Just a Plot Twist

Not the Epilogue.

Photo by Amaan Ali on Unsplash

So, I am thinking about breaking up with my oncologist.

I don’t know when or how it will happen, but the idea is becoming more pronounced in my life. Yet, I am hesitant, and I am scared.

My last meeting with her did not go well.

Monday, May 20:

Ah, yes. I remember it well.

She was late.

She is always late.

When I say late, I mean like over an hour, maybe even leaning closer to two hours late. This is normal. I have come to mitigate this issue by requesting virtual appointments. In this way, I avoid the irritation I experience as the minutes tick by. Instead, of being isolated in a small, sterile, silent room, I am at home. Instead of resenting the fact that I am doing nothing and thinking of everything, I am at home doing nothing and thinking of everything…or not.

Instead of being There, I am Here.

There is not particularly comfortable, and I am There too frequently. I much prefer Here. Nestled in soft, warm clothes, no bra, and accompanied by snacks and music. I can read, listen to podcasts, write, nap or sit beneath a blanket in my aging, brown recliner.

Here is a much nicer place to be.

Yet it is not her egregious tardiness that brings me serious consideration about leaving her behind… unbelievable as that may seem. It is her egocentric nature that seems to be growing rather than tempering the longer I am with her. I feel our relationship is one-sided, unbalanced, unfair and that is putting a strain on me. She is in charge and as long as I am agreeable, things go well. I can ask questions, and she answers them; however, I have this nagging feeling that she does not really care much of what I think nor what I want. She has an unrelenting dismissiveness and stoic decisiveness that is bothering me.

I wonder…

is this characteristic of hers increasing or did I merely fail to see it before?

Am I growing more confident in what I know, who I am, and what I need when it comes to my overall health? As the days turn to months and months to years, and my body keeps stepping up to the plate and somehow getting me on base each and everytime, am I the one changing while she remains the same?

Perhaps the trouble began when I began exploring alternative treatments…she hates them. I was not thinking of replacing her recommendations but rather bolstering my body’s ability to handle all that was being tossed its way. Even after seeing a naturopath she recommended, she was disagreeable with his methods (see The Clash of the Titans).

Go figure.

Today, when I mention or ask her about any alternative treatments, I see the hairs on the back of her neck bristle. But, as recommended, I always consult with my medical team before I try anything new. She knows all that I am doing and when she opens the conversation as to how I am feeling, I am honest. I am feeling good, and I believe this is due to the investment I have in my care holistically. She shows little tolerance for these topics of conversation.

Yet,

I do feel better.

I look better. I am better. Deep down, I know that I am. But it requires effort on my part to trust myself and believe myself when I express these truths. I wonder, am I telling the truth? When I am speaking to a doctor who tunes me out, and makes me feel as if my conclusions are really inconclusive, I start to think maybe I am making all of it up? That my changes are not changes at all.

For really… who am I to know?

I am not a chemist, a biologist, a medical doctor, and she is…so therefore my default is she must know better than me. She knows my body better than me? Wait. What? Lately, this experience is not resonating with me as much as it used to. It makes me uncomfortable. I know that I have been programmed to believe she knows more about the care of my body and what it needs than I do. Afterall, she is a doctor. So rather than a partnership, I should merely concede to her authority.

After seeing the naturopath she recommended (oh the irony. Why in the world did she even go there when she believes in NOTHING he recommends or practices?) I am taking a daily, high-quality multivitamin and have been routinely driving to Olympia each week and filling my body with two infusions: Alpha Lipoic Acid and Myer’s Cocktail - one designed to counteract the effects of my neuropathy and the other to bolster my system with vitamins and minerals. I have been going to the naturopathic clinic since August - right after my psilosybin trip (maybe the mushrooms are to blame).

The result: my hair is growing when it should not be. My nails are strong and unbreakable. I sleep relatively well. I have good energy. I am able to do rather than just be. Am I Benjamin Button? Absolutely not. However, I truly believe that I am better because of the natural infusions I get each week. Yet, when I share this with my Western practitioner, she is quick to dismiss my ideas and becomes very frustrated with me. Perhaps I should throw the question back at her when she opens our next appointment by asking me how I am feeling.

I will turn to her and query, “I don’t know. How am I feeling?”

I think she may be more satisfied with the answer.

I walked away from my appointment on May 20 with feeling things were beginning to go sideways between us. I felt unheard and unseen. It did not matter what I reported nor how I responded to her recommendations, I was invisible. She was going to win no matter what, and I was taking an inordinate risk if I did not agree with her recommendation. She went as far as telling me if I did not choose to increase the dose of my treatment back to 100% (see Sadness and Garbage Days - samplings of what 100% means to me), I was choosing a shorter life. She asked if the quality of my life was worth that cost.

Talk about a weighty statement.

Yes, a statement not a question.

She was not open to dialogue despite my reporting feeling and looking better than I have in a year. My anecdotal evidence is of no consequence to her. She countered with my hair growth being a concern rather than something to celebrate. My increased energy, decrease in body inflammation and irritation, and overall feeling of well-being certainly could not be attributed to any of the naturopathic options. “Collagen?” she threw up her hands and said, “Enough with this naturopathic stuff. No. Absolutely not.” In fact, she questioned how I knew those treatments were not responsible for getting in the way of the effectiveness of her recommendations.

And the fact is

I don’t.

May 16 I had a PET scan. Four days before I saw my doctor, I had already read the results. My weekend was fraught with concern over what I had read. The scan showed one spot on my left hip and one on my lower back that appeared to have doubled in size when compared to the prior scan. My fear began to smoulder. The rest of my body was clear. Nothing in my brain. Nothing in my liver, heart. Nothing in any of my soft tissue or organs. While this was good news, I could not help but focus on those two damn spots.

How can it be back?

Afterall, I thought I was feeling better.

The morning prior to seeing her, I listened to an episode on a podcast called My MBC. The host interviewed an oncologist about bone metastasis and PET scans. Timely. He stated, “It is really hard to completely determine whether any changes to bone mets registered on a PET scan is progression of disease or progression of healing.” This is exactly what I needed to hear. If this is true, would we really know whether or not the conclusions reached by the technician at the bottom of my scan are accurate? Maybe my body WAS doing as good as I was feeling? I really wanted to believe. I wanted to believe in myself and my intutition. My labs looked nearly perfect. My tumor marker up just a couple of points.

Yet, when I saw my oncologist on Monday morning, she used the evidence presented from my PET scan as evidence of the potential failure of my treatment. Time to leap into the fire once again. She proposed my treatment’s failure was possibly due to the hydration therapy. Her recommendation was that I immediately increase the dose of my chemotherapy back to 100% (I had dropped to 85% due to the harsh side effects) and then we will do another PET scan at the end of August.

The cycle of torment continues.

I countered her decision with the information I heard in the podcast. Maybe we were jumping to conclusions too soon, and I did not need to have a sad summer - bald and weak. She heard the question and defended the conclusion of the technician with something else. Admittedly, she has a very heavy accent and much of the medical terminology is gibberish to me. And when I said, “But 100% means I lose my hair again. I don’t want to have to go through that again. 100% means I go back to more bad than good days throughout the month. 100% means I lose myself again. I have come to depend on and enjoy feeling better. I don’t want to do that. Can’t I just do this for a little while longer?”

And she stated, “If you choose less than 100%, you are choosing a shorter life. Hair means nothing. When I get soft with you. Bad things happen.”

The fear that was smouldering, ignited.

I found myself feeling more like an observer rather than a participant or a partner in my healthcare. My quality of life means nothing to her. This decision was definitely hers while the consequences of her decision were all mine.

I conceded to a treatment that I did not want to do.

I agreed, because I was afraid.

Fear has a way of making me doubt and question myself.

Since May 20, I have had three chemotherapy infusions. Despite her recommendation, I did not agree to 100% when my butt landed in the chair. I took one dose at 85% and the last two at 90%. I continue my daily supplements and weekly hydration therapy. I still have my hair, and I still have my mind. I feel good about my choices, but then I think, “Do I really know what I am doing?”

What if?

The relationship I have with my oncologist has become complicated and dysfunctional. I respect her, her reputation and her expertise, I truly do; however, I feel she displays a true lack of respect for me and what I bring to the table. There was a time when she used to see and hear me more than she does now. Or did I merely think she did but the reality is when I aligned myself with her, we got along just fine. When I began to change, our relationship began to as well. I reflect back on these interactions with her and her known reputation in the field, and it makes it harder to walk away.

I am a person not a disease. My care should be patient-centered rather than disease-centered. I need her to hear me when I say by choosing to increase the quality of my life, I am not choosing to live less. Rather, I am choosing and expecting to have a better life and still hit year 87. Having both does not feel unreasonable to me. Yet, I understand and know with 100% certainty that my doctor wants and expects me to trust her more than I trust myself.

Afterall, she is the doctor, and I am not.

Do I want to break up with her? I used to think I loved her. I used to think she loved me. But maybe her love for me is conducive to the times when I am obedient. Maybe her love for me is dependent on the times when she calls all of the shots and ultimately makes the final call.

Maybe her love for me is based entirely on her and really has nothing to do with me at all.

Maybe.

Right now I am hoping this is merely a twist in the plot of my story rather than the epilogue it feels to be right now.