Julie Wilson

Sometimes my communication style pushes against that of my health care team, and it leads to confusion and frustration. I am anecdotal and describe my experiences as a patient with an intimate insider’s perspective. I am on the receiving end of a recommended prescription that my oncologist has learned about from a recent FDA-approved treatment that is accompanied by a list of common side effects and statistics for increased life expectancy all provided by a pharmaceutical company.

Whereas I drive and speak with personal accounts of unfiltered raw emotion, my oncologist follows the recommended prescribed treatment protocol for dosage, pacing, watching for gross side effects and determining efficacy with a scan after the first three cycles of treatment. She is data-driven, conservative and follows the treatment recommendations as guided by rigorous clinical trials run prior to a drug’s approval. I am personal, an intimate account of real-time experiences.

The following is a thread of texts between me and Donna an RN, who is one of my health care support people. I met her when I was originally diagnosed with breast cancer in 2016, and she instantly became one of my allies and resources.

She helps me bridge the communication between myself and my oncologist as the need arises, as I face new side effects from treatments, and as I have questions about my history, my diagnosis, my fears, etc

She acts as a conduit for potential referrals to triage and helps facilitate appointments and communication with my ever-growing number of cancer specialists.

This captures a typical exchange of our communication. Clearly our styles are different, yet she sticks with me trying to figure out exactly what I mean when I say what I do.

 I have bleached bones. This new treatment feels like the Red Devil.

 When you say “bleached bones,” what exactly do you mean when you say that? Are you in pain?

 I sense a low vibration happening throughout my body. My bones are saturated with chemicals. I can feel it. Although I am not in pain, I feel completely stripped of any kind of nutrient or any kind of nourishment that will assist my body in making it through this second cycle of my newest treatment.

I am scorched, burned, tender, physically and emotionally drained.

 Correct, no pain. But I am bleached and my ribs are cluttered.

 My stomach feels a little like a hollow aluminum bowl. Not particularly comfortable. Metallic. My thoughts keep circling back to an overwhelming feeling of being full — full of bleached bones and cluttered ribs. My ribs are crowded, and it is hard to get a full, deep breath. They don’t want to expand completely. I don’t like the feeling at all.

: Do you have any pain in your chest? Can you walk around the house at all?

No pain. You say walk? I consider it more of a shamble. My insides feel burned.

Things seem to build throughout the day for me. I am more capable in the AM and then lose capacity throughout the day. Everything feels labored and hard. I have been really cold all day long — multiple blankets, electric heating pad, the house is set at 70 degrees and I have a space heater blowing on me. The last couple of days, I am having trouble regulating my body temperature.

: I don’t think so. Why would I have a fever when I am freezing cold?

 OK. I am somewhere between 101 and 103. We took my temperature three times. This surprises me. I have a fever, yet I am deep, down cold to my core.

: Oh, wow! That is a call to the on-call oncologist right now! Yes, you are cold, but you have a fever. Lady, call now. Don’t take Tylenol just yet. See what the doctor has to say.

It has been years since I have had to monitor for fever and blood pressure. I totally forgot I am supposed to monitor for fevers all the time. I forgot to reach out if I am prescribed something that drops my heart rate to 44, and I have kaleidoscope vision: the walls in my house bloated and the lighting distorted. I forgot I am supposed to notify someone when I have explosive bowels that lead to gut-wrenching cramps and a feeling like I am going to puke, hot water running down my cheeks when all I want to do is fall from the toilet down to the cold linoleum floor, its cool temperature pressing against my body in comfortable relief.

A fever never entered my thinking because I was so cold.

I was just white knuckling it and taking note of what I was experiencing as it was happening. Hating every minute of it, I was gathering evidence to share at my next doctor’s visit as a means for adjusting this new tortuous treatment. I forgot to pay close attention to my temperature because everything on this chemotherapy is disgusting and challenging.

Yep. It happens. Glad we know why you’re feeling so crappy. And, like you said, you haven’t had to deal with much of this for a few years. Also, when you’re “in it,” you forget some of the basics.

This was the night prior to me finding out I had COVID-19. COVID?!? I was attributing all my struggles to this new chemotherapy not even giving COVID a second thought. I had yet to get COVID and felt what I was doing must be working as I had successfully kept this deadly virus at bay. Needless to say, when I tested positive, it explained why I was feeling as if this treatment was skinning me alive or stripping me of my soul.

Yet, I could not help but think that my struggles moved beyond the last few seemingly endless days and nights of COVID. I knew with complete certainty that it was more than just contracting COVID. I reasoned I was not supposed to lose my hair nor was it supposed to thin, yet within the first two weeks of starting this new treatment, I had complete hair loss.

Now I sport a look of baby Yoda or a hairless cat — not really attractive for a human. No doubt this treatment has been really, really hard nearly the entire time since I have ingested it.

The next day when I saw Dr. B, I used all my words to describe to her what my experience has been like since starting this new treatment on Jan. 5. I shared my writing with her. I came in with thoughtful questions and some research I had conducted via the Mayo Clinic and AstraZeneca websites as well as through an app called Breasties. I came into my visit with a new plan that I wanted to try: one that included not entirely abandoning this chemotherapy, but one that I thought might still make my experience effective yet far more tolerable. Yet, as a lay person, what did I really know?

She stated we communicate differently and asked me to slow down and help her understand exactly what I meant.

So, I tried to express myself again, but differently.

This time I told her both cycles felt like I was being waterboarded, completely tortured. While I knew I was not going to die, I was going to be brought right to the edge of physical and mental execution. I experienced times when I could not breath, that I felt like I was being drowned, that I was desperate and trapped, completely exhausted. I understood the torture she was prescribing me would last only five days each month, and during the rest of the month, I would experience “recovery time.” However, after what I went through the last two cycles, I found five days were far too many. I lost myself utterly and completely with intolerable suffering on just those five days.

 be willing to say yes to this, knowing exactly what saying ‘yes’ meant as I have described it to you?”

This was the first time I actually saw a glimpse of understanding take shape on Dr. B’s face. She turned her head and looked at me, and then we began compromising. What was I willing to take for this next cycle, and what could she support? It is a hard line to walk and a hard line to think about negotiating changes in a recommended treatment plan when I fundamentally understand we are talking about my life or my death.

She reluctantly decreased my dose of chemotherapy by 20% and agreed to having me try weaning myself off the steroids by gradually extending my use an additional two days at 4 mg each day rather than going completely off a three-day consecutive use of 8 mg each day. When I drop the steroids completely, I experience the sensation of having plummeted off a cliff striking the ground, being sucked to the center-of-the earth-bottom-pit-of-hell.

In addition, before the next cycle on March 9, she wants me to get a PET scan to provide us with hardcore data that this treatment is indeed working. She is far more comfortable sticking with the recommended protocol than making any adjustments by lowering the dose, but the fact remains, I am not. I simply feel I cannot continue with poison at this level running throughout my body scorching all within its path every 21 days. I am hoping these changes help me through this next cycle. I am three days out from my infusion, and days four through six have been the most challenging during the first two cycles.

Granted, this switch in treatment plan at the start of the year was also accompanied with me having to take a new heart medication to safely regulate my blood pressure, with me having to complete 10 consecutive days of radiation on my spine, with me having to begin a new daily 20 mg prescription of a drug called Omeprazole for the severe acid reflux that kept me up for hours each night, and last with me having to endure getting hardcore COVID for the first time in my life. For me, COVID was nothing like minor allergies or the getting the flu as some people describe. My experience was nightmarish.

However, maybe, just maybe. I have it all dialed in now.

Communication styles can completely hinder the relationships we have with people. They can lead to frustration and confusion. Yet, when it comes to the relationship that I have with my oncologist, it becomes imperative that we find a way around any barriers. I can’t give up. Nor can she. It takes time, persistence, clear, candid expression of understanding and my right to demand knowledge as to why suggestions are being made.

Patients are important partners in navigating complex decisions about life and death. I rely on and respect Dr. B’s expertise and approach to caring for me, but I am more than the data she reviews on her screen. I am more than a statistic that should react in a similar, predictable pattern easily comparable to others that agree to this plan as well. Just like cancer, there are no guarantees that a treatment will work, nor what side effect each person will experience while undergoing the plan.

Moving from one treatment to the next and navigating all the side effects that come with each switch, takes a great deal of trust on both our parts. Cancer treatment is not easy and to land on the best outcome takes willingness to share, to listen to one another, and to follow through with an agreed upon plan.

Dr. B is working to keep me alive, and I am working to have my life move beyond quantity of days to days of quality as well. It takes time to figure out exactly what we mean when we say what we do. Oftentimes she communicates in Latin and medical terminology that flies above my head. Her language and use of communication is far more objective than mine. And me? I communicate through words using description and figurative language to create images in my reader’s mind my communication style far more subjective than hers.

Hence the oft repeated question on both our parts, “So, what exactly do you mean when you say that?”

 and not of CURE®. This is also not supposed to be intended as medical advice.

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My doctor and I have different communication styles, though it is extremely important that we understand each other. 

Patient-Provider Communication Styles Affect My Cancer Experience

In January 2016, my then oncologist swiveled in his stool, looked at me and said, “So we have this clinical trial that I believe you would qualify for…” and I looked at him like he had completely lost his mind.

This conversation took place right after the “staging of my cancer,” right on the heels of me receiving the results of a PET scan which lit up like a Christmas tree and brought my sisters, my husband and me to our knees. I was stunned.

I thought to myself, “Is he kidding? What kind of madness is this? I don’t have time for 

Cancer…what he had identified as stage 4 breast cancer, spread throughout my entire body, and he was suggesting I had time to experiment. He was offering me a trial. Cancer was busy feasting on my bones, knocking on my liver, clawing its way into my right lung, and he was offering me a trial. Unbelievable. At this time, his words suggested to me he believed that as a stage 4 cancer patient, I was no more worthy than a lab rat, a thing to be poked and prodded, injected and observed, a mere source for investigation.

The wind was knocked from my body, and I sat slumped on the chair.

When the word cancer became a label fixed to me, the diagnosis was quickly followed by the adjective metastatic. Metastatic breast cancer and participation in a clinical trial meant nothing more to me than an expedited death. It meant I had a 50/50 chance of receiving a placebo which would result in even fewer days left to live. Consenting to participation in a clinical trial meant the health care industry was not interested in caring for me but was only interested in experimenting on me.

I had outlived my value, and this oncologist was merely reinforcing what I thought I knew.

My imagination and ignorance inspired vivid pictures of the entire process in my head.

“Surely,” I heard him thinking, “with the little time you have remaining, you must be interested in contributing to finding a cure?”

I pictured myself alone, propped in a hospital bed as white-coated clinicians scrutinized my reactions to random medicines, injections, and pills, diligently making notes in their files. A mere test subject. Someone whose value lie solely in what my body could tolerate in terms of cancer treatment in its last few months of life.

To him I was expendable — a mere curiosity. I had lived my life and now should give back to society in the form of research. I was stunned, petrified and completely insulted. Being newly diagnosed and having just met this new-to-me oncologist, we did not know each other; yet, he had the audacity to talk about my life and whether it had any value left in it. My consent to a clinical trial meant contributing to research that would most likely torture and ultimately kill me in a very short time.

His query ignited pure, appalling panic deep within the folds of my amygdala.

I turned to him and boldly exclaimed, “Hell no, I am not interested in any clinical trial. You just explained I have stage 4 breast cancer that has spread throughout my body! Clearly, I have no time to waste with trials!” I gestured to the evidence of fluorescent, glowing lights all over my scan. I had to act fast and wanted the most direct, aggressive line of treatment he had to offer.

And the only treatment I knew of was drawn from movie scenes where the protagonist never left the hospital… chemotherapy slowly dripping from a clear bag. Grueling, scary vomit-inducing chemotherapy. Yet, I wanted it for it was the only answer. I was ready to guzzle a gallon of it right then if that is what I had to do.

“Let’s get on it. I want to start tomorrow.”

And the next day, I began my first line of chemotherapy “fondly” called The Red Devil (and boy was it evil).

Fast forward seven years, and in the words of Cher, “If I could turn back time/If I could find a way.”

“What I know now, but did not know then” i

s my reaction to the words “clinical trial” was driven by blind fear, panic and complete ignorance. Clinical trials meant chance and risk. They meant blind experimentation. I knew I did not want to die, and I felt desperate. I was petrified. I had never broken a bone, let alone sprained an ankle, and here I was having the worst conversation in my entire life with an oncologist who I had just met, a complete stranger, and I did not want to die.

Had I chosen differently…well, what is the point in that.

Is that access to clinical trials mean access to a process that is highly regulated, highly innovative and highly personal. While standard, approved lines of treatment mean my insurance will cover the cost, the cost is oftentimes very large. Conversations end up revolving around quality versus quantity. Gains versus losses. A good balance of the treatment requiring a heavy lift without a complete crush; treatments that are effective as well as “tolerable” for the patient.

“Tolerable”… oftentimes I wonder if the word means different things to me and my oncologist.

Whereas clinical trials mean access to the latest and greatest medicines, access to treatments that are research-based and targeted to the specific way my cancer genes mutate and express themselves, the side effects of standard forms of treatment are weighty and debilitating. What I know now is oncologists can test blood for specific, drilled-down genetic mutations to help determine the most effective form of treatment for each person. Treatments are becoming tailored to the cancer mutation rather than the cancer type. Clinical trials mean innovative treatments that are often the least invasive and a far more gentle form of cancer care.

On May 13, 2022, through the support of the South Sound CARE Foundation,

 I was given the opportunity to participate in my first clinical trial — a targeted therapy that is highly regulated, highly innovative and highly personalized. South Sound CARE Cancer Foundation works on behalf of patients “matching” them with clinical trials, a team who petitions pharmaceutical companies, the FDA and the Institutional Review Board with the goal of finding new treatment plans that can prove both effective while also landing a far softer punch than any standard form of treatment.

Nothing remains the same for long, and in the practice of medicine, change is inevitable. The research being invested in cancer care and being part of the process of change while gaining access to new treatment opportunities is now what clinical trials mean to me.

When my oncologist asked if I was interested in a clinical trial, at first I was appalled. 

Julie Wilson

Patient-Provider Communication Styles Affect My Cancer Experience

Cancer Clinical Trials: If I Knew Then What I Know Now

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