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!”