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.
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.
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
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
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.
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.
My friend Hildy Grossman, a lung cancer survivor as well as a talented vocalist, founded an organization called Upstage Lung Cancer. Her dedicated cast performs annually and the proceeds go to lung cancer research.
In addition, every year someone receives the Fan Award and I am honored to share that this year that someone is me.
As the concert must now be virtual, it is also free (although please consider a donation to this great cause). Tonight’s the night. Register here, pour yourself a glass of wine, and sit back and enjoy.
I had a PET scan in Boston this morning, per my request. My concern was regarding the ongoing pain in my left shoulder. Dr. Lin felt it was 99% certain that it was referred pain from the atelectasis in my left upper lobe. I wanted to rule out a bone met.
Well, Dr. Lin was spot on, as the scan highlighted the hot spots in my lungs but nothing in my shoulder:
Mild reactive FDG uptake to loculated left-sided pleural effusion, unchanged in size compared to 11/6/2020.
Intense FDG uptake to the subpleural masslike left upper lobe consolidation with superior and dominant anterior component. The inferior component measures 5.8 x 3.0 cm, unchanged compared to most recent correlation CT chest when measured in a similar fashion, but significantly increased in extent and size compared to CT chest from 12/2/2019 (3:117).
Additional smaller right upper lobe solid nodules demonstrate focal intense FDG uptake, with representative examples including 11 mm left upper lobe nodule (CT 4, 58; PT 3, 122) and 9 mm right upper lobe nodule (CT 4, 57; PT 3, 123). These nodules have demonstrated gradual increase in size, number and progression since 2019.
Mild FDG uptake to 1.0 cm right hilar lymph node (3:117).
So, those horses may be out of the barn but they haven’t moved to higher pastures. In six days, we’ll be taking another approach. At this stage of the game (multiple resistance mutations) anything is a long shot. Having a shot–any shot at all–is what matters to me.
The decision to start the new trial in a week was a good one. Results from my scan on 11/6 show growth compared to the scan on 10/26.
Increased size of left upper lobe masslike consolidation now measuring 42 x 17 mm, previously measured 38 x 14 mm. There are multiple solid and part solid nodules in the left upper lobe, some of which have increased in size for example a 7 mm nodule (series 6, image 230), previously 5 mm, and 11 mm nodule (series 6, image 187) previously 8 mm.
I have known since my first biopsy post progression that the histology of my cancer had changed to one that was more aggressive. This is the first time I have experienced such rapid growth though.
One week from today, on what happens to be my daughter’s thirty-sixth birthday, I shall take my lead in dose of lorlatinib and binimetinib.
In the meantime, I ask for your good thoughts/prayers/sorcery—all appreciated. I need to hit this shit with everything I’ve got.
November is Lung Cancer Awareness Month. I have said before that I don’t do months. Lung cancer is weeks, days, minutes, seconds for me. Year round.
In November many of my fellow advocates devote a lot of time to raising awareness–the squishiest form of advocacy. This year I am seeing a lot of upbeat photos of people who don’t look for a minute as if they are living with a disease like lung cancer.
Passing for healthy has been one of my favorite party tricks. At the moment, there’s not a chance in hell I could pull it off.
So here’s the thing. I believe in positivity while also keeping it real. Really real. And the truth is, those pretty pictures are each of us at our best moment.
I don’t believe people care more about something like lung cancer when the message is that people are living. Yes–it is inspirational for our community. But the rest of the world needs to hear the other side. That even though anybody can get lung cancer, very few will survive it.
My friend Andy Lindsay died two weeks ago, almost two years to the day after he was literally at the top of the world. If lung cancer can kill Andy Lindsay, it can kill anybody.
You are aware of my current situation. Having exhausted all TKI’s for those of us who are ALK+, I am back to non-targeted treatments–infinitely less effective and with a greater range of side effects. My friend Diane Legg, diagnosed with lung cancer months before I was, found out two weeks ago that she’s got three brain mets–after sixteen years of her cancer staying confined to her lungs.
Diane and I remain exceptions–having lived far longer than anyone thought possible. But I’d be lying if I said it was getting any easier. Not only is cancer and continuous treatment beating the shit out of us, we each have become close to hundreds of people who have passed away. Wrap your head around that one.
So yes. Let’s stay positive and hopeful. But let’s also get it right–both out of respect for those who have died but also for the sake of those who are still living. We need more money for research and we need it yesterday. Because having an opportunity to get older if you are going to age out of treatment options is one hell of a bitter pill to swallow.
Let me begin by stating how fortunate I am to have access to incredible care.
I had a chest x-ray and labs in Boston today. My bloodwork was good and the x-ray noted alectasis, but that was also called out in last week’s CT scan and there was no notable difference.
When Dr. Lin came in to see me we talked about my fainting episode, general underlying crummy feeling, and the increasing pain in my left shoulder. Part of my malaise is likely attributable to a sinus infection, so I am starting antibiotics tonight. The fainting is not easily explained–I had an EKG and it was normal. I had another episode of lightheadedness this morning while lying down, so she doesn’t feel it is syncope. It’s now been almost a year since I’ve had a brain MRI so I will get one next week.
As for the shoulder, unfortunately it is likely related to the cancer in my left lobe. And the only real way to address it is to see if we can arrest the malignancy. To this end, she said she felt that waiting another month to start the next clinical trial might be too long.
The trial we had talked about—lorlatinib plus binimetinib–had a slot open yesterday and my fast thinking oncologist grabbed it for me. I signed the protocol today, and next week prescreening will start. Her intent is that I shall start the trial the following week–my fifth phase I trial (this is IB–dose escalation phase).
I asked her if she thought there was yet any real chance of reversing the course of my cancer. She said yes. She also asked if I would be willing to try other chemotherapies. My response was affirmative, but I also told her that if it got to the point where further treatment was likely fruitless, I wanted her to be totally honest with me. She assured me that she would and also reminded me that at any time, I can decide that enough is enough.
On the ride home my mind was remarkably clear. I was jonesing for some potato soup—something I hadn’t made in years. And then–oddly, cornflakes. Another sentimental selection.
So yeah. Almost sixteen years in and this shit doesn’t get any easier. But–and this is wildly important–there are still options. And options represent hope.