No Surrender, Revisited

I am grateful to wake up this morning with treatment #3 behind me. Several times during the 6 hour delay I wanted to give up, I want to go home. Then I thought about how many hours I had already invested and didn’t want to give that up. I knew if I left with all the unresolved issues I’d have no guarantee of getting them solved. So I insisted the pharmacy and the staff keep going to get the roadblocks cleared to get my treatment started. And I woke up this morning feeling like I crossed the finish line of an Ironman!

Morning Mood

Here was my appointments for the day: 9:30 Lab Visit; 10:30 AM Telemedicine Visit with Research Nurse; 11:00 AM Telemedicine Visit with Nurse Practitioner; 11:30 Treatment. Besides issues with the telemedicine system (system was down) we got thru the first three scheduled appointments. Although I have some low numbers connected with red blood cells I was cleared for treatment, all orders were already in. I checked in again near the treatment area to check if there were delays and was told there was not.

And the 6 hour delay began. I am not unreasonable, I do understand that issues come up and sometimes there are delays. After waiting 45 minutes I asked one of the staff from treatment if they could check on my status. She checked my wristband and said yes, she’d be back. I never saw her again. I waited another half hour and walked halfway across the building to a service kiosk to check again. The woman called treatment and after a few minutes she told me there was an issue and someone would be out shortly to let me know what was going on. 15 more minutes and nothing. Someone came out for another patient and his time I stood up, stopped her and said I need answers and I need them now. She said someone would be right back, and she was. I was brought to s treatment room almost two hours after my scheduled appointment and the first issue was explained to me. Understandable – one of my numbers raised a red flag on my dosage of carboplatin and it took two hours of phone calls and emails to clear my dosage. I blame the length of time on people working remotely and the need for constant phone calls, messages and waiting for call backs. And the lack of communication to me had my frustration and stress level in the red.

But, I’m in a treatment suite and we are cleared to mix my drugs. Should only be a few minutes. It didn’t take long for me to realize things weren’t going as planned. All good with the carboplatin and the gemxitabine (which I had received in treatment #2 at Monmouth). Red flag on the pembrolizumab, which is the immunotherapy drug. Seems that Monmouth was not “authorized” to dispense. It took four hours to get it through all the red tape. It took multiple phone calls, emails portal messages, every manager and more! About two hours into the wait I started thinking I’d just go home, let them work things out and then come back the next day to finish. Then I thought about how many hours I had already invested and realized I couldn’t just DNF. I hadn’t accomplished the primary goal of the day – get treatment! I think the nurse manager snd the pharmacy manager were a bit surprised but I knew I had to keep my foot on the accelerator.

They did keep me informed and shortly after 5 PM the pharmacy manager came back and said we did it and they were s out to finish mixing my drugs. Pre-treatment drugs started, snd just before my nurse finished her shift at 5:30 she had the carboplatin running. By 7:20 PM we were done and I headed to the parking lot. There was only one other car there.

This song helped me get through the day, as borrowed from Seth Avett’s helloclove Instagram. Thank you!

Gimme Peace – Learned from Tom T. Hall’s 1978 record: “Places I’ve Done Time” written by Tom T. Hall.

My Soul Mate

Back in March and April of 2017, when I was first diagnosed with cancer, this was the guy I would hold close and cry to. And he just sat close and let me cry. Four plus years later, he’s old and struggling and I can’t put my burden on him. But I can still hold him close.

Fatigue, and COVID Confusion

I know my body. And know how tired I should be based on what I’ve done. I’ve been doing some gentle “movement”. Can’t really call it working out. We went to a very small farm market on Saturday and then lunch. I came home and laid down about 3:30 and pretty much stayed on the couch then went to bed and slept till 7:30 on Sunday. Sunday and Monday has been pretty much a repeat of the same.

I had my second treatment on a Thursday and was a bit surprised to see my red blood cell levels had tanked so quickly. Not enough to stop treatment so that was a good thing.

I reported this to my “research nurse” today and she said it’s to be expected. As long as I feel better after resting then all is good and no reason to stop treatment. I can rest when I’m tired, no problem there.

Here’s where I am having trouble, though. Last week whenever I signed into my MSKCC portal, I got the following message:

Vaccine

So I asked. And was told yes I qualify and a third vaccine is scheduled for the day after my next CT scan. I asked for an antibody test first. And here’s what I was told:

“Hello Mrs. Horan
This is Tetiana, a covering RN
I am sorry, but we do not perform Covid ab testing at MSK, neither it can provide us with the reliable information whether you developed immunity after first 2 vaccinations.
Once you got the vaccination, it is assumed that you are immune, even if your ab are negative.
Yes, you are eligible to get your 3rd booster dose at MSK
And yes, it would be the same vaccine you had in past.
You would need to send us a document proving that you were vaccinated , with what and when.
You can do it via the patient portal
Once we have it, we can work on scheduling your 3rd shot
If you have any questions or concerns, please do not hesitate and reach the office
Stay safe and have a nice day!

So besides the fact that English is not this persons first language, and I already provided proof of my first two vaccines, how would you feel about a third vaccine?

We Have A Plan, Part 2

It’s been a bumpy few weeks, my last visit with Dr. Traina was on July 6. Trying to get everything in line to get me enrolled in this study has been challenging at best. Downright frustrating mostly.

But the overwhelming cloud throughout for me has been — I have triple negative metastatic breast cancer which has emerged in my lung, lymph nodes and adrenal glands. And that scares the crap out of me.

Yesterday was more CT scans in Middletown and today was extensive bloodwork, EKG and vitals followed by a visit with the research nurse and Dr. Traina. We will start the first clinical trial treatment on Tuesday, August 10. My port is a blessing.

Here’s the simple explanation of the plan. Three week cycles. Day 1 is two chemo drugs and one immunotherapy drug. Day eight is two chemo drugs. Day nine through day 21 is “off”. Repeat 6 times, maybe 12 times. So that’s 9 months. 24 chemo / infusion treatments. And maybe there will be no side effects.

And maybe this will work. I’m scared more then I have ever been in my life. (See my previous blog post that I didn’t share). It’s not about how strong I am. Or how much I’ve inspired anyone. That matters when I’m dead.

It’s Been a Week

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.

Alien device is in!
Healing well.

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?

Everything Happens for a Reason

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.

Six Months and Six Months and Six Months . . . (Spoiler alert — there is a happy ending)

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

Here’s to the next six months.

Ohana

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. 

Red Is a Fast Color

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.

PS. I love the 2019 Coeur Sports team kit!