Category Archives: ALKPositive, alkpositiveworldwide

How can it be that I feel so damn fine

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Nocturnal fog

Yes. Memory and financial challenges aside, this girl is good. Actually-absolutely amazingly goodie, good good. I guess I’ve still got that pesky cancer and I’m coming up fast on my fifty-ninth birthday, but I don’t feel the least bit ill and middle age? Meh.

Two months ago I joined the gym that my son August belongs to. Bless his heart, Aug has allowed his mom to tag along and has even become my personal trainer. I basically follow his workout routine (heavy on free weights with some machines mixed in) and just lift less. Same number of sets though and I get a kick out of the fact that I am shadowing a cut thirty-three year old male. And although I still can’t do either a full push-up or a pull-up (that will happen though), I can hold a respectable plank for three minutes, thirty seconds. For real.

The trick to going to the gym is making it a habit. I joined a week before August left for Burning Man and he figured I’d bail while he was away. Not. I got that routine established and once he was home I was all about it. One thing I just love about working out is that all that hard work pays almost immediate dividends—I was stronger by week two. Talk about positive feedback.

While acknowledging that chance and one of the best oncologists on the planet are key, I like to think that my lifestyle has contributed to my longevity. In addition to exercising one to two hours daily (walk + gym), I eat a healthy diet–few carbs, lots of veggies, almost no processed sugar. Organic everything when I can afford it. My biggest sin is alcohol (put that one in the pleasure category) but I drink moderately. And I indulge in an edible now and again but that seems more a plus than a minus.

I believe my immune system is now stronger than my cancer. And that belief is bolstered by this article from the NYT:

Given the abundance of cancer mutations in healthy people, why isn’t cancer more common? Dr. Martincorena speculated that a healthy body may be like an ecosystem: Perhaps clones with different mutations arise in it, compete for available space and resources, and keep each other in check.

Per my own ecosystem, I’m obviously doing what I can. However, I have another theory as to why I feel so fine. In addition to it’s cancer inhibiting properties, lorlatinib has an interesting side effect. When I first went on trial I was sleeping ten hours or more a night. Wild, vivid dreams but a deep restful sleep as well. On lorlatinib, if I don’t get enough sleep, I get shaky and feel like shit. So I’m highly motivated to make certain I am not sleep deprived. And although I no longer need ten hours, I now get a solid eight.

Prior to starting on trial for lorlatinib, I had spent most of my adult life struggling with sleep issues. Insomnia, restlessness, waking up in the middle of the night and not being able to get back to sleep, night terrors. As a result, during the day I was always exhausted. I mean, always. If I could find a way to take a nap I would but that just made the whole nighttime sleep cycle more screwed up.

Now I sleep like a child. Soundly. Lots of vivid dreams but I hardly move. If I have to pee in the night I fall right back to sleep and many nights I sleep straight through until morning.

This has had an astounding effect on how I feel. No longer am I yawning all the time and struggling to keep my eyes open. But better yet, I think this wealth of sleep has put my own personal ecosystem back in balance.

Once upon a time, everyone got more sleep, as the sun was our primary source of light. Now our circadian rhythms are subject to the influence of artificial light. I think sleep deprivation has a far greater influence on our biological clocks than people realize–resulting in a negative overall impact on our health.

My advice? Eat well, play harder and sleep longer. Your body won’t regret it.

xo

So this is pretty fabulous

I want to share something wonderful with you. As a member of the ALKPositive group, I offered to start an Instagram page where photos and stories of ALK+ patients could be shared. I knew it would be special but I had no idea how special. Nor did I realize how moved I would feel as I transcribed these individual stories of suffering but also formidable grace and courage. So many beautiful faces. Almost all of them stage IV. Far too many of them young, including a number of women who were diagnosed either while pregnant or just after giving birth.

But what shines through the most? Love. Lots and lots of love. Please go to Instagram and check it out at alkpositiveworldwide. Follow us. If you are ALK+ (or if you have lost someone who was–this is intended to function as a memorial as well) and you’d like to be part of the wall, submit a photo to me as well the following information: Date of diagnosis, stage and age. And a brief statement about living with ALK+ lung cancer.

This is our opportunity to show the world the faces of lung cancer. Brave, beautiful, loving, living, finding ways to cope and always, always hoping.