My mom was diagnosed with lung cancer around the age that I am now. I drove to Erie from my apartment in Pittsburgh and sat with her in the hospital after her surgery, though she was mostly unaware that I was nearby. Eventually, her doctor got mad at me for being there, kicked me out, and limited the number of visitors. Because I was living in Pittsburgh, I don't really know what life was like once Mom left the hospital. Did my dad actually take care of her the way she undoubtedly needed?
Jump forward thirty years and my daughter drove me to the hospital (we had to be there at 6AM) for my liver resection. When I woke up – eight hours later in the hospital room that was home for five days – I was holding her pinkie finger. She held a straw to my lips so I could drink some water and offered me spoonfuls of gelatin. Sadly, the first spoonful made me feel sick so we stuck with water for hours. Lots of water. It wasn't until the nurse said they were ready to remove my catheter that I realized how fogged my brain really was. I drank like 60 oz of water and never once considered that I didn't need to empty my bladder. LOL
Eventually, I was alert enough to realize how exhausted my daughter was but she refused to go until visiting hours ended – 15 hours she stayed, taking care of me, keeping me company, making me laugh.
On Thursday, I got an echocardiogram, my baseline to make sure the chemo pills don't damage my heart. The technician, who might be biased in favor of his test, said that everyone should get an echo. I'll admit that it was an amazingly cool experience. Every time I get a test done, if the technician or doctor doesn't mind, I'll ask questions. I guess this tech – a former Marine with big shoulders and a deep voice – doesn't get many because he really took to it, even telling me that he once got to do an echo for a patient who didn't know they had dextrocardia.
Over the last two weeks, I've been getting my chemo training. Preparation for chemo involves a lengthy education session and multiple phone calls about safety. It's a little easier with pills than infusion; we could (and did) bypass the tour of the infusion rooms. The whole education experience is a little like signing a waiver before you play paintball but without the fun of shooting globs of paint at your friends.
My prescribed chemo pill is the generic equivalent for Xeloda (capecitabine). It's among the least destructive of the genre, meaning that I can expect nausea, hair loss, diarrhea, hand and foot syndrome, taste changes, mouth sores, brain fog, and so on.
The care team has to warn about all the potential side effects, of course, but in their effort to assure me that they can solve that (whatever that happens to be), they may, a little bit, make things worse. "If the discomfort gets to be too much for you, we can prescribe oxy to alleviate it." (Oh good. /s)
I'm not even slightly worried about taking capecitabine. I'd do a lot more to ensure that I stay healthy for as long as possible. But the process has been challenging. When my husband was sick, I was his advocate. Now, I am patient and advocate. Sometimes that sucks, especially when I'm tired and grumpy and my robot holes ache.
For most of this week, I tried to get the pharmacy to give me my capecitabine without charging me $900 for a two-week round of treatment. I don't have a prescription copay, you see, but I do have a large deductible ($7100) that I've already met because I just had major surgery and the hospital requires payment upfront. Yes, that's right. (Don't even get me started on healthcare in this country.)
I know that if I give Accredo, the specialty pharmacy, $900, they'll have to pay me back later, after Highmark finishes processing all the hospital claims that have been coming in since Feb 1st. One of the many things I learned during Ken's illness is that, if you can help it, you never pay a healthcare company "just to keep things moving." Ultimately, I've had to pay Accredo because there weren't any other options. When I asked, the very nice customer service rep offered to send an invoice, which would actually delay treatment at least two weeks since, like the hospital, the pharmacy requires payment upfront. Instead, I'll spend the next X months fighting with them to get that $900 back. Healthcare companies do not like to give refunds.
Unfortunately, my lung infection has returned (or possibly never entirely left?). My mom would have called each dose of my Augmentin a horse pill, meaning it is sized to be consumed by a horse. She was terrible at taking pills and would absolutely have struggled with these because they are truly enormous. Once, because she would try to – I don't even know exactly how to describe it – throw (?) her pills down her throat, she accidentally inhaled one, coughing and choking for a solid 15 minutes. She sneezed it out later in the day, an ending that both delights and horrifies me.
I took my first dose of capecitabine – 4 pills – after breakfast this morning. We jokingly called my poached eggs on avocado toast my last meal because poached eggs are one of the prohibited foods. Many things are forbidden during chemo, including rare or raw meat and runny eggs, unless – as the nurses say – I'm really craving it. They know I'll be fighting to keep food down. The general rule when Ken was in treatment was to get him whatever sounded good. But often nothing did. I'm determined, though, so even if it's carnation instant breakfast, I'll be putting some calories into my body every day.
Let the puking begin …?
As should be expected, even though I'm in a great place health-wise and mentally, I have spent some time thinking about my own mortality, considering past and future choices, kindnesses and cruelties I have caused or received. It's not that mortality is a new concept to me; it's more that I feel like this is an opportunity – with the unexpected time I've been given – to look again at what matters, shed what doesn't.
It's a strange thing, to be at this point, and to consider that for some people who are important to me, the reverse is not true. And – an indisputable and obvious truth – you cannot make someone need you, value you. You cannot be important to someone just by willing that to be so. It's painful. It's freeing. It's necessary to recognize and move forward. Knowing that interactions with them will never meet my expectations is a relief to acknowledge because it allows me to not expect anything from them. Ever. What a revelation.
Maybe you too can find similar relief without having to first lose 20% of your liver.
Much love.
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