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.
She prescribes it; I ingest it.
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.
Me: I have bleached bones. This new treatment feels like the Red Devil.
Donna: When you say “bleached bones,” what exactly do you mean when you say that? Are you in pain?
Me: 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.
Donna: But no pain, right?
Me: Correct, no pain. But I am bleached and my ribs are cluttered.
Donna: How are you today?
Me: 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.
Donna: Do you have any pain in your chest? Can you walk around the house at all?
Me: 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.
Donna: Do you have a fever?
Me: I don’t think so. Why would I have a fever when I am freezing cold?
Donna: Take your temperature for me.
Me: 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.
Donna: 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.
Me: Done. A doctor is calling back.
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.
Donna: 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.
I asked her, “Would you be willing to say yes to this, knowing exactly what saying ‘yes’ meant as I have described it to you?”
Even my recovery days sucked.
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.
These days scare me.
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 let’s slow down and try again.
This post was written and submitted by Julie Wilson. The article reflects the views of Julie Wilson and not of CURE®. This is also not supposed to be intended as medical advice.
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