Sometimes “The Race” is torturous

October is the month for celebrating breast cancer (oops, scratch that) Breast Cancer Awareness month! I can assure you, not all breast cancer patients are interested in donning the pink attire to walk or run miles to a finish line. Why? Because their experience with breast cancer was infuriating or worse, torturous. And what about those individuals who are diagnosed with metastatic breast cancer? They’ll have no victory.

In 2013 I was diagnosed with breast cancer. As shocking as it was, I was determined to get through the protocol of treatments and return to the life I adore. The reality? It wasn’t that straightforward and although I was willing to fight cancer, I wasn’t prepared to fight for my sanity, and the ability to heal.

Exactly what are these foundations for anyhow? Finding the cure only? Or are they there to support those who’ve been diagnosed with the disease? Could be both, but it’s still unclear to me. I never attempted to contact them because I couldn’t bare another horror story. I heard more than my share from a patient advocate, who took it upon herself to diagnose me – I hadn’t met with a doctor yet – but thankfully her assumptions were incorrect. Then there was a nurse navigator who detailed her experience of the absolute worst case scenario she personally was going through – not once, but twice! I aptly named her the Nightmare Navigator. All of this because I inquired about what types of specialists I’d require, what their titles meant and was there anything I’ve possibly overlooked.

When I was initially diagnosed, the few medical professionals I had turned me over to the experts. Afterwards, my 13-year internist made no further inquiries. For me, breast cancer began with lists of specialists to choose from. These lists consisted of four names in each field of expertise (doctors aren’t allowed to recommend just one) and I was left to do the research – What exactly is an Oncologist?

Where did it go wrong? I think it started with the my physician. Being a relatively healthy individual I never concerned myself with the relationship I had with my internist. He was there when I needed him to combat the flu and for my annual exams but other than that, he was just the doctor I’d occasionally visit. I liked him as a person, but because I wasn’t inclined to swallow every pill he suggested I think he considered me problematic. I wonder, if I’d had a better rapport with him, would my experience have been different?

Which brings me to the next obstacle – individualizing the patient. Indeed, healthcare is cutting edge when it comes to Personalized Medicine (think genetic and microbial signatures). However, one key element is being neglected: Personalized Patient Care. While doctors align themselves with hospitals, they’ve become an intermingling of many doctors. Yes, the initial concept of having a doctor available when needed is appealing, however, it doesn’t quite work out that way. Only your personal physician is privy to the conversations detailing what your body has been through both medically and medicinally. When another doctor steps in, their diagnosis is speculative; making educated guesses based on your medical profile.

Another aspect of a breast cancer diagnosis is all the specialists you require. My search was for individuals that would guide me through the unknown and ultimately help determine which procedures would aid in my healing. More importantly, return me to the life I so desperately wished to get back to. But interviewing these experts is daunting. Seriously, how are you supposed to know what to ask when you’ve never experienced anything like this before? Especially when it’s not your area of expertise.

At the end of the day – actually weeks – your league of extraordinary doctors will be chosen but you shouldn’t allow yourself to revel in them completely. Why? Because there’s always the possibility one will have a falling out with the facility or hospital they’re working for. With no warning, you’ll be informed the doctor you’ve entrusted your life to is simply gone. And you? You’re left scrambling to find that list of names on the plain sheet of paper.

Eventually, my surgery is scheduled and I’m told I won’t know 100 percent the details about my cancer until after it’s over. It’s been three months since this whole convoluted mess occurred and I still don’t fully know my prognosis. After the surgery, it was coincidence that I discovered the initial biopsy taken was used for my pathology and genomic tests. Of course I asked the only logical question, “If we have this technology, why isn’t it sent in from the beginning?” The response: because this is how it’s always been done.

We’ve made paramount leaps when it comes to genomic testing, yet no one thinks to change antiquated protocol? I spent three months of my life not knowing what my future would be! If I could have known my risk factor from the beginning, all the stress that I (and my husband) endured would have been lessened. Instead, I was left to patiently await my fate and continue the belief that eventually there would be an end to the insanity.

All of this brings one word to the forefront . . . compassion. The feelings a person encounters when faced with a life-threatening disease are fear, anxiety and, in some instances, pain. It was only natural I assumed individuals working within our healthcare system are well versed and educated in compassion. Truth is, compassion is taught by “observing others”– there is no formal training let alone a class in Compassion-101. Because of this administrative personnel, and many medical professionals, completely dismiss what you’re feeling as a breathing human being. And unfortunately, some individuals can be downright bullies! I hadn’t anticipated this.

Thankfully, there are individuals within healthcare that have an inner ability to connect with the person. They somehow can comprehend the torment experienced when diagnosed with an ill-fated disease. In turn, they exude a calmness, instilling confidence and trust which is paramount to the healing process. Maybe “Compassionate Awareness” is what this month should be about.

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