My Patient Journey Begins - Completely Blindsided!
Updated: Jun 14, 2022
It was a hot and muggy summer day in July 2021. Covid numbers were stable, so I was heading in person to get my blood test results from my family physician. I usually try to see my family doctor every year for a checkup, especially since I am on blood pressure medication and am a woman of a certain age. Being very proactive with my doctor, I would often request that she strike a “Yes please!” next to every individual box on that blood test requisition form. Let’s get to know how my thyroid is doing: hormone levels, cholesterol. I want to glean as much as possible.
It was mid-afternoon and my husband had taken the day off so we could skedaddle from the clinic to enjoy a late lunch before settling in with our usual routine of Thursday food shopping. There I was, sitting in front of my doctor, contemplating my grocery list, reminding myself to ask her for my prescription renewals while chit-chatting a little about the incessant humid weather - when she blurted out that she sees something a little suspect on my blood results that should be further followed up. I was prepared to be scolded for higher-than-normal cholesterol numbers since I knew I had been indulging a wee bit too much in summer’s best companion: ice cream. But her expression continued to look serious, and she told me that my platelet numbers were elevated and that she was referring me to a hematologist. I left her office with a referral to a hematologist and a bad foreboding taste in my mouth.
That weekend, I tried not to think about what elevated platelets could mean, but my dear friend Google had other ideas. She stirred me into a frenzy! With my husband’s encouragement and then pleading, I put the matter to bed until I got the phone call in late September for my appointment to see that hematologist in the hospital.
I am so fortunate to have a husband who willingly escorts me to my appointments and acts as my advocate, volunteering questions when my mind goes blank. We sat in the hematologist’s tiny cubicle as he brought up his computer screen with my latest blood test results done just prior to the appointment. He swivelled his chair around to face me and my husband and while shaking his head up and down proclaimed the results were “positive”! Great! I thought, “positive” as in “hopeful”, “optimistic” nothing found here, have a nice day! Nope! Nope! Positive for the Jak-2 mutation. What the hell?
Stunned, I listened haphazardly as he immediately rambled off something to the effect that the movie “Love Story” the one where Ali MacGraw dies of a terminal illness, gave blood cancers a bad rap, and that now several strides have been made in blood cancers. Wait! What? “Blood Cancer?!” He then wanted to know if I had experienced any strange symptoms like itching after I shower, dizziness, night sweats, headaches or fatigue? I am a woman post-menopause, recently retired, about to celebrate my grand 60th birthday and start my second act. Of course, I have had at least two of those things! My mind was racing. Gratefully, my husband was alert and able to ask what exactly is this new mysterious diagnosis of polycythemia vera (PV) and what is the course of treatment?
I don’t mean to overdramatize the events of that day; I know how many others face far worse prognoses. But I was totally taken by surprise and gripped with fear. My husband’s cherished mother died at 57 from acute leukemia. Did the same fate await me? It’s hard not to go straight to distress. We left the hematologist’s office holding white-knuckled hands and clutching papers, further blood test requisitions, and new prescriptions for a highly tolerated chemo drug and baby aspirin. This will go down more smoothly, I thought with a nice Chablis, as I continued to process what had just happened.
Stay tuned, for the next time, when I write about seeking a second opinion, mutant genes and marital mutiny on the home front!
Wendy Reichental graduated from McGill University with a Bachelor in Linguistics in the mid-80s and enjoyed the campus life so much – she never left. She further put her Graduate Diploma in Human Relations and Family Life Education (also from McGill) to good use by utilizing her interpersonal skills in her support position, which she held for over 30 years at McGill’s School for Continuing Studies. She took early retirement at the end of 2019 to navigate her second act and find her footing as a Registered Canadian Reflexology Therapist (RCRT). In addition to this, she continues to follow her passion for writing and capturing life’s passages in short humorous essays and commentaries. Her writings have appeared in The Montreal Gazette, Ottawa’s Globe and Mail, and various online magazines. At the end of December 2021, she was diagnosed with Polycythemia Vera (PV). Wendy looks forward to joining the MPN Research Foundation with her monthly blog showcasing not only her own journey but that of many others from the MPN Community. Her goal is to keep learning about emerging trends and therapies in Myeloproliferative Neoplasms (MPNs) and she hopes the blog will increase awareness of MPNs and be a source of knowledge, encouragement, comfort, connection and even the occasional place for laughs.