I had a routine follow up appointment today and I now have blisters on both retinas; yet considered mild retinopathy but concerning enough that I am off binimetinib and advised to go to the emergency room if I experience any visual changes.
I asked the retinal specialist why MEK inhibitors have this potential side effect and she said they felt it was an auto immune response. Well, I’ve got split fingertips, pustular acne, mouth sores, slowed speech, cloudy thinking, and some pretty troublesome neuropathy in addition to my current eye issues. Not to mention high cholesterol, elevated creatinine and low iron. Why can’t killing cancer be easier?
This is a tough spot to be in. I know that binimetinib and lorlatinib have shown efficacy against my cancer. But it is highly possible that the combined toxicity shall ultimately prove intolerable.
This is a good time to remind my audience that this is the explicit purpose of phase one trials: evaluating toxicity and establishing maximum tolerable dose. The actual experience can be as brutal as it sounds.
I have scans tomorrow, review on Monday. And I am certain a discussion as to how to proceed shall ensue.
I have been close enough to being homeless that I never take a roof over my head for granted. Never. Ever. On walks, I instinctively look for the place I would bed down if needed. And whenever the weather is particularly inclement I repeat, like a prayer/chant/mantra–I am glad I have a home. My first two children, who were almost homeless with me, grew up hearing these words. And I would imagine it is something that remains firmly ingrained.
My current apartment is lovely. Good bones, both physically and psychologically. I am grateful I landed here before the pandemic. And also grateful that I have the money to pay rent.
However, this unit is missing a few things that are on my wish list for forever home. A bath tub, for nights like tonight that are not just cold, but bone chillingly damp. A hot bath, good book and a glass of wine are all I need to set the world right sometimes.
A fireplace. That smell, that crackle, and once again, that warmth.
Laundry room. Not even necessarily a room, but someplace other than an earthen floored basement down a rickety staircase.
Fenced in yard. I love walking Kumo but then again, sometimes it would be nice to open a door and simply tell him to go. It is supposed to get down to ten degrees tonight, and the wind is howling. This is the sort of scenario I have in mind. And Kumo? He would love to have some grass to lie in, come spring and summer.
A garden. I so miss growing things. And the incredible meditation that is watering–never a chore, always a damp pleasure.
And now–true pie in the sky. Wouldn’t it be lovely to have a studio just outside my door; to be accessed at all times of the day.
To conclude? Shoot the moon. A partner, to share this all with.
Yesterday was Rare Disease Day. Now y’all know how I feel about days. However, this year this one caught my attention.
The definition of a rare disease in the US is one that affects 200,000 people or less. Approximately 12,000 people are diagnosed with ALK+ lung cancer annually. However, given the amount of time ALK+ has been a thing (since late 2007) as well as our still high mortality rate, we are a rare disease.
Let me tell you about when I found out I had ALK+ NSCLC. It was August of 2008. And to the best of my knowledge, only three other people had been identified as ALK mutants.
Lonely does not begin to describe how it felt. However, I also experienced hopefulness–I was, after all, a dying woman who had suddenly been thrown a crumb (a mutation–targetable–with a phase I clinical trial at my very hospital). Gratitude, as well, that a big ass pharmaceutical company like Pfizer would have taken on such a rare disease.
By the time I was diagnosed with ALK+ lung cancer, the first of my kind would have passed away. I never even knew his name. However, numbers two and three would become fast friends of mine. Unfortunately, number three, Kevin Brumett, passed away in the spring of 2009. However, number four, Sarah Broom, and I had the time to develop a very close friendship. Sadly, Sarah passed in 2013.
By now, thousands of people have been diagnosed with ALK+ lung cancer. We have become a large, extended family.
I am, I must suppose, the longest surviving ALK mutant. However, so very much has changed since 2008.
There continue to be new treatments, attested to by the fact that I am currently enrolled in my fifth clinical trial (Alice corrected me last week–lorlatinib plus chemo was not a trial. I apologize for exaggerating my credentials 😉 ) And my ALK family is one to be flipping proud of. The energy they have for support, raising awareness, and generating funds for research is incredibly humbling.
In the lingo of cancer, unexceptional is a good thing. However, in another sense, everyone I have met on this path is truly exceptional. In the best of all possible ways.
Another taken. Too young, so loved–a zillion friends, her husband, three children and an extended family left grieving. A punch in the heart to the entire community.
Goddamn, it’s hard. So hard. But no one said this would be easy.
Given some of the responses to yesterday’s blog, I wish to clarify. If I decide to drop out of a trial, it is simply a change in strategy. I know some of you don’t like battle metaphors, but this is war. However, take the word losing out of the equation. Not loss, the personal and collective loss remains huge. And never ending. But no one loses their individual battle with cancer.
It’s more like a draw. When we die, so do any malignant cells. In the meantime, we fight. For ourselves, but also each other.
And we get sad. At times incredibly weary. Angry–always. Those who have passed are carried forward in our hearts. As a comfort. But also a hurt.
Life is beautiful, but it can confound. Hurt and anger? They compel. Those of us who can, will.
Although I am exceedingly grateful that I have had an actual response to this duo of drugs (binimetinib and lorlatinib), the side effect profile remains complicated.
Two drugs, neither easy, combined.
At the moment, the pustular acne is under control (and I have to say, I think pustular acne might be a stopping point for many). If I don’t go to the studio (not an option) my fingers are less likely to split. However I am struggling with some pretty severe insomnia and peripheral neuropathy–both the painful kind and numbing of my extremities. I am starting to stumble because of the lack of feeling in my feet and the other day it ran through my mind that perhaps it was time to get off this hamster wheel. For a spell. But as soon as I thought it, I also had this intense feeling that I would be letting people down.
How ridiculous, that. Firstly, this is my sixth phase I trial. Secondly, my first obligation is to self. You know, like on the airplane, where you are to put your oxygen mask on prior to assisting other passengers. And I am a cancer patient, not some sort of hero.
Per side effects, I haven’t even mentioned the high cholesterol, low iron, slowed speech and other cognitive changes that are secondary to treatment. And whereas the assumption is that TKI’s must be taken daily, do we really know if that’s true? We do not.
So let’s just say I’m mulling. Doing a bit of intensive risk/benefit analysis. Going for the long game but also not willing to suffer a whole heck of a lot more collateral damage in the meantime.
Sometimes little things can just hit me oh so wrong.
For instance, any mention of the ‘new face of lung cancer.’ This, my friends, is fantasy and fallacy. To be sure, there is a small but not insignificant uptick in the percentage of young, never smokers being diagnosed. However this does not constitute a new face.
New face is, just like emphasis on never smokers, unintentionally but inherently prejudicial. Bottom line, anyone can get lung cancer and no one deserves it.
The only context in which I mention my nonsmoking status anymore is when I am discussing my delayed diagnosis. Had I a smoking history, my shortness of breath and ongoing cough would not have been explained away by ‘adult onset asthma.’ Lung cancer would have been considered as a possible diagnosis and frankly I, the patient, would have inquired about the possibility. As it was, back in in 2001 (when I first became symptomatic) you never heard a peep about nonsmokers with lung cancer.
But, now we know. And although it is good to continue educating the general public, we should never do so at the expense of compassion or the advancement of bias.
Air is something we all share. And breathing is the single biggest risk factor for lung cancer.
I am in some sort of semi agitated/unsettled state. It seems I can’t keep my eyes open. But I also cannot sleep. Last week I tried Ritalin and although day one was great (focus! oh rapture!) I also vomited. As binimetinib can make me nauseous I attributed it to that but day two of Ritalin I was intensely sick to my stomach again. And, oddly, sleepy. I took a three hour nap–in the morning. Day three, sleepy, vomiting and there was no day four. Over the weekend I held my binimetinib, in case that was the cause of my droopy eyes.
After emailing Jess about this effect yesterday, I heard back from my scheduler today, asking if I would come in for blood work and possibly a transfusion. The latter because I have also been trending more and more anemic.
In I went, but wouldn’t you know it, my hematocrit had gone up a point and a half. Mystery not solved. The plan for the moment is to continue to hold the binimetinib and I am starting on some prescription iron tabs as well. We shall see.
In the meantime I went to bed tonight around 9:30. My brain was ready but my body was not. First I tried the shaky leg thing, but when that did nothing (sometimes it’s soothing) I found myself making shadow animals on the ceiling. Turns out I’m still pretty adept at rabbit, llama and giraffe.
I was making myself mad though as continuing to lie in bed when you cannot sleep is very quickly fucking annoying. So I got up and made a cup of tea. And now I’m writing a blog. In a couple of minutes I’m going to wheel that bike over to the garage and give sleep another go. Hopefully body and brain will be in accord.
I am, almost sixteen years into this shit, happier than I have ever been.
I love my dog, my kids, my friends, my home. My life, though still full of uncertainty and challenge, feels incredibly rich. I am making art, writing, working (part time consulting), back in the habit of reading–starting with Mary Shelly’s Frankenstein and now Moby Dick. I curtailed a bad habit I’d fallen into–drinking too much–a side effect of the pandemic and, well, despair. Thanks to some patrons? donors? dear friends? I am enjoying a subscription to Hello Fresh and am cooking really tasty meals. I am growing hair, toenails, eyebrows and eyelashes. My skin–initially a mess secondary to binimetinib, is under control with the help of antibiotics, clindamycin and Retin A. Just another adolescence.
The two environments I have been primarily limited to over the past year–studio and apartment–are both spaces that feel safe, comforting and inviting. This is due in no small part to the many friends who have feathered my nest in a variety of ways. Practical things, like a pair of air purifiers. A weighted blanket, that has provided so much comfort. Hats, chocolate, books, flowers, wine, music. Things that smell good. Lotions, creams, oils. These gifts have all added beauty and grace to what was an incredibly difficult year.
My exercise bike is finally getting used. I’m trying to teach Kumo English and in return I am attempting to learn dog. Too long a luddite, I am committing myself to greater computer literacy and a good friend has signed on as tech support. And hygiene. Not personal, again computer. I need to clean up my desktop. And my emails.
Because I am on a combination therapy, the side effect profile has been complex. Historically I have been shamefully noncompliant when it came to filling out my drug diary. I am amending my ways as I feel any information I can provide per the relationship between dosing and side effects is now critical.
I am starting to go through my closet. I need to lose a little more weight before I start trying things on again, but I am looking forward to that time when there is a reason to dress up again. After years of thrift shopping/hunting for vintage clothing, my wardrobe looks a bit like a costume department. I can’t wait to banish my sweatpants to workouts.
Dinner with friends. Movies. Dates. These are all in the future tense but I am beginning to feel a sweet anticipation.
It’s amazing what ecstasy a simple vaccine can bring.
After a year of hiding in my cave I am now able to visualize that moment when I can carefully climb back out again. In fact I have the exact date circled in my calendar. March 20th, two weeks after my second shot. At that point my anxiety can go down so many notches and better yet, I shall be able to spend time in the company of a select few (those who are also two weeks or more out from their second vaccination). People!
After such extreme deprivation (remember, I am an extrovert), this feels like an utter banquet. A wealth, if you will.
Yesterday someone complimented me (via zoom meeting) on my hair cut. Later I realized that if I had been clever, I would have responded that it was not a hair cut, it was a hair grow. Same with my eyebrows. They delight me. I simply cannot stop touching them. And two days ago, one of my eyelashes bumped into the rim of a water glass.
I was alopecic (hairless) for one straight year this time. Got old, it did. Of course my newly boosted self esteem (I like hair) is challenged by the pustular acne and eczema that are secondary to treatment with binimetinib. I never go halfway when it comes to side effects. Fortunately, my team takes these every bit as seriously as I do, and has worked with me to find solutions. As long as insurance doesn’t keep me from filling my prescription for minocycline again, I should be able to get this under control.
Soon I shall be almost as pretty as I once was. That’s a joke. Ode to my brother in law Greg, who will say to my sister Bink, ‘You’re as pretty as you’ll ever be.’ Also a joke. Which reminds me of how my father Ollie once told me that peak intelligence was reached around age eleven. This was erroneous but I was highly anxious. And twelve. So of course I worried.
Anyway, I digress. Happily. After a trying year my life feels a comparative splendor. And about that trying year. I have been doing a lot of middle of the night thinking (insomnia), and recently I was pondering the concept of practice. Both in the Buddhist sense but also totally pragmatic (which Buddhism, after all, really is). Repetition is the essence of practice. If you do something again and again (good and bad habits), it shall manifest.
This past year represented a lot of hard work–emotionally. At times it sucked but, as my son August’s colleague so pithily implored him–’embrace the suck.’ August does. I have. And we’ve both grown.
So I made a real pest of myself. On Facebook and Twitter both. I also contacted all the members of my medical team. Multiple times. Same for Pfizer, who is co-sponsor of my current trial (and sole sponsor of two previous trials).
It was my contention, and it still is, that both the institution where I get my care (MGH) and the sponsor of my trial should have my back. Solidly. First, from a strictly humanitarian ‘we’ve grown awfully fond of you Linnea’ perspective. But secondly, I represent a significant investment.
In time, tissue, data, money. Currently enrolled in my sixth (SIXTH) phase I (FIRST IN HUMAN) trial, I’m like the fast horse that just can’t stop running.
It makes an awful lot of sense to try to keep me in the race.
Sigh. Like the royals, as an advocate, me is no longer singular. It is we. You, me, each of us. In one way or another, we are all a valuable commodity.
And, as I pointed out to my contact at Pfizer, you are the maker of one of the primary vaccines. There are no contraindications to my getting said shot. But if I get the virus? We’re both fucked.
Sometimes when you’re in need of love, it just doesn’t matter how you get it or who you get it from.
Friend of one of my closest friends. My friend heard there was a clinic for 75 and over where no-shows were a distinct possibility. She got my name on a will call list. The night of the clinic (in a town not too distant from mine) I got there an hour before closing. Fifteen minutes after the shop closed up I was still there. The parking lot attendant came over and knocked on my window. ‘I know’, I said. ‘It’s not happening. I’m getting ready to go.’ But no, wait, she said. Asked my name. Called up to the gymnasium of the school where the vaccinations were taking place. Confirmed I was on the list. Then she turned and said she would need to knock on some more windows–to make sure those with appointments hadn’t missed them. I waited ten more minutes. The attendant came back and told me to pull forward and to wait a little while longer. Five minutes later she was back at my window. When I rolled it down she said ‘It’s your lucky day.’
I could have kissed her. But of course, not really. Not anymore. Not yet.
I drove to another parking lot and walked inside the school. I was giddy. And then horrified to discover I didn’t have my MASSHealth card with me. I filled out the paper work anyway and when I was called forward, figured this was it. I’d screwed up. But no, it was fine. In the gymnasium I went. When I told the nurse who would be giving me my shot that I had advanced lung cancer she said it was an honor–being the one to vaccinate me. I got choked up.
As it would turn out, I would be one of the last people to leave the gymnasium. I passed a fireman on the way out and said ‘Hey, we’re closing the joint down.’
Last night I had so much adrenalin and was so frigging grateful that I barely slept. Odd, as it was the first time in a long time that I’ve felt safe.
It really shouldn’t be this difficult. Those of us with lung cancer are a seeming priority, when it comes to vulnerability to and devastation from a disease like COVID. However, I guess we didn’t make the cut when it came to likelihood of transmission. Obviously they don’t know me well 😉 (Super connector! Super spreader!).
So yes. I got lucky. And I wish I could wave my magic wand and get each and everyone of you a vaccine today. In the meantime, my advice is this. Continue to lobby the powers that be. Employ reason and guilt. Try to get on some waitlists and if you do, show up early and stay late. And, if for any reason you (healthy or not) luck into an opportunity don’t hesitate. Get that vaccine. This isn’t the moment for gallantry. We ALL need to get vaccinated, sooner or later. If you’re given that shot at a shot and you don’t take it, you’re potentially part of the problem.
Don’t be. A problem. Get your fucking shot the minute you are able.