moirahoran

Things have been changing very fast here. Last Tuesday I had more lab work done in the morning, two Telemedicine visits with the research nurse and my breast cancer oncologist to end my participation in the study and then a trip into NYC for a PET scan. I definitely have non small cell lung cancer either stage 3c or stage 4, most likely adenoid but undefined. Which one it is will determine my final treatment plan but we’ve started treatment as if it is stage 4 so things could get rolling.

My first treatment was this past Saturday morning and things went smoothly. Two of the drugs I was already receiving as part of the clinical trial — Carboplatin and Keytruda (Pembrolizumab), new drug is Pemetrexed. A bit more steroids in my infusion and for two days after. I will have a treatment once every three weeks, after four treatments I will have another CT scan to see if tumors are continuing to shrink.

That’s the “facts”. The emotions are a different thing. Last Monday Bryan and I had to make the difficult decision that it was time to let Brody cross the rainbow bridge. His dementia was to a point that he had no “good moments” in a day. It’s a huge physical and emotional hole in our lives.

My current situation? I’m still trying to figure out how to deal with the facts. I went from training for my 13th Ironman at age 65 to that same 65 year old who’s life has been taken over by medications, doctors appointments, tests and the fear of catching the common cold.

I’m overwhelmed with gratitude by the support and thoughtfulness from so many friend and family. The flowers, cards, treats and more are so appreciated by Bryan and me. Thank you, from the bottom of our hearts.

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!

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!

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.

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:

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?

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.

Google search metastatic triple negative breast cancer. Or maybe don’t. I don’t want to be strong, or an inspiration. A very long treatment regimen is starting August 10.

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

Here’s to the next six months.