed with Benadryl and then have a nurse sitting in the room at the ready just in case.  Add to that the fact that I truly don’t remember the last time I sat still for four or even three hours and it’s all something I just can’t wait to start.  And yes, I am being sarcastic.  I actually had a thought today on my run — I wonder if I could bring my bike and a trainer to pass the time?  I mentioned this to Bryan, he just shook his head and said no.

 

More “good” news to add — continuing in my “GSD” fashion, I’ve managed to get my radiation set-up and treatments on the calendar.  The “simulation” appointment is on August 21st and my first of 20 rounds of radiation will start on August 28th.  Twenty business days of treatments should bring this all to a close on September 25th.   Radiation brings a whole other set of risks and issues, but I’ll deal with them after I see how this Wednesday goes and how “lucky” I continue to be.

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Something I am truly looking forward to — a trip to Lake Placid to spectate at IRONMAN Lake Placid.  Yes, this is the race I had planned on doing this year and was looking forward to training for with my friend Ben.  That training together didn’t happen except for some swim workouts, with abbreviated distances and pacing on my part.  But, I’ll be there to cheer for him and so many other friends.  I also hope to get some swims and bikes and runs while I’m there, maybe even a paddle or two.   But, I am especially excited that I will still be able to work with Mike Reilly at the finish line, doing my part to make sure that everyone who crosses that finish line hears the magic words “You are an Ironman!”

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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