CLL Trisomy-12 -The Blood In My Veins

Shock and Denial

It was the beginning of my 56th June summer 2017, in the desert. I arrived at my primary care physician’s office, for my annual summer physical.

In walked the doctor, “Good to see you! How are you doing?”

I began to tell her, “I have been feeling more tired than usual, loosing ten pounds without trying. I attribute my weight loss and exhaustion to an extremely filled school year of teaching with numerous workshops, dating a compassionate caring man, adjusting to being an empty nester, living life and enjoying right here, right now.”

“Wow, you’ve had a busy year, just like last year. You need some relaxation, reflection and lots more fun. What are you doing this summer?” the doctor stood up, walking toward me.

Let’s see, my summer plans, spending time with family and friends, traveling to San Francisco in two weeks with my boyfriend to visit my sister. and a few other little trips, working on a couple of projects and relaxing by the pool. It’s going to be a great summer! ”

Shaking my hand good-bye, “On the way out stop by the lab for your annual blood, have a fun and relaxing summer.”

Yuck, getting poked with needles! Thank goodness it’s only once a year. This was nothing out of the ordinary until I received a call the next day to return that day for additional blood work.

Um, I was wondering, this is unusual!

I felt this uncomfortable odd sense in my body after I finished the conversation with the doctors office. It was what they weren’t saying, I was listening too. I decided to look on the patient portal to sleuth any possible information. Generally, I rarely engage with the patient portal. Low and behold right on screen were my labs.

There in black and white, preliminary results! Something was definitely needing my doctors attention-some lab numbers and words were in red. Instantly, I began typing words and numbers and words from the lab reports to search on Dr. Google. I wouldn’t necessary recommend Google for this.

It’s the world we live in, instant information at our fingertips. As I read, my heart began to palpitate, increasing the more I read, anxiety from fear, with each word. Tears slowing began to trickle down my face as I glanced at my boyfriend. Our eyes and heart connected. He was on his phone looking up the same words. At first we had no words, we realized this is serious, the room began to feel thick making it hard for us to breath. We embraced each other as the tears fell like a waterfall.

My labs were completed the next morning by the end of the day the results indicated a repeated result. My doctor explained the possible diagnosis. Yet an hematologist/oncologist needed to confirm the possible diagnosis, with a need for additional in depth labs to determine next steps. I arrived at my first hematologist/oncologist doctors office.

As the nurse greeted me in the lobby, she requested I follow her. together we walk around the corner, a wall of windows with a view of the outside landscaping grabbed my attention. Quite quickly, my body began to tense up, my heart rate was increasing as if my heart would pop out of my chest, a claustrophobic sense of anxiety, as the room began closing in on my body and stifling my breathe…an anxiety attack! Focus on my breathe, inhale deep into my diaphragm and exhale.

Yes! We were walking through the infusion room, a surge of sadness and pain steeped into my body like a teabag in hot water. I was filled with compassion for those sitting in recliner chairs with tubes connected to their bodies. Holding back my tears, realizing this is my possible future. Why would the infusion center be the first this you seen in a oncologist office?

The nurse left me in the room waiting for the doctor.

I engage in mindfully being present with my breathe, cultivating compassion for those in the other room and self compassion.

Knock, knock on the door!

In walks the new doctor with the results waiting for him on the laptop. My heart pounding fast and loud, holding my breathe. He introduces himself with a warm and compassionate demeanor. I had already researched his background. He was a family man, loved animals and focused mostly Breast Cancer for the last fifteen years.

As he spoke, I hear his muffled voice, listening to each word, yet unable to comprehend. Tears of fear poured down my face, shock permeated every cell. I heard two word “blood cancer.” I became numb and deaf! The hematologist/oncologist confirmed the diagnosis as Chronic Lymphocytic Leukemia-CLL- Trisomy 12. Another few more words I heard ” 30% of CLL patient never need treatment. My brain responding This Will Be ME!

Typically, patients are diagnosed with CLL are in their seventies…my brain responding- I’m only 56. I knew there had to be some error! Shock and denial lodged my being!

Plus, what is watch and wait, stage 0-1??? What am I watching and waiting for? How long do I to have to live?

The next day after the confirmed diagnosis, I had many more questions. How could I have prevented a diagnosis like this? I eat healthy (pescatarian), exercise, passionate about my family, friends, career in education and I am mindfully spiritually connected. Plus, my loving and compassionate boyfriend is by my side, we were making plans for our future together.

Numerous questions danced around in my thoughts. How and when do I tell my family? What about my two sons? Will I pass this disease onto them? How did this happen? Is this in my genetics? Will this affect other family members health? What is this type of leukemia? Is there a cure? Is there certain foods I need to stop eating? Can I treat this with supplements and holistic medicine? How long do I have to live? Do I need to get a second and third opinion? I’m wondering if Mayo Cancer Center will give me a second opinion? The questions seemed limitless.

My primary care doctor had scheduled me with a second doctor? He gave me the same diagnosis stage 0-1 watch and wait. I was certainly hoping for my lab results to be different. Having a cancer diagnosis felt like a death sentence. My third opinion was with Mayo Cancer Center, where I found the CLL specialist I was seeking. Mayo relieved some of my anxiety, as I had as enormous team of support sitting in the room with me on my first visit, inclusive of my boyfriend and sister.

Resources I discovered to ease my intense anxiety, increase knowledge, advance coping skills and focus mindfully. I was on a roll to learn as quickly as humanly possible how to live with a cancer diagnosis. Below are few resources.

Thank goodness for the book; Fully Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness -Jon Kabat-Zinn, his guided meditations and a couple of other books of his. I started focusing on being mindful, staying in the present moments of my life.

I have been in Watch and Wait for two years. I visit my fabulous hematologist/oncologist team at Mayo Clinic. Visit Mayo Integrative Medicine, for acupuncture and upper shoulder massages twice a month. I did my research finding a CLL specialist was imperative for my peace of mind. The norm for the first two years, visiting Mayo Cancer Center every three months and talking to my team nurse a couple times a month.

I became engaged, married in Hawaii and taught full time. My disease continued to progress, I became more fatigued, integrated a green tea supplement, other supplements, more acupuncture, met with my team social worker, psychologist, yoga, personal trainer and mindfulness training by reading Jon Kabat-Zinn’s, Thich ha Nhat Hanh and leukemia research article.

At the beginning of my 2019 Spring semester, my labs were indicative of meeting the criteria for treatment. The CLL was progress quite rapidly. Even becoming vegan and everything else I was incorporating isn’t working!!My labs were moving in the wrong directions. Death is looming in the shadows of darkness.

I didn’t want treatment, FCR chemotherapy with another drug or an oral drug regime until my body stopped responding or didn’t tolerate the drug anymore, were my best options and standard of care for CLL and being a younger patient with the disease. I didn’t see these as options for me. Even though I needed treatment, I refused treatment. By the middle of the semester, still teaching, a clinical trail opened that I may be a good candidate, using an immunotherapy infusion drug, an oral drug and a study oral drug. The treatment was finite for 19 cycles, leading to 75% of patients to minimal residual disease (MRD), kind of a remission-not a cure. My CLL continued to increase, soon my overall health would be compromised. I still didn’t want treatment, just let nature take its course, letting my life continue for as long as I could. I spoke to my husband, my sons, my sister and brothers. The discussions prompted the need for further research into the clinical trail and CLL standards of treatment.

I read everything available on CLL, CLL standards of treatment, clinical trials and the drugs involved. It was scary most of the time. I focused on teaching my courses and my students. Mindfulness, being present and cultivating self-compassion and compassion for others, was paramount during this form of my life. At times this became another task too. I spoke with and was examined by one of the lead investigators in the Mayo/Stanford study. I understood the study and its protocols. Plus, I believed and trusted the research derived from scientific studies. I asked them to tell me the longevity of my future. Generally, doctors prefer not to give you a timeline of your possible demise from a diagnosed illness like CLL I pushed them to tell me, using the trajectory of my current disease progression. He said, about three years- June 2022. Time was of the essence at this point. The clinical trial wouldn’t be open indefinitely, nor was my CLL slowing in progression. In fact, in few more months my CLL may progress beyond the criteria to enter the trial.

What am I going to do? How will I rationalize my decision to my loved ones and myself?

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