Monthly Archives: November 2020

Staying in the game

I am watching the Queen’s Gambit on Netflix. Although not a fan of board games (Scrabble aside), I love me a scrappy protagonist. Female, better yet.

This might be the time to mention that I possess confidence. Extraordinary confidence. Not that I shall win, but rather that I have the ability to lose and lose again. And still want to keep playing.

To me, that is by far the most accurate definition of self assuredness. Whatever comes, I can and will handle it.

When I was first diagnosed with lung cancer, I looked at those five year statistics for any stage (14% in 2005) and I said to myself, this is going to be hard, but I can do this.

I based my self assessment on a realistic understanding of my strong points. I had never been the fastest, the strongest, or the smartest. Certainly not the luckiest. But I had a wicked strong streak of stamina. Knock me down and I’ll come right back for more.

Damned if it isn’t one handy quality to be in possession of. As of late my perspective has often been from the ground up. My labs today showed an elevation of Creatine Kinase, and my thighs were hurting—something I attributed to yesterday’s hike on the beach. However, it can also be an indicator of Rhabdomyolysis, which can happen both as a side effect of statin use (high cholesterol is secondary to lorlatinib) and binimetinib. My trend is yet mild (400) but they take this shit seriously, so for the moment I am holding both binimetinib and atorvastin. Tomorrow I have a crown replaced where I have developed a cavity, secondary to mucositis due to my previous therapy. And on Wednesday, I get to spend several hours with an ophthalmologist as I have also developed a mild case of retinopathy, a possible side effect of binimetinib.

In addition, I shall get labs again on Wednesday and if my CK levels are within normal, I am back on binimetinib with a long day of pharmacokinetics at MGH on Thursday and then back again for bloodwork on Friday.

What with all this time devoted to cancer, I hardly have time to be an artist.

I am only sort of joking. Again, this is why I feel participants in clinical trials should be compensated. Enrolling in a trial is often akin to a full time job.

Let’s just hope all this effort achieves its goal—keeping me around so that I can devote time to higher pursuits. Like art. And life.



I’m going to be honest. There just haven’t been that many days as of late that have left me breathless. In the best of all possible ways. Today was one of them.

My friend Jim picked me up at 2 pm and we headed to Plum Island Reservation. It was glorious weather. Cool, clear, comfortable. Perfect for a stroll along the beach. We walked and walked, finally coming upon a rather large group of people, all with telephotos drawn. I was initially confused–was this some sort of memorial? There was a lobster pot on the beach with what looked like a cross propped in it. But then I looked closer. All eyes were fixed upon an enormous snowy white owl. Had my photos done it any justice, I would share but this was a you just had to be there moment.

It was a long trek back to the car. As we left the island I looked back over the marsh and the full moon was rising. Two spectacular moments in one day! Damn it felt good to be alive.

Afterward we stopped at Brine, a wonderful oyster bar in Newburyport. Clam chowder and fried oysters with bacon and a soft boiled egg eaten al fresco. The perfect end to a perfect day.


The push and the pull

My new therapy, or rather combination of therapies, has afforded me more energy. I suspect it is the lorlatinib.

This has felt wonderful. I’ve taken advantage of the amped up feeling to get some major projects done. Long (and rather sad) story short, the vintage clothing business in its current incarnation is kaput. The combination of a pandemic and some major miscommunication between partners and we are no more. Circumstances willing, it shall rise again as a small, manageable, online version. But first things first.

I had to relocate the stock and furnishings, first to one storage unit and then a major downsize to a smaller one. I figure it’s as if I’ve stacked several cords of wood at this point.

There was also an old wooden shelf–heavy as hell–that I wanted to take to my studio. My friend Brian helped me load it into the back of my 4-runner. However, I got that puppy out and up to my studio by myself. My deceased mother (the queen of do it yourself) would have been proud. It was a classic combination of brain and brawn, as I employed physics (tipping and spinning across the parking lot) as well as brute strength (shoving it down the long hall).

My back is pissed as hell right now but there is something oh so satisfying about hard, physical labor.

Of course I wish I could tell you that this surfeit of energy was a positive indicator per the effectiveness of my current therapy.

Not. It is, I am afraid, merely a smoke screen. My shoulder feels better (go figure, after all the lifting) but my lungs sound like shit. When I lie down at night the audible wheeze is often enough to waken me from a deep sleep. A strange sort of bubbling going on as well.

Gross, I know. Even more so if it’s your body. And, fucking A, it means the cancer is just perking along. My big plans and hopes and dreams be damned.

So there you have it. In as plain a language as possible. I am alive but, well, not well. Still strong enough to fight but I’m going to need some more effective tools if I hope to gain some ground here.

And I do. I really do.

Oddity of the times

I stopped by the residence of my friends Brian and Caroline tonight. They had a gift for me, a pizza compliments of my pals at Phoenix Rising—simply the best wood-fired pie you are ever going to get from a food truck. Now that I am no longer a resident of Lowell, I have to surrender my regular status. But I shall always be a major fan.

Anyway, back to the visit. Brian is one of my best friends, aka my twin. Fortunately for all, I also adore his partner, Caroline. Beautiful, brainy, the best. Obviously, under the circumstances (twinship) nothing less than perfect would be acceptable.

Kumo and I stopped in this afternoon, for a visit and to pick up our pizza. A visit where we all sat around the bar in the kitchen in our masks, which we lowered now and again to have sips from our drinks.

And, I have to say, that it was flipping weird. Now these are two people who I am uber comfortable with. But goddamn, these are strange times.

As much as I love them both (a lot) I also had the sense that we would all be more comfortable once I had departed and the masks could come off.

It is so flipping sad. That said, I am a fan of masks. My brief stay in the hospital demonstrated just how easy it is to actually was to wear one 24/7. Yup, even while sleeping.

Easy and necessary. But not at all natural. I swear to god both my vision and my hearing are impaired while I am wearing a mask. It is as if the deprivation of one sense has compromised them all.

I just hope that compliance (wear the goddamn mask) shall facilitate the means to an end–that before too long we shall get back to that place where we can hug, kiss and smile freely.

Friends for a very, very long time

I am in the enviable position of having a group of girlfriends who I have now known for most of my life. Melinda–third grade, Sally–fifth, Amy–seventh and Kate–tenth. After high school we all went our separate ways but would still hang out over break. Once we all grew up and started careers and families, it took a little bit more coordination to keep those ties going.

For the past decade and a half, we have made a concerted effort to get together at least once a year. Of course, COVID has now thrown our little group for a loop, but we have gotten in the habit of twice monthly zoom calls.

Yesterday, in honor of my birthday as well as the fact that I would be alone for Thanksgiving, my pals ordered a repast from a local restaurant. Looking out for their Linnea friend, they were.

And Kate sent me a wonderful package of books, chocolate, salted caramel licorice (OMG–so good) and some fabulous coasters with a montage of photos. I won’t share the chocolate, but I can show you some pictures 🙂

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.



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.



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.


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.


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.