Life Free From Straws

To cut, or not to cut. That is the question. Whether ’tis nobler to leave my brain intact and as is, or to suffer the potential slings and arrows that may come with neurosurgery.

Enough paraphrasing; Shakespeare did it better anyway. I don’t know what to do. I have a follow up appointment on Monday with Dr. Sadikot, a neurosurgeon with whom I opened discussions concerning deep brain stimulation (DBS). For anyone who missed it you can read about it here, but the long and short of it is simple. They install pacemaker-like device in my back, near my shoulder blade. From this device, an electrode runs into my cerebellum. My cerebellum; a part of my brain that plays a heavy hand in motor control, as well as some cognitive functions. I have a sneaking suspicion that major portions of my personality reside therein as well. According to an arguably reliable source, DBS comes complete with potential side effects – “Reports in the literature describe the possibility of apathy, hallucinations, compulsive gambling, hypersexuality  (this one might not be so bad), cognitive dysfunction, and depression.” I’m citing this from Wikipedia, so who knows. But, the Wikipedia article actually cited a credible source when making these remarks (Burn D, Troster A (2004). “Neuropsychiatric Complications of Medical and Surgical Therapies for Parkinson’s Disease”. Journal of Geriatric Psychiatry and Neurology 17 (3): 172–180. ). Though I am neither a geriatric nor a Parkinson’s patient, I see no reason why the side effects wouldn’t apply to me as well. All these are questions for my neurosurgeon.

He did have me go in for preadmission, where I was given a strange device that looks like it’s meant to measure my lung capacity (pictured here) as well as a bottle of DEXIDEN 4 DETERGENT, a detersive skin cleanser (though it looks as if it would be related to or have the same root as the word ‘detergent’, even I had to look up the definition of this one; it means having cleansing power). I was given a list of instructions to follow for the day of my surgery (it basically says to wash myself from head to toe with that fancy pants DEXIDEN 4 cleanser). But I don’t know… particularly after reading that “…because the brain can shift slightly during surgery, there is the possibility that the electrodes can become displaced or dislodged. This may cause more profound complications such as personality changes…

I can deal with puking from chemo. I can deal with it cutting a week out of my month while I recuperate. But I’ve spent 28 years getting to know the person I am, through my ups and downs, and at the end of the day, I kind of like him. I’ve been most recently referred to as “trustworthy” by a close friend (I have it in writing, so there’s no taking that back, my dear!). It took me a long time, but I think I stopped being an asshole somewhere around my diagnosis, circa 2007. Just how much do I love myself? Would I be willing to let the person I am be altered for a life free of the cerebellar tremor? The most crippling symptom… the one that prevents me from being able to cook or eat a bowl of soup, the one that makes it nearly impossible to shave with a manual razor (I pull this one off by holding the razor in my right hand and holding my right forearm with my left hand – I cut myself far less often than you would imagine, but shaving has gone from a 5 to 10 minute thing into a 20 to 30 minute thing). Everything I drink is done with a straw, be it hot coffee, my favourite wine(s), or the glass of Goose on the rocks that I miss being able to hold steady in my hand. It’s the one symptom that I can’t disguise. The one that makes me look truly handicapped, in my opinion, even more than the wheelchair. The chair is something I perceive as nothing more than a tool to help me get from point A to point B, no different than a bicycle or a pair of rollerblades. I can’t count the number of people who giggle when I say “I had my winter tires put on” and then proceed to say that they should do the same on their vehicle.

I’m moaning. But I know. I know that I would do anything, anything at all to eradicate this symptom, regardless of the side effects. Amazing how desperation can be such a strong motivator…

So cut away, I say. Cut away…

I’ll do my best to keep everyone appraised of the dates for the surgery as they become available, though it’s sure not to be tomorrow. My understanding is that I need to have been out of chemo for at least one to two months prior to undergoing any surgical procedure. If nothing else, it puts a hold on the chemo. The eternal optimist in me always has to find that stupid silver lining.

Hopefully, that part will never disappear.



2 thoughts on “Life Free From Straws

  1. Ruth says:

    tears running down my cheeks my man
    down on my knees
    know that you matter alot and NEVER lose the silver lining for us

  2. I wish I could say more than just wow, but… wow.

    You’re in our thoughts out here, absolutely. I’ll spread the word that prayers and good thoughts need to be directed east. Definitely keep us posted.

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