Month: June 2017

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.    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.

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.  

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. I 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!  

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?