My Patient Journey - Serving Up Anxiety

The thing about unexpected news is that it takes some time before it can truly be digested. At least, that’s how it was for me. I remember leaving the hematologist’s office with more appointments and new prescriptions and simply thought I’ll deal with all of this…NEVER! Instead, it hit me in the evening when I once again asked my friend Google what I should do? And Google, never one to disappoint, referred me to an infinite number of medical websites, simultaneously placating and overwhelming me.

How could something named “polycythemia vera” which evokes visions of a simple benign Primavera meal be nothing nearly similar but instead be a chronic blood cancer? The only connection is that Primavera, which in Latin denotes “first green”, is how my complexion turned when I was told I had polycythemia vera (PV). But unlike Primavera being a most recognized enticing and classic spring dish, when I mentioned PV to some people, no one had ever heard of it or MPNs, and when explained, it leaves only a bad taste.

After filling the so-called well-tolerated chemo medication prescription, I spent the first week just staring at the pill bottle. This was followed by rereading the long list of potential side effects that accompanied the medication, at which point I felt my nerves get the best of me and back I went into denial, refusing to take or do anything. My wonderful husband attempted to allay my fears by reminding me that even simple Tylenol comes with a list of warnings, from jaundice to clay-coloured or bloody stools. But in my heart, I felt sickened that I was going to have to introduce something to my body that, while reducing the risk of me getting a stroke or clot, could also gradually and potentially be irreversibly damaging my organs. I realized sorely that many people have had to face and accept a worse circumstance, diagnosis and fate.

I have more questions than answers, like primarily how is it your blood-cell formation can suddenly decide to go rogue and mutate? What triggers this? I heard that exposure to environmental substances and specific lifestyle choices could have influenced the initiation, development and disease evolution resulting in MPN. And then there are the specific symptoms related to PV. They can be attributed to so many other things, like hmmm just being human! Who doesn’t get a common headache now and then, or a feeling of fullness, especially after you, for example, delighted in a bowl of pasta primavera? Then there are the more obscure symptoms. My hematologist asked if I have experienced any itching after a bath or shower, weight loss (I wish), double vision, or have I noticed my face spontaneously reddening? I thought the red wine I drank occasionally gave me a nice warm glow, but I never drank enough to see double. There could be a million reasons for anyone having such symptoms. But none of which I expected to be resulting from a type of blood cancer!

The weeks after I started the medication were horrible. I related every nuance of normal bodily activities as a side-effect! If my nose itched, or twitched, if my foot fell asleep, if I yawned incessantly, or I picked an unnecessary argument with my husband, I attributed all of it as a reaction to the medication. I was going off the rails!

Already a self-proclaimed hypochondriac, the combination of paranoia and neurosis only further fueled my anxiety. Despite my stolid doctor’s soothing words, that I won’t die from PV but with it, the mystery surrounding these blood cancers and lamenting the future had already taken up residence inside my brain.

The best defence I realize now is to keep educating myself on the best mental health and wellness practices and try to remain sangfroid about MPN and these rare myeloproliferative disorders.

“Nothing in life is to be feared. It is only to be understood.” -Marie Curie

Take part in the conversation. Share your journey in the comments or to patientjourneys@cmpnrf.ca.

Next time on my patient journey - Is it cheating on your doctor if you seek a second opinion?