Monthly Archives: May 2019

C’est moi

Posted on May 15, 2019 | 4 comments

Freethinker: a person who thinks freely or independently : one who forms opinions on the basis of reason independently of authority especially.

I view the world from two distinct lens. Natural law (an observable law relating to natural phenomena) versus human constructs. And I really, truly only respect the former.

Although I would argue this is a sensible approach to life, I often run afoul of those entities which either hew to or consider themselves The Authority. Undoubtedly this viewpoint started early in my life, when so-called rules got in the way of whatever activity I had planned. My response to being admonished by my parents and or teachers– ‘You are not the boss of me’ was certainly uttered only under my tongue after the first few retorts resulted in a spirited spanking.

Tall, tom-boyed, gap toothed, left-handed, atheist. Non-normative comes naturally to me. Which is not to imply that I am always well received.

What is a breath of fresh air to some is a pain in the ass to others. Just ask my soon to not be landlord.

Or the pharmacist who would not refill my prescription (for a drug I have taken for fourteen years) simply because there was an error in the way it had been transcribed, with it reading both every seven hours and twice a day.

One week later I finally said to him, ‘You know, it doesn’t matter what it says on the bottle, I will take those pills as often as I want to anyway.’ Note added to chart, I would imagine.

Fortunately my oncologist is on board with logic and is a goddess of empathy. As the scrip was for ativan and I was coming off of two sleepless nights per restarting lorlatinib, I was feeling a little desperate. Saturday night I messaged her. She was out (on a date with her husband, I hope) and yet stopped what she was doing to call the pharmacy on my behalf.

That night I slept like a baby. Dreaming dreams unschooled and unkempt. Authority free.

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The ugly

Posted on May 13, 2019 | 8 comments
Ouchy.

After fourteen years and three clincal trials, my veins are as heavily trafficked as a junkie’s. And getting a needle in there is not for the faint of heart.

The first nurse who tried to take my blood in the ER simply gave up. No shit. “A new shift is coming on” she said. Several hours later nurse number two gave it a go and the aftermath is above.

Clearly all phlebotomists are not created equally. Thank the heavens I am not needle phobic or I might have given up the ghost long ago.

I share this little bit of ugliness simply to remind all that cancer is a multi-faceted disease. There is the injury but also the insult. The simple but not so simple little shit that we all put up with on a daily basis.

The collateral damage that comes from living with a chronic disease that requires both constant treatment and attendant monitoring. I mean, I can’t even fathom the amount of blood that has now been drawn from my body. Liters upon liters. Years upon years.

Just part of the price I pay to hang with y’all a little bit longer.

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Posted in ALK mutations

Never really gone

Posted on May 11, 2019 | 5 comments

Once you have cancer a headache is not merely a headache, it’s a potential tumor.

My gallbladder issues–although garden variety in nature–were immediately suspect for liver, pancreas, metastases as sources of trouble. Some scary moments there, as each of those scenarios would have meant a further limitation of options. When running on empty, you want to keep the road as clear as possible.

Fortunately my worst fears (like that headache, always in my back pocket) were not realized.

And in true lemonade from lemons fashion, my little adventure resulted in some marvelous insights.

First, that my family is indeed my rock. Good, that.

Secondly, that underneath the me of lorlatinib, my old, true self is extant.

WTF am I talking about? Well, Alice had me hold drug once I’d been admitted. I went six days without therapy. Lorlatinib comes with a host of strange side effects and within days, some of them began to subside. Alice was the first to notice that my speech was not so slow. And suddenly I was intensely aware of everyone’s cologne–I hadn’t even realized my olfactory had been compromised.

My neuropathy in my feet is so severe I can walk around with pebbles in my shoe and not know it. My toenails have all gotten ingrown while on lorlatinib, requiring surgery on eight of the ten. One is still pretty raw but normally I can’t feel it. Suddenly it hurt like hell.

But, best of all, I started to feel like me. My ability to think in an organized and linear fashion had magically returned.

Sigh. It was but a brief visit with myself, as I started back on drug two days ago. Two sleepless nights later I am once again struggling to complete tasks and my toes are numb.

However, there is comfort in knowing that I’ve never really gone.

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Stone baby

Posted on May 9, 2019 | 19 comments
Night shadows

Life threw me a little curve last Saturday. It started with a sharp pain in my right side. At first I thought it was a muscle cramp but it went zero to sixty as it wrapped around my back and moved up between my shoulders. Two hours later I realized I was in some trouble when I tried to go to the bathroom and almost fainted.

Living in a community has some solid perks. We have a loft-wide email and I sent out a plaintive message: Help. Within five minutes a number of neighbors had responded. One called 911, another agreed to watch Kumo.

In the meantime I had messaged my oncologist, who made it clear that she preferred I come to MGH rather than the local hospital. Once the ambulance arrived they told me they weren’t able to transport me to Boston so two of my neighbors, Ann Marie and Bill, pulled their car up to the entrance of the lofts and then drove me straight to the ER at MGH.

My daughter Jemesii and son Peter were already there when we arrived. And man, did those two advocate for me.

I was in the most serious pain I’ve ever been in (with a spiral fracture of my ankle, a ruptured ectopic pregnancy, and vaginal delivery of a 10 lb 4 oz baby for reference). Jem and Pete manned the call button and pestered the staff until I got my first dose of morphine and a handful of relief. When the ER doctor came to examine me he asked what I had been doing just prior to the pain starting. ‘Eating popcorn’ I said. ‘Buttered?’ he asked. Well, of course.

He then said, ‘I am almost certain this is a gallbladder attack.’

I could live with that. The problem is, none of the diagnostics (labs, CT scan, HIDA scan, x-ray, ultrasound, colonoscopy) were confirmatory.

Fortunately, by Tuesday (day four) the pain and nausea began to ease. That night Peter came to hang out with me and he was reading to me about what it was like to pass a gallstone. It suddenly occurred to me that that morning when bathing (after a little accident secondary to prepping for the colonoscopy) I had found what, in retrospect, was almost most definitively a gallstone.

Well, medical science likes clear hard data so the official diagnosis is no diagnosis. But I haven’t any doubt now what happened. In fact, when describing the pain, I said it was like trying to pass a cherry pit through the head of a needle. And once the morphine kicked in, I joked with my kids that at least labor resulted in something good, like a baby. Not, as it would turn out, a stupid stone.

However, even though I could have done without this particular adventure, it was a formidable bonding experience for me and my adult children. In the face of crisis, we all responded quickly and without hesitation. In the ER my son and daughter took turns holding my hand and only left just before midnight because I shooed them out.

This will not be the last storm we face together, and as a trial run, I’d say we all got an A+. Yea for team Linnea.

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