This is just a very small story about my own connection to Sean English, a huge personality in our triathlon family.
I decided that Wildflower 2018 would be my first triathlon finish after my cancer journey in 2017. When my friend Ryan Heisler saw that I was doing that race he told me to look for Sean English there. I had not met Sean before and did not know about his cancer journey. Well I got to Wildflower, met Sean and we shared our journey. Let me say this — triathlon is an ohana we are blessed to be part of, but cancer is also a different kind of ohana. One we’d all rather not be a member of. But it is a deep bond, with thoughts and fears that I can’t even put into words. Wildflower has its own place in my heart but Sean at the microphone all weekend made it an experience that surpassed all my expectations. Each time I saw him that weekend and especially on race day I knew that he understood just how much the experience meant to me. I crossed paths with Sean several times after that and knew his journey was so much tougher than mine.
One of my last contacts with Sean was in Kona this October at the Parade of Nations. The commentary was beyond entertaining and I laughed from that place deep inside that is just about having fun.
God bless you Sean, and your family. I hope to be a better person because of you.
I just read a very disparaging post about this season’s ambassador team kit from a past member of the team. I don’t begin to understand how brands pick ambassadors, especially those that don’t charge anything to be an ambassador. I do understand many of the reasons why they don’t ask every members back, though.
Ambassador programs are great for the age group athlete. And for the companies that run so many of the well thought out ambassador teams. Among other things, the ambassador gets free and / or deeply discounted products and the company gets brand support and exposure from positive influencers in the sport. I truly hope they continue as I’ve been blessed to be an ambassador for so many of the brands that I love. Many of us are already members of local triathlon clubs but the ambassador programs give us an opportunity to be part of small teams that sometimes span the globe and include everyone from enthusiastic beginners to elite age group, professional and Olympic athletes.
But it’s not something that’s owed to any of us. I didn’t apply to be an ambassador until 2014, about 20 years after I started in this sport. I’ve only applied to companies that I believe in and already support. Some have extended me an opportunity to represent their brand and some have not. But I haven’t stopped supporting the brands that didn’t because they are brands that I believe in and ones that work for me. And I hope that I walk away with grace when and if I’m not invited back as an ambassador, if I loved the brand before then I most likely still do.
We put some big changes in motion at the end of 2017. Our home in Brooklyn was originally my Aunt Cathy and Uncle John’s home when we were growing up. We spent many days there as kids, everyday memories and special occasions. It’s where I sat at the kitchen table with my aunt and hand wrote the recipes that are so important to me. “Sit down and copy these. One day I won’t be here and you’ll be glad you have them”, she said. These pieces of paper are a treasure to me and each time I make Irish Soda Bread I remember that day, more than 50 years ago, as if it was yesterday. Holidays and every days. Random memories. Aunt Cathy always managed to put everything on the table hot. And that was in the days before microwaves. I have a warmer feature on my oven now and think of Aunt Cathy each time I use it. She also read the Enquirer, which was considered quite scandalous if you were Catholic. And smoked Lucky Strikes and drank scotch and PBR. And whenever we left she always said. “Don’t forget to close the gate”.
We ran into my cousin Eddie (Cathy’s son) on Fifth Avenue when Mary was around 2. We were living in an apartment on Marine Avenue at the time, in a third floor walk up apartment. He asked us to move into his home, he said he was there alone and he’d love to have us there. So we moved in.
So many firsts there for Mary, and for Bryan and me, and for Eddie. She was the first child in the family in our generation and that was so much fun. Visits from Santa. Friends sleeping over. Our first dog – Seamus. Tea parties with steam fitters and a very little girl. Parties to celebrate milestones. Birthdays. Bryan becoming a member of the New York City Fire Department. Celebrating just because we were young and stupid. Enjoying life in a backyard with a kiddie pool and Rick Astley. Eddie and I both said to anyone leaving “Don’t forget to close the gate”.
Eddie loved helping us with Mary. She still remembers her favorite meal – tomato soup (Campbell’s) and grilled cheese cut into triangle quarters. He picked her up at the bus and brought her to the babysitter every day. Dorothy is still there. And still watching kids in her home. Mary spent many a day in that little kitchen doing her homework.
I wish we sold to someone who would love the house and create a life there for their family. But we didn’t. It was bought by a business. And we lost a connection to family members of our own in the process. But maybe giving Chinese immigrants a roof over their head is a different kind of memory. My mother, Aunt Marion and Aunt Cathy were all immigrants. So I guess it’s life coming full circle. And they provided security for us. To know that you’ve left life better for your children than it was for you is one of my measures of success in life.
I’ve been thinking a lot about how many people I feel the need to say thank you to, and how many kind and thoughtful acts I’m so grateful for. Sometimes that’s overwhelming, as overwhelming as this entire journey has been. I can’t possibly list each and every single individual and I don’t want to even try to do that because I don’t want to hurt anyone’s feelings by leaving them out. I’m not quite sure that I have the words yet to say thank you adequately or to possibly explain how much each and every thoughtful message, gift, card, word and so much more I have received has really meant.
Every bunch of flowers brightened up my home and made me smile just a little bit more. I love fresh flowers and always thought if I was rich it would be the first thing I would do — have fresh flowers in my home all the time.
Every single card and note is a treasure. I’ve saved them all. We don’t do that much anymore — hand write notes to friends. The cards and notes warm my heart. I’ve saved each one.
I can’t even begin to list the gifts. The coloring books were great company when I needed to just sit and check out. And the comfy pajamas, wool socks, blankets, magazines, books, bracelets and more … each and every one is a reminder that for just one minute, maybe more, there was a lot of love in people’s hearts.
Friends, both new and old, dedicated their races to me. Some gave me their finisher medals. I treasure them as much, maybe even more, than my own. Cancer put most of my race schedule on hold for 2017. The events I did participate in were that much more special, and it was because of the support of family and friends that they happened.
All those things that made life for Bryan and for me a bit easier — meals, walking Brody, meeting me or even just offering to meet me for swims, bikes, runs, organizing Club events when I couldn’t make it, rides to New York, lunches.
There were the big things — like parties and vacations with special friends and with family. and there were the small things, like words spoken from the heart.
So many moments that come back to me when I’m alone with my thoughts, that’s when I cry. But not because I’m sad. Because I feel blessed. And I feel loved. And I know that I’m a better person because of all of this. And now I understand what I’ve heard other people say in connection with life-changing events in their lives — I wouldn’t change any of it.
The more I think about it the more I remember. And these are things that I will always remember. And it all comes back to a lesson I’ve talked about before, something I learned in a conversation with Sister Madonna Buder. I have my gift from God, which is the ability to help and inspire others. It’s my obligation to do what I can with this gift, to share with others who are going through this journey with cancer. I’ve learned a lot and continue to learn on a daily basis. I wish no one had cancer ever again but I’m thankful that friends and acquaintances feel they can reach out to me for advice, resources or just an ear to listen.
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.
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.
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.
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.
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.
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:
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!
Tomorrow 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.”
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.
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?
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!