Marcie’s Passing

On July 17^th, after much pushing from me, Marcie went to see her nurse practitioner for a cough that wasn’t resolving. Late that afternoon her provider called and told us her CT Scan showed stage 4, metastatic, lung cancer. On the  morning of July 28^th, she passed away, with one last easy breath. She was in our living room with our two children and her sisters present. Yes, you read that correctly, eleven days from diagnosis to her death.

Did she know she was sick? Probably. Why didn’t she say something?

Six days before she died I asked her that. She told me she felt so “stupid”. She didn’t expand on her statement but I assume she was ashamed she hadn’t stop smoking her cigars as I’d often advised. She may also have been alluding to not going to see our nurse practitioner sooner. She apologized. I told her I forgave her.

I’m guessing that at some point, once she knew she was sick, she decided she was tired of doctors, tired of the complications that resulted when she saw them, just tired of running back and forth between so many appointments. She had said to me about a year ago, for a reason I don’t remember, that she wouldn’t go through chemotherapy the way her sister had.

She may also have sensed that by the time she realized how sick she was, she knew nothing the doctors could do would make a difference. Why spend the last month or two of her life feeling awful.

I believe she also kept it to herself to protect me. She wanted to make one more trip to Cancun and to keep me believing it would happen. She’d done this before when she tore her rotator cuff. She minimized the pain and didn’t get it checked out before we went on vacation so we wouldn’t have to cancel the trip.

Did I suspect? Only in the last couple weeks. I noticed subtle changes in her behavior but not enough to suspect end stage lung cancer. I chalked up many of her symptoms to the high heat and humidity, which always impacted her breathing. After all she was a cigar smoker.

I’ll never know exactly why she didn’t do something sooner, but in many ways it was a blessing. She died exactly seven days after she saw her specialist for the first time. He wanted to do three more tests before deciding on a treatment plan. He expressed the belief that the new immune therapy approach to treating lung cancer might allow her to live three to four more years. He said he needed data from these three tests to guide him in selecting a specific therapy for her type of cancer. Boy was he wrong. At least he didn’t have the opportunity to suggest subjecting her to any awful drugs Marcie and I would then need to fight him to refuse.

I make this last comment because her doctor never mentioned the option of doing nothing, of using only palliative care and hospice. Despite an advance directive saying she didn’t want extraordinary measures at the end of her life, he never mention the possibility her death might be eminent or that she had a choice in how to proceed. I was in shock and things moved too fast for me to advocate for her. Her physician had successfully kept my hope alive that there would be time later for these discussions.

I’ve seen minimal mention in the literature of those who are transgender facing end-of-life issues. Thus much of what I say here may have little significance for those with a transgender spouse. My hope in writing this post is that someone with a family member or friend going through a cancer diagnosis can benefit from our experience.

If I had it to do over I would have brought someone with us to Marcie’s first appointment, someone who knew her wishes and would have advocated for her. This would have taken some of the burden off of me.

I needed a push from someone on her side to say “stop”. You haven’t answered Cheryl’s questions about life expectancy. Yes you will get more data from more tests, but how will that change your differential diagnosis? What is your best guess at this point for the success of immune therapy based on other patients you have seen and the CT Scan? You say some people live three to four years, define “some”.

I later found a couple of studies that reported 10 – 20% of people respond well to immune therapy, which is often better than the response rate to chemotherapy. However, even 20% would not have been a high enough success rate to elect treatment. I’m not sure Marcie would have accepted the risks at  50%.

I would have wanted someone to ask, you are saying people tolerate immune therapy better than chemotherapy. Define “tolerate better.” I later found one study in which 30% of the patients receiving immune therapy stopped because of side effects, side effects different from chemo, but still unpleasant.

In retrospect I wanted someone to say for me “you haven’t discussed all options. Does Marcie need a bronchoscopy, or a PET scan, or an MRI if she wants palliative care only? Please leave the room so we can discuss what you have said in the context of Marcie’s desire for quality of life over quantity and no extraordinary measures.”

This has been a sad post. I want to end it with a more uplifting message. In the days immediate after her bronchoscopy, while she waited for test results, (which her doctor never saw), she held on to the hope she would see Cancun one more time. She even took the time to carry through with an appointment I’d made for her to have a professional photo shoot. Having pictures of her new female self was an important item on her bucket list. She never got the chance to see the photos, but her family and I have them to remember her by.

In memory of Marcie:

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This post was created by a human, without the use of Artificial Intelligence.