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.
Who rescued who?
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.
There are two people that I bring with me to each treatment — my mother (who passed away from cancer 43 years ago) and my Aunt Marion (who passed away from old age 6 years ago). The earrings are a gift from my mother from a trip she took to Amish country not long before she died. The Blessed Mother holds holy water and my aunt had this by her bedside until the day she died. Putting on the earrings and blessing myself with the holy water has become a habit that brings me some comfort and peace each time I visit MSK.
Treatment number 4 was completed this past Tuesday, the day went very smoothly. Bloodwork came back with pretty much the same low red blood / hemoglobin numbers. Nothing that warrants withholding treatment, thank God. There has also been a drop in my thyroid numbers, so an appointment with endocrinology is pending. This coming Wednesday I have a CT scheduled that will hopefully show that my tumors have either shrunk or, at a minimum, stopped growing.
Wednesday brought more good news. My three month follow-up visit with my hand surgeon showed that I am fully healed and cleared for full activity. I haven’t been particularly good about working out but I will keep trying to regain some fitness.
Friday afternoon I got an unexpected phone call from Dr Traina, my chemo oncologist with some surprise news. Bottom line, the cancer in my lung is not metastatic triple negative breast cancer but rather a new cancer. Non small cell lung cancer. And now it looks like my treatment plan will be changing. Next week will bring more information. And hopefully a better understanding of whether this news is good, bad, or the same. It’s frustrating, after the battles to get this treatment and study participation started it’s going to change but I certainly want and need the treatment best tailored for my cancer. I’m grateful that Dr. Traina kept asking that the testing continue until there was an answer.
“I was notified by molecular pathology today that 3rd attempt at Moira’s IMPACT testing was successful and represents a profile more consistent with a non small cell lung cancer. It specifically does not match her 2017 path from TNBC primary in terms of clonality.
“I have discussed with Dr. Rubin, Service Chief of Thoracic Oncology Service and arranged for an expedited visit with TOS at Monmouth next week. Discussed with Study Pl, Dr Robson who will report to KEYLINK sponsor and we will remove her from study treatment. Plan to complete CT CAP as planned next week and keep her visit 9/21”.
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!