Category Archives: Uncategorized

A differential diagnosis

While in the hospital I had a gamut of tests—neurology and cardiology, top to bottom. At the moment I am sporting a wearable that is recording my heart rate over a period of two weeks.

Thus far, everything (aside from my retinas, a finding which is incidental to binimetinib) has checked out normal. This afternoon I had a virtual consult with a doctor from neurology to review my recent episode. Her suspicion is that I did not, in fact, have a seizure. Instead, she attributes my symptoms to convulsive syncope, which can present as a seizure. This is an important distinction as anticonvulsants are not indicated. However, a cardiac workup, which is already under way, is.

I am relieved but once again, also impressed by the high level of care I receive from my doctors at MGH. Truly extraordinary.

xo

Best

I have the best friends. I really do. Not in a your friends are not as good as mine or I want to fight you about this sort of way, but man, I’ve got damn fine friends.

This is something I say with both gratitude and wonder. There are lot of things in my life that flat out suck, but when it comes to friends, I hit the flipping jackpot.

Take tonight. Alicia told me she was bringing over Jordan Marsh blueberry muffins that she baked with her MIL, Mrs. Mooney. Alicia did bring those muffins, along with apples, and wine, and turkey, and sherbet and treats for Kumo. I finally had to freeze the rest of the pot roast and on Thursday yet another feast is coming.

It’s an amazing thing, this loving and being loved stuff. Frankly, I just can’t get enough of it.

So thank you. For being you. And for playing such an important role in my life.

xo

Reboot

I was exhausted last night, despite the fact that I had spent the last several days primarily lying around. Sound asleep by 9 pm, I did not awaken until 11 am this morning. Fourteen hours straight. I am going to consider it a reboot.

Today I’m tidying up and looking forward to last night’s leftovers. My friend Martha brought me an actual feast. An entire pot roast, cheesy mashed potatoes, caesar salad, baguette, bottle of red wine, box of chocolates and some dried apricots. Oh–and some magical, melt in your mouth pastries called Kouign Amann from a shop named Annarosas. One for breakfast today, the second for breakfast tomorrow.

I’m also planning the week ahead, starting with several days in the studio. It is important to stay on track with a practice such as painting.

The rest of the week is one big question mark. My son Peter and I had planned to spend Thanksgiving together but that is in doubt because of COVID. It also happens to be my birthday–I shall be turning sixty one. It will be odd to be closer to age seventy than to fifty.

I think I am regarding the New Year with greater anticipation. It shall be a relief to consign 2020 to the past. I am already focusing on goals/resolutions. Making comfort more of a priority. Asking for assistance when needed.

Per that second resolution there is something I wish to clarify. I have not tried to cultivate the notion that I am tough and I can say with all honesty, it has never been my goal. The last time I saw my father Ollie (he died on Thanksgiving Day in 2005), he referred to me as his gentle child. I do believe I was born gentle. And also tender. Maybe a little too tender.

But in addition I am, through and through, scrappy and a survivor. Life has had its way with me. I have become as independent as I am now out of necessity. And that is not a bad thing. However, those who care have made it clear that when they help me out, it brings them joy. And of course, it brings me joy as well.

Therefore, 2021 is going to be the year of the ask. It’s not going to be easy and I may need some occasional prodding but I am open to personal growth. And, potentially, a little help from my friends.

xo

Home sweet home

My little adventure is drawing to a close. As soon as they get a read on last night’s brain MRI, I should be free to leave (just came in, all clear!).

In the world of healthcare, unremarkable is the most remarkable finding of all. And thus far results have been, as one practitioner put it ‘stone cold normal.’

The only diagnosis thus far was almost incidental. I reported some visual changes and so was seen by an ophthalmologist. I have exceptionally dry eyes (a side effect of my previous therapy) and some central serous chorioretinopathy, a potential side effect of binimetinib. Generally it resolves on its own but I will be followed by a retinal specialist as well. I shall also be wearing a portable heart monitor for two weeks, just on the off chance this was a cardiac event.

I also got the go ahead to drive myself back home. Sooooooo relieved. I am loathe to let go of any of my independence. In fact, yesterday I had to wait more than an hour for transport to come pick me up at Mass Eye and Ear. I asked a nurse if I could just walk back to Ellison and she took one look at me (in my johnnie and down jacket) and said ‘You’re not walking anywhere.’ My first thought was does she know who she’s talking to?—not in a I’m a celebrity sort of way but rather nobody tells me I can’t walk. Nobody. I had my car keys in the pocket of my jacket and for a fleeting moment I was tempted to stand up, walk out and drive straight home. Live free or die, y’all.

I calmed down. Transport came. I had chocolate ice cream for dessert. And today, I AM GOING HOME.

xo

A change of plans

So I didn’t climb those 94 steps to my studio yesterday. The night before I awakened feeling both nauseous and lightheaded. I stood up to go downstairs to grab a bowl and immediately knew I needed to lie back down.

The cold floor felt good and I stayed there for several minutes. But I wanted that bowl. I made it to the bottom of the stairs and the next thing I knew I was flat on my back. More concerning, I had peed myself. For a moment I also thought I’d vomited but I realized I was actually foaming at the mouth.

A bit disoriented, I changed out of my wet clothes and went back to bed. In the morning I googled peeing while fainting. There were lots of articles per the reverse–fainting while peeing. And that was when I realized this was likely a seizure.

I emailed Dr. Lin and before very long I had a call from one of my nurses–I was to come in. I grabbed my laptop and a book (just in case) as well as my charging cords. Kumo got dropped off at Susan’s and I drove directly into Boston. And yes, this might not have been the best choice–driving myself–but options are limited when you live alone. Also, note to self, I need to get better about asking for assistance.

Anyway, here I still am. A battery of tests, consults with both onco cardiology and neurology, and thus far, no clue as to cause (it is not thought to be related to the trial drugs). What does seem clear is that I might have had a grand mal seizure.

My guess is that I shall go home with some anti-seizure medication as well as the admonition to remain lying down should I feel lightheaded again. Evidently one of the greatest risks of seizures is injury secondary to falling.

So there you have it. Never a dull moment.

‘I’ll have a side of this…’

Not all side effects are bad ones. Lorlatinib has two that I rather enjoy. Vivid dreams (epic too, I swear I sometimes pick up where I left off the next night) and a surfeit of energy. Good energy, not the jittery heart racing stuff that comes from too much caffeine or (ahem) snorting coke. Or the rage-y artificial high that is secondary to steroids.

This is more akin to the way you feel after a sound night’s sleep. Well rested. Fresh. Ready to seize the day.

I’ll take it. My last therapy was a real buzz kill when it came to energy. And I am energy dependent. Lying around is so not my jam.

Plans, I’ve got big plans. That has always been my MO. And for the last few weeks I have been accomplishing the bare minimum. Tomorrow I am heading to the studio and I could not be more excited. Gonna climb those 94 steps if it kills me. And when I get to the top, art will be made.

xo

Down the hatch

The deed is done; I’ve had my first dose of both lorlatinib and binimetinib. It was all rather anticlimactic, this fifth trial. Sweet, (got two of my favorite nurses back on board), short and efficient.

Afterward I dropped the cake and birthday presents off to my eldest. We air hugged and I hit the road. Forty five minutes later a quick walk for Kumo, then I stripped off the clothes I wore to the hospital and showered (the ritual), and now I’m enjoying a piece of cake for lunch (Happy Birthday Jemesii!).

In a moment I’m crawling into bed with my heating pad. Hopefully I’ll have a nice nap but not before reciting some magic cancer killing incantations. We’ve got work to do, my body and I. Best get right to it.

Role reversal

Just another evening in paradise. Baking a cake, because tomorrow is my daughter Jemesii’s thirty sixth birthday.

Also memorizing my lines (Evalynn Linnea Olson, 11/26/1959) for my debut in yet another trial. Crack o dawn and I’ll be on the road to Boston and my lead in dose.

I’m preparing mentally for the rigors of this new role. A host of side effects with the most common being:

increase in cholesterol and triglycerides which can increase your chance of heart disease and stroke

damage to nerves in arms, legs, feet or hands causing tingling or numbness

slowing of speech

vision changes

fatigue

rash, acne, or skin irritation including redness, raised bumps, dryness or itching

swell or fluid retention in the abdomen, arms, legs, hands, feet, face, or eyes

muscles spasms, muscle pain, or inflammation

nausea

diarrhea

Some of this is old news to me, as I spent more than five years on lorlatinib. The zits are something I’ve not experienced since my brief tenure on tarceva in 2008. I am relieved that my hair is growing back. Better not to be bald and broken out. Whoopee!–In a deal with the devil sort of way. Signing on for whatever may come because I love life so fucking much.

There is no poetic justice here. Just a strong stomach for discomfort and an even stronger will to live.

Bring it.

Toughing it out

Sometimes what doesn’t break you can make you.

This is a blog about embracing the suck.

My mother, Evalynn, was hell on wheels. Smart, sassy and mean as a snake if you didn’t do what she wanted. As a child who was eager to please, that was awfully confusing. That is, until I figured out her modus operandi.

Charming, manipulative, even pleading until that moment where it became clear that I wasn’t going to budge. She schooled me, that one.

I like to say that one of my super powers is not giving a fuck. This is contextual. In truth, I care, really care, about most things. However, my upbringing made me impervious to pleasing those with an agenda.

There was a situation earlier this week that reminded me how polarizing I can be. Fortunately, most people love me (because I love them). However, every now and again, someone dislikes me. To the point of loathing.

Invariably this is an individual who wants something I will not give them. I was talking to my friend Ann about this, trying to understand why that would be so incredibly provocative. It is, she said, because you are so free.

I like that. Perhaps in the eyes of some a character flaw but one I can live with.

And goddamn, I intend to live. So suck it cancer. I’ve got other plans.

Revolving doors

On Monday I start my fifth first in human trial. It is, at best, a crapshoot.

Talk about not knowing if you are coming or going. Realistically, I am in a tough spot. Stability just doesn’t cut it these days—I need response.

If wishes were horses and if my ever growing to do list were enough to keep me here…But that’s not how this works.

It is time to get my will finished, even as I start a new painting. Feet in both worlds, now and nevermore. I am not ready. But I also understand that death is not open to negotiation.

The trick is keeping hope alive. And hoping my body follows suit.