This is the eighth post in a series titled, Today’s Reality. The series will chronicle my journey to remission from Chronic Myeloid Leukemia (CML). My outlook as I begin this new phase in my life and blog series is living in the moment in mind, body, and spirit. I am not angry. I refuse to be sad. I am determined to live a long life with love and peace in my heart with the confidence of a better tomorrow filled with joy and humor.
The title of this post is not to shock you. You may even read into this title if you have been following this blog or this “Today’s Reality” series that cancer has gotten the best of me. I know that my husband, Vinny Sal will undoubtedly ask, “Whoa! What’s with the potty mouth?”
Let me just say my inner monologue has had an external dialogue awakening. It has been 7 months to the day that I was diagnosed with chronic myeloid leukemia.
COVID, Crocheting, and Cancer
The COVID pandemic has accentuated our complaining about our lives on just about any topic to a whole new level of unhappiness: social distancing, mask wearing, visiting family, friends, and favorite establishments, the vaccines, what a politician says, does, or endorses, and the list goes on and on depending personal circumstances.
My oldest son who is 25 years old commented to me the other day that we are living in a dystopia. His comment made me sad for my children’s future. I remember a similar sorrow the day after 9/11 when I walked with my youngest son who was 3 years old at time in our neighborhood and noticed that there no airplane trails in the sky. I brought 2 children into uncertain future.
I would like to think I am above the complaining. Sadly, not.
Over the last 7 months I have been crocheting afghans from my own personal yarn stash (Vinny Sal would insert ‘store’ not stash.) Crocheting has been a way for me to focus on something yet allow my inner monologue to hash out whatever I am pondering or feeling. Four afghans later and I still have quite a stash of yarn yet to go. I have decided that I will crochet afghans for charity with the label sewn in, “You are loved. John 16.”
Chemo brain has made it difficult for me to concentrate on reading books for any length of time, so crocheting has been a good substitute to keeping my mind active. As I continue to adapt to my daily treatment, I am now able to also focus more on reading books instead of just articles. In some sense, I feel crocheting has helped me to transition into returning to my old self and being mindful of what I am feeling.
After being diagnosed with CML, I was determined to live a long life with love and peace in my heart with the confidence of a better tomorrow filled with joy and humor. I have tried to see the humorous aspects of thinning hair (and I mean everywhere like prepubescent 8-year-old). Can my Germanic skin become even more pale? Celebrating a milestone birthday has felt more like a marathon birthday.
Yet the last few months have tested my joy and humor.
The love and peace in my heart turned to questioning the care and concern from my oncology team. In March, my oncologist had messaged me on my patient portal that she was pleased with my progress based upon my latest lab tests. We also spoke on the telephone in which she threw out the term ‘remission’ and that she considered me to be in remission. Less than 2 weeks later her nurse called me out of the blue during my workday to let me know the latest lab test was going in the wrong direction, but she said Dr. B was not concerned. I was upset. Was I in remission or not? Dr. B did not call me back as I instructed the nurse but left me a message in my patient portal later that evening telling me simply again that she was not concerned. She even reassured me with the word remission.
A Fucking Journey
After sharing my latest discussions with my oncologist, my husband and my friend, Mary, strongly encouraged me to obtain a second opinion on my CML treatment plan. I vowed I would after my next appointment with Dr. B in April as I thought it was necessary to give her an opportunity to explain face-to-face what the hell was going on.
Shortly thereafter I was at the kitchen table with my husband and youngest son having lunch while watching the midday news. The local news was highlighting a woman who was battling her second round of cancer while still helping others with cancer. Her husband remarked how proud he was of his wife’s resiliency in her cancer journey and still had the desire to help others in their journey. At which time, I did not know my inner monologue had become this external dialogue.
“EVERYONE is on a fucking journey! No one is special not even cancer patients. We are all on a fucking journey. For the love of scotch!”
My son turned to me with a smile, “Mom, you really need to go on a cancer comedy tour.”
An ongoing dialogue continued about personal journeys. I vowed I would never again in my posts or in conversations use the word ‘journey’ again to describe my pursuit to wellness or in any manner.
The week prior to my anticipated oncology appointment, I began having severe dizzy spells and heart palpations. I tried to hang on until my next appointment but thought it best I call my oncologist. Her nurse, Laura, whose tone resembles Nurse Ratchet (if I am being honest) peppers me with questions that only leave me feeling like I was her biggest annoyance. Did I call my primary care physician? No, I tried to explain but she cut me off. She asked another question when I said that I have an appointment next week with Dr. B. The doctor had told me at the last appointment she would schedule an EKG which is why I thought I should call her office. She finally relented and said she would ask Dr. B what she wanted me to do. A short time later I received a call to come into the office that afternoon to be seen by the Jen, Dr. B’s physician assistant.
When I arrived, I was told I would need to have lab work done first. I finally met Jen who was pleasant. After taking my blood pressure 3 times determined it was probably best to have an EKG. I would have to return the next day to the hospital for the EKG. The results came into my patient portal – abnormal arrhythmia that was not seen on my EKG 6 months earlier. Jen said Dr. B would discuss the results at my next appointment.
The following week I was first seen by Dr. B’s oncology fellow, Dr P. I had prepared a list of questions, and I found from earlier appointments, that if I asked Dr. P first, I was more likely to get a straight answer. My last question was, “Am I in remission or not?”
“No,” she said bluntly. Before I go on, let me just say I really like Dr. P because she sticks with the facts and she squarely answers my questions – no dancing around. She went on to explain that I was never in remission and how they would determine when they would consider me to be in remission. Even in the best scenario, it would not be until 2 years from now.
Dumbfounded, I had to suppress the urge to externalize my inner monologue.
When Dr. B entered the examining room, she explained that my chemotherapy drug may be causing my heart arrhythmia. It could also be my weight and my genetics, but that arrhythmia was not there 6 months ago necessitating the referral to a cardiologist. I explained that in the fall of 2019, a full year before my CML diagnosis, I had a complete cardiology workup in which nothing was found that needed further treatment.
“Why did you say I was in remission when I wasn’t?” I asked.
“Your white cell count has stabilized so in that sense I considered that to be in remission,” she replied.
I needed to resist my inner monologue.
“Please refrain from using the word remission unless I am technically considered to be in remission,” I verbally spanked. “Words matter.”
“I have physical pain every (damn) day,” I explained. “Is there any medication other than Tylenol that will not have an adverse reaction with my current medications?”
“The only way to manage that pain is to lower your dosage,” she said. “I do not want to do that right now but let’s see what the cardiologist says.” (My inner monologue: “So that is my fucking journey.”)
As I drove home from my oncology appointment, I reminded myself that everyone is on a fucking journey. I thought of a conversation I had with the oncology spiritual advisor who had contacted me in February. One of his questions was, “what has been the biggest burden in your cancer diagnosis?” My inner monologue wanted to use the “F” word, but with tears welling in my eyes and with a low voice, I said, “The burden of Christ,” I said. And in that moment of silence, I went on to explain, “My burden in carrying this cross is that others see Christ at work in my journey. That is the biggest burden for me.” (Inner monologue: …and not saying the “F” word if I am being honest.)
No Fear, No Tears, God is Here!
After being falsely told I was in remission, Vinny Sal and I decided we would sell our primary house and move to our “happy place” by Lake Michigan. The real estate market is hot right now with low inventory – a seller’s market. Our two sons are now independent, living on their own, and establishing good careers and coupled with the fact that we both can work remotely made the decision to sell easier. We are not retiring but it will be nice to have only one house now so we can save even more for when we do retire. On May 5th, the For Sale sign will be planted in the front yard. We are praying for a fast sale and easy closing.
Downsizing, donating, and packing after 28 years in the same house has taken a lot out of me in mind, body, and spirit. What I am looking forward to most when we finally arrive at our Lake Michigan house permanently is writing. I am more inspired here. The words form and fit together more freely and firmly here. I will not have the distraction of living between two residences but only between my inspiration and imagination. It will truly be living a life of purpose.
God is good! Everything possible has been made by Him, I am sure of it – even the possibility of remission.
The Blogging Owl
P.S. I am fully vaccinated with Moderna vaccine. Please seriously consider getting vaccinated! Stay safe and wear a mask!
(c) 2017-2021 All Rights Reserved