I’m Still Here

Just so you don’t think I’ve completely disappeared and to say a quick hello to my new followers. I promise to muster the ___________ to write and start posting regularly once again. For now just a quick Duo- One picture and some tunes.

france_2

Oddly when I saw this photo and quote (whose I’m unsure) I thought it was describing me. My friend thought I’d run off to Paris. One can dream. Oh wait, I do…often.

Come Away To The Water – Maroon 5 Feat. Rozzi Crane

Weekend ~ 6/6/14~Side Effects of Dying aka Living Fully

Needing out of the office after a particularly tough morning, I decided a walk to the bakery for lunch was in order. I had written a second draft of my VHL blog post and had been making the morning rounds to schedule doctors’ appointments in between opening new accounts, distributing estates and check distribution requests for clients.

I tried slowing my pace and thoughts; breathing deeply allowing the breeze to gently stroke my face. My mind drifted towards the fact that I had no energy to give to my art, to writing. The state of my medical affairs or what has become affectionately in my sense of humor referred to as Side effects of Dying has taken center stage. I’d rather be reviewing a friend’s blog post, drawing artwork for two other friends’ books in progress and writing a short story for another online challenge due today.

I order one of my usuals and wait. A long lanky man stood in front of me wearing a Green t-shirt “Stay Calm and Chive on” with faded jeans and cowboy boots. Other than slightly longer brown hair fanning from his faded ball-cap he reminded me of a long-ago love.

Encircling his elbow were the words Ars Longa, vita brevis tattooed. I knew it meant life was short. Seriously do I ever know that fact these days. But what was long? I pondered cramping my already achy head for Latin knowledge. So I simply asked.

ART is long, life is short. Another message to my pondering answered. Life is short, Art eternal and it takes a long time to hone ones skill. Our accomplishments are limited by our lifespan but it doesn’t have to be so. Hop to it sister! I thought

Once I got back to the office and looked up the phrase. I realized that for me there was a deeper message. These words written by Hippocrates, The Father of Medicine, were the opening of his medical text. So let’s look at it in the context of my fight with disease. Art meant “technique, craft (as in the art of war). This was followed by “The physician must not only be prepared to do what is right himself, but also to make the patient, the attendants and the externals cooperate.” Meaning that it takes a long time to acquire and perfect one’s expertise and we only have a short time in which to do it. Now apply that further to rare disease.

So as I fight the battle to get to the right specialists and have the right treatments done and fight the cancer returning I know it’s time to go to war against what ails me.

Life is short, and art long, opportunity fleeting; experiment dangerous, and decision difficult.” (Ars  longa, vita brevis, occasio praeceps; experimentum periculosum, iudicium difficile) Boy is that ever true when it comes to the Art of medicine and healing.

Here’s to having a full and artful life where opportunities are seized, experiments fruitful and decisions made confidently. To loving endlessly and savoring each moment as if it where the last.

Blast from This Blogs Past

The Weekend Reading List

Something Extra

The Fault In Our Star ~ Troye Sivan

The Cost of Winning

Some of you may have noticed my poor blog attendance. I’ve been busy. I won the Lottery!

The genetic lottery- I am 1 of 36,000 with a Von-Hippel Lindau mutation. Oh how I wish that where $136,000. Or better yet $1,136,000. Instead my life expectancy just became 49.

This gives me seven more years to cram in all the living. One of my friends hates when I say this. I’m 42 in case you didn’t do the math. I suspect she simply doesn’t like to think about losing me. But it is the stark reality of VHL. Some die in their 20’s, some in their 80s. It is only through early detection that life expectancies are increased by 16 years. And though VHL expresses differently in each affected person even within the same family 97% of people with a VHL mutation will get a tumor by their 60s.

If you haven’t figured it out yet I have a dark sense of humor. My first thought was NOW my two five-year marriages don’t seem like blips (or the Mulligan and Penalty as my bosses affectionately call them). And my midlife crisis definitely came at 28 following my first divorce. It was then that I got onto my spiritual path and began to change my life. So it seems to fit the timeline perfectly. I find this oddly comforting.

Look, I know anyone of us can go at any time. We all know it at least intellectually. But when someone stamps your ass with an expiration date it ups the ante. Trust me like a friend said we become much less cavalier about life as we age. Because let’s be honest we are all dying a little bit every day.

When I first met the geneticist she asked if I was the kind of person that would worry if I was diagnosed with a disorder. Would I lose sleep, begin to hear every bump in the night inside my body as sign of imminent demise. If so she said don’t do it. Because then in essence they would be giving me a disease. I assured her I’m not that girl. I would simply be armed (knowledge is power they say) and make decisions accordingly.

I’ve already shared on numerous occasions the difficulty of the not knowing, of being stuck between floors. And so much following a cancer diagnosis is like that. Will it come back? How long do I have? What they hell do I want to do with the time I have left?

A friend asked if I felt vindicated.”  I have been fighting the medical community to pay attention to my problems for a long time. Three years ago I knew something was wrong. And the tests agreed. They started searching for a “Pheo”, Pheochromocytoma- adrenal gland tumor, but couldn’t find one. My kidney “bump” was written off as a normal kidney cyst. They began me on numerous medications to combat the elevated stress hormones in my body and high blood pressure. But never found the tumor they expected to find. So they decided it must be genetic.

What ensued where years spent in spurts-my feeling ill and chasing specialists and getting tests- Xrays, CTs, MRIs, ear and eye exams. They came up with mild vocal cord paralysis and SIBO both cause unknown. My symptoms ensued. I would periodically give up, tired of the search, tired of not having answers. Eventually my symptoms would rear up and propel me to pull my big girl pants back on and keep fighting.

Somewhere in the midst of this struggle I began to put pieces together. My cousin’s daughter had a Pheo at 10. I had vaguely remembered they were sent for genetic testing and found a rare genetic cause. So I called my cousin and found they both tested positive for VHL type 2C. It was assumed to be a de novo mutation, as in spontaneous occurrence. But this turns out not to be the case. Apparently my Uncle never tested and my cousin just thought he had. (So if my confirmed diagnosis does nothing it may just save a younger member of my family. Remember early detection is key in this race.)

But at the time my head was spinning. Armed with the idea that I had a genetic root cause responsible for my still unexplained symptoms I began to research VHL. Anything I could get my eyes on to read. But as I had no tumors, remember they didn’t think my kidney was worrisome at the time and it was my cousin who had it, not a parent, it did not warrant my getting tested.

It was only after my nephrectomy (kidney removed) and the diagnosis of Clear Cell Renal Cell Carcinoma (the leading cause of death in VHL carriers) that I became eligible for testing.  And I insisted I be tested.

Again, like with the kidney cancer, none of the doctors thought I had it. I do not by any means have a normal presentation. Though I’d argue “the twins” (my baseball sized fibroid tumors) in my 30s count. But even the geneticist, an expert with VHL, was doubtful. I was presenting symptoms so late in life. Most tumors show up in your teens and twenties. And granted 75 is the earliest anyone on the VHL side of my family has passed away. So we are anything but average in the world of VHL. So far I and my cousin’s daughter are the youngest to express this rare genetic disease.

Really in the scheme I’m lucky. As I see it I got two extra decades before the growths began, before the yearly scanning schedule, and the “Well what do you REALLY want your life to be about?” questions. So I guess my friend was right. It is a vindication of sorts, my intuition intact.

Someone once said “Worry does not empty tomorrow of its sorrow it empties today of its strengths”. A friend reminded me we are all dying. Every day we are progressing closer to death. Hell, any of us could go at any minute. I am just lucky enough to know it and can make adjustments accordingly. Of course it also means life insurance is now out of the question. You have to love friends that ask the practical questions.

I had once joked that I am so creative even my body wants in on the adventure hence all the growths. I decided that Kidney cancer was taking things too far. And this is slightly less funny then even that at the moment.

I’ve had a lot of surgeries for someone so young. I have a separate spreadsheet to provide doctors and spare my hand cramping or the ink running out when I complete new intake forms. Recently I came across a quote “wounds are reminders of lessons endured”. In high school I performed a monologue called Marked in which the main character was slashed in a parking lot late one night. It changed her. She began to get tattoos, marking her body with everything and everyone that left an impression on her soul. Over the years my surgery scars have become my marks. The reminders of lessons I endured.

VHL is another life. One full of lots of doctors’ appointments and routine testing like yearly brain and spine MRIs, Abdominal CTs, Eye exams just to name a few. Perhaps the geneticist was right and I am one of those worriers because I know there is a tumor. My body has been trying to communicate this for years now. They simply haven’t located it yet.

And if I’m truly honest I’ve hit one of those places where I want to quit. Take a break and walk away from it all. Climb into bed and pull the covers up. I’m tired. Unfortunately this time my need to give up coincides with the fact that I still don’t feel well. So it simply isn’t an option.

This means every day I make the calls to get into the specialists, to get tests scheduled and prioritize what ails me. And as a dear friend and cancer survivor reminded me this morning things are still good. You aren’t getting the red carpet treatment yet. That’s when you know the shit is really hitting the fan. I need to be glad for the waiting. I can dig deep. It’s time to let the Games Begin again.

Composition of a Masterpeice ~ #fridayfictioneers ~ 6/6/14

hokusai4rwf

Composition of a Masterpeice

For a moment it felt like college again, late night cramming, last minute paper production.  I long since eclipsed this idle foolishness. Yet, here into the witching hours I race against the clock, time the reaper. I thought drawing cover art for my book of poetry would be easier. But as I inch ever closer to completion I begin to deteriorate more and more, hour glass thinning.

Doesn’t it just figure the electricity would go out?  Guess it’s the universe’s way of telling this fish to swim. Ok, 2 ½ hours of battery life left to create one last masterpiece.

Word Count: 100

********************************

P.S. Please make sure to read the others.

I know I have been lax as of late responding to comments and commenting on your stories. Mea Culpa. I’ve had a lot on my plate. I hope to have a post as way of some explanation, perhaps excuse for my internet absence. But I am ever grateful to have found my way to FF and for the community. Thanks as always to our ever gracious host Rochelle.

Why I Love the Night- The Face of Heaven Cut Out in Little Stars Otherwise Known as The Fault In Our Stars

tumblr_n5ub6wdRt81sfevmio1_1280

“Sometimes, you read a book and it fills you with this weird evangelical zeal, and you become convinced that the shattered world will never be put back together unless and until all living humans read the book” ~John Green from … Continue reading