Lethal Letter Combinations

I hope everyone who celebrated Thanksgiving this week, had a wonderful and memorable holiday surrounded by the people you love 🙂 .

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NBA, CDC, FBI, HIV, CVS, ABC, RDI, BMI, BPM, KRAS, BRCA, NHL, WHO, LOL, LMAO, WTF, FML, and FFS. All interesting letter combinations with a variety of meanings and outcomes. Who knew that certain combinations thereof could be so deadly?

Walking back into the hospital the next day, was a completely different experience than the day before.  Lea and I spent what time we could reading about lung cancer, while getting children fed, bathed and put to bed the night before.  She and I both agreed that it was probably non-small cell but couldn’t be certain of the differentiation from there.  The survival statistics kept knocking me back, each time a page would pull up.  Lea’s death sentence seemed certain.

We finally met the medical oncologist, who seemed to be open minded and well versed, assuring us that he’d review any studies we find and answer any questions.  He was soft spoken and appeared to be in constant thought and appraisal of our interaction.  He lead us through his standard of care medication model, utilizing the whiteboard on the wall of the cramped little room, similar to the one we occupied the day previously.  He didn’t seem too fazed by the fact that Lea and I were of the much younger variety, but did comment that we weren’t the norm.

He explained that Lea had Non- Small Cell Lung Cancer with an EGFR mutation.  To go further, he said she’d won the lottery because it was the Exon 19 Deletion variety.  Some lottery.  He recommended that she begin targeted therapy immediately.  I remember Lea trying to joust with him on the immediate part, because she didn’t want to stop nursing her youngest. 

The past, present, and future merge

I remember a conversation, months before this moment, with Lea talking to me about having another child, hopefully a little girl.  I laughed, because it seemed she and Wade were barely juggling the two they had and deep down, their relationship wasn’t much of a relationship.  Wade had been stuck on a bunch of medications just before he and Lea were expecting their second child, and it made him a completely disconnected person.  He was also drinking on top of it all, and unable to work to provide for his family. 

All of this chaos began because of a pulmonary embolism, that was waved off for weeks before being diagnosed.  He continually went to the ER trying to get help because he was having difficulty breathing.  They kept sending him home and telling him it was in his head.  He finally got through to someone who believed him and it really messed him up. He was put on a nasty cocktail of drugs to help him deal with the anxiety in the aftermath, one of which was Klonopin, I believe.  He eventually weaned himself off, but it was a long and arduous process. Lea and Wade’s relationship was never the same.  It was one of those moments in life, that changed everything.

Lea was such a helicopter parent, I told her another baby would probably kill her and end her and Wade’s relationship, but to follow her heart.  She supported me through all my crazy ideas, and I always wanted to be there to support hers. All that said, as we sat in that little room, all of the talks of the future we’d had were swirling down a newly flushed toilet. No future was guaranteed.

After the experiences we had with the chemo drugs for Caelan, I recommended that she start weaning her youngest and consider getting her kids into their own beds before the shit hit the fan. Unfortunately, none of that happened.  I hadn’t really considered the targeted therapy, and assumed she was heading right to chemo, so this was uncharted territory. I knew some drastic changes were inevitable and that making the decision to make the change prior to, might have been the easier and more empowering option. I foresaw the challenges ahead, and hoped these things wouldn’t break Lea. I knew she was strong, but all of the extra was going to be tough.

I remember leaving the tiny room after meeting with the oncologist, and heading to the pharmacy to retrieve her life saving treatment. That was the day I was formally introduced to TKIs (tyrosine kinase inhibitors) and the new world of targeted therapy. Lea was prescribed Afatinib (Gilotrif), one pill a day…that kind of pissed me off that they didn’t have anything like that to treat Caelan’s cancer.  That said, all I ever hear is that pediatric cancer is different, and because there aren’t as many affected, the treatments don’t often change.  At the time of Caelan’s cancer treatment, in the last 25 years, pediatric cancer had only seen 2 new drugs emerge. Not certain if the same is true currently.  Archaic and barbaric, those are your choices if your child falls ill.  One pill a day, isn’t that something?  Not that that didn’t come with some major nasty side effects and the risk of death. Not to mention, it stops working eventually.

We got to the pharmacy, and my sister had a list of natural remedies that she had started herself on, prior to receiving her formal diagnosis.  We had to hand over the list, and wait for her prescription.  She was adamant that all of these remedies were going to assist in her defeating her cancer and she was not willing to take the targeted therapy until she absolutely needed to.  I knew she was terrified, as was I.  She never asked, and the oncologist never told, what her timeline could be.  She was determined to outlive everyone, no matter what she needed to do.  We sat silently in the empty waiting area, deeply contemplating and digesting all of the information we’d taken in that day.

Pharma cocktail

It was after 5 pm and the pharmacy and much of the hospital had already closed for the night.  A lovely young lady, younger than myself and Lea I’m certain, came around from the counter and sat down in the waiting area with us to go over the medication list and the new meds.  Lea was adamantly defending her elixirs of choice and the pharmacist couldn’t attest to any reactions of any kind because the Afatinib hadn’t been fully investigated for interaction.  She knew that Lea was hanging by a thread, and was gently trying to persuade her that she needed to take this medication, or the cancer was going to kill her. I must admit, I am not a fan of the pharmaceutical industry at all.  I won’t get into the reasons why now, but in that moment, my sister desperately needed to do something and fast. 

I finally had to jump into the conversation between Lea and the pharmacist and beg my sister to try.  She had two beautiful kids and everything to lose by rolling the dice on using only Essiac and vitamins and whatever else she had on that page.  She was desperately fighting for her life, but wanted it to be on her own terms. I completely respected that, but whatever had put her cancer there, wasn’t natural to begin with, and unfortunately required something much stronger than Chaga mushrooms and green tea.  I am in no way discounting natural remedies, each of us is different, but I felt that we could experiment later. 

I didn’t care that we had an extra set of ears taking in that moment, I needed to get through to Lea that we didn’t have any choices because we simply didn’t.  Once I was certain she understood that she was worth fighting for and had lots to live for, I looked over at the pharmacist and asked her to continue educating us about what the medical industry had to offer.  She had tears in her eyes, and before getting back into her spiel, asked what the hell I did for a living.

I wasn’t trying to manipulate my sister. She needed to understand that she was important and loved.  Every life is important, but the way the world behaves now, it’s not the case. Being her sister, and attempting to understand, I knew what she needed to hear. She desperately needed to know she had loving people to rely on and that she wasn’t alone. It’s not the industry ‘fear of God’ pep talk that she needed, it was humanity, love and compassion. Basic human necessities, that nearly any human can give.

The pharmacist continued after a few moments of silence. The list of things that could go wrong was scary as hell, but we had read that Afatinib did have some impressive outcomes, even if it wasn’t everlasting.  Lea finally decided to take the Afatinib home and do some reading of her own.  I was thankful that she took it with us.  My only thought was, don’t let us down.