Tuesday, December 8, 2015

My Neuroses are Showing

I cancelled my brain MRI.

For months I have been putting off the six month ‘check-in’prescribed by my neurologist. My aversion to the test is complicated. This would be the third brain MRI I’ve had in 18 months and the fourth MRI with contrast I’ve had in two years. Occasionally my scanxiety is related to what we might find but, more often than not, my larger concern is the safety of the contrast. Then there is the obvious question around what happens if we actually find something. Yes, I realize that my neuroses are showing.

Ultimately I keep coming back to a statement I’ve heard repeatedly by physicians and patients alike, “Skip the scans and get busy living.”

I have been busy living. But sometimes I feel like the ‘busy’ is more of a frenetic “HOW MUCH LIFE CAN I CRAM IN?” kind of a busy as opposed to a more patient “I’m savoring every possible moment on the planet” kind of busy. I want to achieve the latter but I sense I am kind of stuck in the former.

After the $hitty Summer of Cancer, I left the high tech industry and focused my skills in the world of community and patient engagement. I love connecting people to people, people to organizations, information to patients and most of all, I love helping patients find their “outside voice” while navigating the healthcare system. But there is a flip side to the warm fuzziness of what I do. I continually work with people who are dying faster than the general population. For as ecstatic as I am every time a friend receives a status of NED (no evidence of disease), I am emotionally pummeled when their cancer advances and I am thoroughly devastated with news of their deaths.

If I were good at compartmentalizing, my personal disease roller coaster might not be so rollerly. But, I’m not good at compartmentalizing. I absorb the energy of those around me. I connect with these people, their stories, their fears and hopes and dreams. And I can see myself in every one of these stories.

And, when I look at how quickly the health and wellness tides can turn, I feel like my focus should always be to participate physically and emotionally to the utmost in life. Anna Craig has called this “living condensed.” I love that term but am finding the realities of living a full life challenged by the realities of living a life within the realities of my life challenging. How’s THAT for meta?

There are so many things I want to write about but they all feel stuck somewhere between my brain and my fingers. I want to write about gratitude. I want to write about despair. I want to write about fear. I want to write about hope. I want to write about anger, hate, love and what comes next. I want to write just to get the emotional baggage out of my head and off my proverbial back. I want to write to help others in the same boat realize they are not alone.

So rather than sit around cursing my current inabilities, I’m breaking things down remedial writing style. Apologies in advance.

Gratitude: Gratitude is a fat, self-nurturing emotion. Filled with the heaviness of being thankful, I feel happily bloated physically and emotionally. Perhaps ‘bloated’ isn’t exactly the right terminology. Sated? On Thanksgiving Day, my family and I were wandering around Florence, Italy with dear friends (our Framily) stuffing ourselves with gelato and high on espresso and life. On November 30th I quietly celebrated the two year anniversary of my very first gratitude party. Just six months from diagnosis and thrilled to be cancer-free I had hoped the party would put the period on the $hitty Summer of Cancer. While it did not, the party was a huge milestone and I’m happily, bloated-ly, sated-ly grateful to be cancer-free another two years later.

Despair: Just days before returning home from our whirlwind Italian tour, I read the news that Maria Fowler had died. Maria was a member of the #bcsm community and metastasized earlier this year. Her death, like so many others, brings home the reality of a disease that kills over 110 people per day.
Fear: I am afraid. Not every day but sometimes. I am afraid of cancer returning. I am afraid of not living every day to the fullest. I am afraid of treatment. I am afraid of screening (most notably the brian MRI I have put off yet again). I am afraid of being too afraid to enjoy the gifts that surround me every damn day.

Hope: When people question how I can surround and immerse myself in the cancer space on a daily basis, I remind them (and incidentally myself) that this community is full of hope. And, as with any community, when one member loses hope, we hold hope for her until her hope energy returns. Every time I connect individuals I do so with the hope that we become closer to moving mountains. Because we are all stronger together.

Anger: I am angry at the bureaucracy of a healthcare system that often marginalizes patients to a member number and a set of ICD codes. I am angry that with all of the advances in research, we still have people dying because they are unable to access a particular treatment. I am angry that, in a country as resource wealthy as ours, people’s life spans and quality of said span are often determined by their zip codes. I am angry at diseases and at individuals who take others’ lives with blatant disregard. I am angry that I waste my precious time being angry.

Hate: Why? Why? Why? Is it really so difficult for humans to realize that we are all more similar than different? Global events that boil down to a hatred between ideals taken out on individuals stupefies me. And, as I mentioned before, angers me. It also saddens me. Beyond words.

Love: More love please. I love working with brilliant, compassionate people that can and will change the world. I love that I wake up every morning and have another day with which I can experience, share, learn and do.

Tossing out sincere apologies for the structure of this post and gratitude for the ability to finally get a few of these things off of my proverbial and literally reconstructed chest.

What comes next? I’m not sure. Tomorrow comes next for many of us. I still vow to treasure each day but I also commit to not putting such an undue amount of pressure on the treasuring part that I forget to actually enjoy tomorrow. And that MRI? Eh, we shall see.