Don’t be a Back Seat Driver

My metastatic breast cancer diagnosis in March of 2015 at age 49 did not throttle my world or change it in the ways I’ve read about in blogs and books and in other personal narratives. Instead, my MBC diagnosis changed the way I’d heretofore approached the medical community and the decision process they used to determine my own care, which was delivered to me by way of prescriptions and advice, mostly.

I had little say in the matter. In fact prior to my week long hospital stay, I’d only been in the hospital once before – when my mother gave birth to me. I’ve always educated myself regarding any diagnosis and for those received by my friends and my family. In fact, on five separate occasions, I disagreed with the doctor’s assessment of my husband’s health issues. After looking at my non-medical amateur diagnosis and the research behind my educated hunch, he went back to his physicians with an alternate diagnosis. One aspect of a patient to which doctors aren’t privy are their daily psychosocial, health, and other important issues that may impact their conditions – for better or worse. Partners, wives, husbands, friends, family usually do not have the opportunity to provide a more dimensional picture of the patient and therefore the physician only sees a single snapshot, including tests, of a patient’s health during the short window of a visit. Every time he re-visited or had a discussion with the doctor regarding my deep research and further assessment of his condition, my opinion was correct.

I’m no doctor. However, what the doctors didn’t have access to was the intimate knowledge of my husbands psychosocial situation, the outlying events, and the ongoing symptoms, which are impossible for them to observe. I sleep next to him. They sleep elsewhere.

Why then do we cancer patients sit back and take what’s handed down as gospel by our oncologists and other members of our cancer teams?

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Simon looks on dumbfounded at my audacity.

As stage IV patients, the end it would seem consists of drug after drug until they stop working and then the painful statement, “there nothing more we can do for you.” Au contraire! And, for god’s sake, never ever tell a tenacious 50 year old, self made woman, “we don’t do _______ on people like you.” On that occasion I’d brought up surgery as an option and that came after many readings and a new study that looked at the charts of MBC patients across decades that found without a doubt that we live longer when primary tumor surgery is performed. Surgical procedures were slowed to a halt about 20 years ago for MBC and the mortality went up significantly. While not conclusive enough and still controversial, I want to deliver this as my story to illustrate why we the patients are the best suited to be our own patient advocate.

Patients must therefore become the drivers of their Oncology Care Team. Back seat drivers don’t get anywhere, they just get annoying. I spent 27 years in marketing in high tech and have written for professional print and online content providers and have now changed careers due to my lackluster energy and bone pain from the mets. However, I love my slowed down life and good husband.

Welcome to the Machine

I climbed out of bed at 4:30. 4:30 PM. Oh god. The daylight hours dwindle quickly away. Off goes my husband – who is suffering from severe depression and doesn’t wake up unless I do – to grab my stepson from school.  Wishing I had gotten up hours ago, let’s say 8 hours ago, I spend the next 45 minutes hoping for any kind of intestinal goodie my body can produce and my left ass cheek falls asleep while I sit reading email on the toilet. If you’ve not had a part of your body tingle and go numb from sitting on the can, you’re not missing anything special. However, a painful side effect of pain medication – major constipation. Squeeze and pray, yet not even a milk dud today. Shit! I now get my numb ass into the shower.

I sneak another peak at myself before the shower and I gasp at my reflection – it would appear as though I slept as one might if the only part of their body to make contact with the bed  were their face. My eyelashes looked like Bettie Boop’s and the pallor of my skin has the tincture of a nearly extinct pink Chinese albino dolphin. Not pretty but something you cannot stop staring at because it’s so ugly in a cute, puffy way. No wonder the poor things are doomed for extinction. They cannot bring themselves to have sex with one another – they’re that ugly. But the warm water over my head has a magical effect on my entire well being. After wiping down the glass shower walls so they don’t become encrusted with the hard water of Santa Clara county, known also for its high PPM of  cyanide – which when you think about it probably becomes gasious in the shower and keeps oxygen from getting absorbed by your body (see I’m already distracted and took two trips to Wikipedia and fact checked and then rat holed on the etymology of cyanide while writing this post)  I return to the mirror in a semi recognizable form of me.

Before I was hit by a bus last March, it took me all of 15 minutes from shower to keys in the ignition. Now, if I remember where my keys and everything else I need are today, we might give it an hour to 90 minutes. I’m not wearing more make up, or doing a big fluffy hair do, but fifty seven existential discussions with myself and forty three distractions into what might be one or all of my five hobbies and/ or the booth at the antique shop or my Etsy store and maybe 10 text messages and oh I forgot to take all my pills and eat and…well  it’s too late to even get outside today.

But it turns out I wasn’t hit by a bus last year. I want to tell you a secret – I was diagnosed with hormone receptor positive stage IV lobular breast cancer with bone metastasis. And you might say, ” well you could be hit by a bus, too.” Chances of that happening? 4 in 100,000 pedestrians die each year by any moving vehicle according to the World Health Organization, which keeps me completely distracted for so long that I thought I lost this first blog post but thank goodness WordPress doesn’t suck and it auto saved this post. For better or worse. You be the judge. Anyway – your chances of being killed by a cancer hitting you? 186 out of every 100,000 of us. So, for today anyway since I never did get out of the house, I wasn’t killed by an errant bus jumping a curb and hitting me. And the cancer didn’t kill me today, either.

Score one for the home team. Oh and I don’t know that anyone was hit by a bus and died of cancer at the same time either. So shut up. Stop saying that to us people with cancer. I promise I won’t say it to anyone of you two or three people who read this and don’t have it. Deal?