If It’s Meant To Be, It’ll Be. Baby, Just Let It Be

It’s been 6 weeks since my last blog post. That means over 12 weeks since my last radiation treatment. 14 weeks since my last chemotherapy treatment. Almost 9 months since my surgery. And 10 months since this all started. I wonder, when does the clock star for the “after five years you are considered in remission”? In some ways it all seems so far in the past. And sometimes I’m reminded it’s not in the past at all.

I had to drive up to Sloan in Holmdel last Thursday for an EKG and some x-rays on my back and spine. I’ve had some numbness in my legs and still sometimes feel like my heart rate is too high for what I’m doing. Routine tests, but it made me wonder how I went back and forth so many times for my treatments. Each trip brought so much possible harm to the rest of my body, along with the hope that it would erase all the remnants of cancer that could potentially be loose in my body. I wonder just how much my ability to disconnect my mind from my body when things get tough helped me here.

Well I didn’t get exactly the message I wanted to get in connection with the tests, or the news I wanted to have to be patient about. EKG looks normal, good news. Bones look good, that’s great. But…. Yea, there was a but. “The radiologist noted an intense structure in the retroperitoneal area (likely representing bowel content). Dr. Traina would like to follow up with a ultrasound. Not worrisome.” Of course it’s a holiday weekend. First appointment that’s available is at noon on Tuesday. And I don’t know when I will get the results, I doubt it will be right away. I got this news after I started this blog post, and after I decided on the title. So there you go, no coincidences.

[I won’t post this till after I know what’s going on, but wanted to finish writing my thoughts down.]

I went about my life as best I could, and pretty much kept the news to myself. Told one friend and got good counsel – “Will it help if you worry?” I decided it wouldn’t help if anyone else worried so the New Years weekend went as planned – workouts, time with family and friends, and tried for not too much negative time in my head.

Tuesday at noon finally came. Not much of a wait at Sloan in Middletown before I got called in for the ultrasound. The technician seemed to take a lot of pictures, this scared me. After what seemed like forever she said “I’m going to check these with the doctor but I don’t see anything. Could you have taken any tablets before you came in last week?” Well yea — synthroid, enzalutamide, and five different vitamins! Well, to make a long story a little shorter – after a consult with the doctor about the ultrasound I’m told “there is absolutely nothing to worry about”. And confirmation today from my oncologist’s office. “Nothing to worry about … all good :)”

So as I have known since the first diagnosis, it’s never going to be truly gone. And what can I do about that — nothing. Just live each moment I have to the fullest, and share my journey in the process. Here’s to 2018 — to health and happiness and accomplishing the goals I’ve set.

Broken Nails and Moving Forward

I saw a picture last night and it really spoke to me, so I saved it. Not really for any particular reason, maybe just to reinforce to myself that taking a step back this past 8 months was what I needed to do both physically and mentally.  img_0688

Yesterday was a follow up with Dr. McCormick, my radiation oncologist. All in all, she is very pleased with my response to the treatments. I mentioned that I’ve been swimming a lot and how I was developing a bit of an ache in my right shoulder area, but not a spot I’ve had trouble with before. She looked at my chart and said that it was not a surprise. – six weeks out from my last radiation treatment is when the chest muscles and tissues are most inflamed, and since everything involved in my treatments wraps around and is connected to the muscles I’m using for swimming it made perfect sense. Nice to know the cause!


Today was my follow up visit with Dr. Traina, my chemotherapy oncologist. I will see her once a month while I’m on Enzalutamide.  It’s funny how the little things sometimes upset me most.  When I put my gloves on I took a look at my finger, one of the four nails that have already fallen off.   And it’s ugly.  And it really bothered me that I have these constant reminders that will take months to go away.  It takes 6 months +/- for a new nail to grow back.   It’s one of the facts that I have to deal with, and sometimes I just I don’t want to. I want all these cosmetic issues to go away, because they are all reminders of something I’d like to pack up and put away.  And if I’m being honest, like the day my hair fell out, there was something about looking at my hand that actually brought me to tears. The new hair on my head is mostly a great silvery grey mixed with a bit of dark hair.   I’m comfortable with the close-cropped style I have at the moment.  I love my darker and fuller eyebrows and eyelashes that have grown back.  I’m not so comfortable with the excess facial hair — it’s all longer than before and a lot of it is dark!

I get to the lab at Sloan, my first stop to have blood drawn.  It’s crowded, and I notice an older couple with an infant in a carriage.  I just assumed one of them is the patient.   A few minutes later a young woman walks out from the lab area, she is obviously the patient.  And the mother of the infant.  And I’m crying about facial hair and ugly fingers?

My name is called and there you go – I’m next up for the blood draw. I chat with the guy who’s taking my blood and mention the mom with the infant and how it gave me a reality check on my complaints over my cosmetic issues. And he says yes, but you have cancer. And I say but how do you deal with this everyday. And he says I go home and sometimes I just need to not talk to anyone. I totally get it, and show him the quote I saved last night. He says that makes my day and can you please send it to me. And that I just made his day. Well, that just made my day.

We Made A Promise We Swore We’d Always Remember, No Retreat Baby, No Surrender

A lot of good stuff has happened since my last update. Tuesday was 7 months post surgery.  Twelve weeks post chemo.  6 weeks post radiation.  But who’s counting?  My surgical follow-up appointment showed that everything looks good, I’m clear on that front until April 2018. I made sure to have the follow-up mammography and sonogram scheduled now.

img_0600 It’s five years until I’m considered “in remission” so that’s the best news I can hope for in that department.  I don’t want to rush the next five years but then again . . .

I’m almost three weeks into a new journey — I agreed to participate in a clinical trial for a drug that shows promise in preventing the return of cancer in women with AR(+) triple negative breast cancer, and that would be me.

Yes, I Take My Pills In A Shot Glass!

Enzalutamide has already been FDA approved for use by men with metastatic prostate cancer, and studies in women with metastatic AR(+) triple negative breast cancer have been very positive so they are now expanding to women with cancer that is not metastatic. Yet.  And I feel I have to keep that option open since there are no guarantees and I don’t want to take anything for granted. No, I’m not being negative — quite the opposite actually. But I also need to be realistic and accept as best I can that anything is possible in the future. And that is why I’ve agreed to the study — I want to feel that I’ve done everything possible to prevent this from coming back. And if it does come back — well . . . I don’t want any regrets about roads not taken.  I’ve felt no effects from the drug, yet.  Fingers crossed for the days ahead.  And I’m still on drugs, for at least a year.  From the woman who doesn’t even like to take an aspirin.  But, I’m grateful for the monthly in-depth follow-up appointments that are part of the study.  I’m still scared of what the future holds, I don’t dwell on it and it doesn’t stop me.  It actually motivates me to make the best use of every moment that I have.  There is an IRONMAN finish line in my future in 2018, I have not doubt about that.

An excerpt I read recently online:

“I love it,” she stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.

“Mrs. Jones, you haven’t seen the room …. just wait.”

“That doesn’t have anything to do with it,” she replied. “Happiness is something you decide on ahead of time. Whether I like my room or not doesn’t depend on how the furniture is arranged, it’s how I arrange my mind. I already decided to love it. It’s a decision I make every morning when I wake up. I have a choice;

“I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do. Each day is a gift, and as long as my eyes open I’ll focus on the new day and all the happy memories I’ve stored away, just for this time in my life.”

She went on to explain, “Old age is like a bank account, you withdraw from what you’ve put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories. Thank you for your part in filling my Memory bank. I am still depositing.”

And with a smile, she said: “Remember the five simple rules to be happy:

1. Free your heart from hatred.

2. Free your mind from worries.

3. Live simply.

4. Give more.

5. Expect less, & enjoy every moment.”

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.”

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.

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?


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.


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 🙂


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!


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”!


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.


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.


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.


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.