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.
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. 😉
A day set aside to celebrate our good fortune at belonging–to humanity and on a smaller scale, to a group of friends or better yet, a family.
However, if you’re estranged from family, have lost someone you love, or are just plain alone–holidays are a very different thing.
Salt to the wound.
Take Thanksgiving. I was born on Thanksgiving and for most of my life, it was my favorite holiday. Four months after my own diagnosis with lung cancer, my father Ollie was told he had pancreatic cancer. Almost four months to the day later he died, on Thanksgiving Day.
For years my family celebrated Thanksgiving in Marfa, Texas, where we owned a second home. Ten years ago I turned 50 there–on Thanksgiving. It was a flipping big deal because the summer before I had been told I had three to five months left to live. And here I was, the big Five Oh.
But the past six years have been entirely different. Mere months after I left my marriage, I lost my mother Evalynn as well. I became a de facto orphan and my own family unit–the one I helped create–had also been torn asunder.
When it comes to holidays, my children are more likely to spend time with my ex-husband. He lives closer to Boston, in a real house, and he prepares both a formidable Thanksgiving Turkey and a killer Christmas Ham. I get it.
And yet I don’t. I was the mom who went all out at Holidays. Not decorations (I am the anti-Martha Stewart) but rather details. My son August believed in not just Santa Claus, but also the Easter bunny, leprechaun, and tooth fairy. Fervently.
This year I was fortunate to spend Thanksgiving (and my birthday) with good friends. It was wonderful. My friends always come through.
But I missed my family. Terribly. And yesterday was a reminder not only of what I should be thankful for, but of what I have lost.
The first thing I said when I got up this morning was ‘Linnea, it’s your birthday. You’re still alive. Not sure how you do it, but you do.’
Gotta say, I didn’t think I was going to have an opportunity to get old. And so far, I’m loving it.
However it is all very bittersweet. Yesterday I spent time with someone who I care very much for. Someone who is young–too young–and who is in the last stages of fighting this disease.
And that breaks my flipping heart.
We’ve made significant progress when it comes to the treatment of lung cancer. More of us are living longer. However, the majority of effective treatments are still targeted therapies that are classified as inhibitors. By definition, inhibition restrains or restricts. When you are talking about targeted therapies, inhibition is almost always temporary. Cancer is an incredibly wily bitch; it finds a way around.
And sadly, medical research doesn’t operate at quite the same speed as wildly mutating cells.
It’s all quite complicated, actually. Regulations, incentives, the sheer enormity of the problem. However, from the perspective of the patient, it is actually absolutely straight forward. We want to live. And far too many of us are still dying.
So yes, I am happy to have this opportunity to turn sixty. It is a reminder of far we have come. But also how far we have to go.
I’m not talking about cancer; I’m talking about life. The stuff I don’t usually share here, in a blog.
However I’m going to give you a little window. Yesterday I paid a visit to a dear friend who just got out of almost two weeks of intensive care. She is yet in hospital, but out of crisis. Sort of. Cancer is always a crisis.
Her husband has been by her side throughout this ordeal. His love for and dedication to his partner are a joy to behold.
When I got to her room in Lunder yesterday she was drinking a big assed root beer float, not typical hospital faire. Her husband sourced that root beer float himself, assembling ingredients from Whole Foods and CVS.
The last time I went through chemotherapy I was still married. My husband drove me to chemo essentially because a close friend told him he had no other choice.
My side effects after the first session were so severe, it was thought I might have an allergy to carboplatin. I was tested but the results were negative. However, at the next round my dose was titrated, just in case. And a crash cart was at the ready.
As infusion began, my husband stood and said he was going to get some lunch. I asked him if he would bring me back a coffee from Starbucks. His response was ‘I might and I might not.’ And he didn’t.
In retrospect, we had a bit of The War of the Roses going on. But I was vulnerable and seemingly dependent upon this person, my partner. And I thought chemotherapy was sufficient cause for a truce.
Because I was married, friends and family were under the impression that my needs were covered. In truth, it is far better to be alone and to understand fully who I can count on. Me. Myself. I.
I had an oncology appointment in Boston today and met one of the new members of my team. Alice will remain my oncologist, but her role will necessarily be more limited than before. I told this new doctor that I felt my cancer was now in my right lung as well–I can both feel and hear it (wheezing/crackling). She took a listen with the stethoscope and confirmed.
So those horses are not only out of the barn–they are moving to another pasture.
Obviously that’s not a good thing. It’s a damn shame that lungs are an essential organ, but it is what it is. And what it is, is that it’s getting harder to breathe.
Time to spring into action. Given the fact that I have some upcoming big plans (a panel at Takeda, my TED talk, birthday, Thanksgiving) we are holding off until December. Scans on the 2nd, first infusion on the 5th.
Originally the plan was to add carboplatin and avastin to lorlatinib. However I have already had four rounds of carbo as well as four rounds of cisplatin. A lot of platinum for one girl. My peripheral neuropathy is rather severe, particularly in my feet. On various occasions I have walked around unaware that I had cardboard liners, stones, or wet socks in my shoes. The bottom of my feet are almost totally numb, and although I have adapted to this unsettling scenario (only an occasional stumble) we certainly don’t want it to get worse.
So Alice felt carbo was not the best bet, and that perhaps we should go with pemetrexed instead. We were going to add avastin, in the hope of hitting the cancer with a bigger hammer. However, I have been coughing up some blood and also have had small abrasions become larger wounds that were loathe to heal–both indicators that I might be at greater risk for bleeding in my lungs secondary to avastin.
There is a distinct possibility (and a big, big hope) that chemotherapy will have a synergistic effect with both lorlatinib and binimetinib–the drug I would receive in conjunction with lorlatinib in the next clinical trial I shall enroll in. Given that, I want to make certain our approach is not tepid. As avastin has been ruled out, I asked that carbo be added back in–but at a lower dose. If I tolerate the first round, we will continue. If not, then it will simply be pemetrexed.
I had a vitamin B12 shot today and will begin taking folic acid in preparation for infusion. I am ready but also understandably leery. This will be the first time that I have undergone chemo while living alone. That in itself should be a bit of an adventure. However, I think I know what to expect.