One thing I struggle with is waiting. Today I mapped out the last 14 days with my symptoms in an excel doc. Some have said that symptoms from chemo cycle one will mirror chemo cycle two (which begins April 13). I understand that with each cycle, symptoms will be more cumulative. At a cardiology telehealth appointment this week, the doctor said, "We are poisoning you" when we talked about possibilities of heart damage (doesn't seem highly likely, but is still possible) and managing mental health with my go-to option of movement. I mapped out the past 14 days in case it can help me prepare for round two. I want to be able to see what coming, even though I know that is an unhelpful expectation because nothing is predictable.
I ordered two headwraps to be prepared for when I lose my hair. The moment I have hair in the shower drain or on my pillow, I will shave my head. I want to be prepared. I want to know I am prepared. And I don't feel it. I feel so much resistance to the idea of losing my hair. It will make it so obvious that I am going through cancer. Even on days like today, where I feel overall well, there will be no denying that I have cancer. Right now, I can blend in. My work and family and close friends now. Soon, it will be unavoidable in every grocery store aisle. The port made cancer real because it was the first cut. But hair is so personal. So unavoidable. And regrowing hair? Honestly, I imagine Lord of the Ring's Gollum with his bald dome and intermittent stringy hairs. I can do nothing to prepare myself to lose my hair because I don't think there is anything I can do to avoid how hard this will be. Eyebrows and eyelashes, possibly, too. Of course it will grow back, eventually, but I am not optimistically framing this in any way.
I feel off as well because my work lifted our required medical mask standards for my building. Now, if a person is fully vaccinated, they don't need to wear a mask. Based on CDC guidance and COVID numbers and et cetera and et cetera. But before this, work felt safe. Now, I just feel deflated. My plan in working on-site already was to avoid any 4+ person meetings and work predominantly from my office. This would still allow me that beautiful connection to the good people I work with. If I needed to be in any event or room with multiple people, I'd wear an N-95. But I am already tired and have hot flashes so an N-95 isn't a sustainable option. I wanted to be able to work some hybrid schedule and be at home when my symptoms are bad and in-person when I can do that with ease. Now, it doesn't mentally feel right to work in-person.
There is no solid guidance with cancer. Not with symptoms or what to expect. And not how to walk around in a world with COVID and 2.5 years into a pandemic that people are over. How do I keep myself safe? Should I work in the administrative side of a hospital with unmasked colleagues knowing that there isn't a magic boundary line where folks coming from the patient side aren't packing whatever they've already had or been exposed to that day? The Bozeman cancer center doesn't have a "How to Cancer with COVID" handout. No official guidance. No metrics to know that yes, now is the day where you ask people to mask in your home or, at this point, it would be really beneficial for my white blood cell count if everyone was fully vaccinated for COVID, and I should ask for that.
So, it was a fine day. I feel physically well. My mind just feels weary and sad thinking of the journeys ahead. Being sicker. Being bald. Being clearly, visually, ill. When I first got my diagnosis, I was told in a six-minute phone call from my St. Peter's primary care doctor three days after the office had already received my results. The next day, I went into an 8:00 a.m. appointment to a surgeon who did not have my full imaging records and I still had pathology results pending. She said that after her years of clinical experience, and with my cancer not being hormonally-based, she felt confident I would the Most Aggressive form of breast cancer (a triple negative).
She was the first human I spoke with in-person. She didn't show me diagrams, she didn't break down my known pathology. She didn't ask how I was. She didn't make options clear. She asked "Do you have an opinion yet on if you want a mastectomy or lumpectomy?" I told her I was less than 18 hours into this diagnosis, so no. She asked who I wanted to be my oncologist. I said I would be going out of town. "Why not St. Peter's?" When I said I had too many friends who got cancer treatment at St. Peter's and died, she said, "Katie, people die of cancer. And Dr. Weiner has been fired. That problem is over." We actually argued. I almost walked out. It was not productive.
I spiraled pretty hard after meeting with that surgeon. I didn't yet have an oncologist. I had no idea what treatment would look like and I was already scheduled for a surgery in two weeks. I was waiting and hoping I had HER2-positive cancer and wasn't a triple negative. I was trying to prepare to hear I had the Most Aggressive breast cancer. I felt panicked to find a care team I trusted and who would see me as a human being knowing my cancer was aggressively growing each moment.
My cousin, Angela, has gone through breast cancer. When I walked into my house, my mom was at the table, talking with Angela. Angela asked how I was. Anxious and fearful. We spoke honestly. She redirected me. "What do you know? What do you actually know? Yes, you have cancer. Is it the most aggressive form? You do not know that. You have cancer--that is what you know. Not more, not less."
Later that day, Mike called with an oncology lead after getting great care at a Bozeman Deaconess MRI appointment. I had called him from the car distraught and overwhelmed after meeting with the surgeon. In the small talk leading up to his MRI, he was asked about his partner and he shared my experience and diagnosis. The radiology tech used to work in the cancer center and immediately dialed them. Mike then called and connected me straight to a nurse named Liz, who gave me the compassion and context I needed to begin understanding my diagnosis. She immediately began my intake and that human compassion I had been craving was given.
That night, I realized I couldn't get too high or too low again. The morning was a gut check and after talking with Liz, I soared. I know I can't go too high or too low--steady on. It also made Angela's words stand out. What do I actually know? What is the truth of today?
I keep coming back to that framework--the truth of today. The worst day of symptoms made me realize I just needed to get through the day in 4-6 hour increments--things change so quickly. For today, I feel well. My symptoms are minimal. The truth of today is that I have minimal symptoms. I can eat everything I want. I can move my body and can get on the mountains. I still have my hair. I can feel strong today. So, I don't know--there are no big conclusions after all the uncertainty and instability laid out above. But for now, I am okay.
Katie, I just read all your blogs---backwards. It was like starting at the more positive outskirts with overtones of being able to survive treatment (hiking Peet's Hill before chemo) and going toward the core of pain---the initial diagnosis. You are vividly sharing the way your treatment is unfolding. I am grateful to read it---and see the photos of your beautiful supportive family. I recall my treatments and feelings. I remember being very sensitive, very raw and could relate to your interaction with the surgeon. Thank you for this work.
Katie H.