Monthly Archives: December 2019

Weary

Not in spirit, not in soul. Just body.

This part of chemo I had forgotten. A bone numbing fatigue that even a consummate overcomer such as myself cannot override.

It is difficult to be patient. My mental energy remains exultingly high. I have plans, big plans. And much to accomplish.

In three weeks I shall have my first scan and will know better whether this hit on my physical self has been for naught. Of course I remain exceedingly hopeful that my cancer is also struggling. And if that is the case, well, then I can continue to justify this reduction in stamina.

I have an agenda. A clear agenda that keeps me incredibly focused. Tolerant of discomfort. Stubborn and steadfast. Eyes on the prize. Eyes on tomorrow.

xo

Sometimes I love me some drugs

Not gonna lie. The unholy combo of lorlatinib, carboplatin, pemetrexed, MOVING has been kicking my ass. Oh yeah, and cancer. Two twelve hour one day drives to Toledo and back were not as restful as one might assume. My energy is shot, my skin is shit (long term side effects of lorlatinib not helped by the new stressors) and last night I fell to sleep just imagining that I was a baby held in some loving arms. Breast fed, not with a bottle–the route my hep fifties mom went 😉

Yep. I am spent. Second infusion is tomorrow and steroids came to my rescue today.

Nasty, nasty drug that one. Insomnia, constipation, rage. But also an unnatural sense of energy just when mine was flagging. And not one to waste an opportunity, I got a hell of a lot done today. This new little home of mine is looking just like that—a place that someone would like to come and stay awhile. Maybe hunker down a little.

Mañana mama.

xo

Rattle and roll

I was exhausted last night. Rightly so, I imagine.

As I lay in bed, I could feel the powerful impact of two different cytotoxic agents on all the various bits of me. Havoc was being wreaked, like some marauder in the garden.

I went with this garden imagery, the cancer in my lungs a persistent and deeply rooted weed. And I pictured it being torn asunder, plucked from the substrate of my flesh, shaken violently, bent, torn, limp, lifeless. Every last cell of it.

When I awakened this morning the sound in my lungs had changed in timbre. The crackle of leather had been replaced with something akin to a broken tea cup. Very fine bone china, rattling around.

Hmmm, I thought. This is an improvement. What was hidebound now feels looser, dryer, easier to dislodge.

Onward.

xo

Up and over

When titling my previous blog I had a verb in mind. An action verb.

Chemo is a wall. And–frankly–that is the point. What sucks for me hopefully sucks for my cancer as well. All those side effects are indicators that the poison is going about its nasty little business.

What I’d like to clarify is how I’m taking this. Not lying down.

This particular chemo combo is a small misery compared to what I have experienced in the past. Fifteen years ago I was given a doublet of cisplatin and taxotere. My then oncologist explained, in the bluntest terms possible, that he intended to bring me to the brink of death and then bring me back. All in the name of eradicating my cancer.

Well he was true to his word. That shit blew. And I’d start to feel the side effects before we even got home after infusion. I spent days riding out the storm in my lazy boy chair (dubbed the lazy girl). By the fourth cycle I didn’t have a hair or an ounce of extra fat on my body and I was coughing up what looked like coffee grounds.

Now that, my friends, was hell. And it gave me some perspective. A rocky baseline if you will. Added to the mix was the fact that seven weeks earlier I’d had a lower left lobectomy, not vats but rather the old fashioned way. Ribs spread, large incision. Brutal.

So this is, relatively speaking, a walk in the park. I do feel a tad crummy. But I am also going about my business. As I live alone that means walking the dog, shopping for groceries, cooking. And, because my life is in fact over the top crazy, moving.

Yes. Again. My current situation did not work out quite as I imagined. One of my closest friends understood that this had become a source of stress for me and as fate would have it, an apartment that was located directly across the street from her opened up.

It was now or never and given the possibility that I may feel worse rather than better in the future, it was a no-brainer.

So yeah. Rather than surfing the couch I have been loading and unloading boxes. Yet again. On Wednesday my friend Melinda has arranged for a moving company to take the furniture and the books. And yet another impossible task will have been accomplished. Under ridiculous yet necessary circumstances.

I share this all so that others understand that even though chemo is undeniably unpleasant, it is also doable. This is an important concept for those who have only been on targeted therapies, and who are loathe to consider chemo, because of its bad rap.

In my case, I have a clear and unwavering agenda. It’s this: I really want to live. And I am willing to scale a million walls in order to do so.

Who knows. Maybe chemo works better if you’re not laying on a couch. I kinda doubt anyone has done any research around physical activity post infusion.

Consider this a pilot study.

xo

Scaling

I have hit the wall that is week two. Massive fatigue. Rheumy eyes. Gums that weep, a mouth that feels like sandpaper. Nosebleeds.

Loose of bowel, I’ve lost five pounds. Neuropathy is both afoot and at hand.

Numb and bloody. Edges and corners raw. But alive.

Alive, alive, alive.

And happy about it.

I had the thought that this is what cancer reduces existence to. Gratitude even in misery. But then I rethought that thought. And this time it came out this is what cancer elevates existence to.

How fucking fantastic is that. This, my friends, is unconditional love. Life, so treasured, that even when it’s all a bit raggedy it remains sought after. Beloved. Adored. Precious.

Something worth fighting for.

xo

Arc

Last night I lay in bed and imagined my life before me. And it stretched wide and far—a great space in my imagination. Clear, the faint blue of of a pale robin’s egg or the edge of evening.

I got this feeling that it is not over. I got this feeling that like a child pushed on a swing, I shall travel up and out. That I will keep moving. That I am not done.

xo

Oh girl

I think I got this.

I drove myself to and from the hospital yesterday. No problemo. Early morning breakfast with my daughter, and then an appointment with a neuro onc. Two weeks ago I started getting this very brief and yet excruciating pain on the top of my head. It lasts seconds, is intermittent and unpredictable in onset, but is always in the exact same place. And it stops me in my tracks.

My first thought was an unusual presentation of shingles. But given that I am a cancer patient one must always rule out other possibilities. My exam demonstrated decreased sensitivity on the left side of my body, top to bottom. My brain MRI’s have been positive for multi infarcts for some time now (little strokes) and a slightly larger stroke is a possibility. As is–the highly unlikely–scenario that I have a tumor or some other structural impingement. This finding is seemingly unrelated to the pain on top of my head which could be trigeminal neuralgia or maybe even just some weird neuropathy. At any rate, I’ve not had a brain MRI for a good long time now and so one is scheduled for the 19th, when I receive my next chest CT scan. This will necessarily be with contrast, but evidently better contrast than before.

After that I was joined by my friend Jenny Ro, who you’ll hear more about later. I met her while I was preparing for my TED talk and we just immediately clicked. She was gracious enough to offer to be my chemo buddy yesterday. My son Peter joined us for a couple of hours as well, lending an almost festive feel to the affair.

First up was scan review, and it was as I expected. Overall progression. Not rampant but persistent. Alice said she was glad we’d decided to begin treatment.

And then, up to the eighth floor and infusion, where I was immediately recognized by a phlebotomist. That’s what happens when you’re a lifer. Some saline, ten minutes of carboplatin, more saline and then thirty minutes of pemetrexed. In and out.

It was necessary to stop at the pharmacy as I was out of ativan and needed some scrips for anti emetics as well. And some tortilla chips to go with the guac I’d stocked up on the day before. That, some cut fruit, and turmeric milk all went down nicely.

I slept like a baby, waking once in a cold sweat with tears all over my face. No idea why.

Today I am feeling a little bit more like I’ve been run over by a truck, but again, all manageable. Alice texted me and I said that if I continue to feel ok, then next time I’d like to consider ramping up the carbo dose. Of course, I have a scan prior to that, so if it’s not doing anything, I suppose there is no point. But my fervent hope is that it is.

This girl. This girl wants to live.

Oh boy

Back to the hard drugs. Yessiree bob, tomorrow I add carboplatin and pemetrexed to my daily dose of lorlatinib.

Today I stocked up on chicken soup, fruit salad and crackers. My couch, blanket and a fresh magazine are at the ready. Kumo will be spending a few days with Susan, the incredibly kind woman who watches him when I travel.

I shall be driving myself to the hospital–but my friend Jenny and my youngest son Peter are both meeting me for infusion, which will make it all a bit more festive.

As much as I am dreading this (no, it doesn’t get easier), I am also chomping at the bit to switch things up. My cancer is getting just a little too cocky.

So yeah, bring it. I’ll be wearing my diamond earrings, the ones set in platinum. 😉