Monday I had to go for (another) covid test before Tuesday’s procedure, and the first of 3x / week physical therapy to get my wrist moving. And a visit to a local dermatologist to check something on my lip. The “you will feel a pinch” was more like a Mac truck hitting my lip. Tuesday I headed up to MSK Monmouth for a pelvic ultrasound, which was very extensive and had me very worried about just how far things had spread. Then I proceeded to the second “procedures” floor to wait for the surgery to implant my port. It will make the potential of 24 chemo / immunotherapy treatments and just as many if not more blood draws much less stressful, but the alien body in my upper right chest is a constant reminder of what’s going on.
Wednesday morning I got a call from the dermatologist to let me know the spot they biopsied came back positive for squamous cell cancer and should be removed. Of course. They had an opening on Friday at 10.
Wednesday afternoon was more hand / wrist therapy which is quickly becoming my highlight of the week. My therapist, Andrew, says I’m making good progress. I will be happy when I have full use of both arms again and no brace! My favorite call of the week came from Nicole with my oncologist’s team calling to let me know that the pelvic ultrasound showed all clear.
So, fast forward to my Mohns Procedure at the dermatologist on Friday at 10 AM. I was ready for the pinch that felt like a Mac truck. What I wasn’t ready for was going back a second time to get clean margins and leaving like this. Thank God for wrist therapy this afternoon but so disappointed about missing tonight’s caviar and vodka dinner! Rain check, Ran?
Four weeks ago yesterday I set out on a 6 hour ride with my dear friend Ran, as part of my training for Ironman Lake Placid — my 13th full distance Ironman. Not sure if I should consider 13 as lucky or unlucky. An hour into the ride we were in Long Branch and turned to the ocean, something I’ve done more times than I can count. I’m not quite sure what happened but one minute I was enjoying the beautiful day and he next minute I was on my back on the ground. Ran wanted to call my husband, I said call 911. Fast forward to the emergency room – turned out I had an open fracture in my left wrist which required surgery and apparently any surgery requires a routine chest X-ray.
On Friday morning the surgeon came back to fill me in on my surgery (a 15 cm plate and 10 screws) and he mentioned he saw something on my lung. Since I had a history of cancer he suggested I follow up promptly with my doctors at Sloan Kettering. I did that the same day. Fast forward through lots of tests, turns out my cancer is back. Recurrent. In my lung and in my lymph nodes and some other “suspicious” spots.
I’ve still got lots to work out, and my medical team is very positive they can arrest this. I’m getting a port on Tuesday. Chemotherapy treatment starts maybe the end of July. A long haul that could go through the end of April.
So, send prayers and good wishes. TNBC sucks. And thank you God and my mom for shoving me into that barricade. I still have no symptoms.
My leash to Sloan Kettering is still pretty short. I have follow up mammograms, sonograms and appointments with my chemo oncologist and surgeons office every six months. I’m 2 years and 8 months out from my surgery. Six months ago my mammography result was “Probably benign. You should have another mammogram in six months to see if there are any changes”. As I got closer to this six month follow up that report came closer and closer to the forefront. And the worst case scenario happened. “Suspicious. There may be a tumor in your right breast. We recommend that you have a biopsy”.
So – can I have a biopsy today? No.
And here’s what I have a hard time wrapping my head around. My options were a one week wait for an appointment in NYC. A two week wait for an appointment at MSK Monmouth and a one month wait for an appointment at MSK Basking Ridge! Not just about the wait but the fact that there are that many people needing biopsies. What the f*ck is going on???
The next hit on this parade … a stereotactic core biopsy. Look it up. All I’m going to say is, not fun.
Fast forward. The week’s wait passes. I alternate between being positive because the size hasn’t changed in six months (my cancer was grade 3 / fast growing) to fatalistic. Recently I’ve had a good acquaintance die, another enter hospice care and heard about far too many new cancer diagnosis among people who have led healthy and active lives.
Fortunately the predicted 3 to 5 business days for results ended up only taking two days. Late Friday afternoon my phone rang. Answering was difficult since I was holding my breath. Results … benign! “We found calcifications and changes due to treatment and surgery. We are satisfied the results are correct”.
I hate that cancer has such a place in my life. I love that I have such wonderful friends and family who are there for me. Retail therapy and sushi are wonderful distractions
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: