Food aversion is what really makes me feel like a sick person.
I mean, here I am, sitting in my diaper on a bucket list trip to Hawaii, carrying around a small paper bag in case my body decides to offer a sudden “readjustment.” My hands, feet and lips are tender to the touch. But I FEEL GREAT. I had a lovely Beecher’s cheese sandwich, complete with ham and special sauce. I sipped a delightful tropical fruit drink (the non-alcoholic option to the complimentary Alaska Airlines Mai-Tai). I’m well rested and happy and grateful.
Four weeks ago, when I started this treatment, the food aversion was immediate. My appetite was gone. Bam. Five little pills and…Nothing sounded good to eat. I’m so grateful that Peter and Kristi Middleton-Youngs took me out to eat the night at Monsoon before I began this. (Monsoon, by the way, is just simply superbe. One of my favorites of all time. And it’s right here in downtown Bellevue!) I didn’t feel bad those first few days, though.
But the lack of appetite along with the food aversion was first. Then a general feeling of malaise, like morning sickness with my first child. Then a bit of vomiting, despite anti-nausea meds. And the onslaught of the big “D.” Then came Armageddon – burned lips, feet too tender to stand on, vomiting (nausea was controlled by meds), and the BIG “D.”
At the first sign of food aversion, I was already asking myself the question “how am I going to BE with this?” It was a mixed up complicated emotional question, filled with identity angst at stopping work, at becoming a “sick” person for the rest of my life – and a search for direction. I thought, at first, that my angst was about figuring out a new identity, a new path forward in this clearly-too-sick-to-work phase.
One of my best friends, who takes care of her wife, kids, library, food bank, book drives and MANY other fulltime jobs, had some really good suggestions for things I could do within my new non-working status. It was immediately clear that even one of her activities would be too much commitment for me. It helped me realized I was on the wrong path.
My community at work and the work of teaching itself gave me so much fulfillment on so many levels. I’m stopping work because I can no longer work, not because I am looking for something new in my life. In fact, I probably should have stopped three months ago. So starting a new job …including a new identity, isn’t really going to work. Small ahah.
Then came the storm. Physically, I was a small one woman kayak caught in roaring rapids, banging against rocks, rolling upside down and gulping air between waves of water in my face. Every day, as things got worse, I would think of my parents.
My dad’s struggle with cancer was horrific. He lived for a couple of YEARS in the agony I spent this one week. His lips were dry and cracked. He could barely walk. His key staples were Ensure milkshakes and lip balm. My normally “robust” 260 pound Dad was probably all of 90 pounds when he insisted on buying the riding lawn mower for my parents’ 10′ x 40′ lawn. (Me to lawnmower sales rep: “How much do you have to weight to trigger that safety turn off? Are you SURE the sensor will know if a 90-pound man falls off?”) Dad actually did drive off the edge of the lawn in his 90-pound state and got stuck. His 85-year old neighbor rescued him.
Dad was FIGHTING. And he was determined to win — to the point where his body was frozen into place, skeletal and withered, leathered and hard, on his bed. He refused to take more than a minimum of pain meds or anti-anxiety medication because he didn’t want to let down his guard. He sipped small tastes of water through a straw and kept his heart beating with a pacemaker defibrillator.
I’m not going to go that way, fighting death at the expense of embracing life.
This week, with the Xeloda nightmare, I saw that line. I asked myself, “if this were the only treatment that would work to combat my cancer and these side effects were unavoidable, would I continue to treat it?”
The answer was easy. No.
No. no. no.
I’m not at that all or nothing point. So maybe the question is not a real question. It felt real while I was experiencing the side effects. As it is, we’re running a test to see if I have a genetic inability to metabolize Xeloda and if that’s not a problem, we’ll try a much lower dose. And, the drugs that can really help me, Perject and Herceptin, are still clear options on the table with negligible side effects.
But these last few weeks were the first time I understood what people mean when they say someone “fought hard” against cancer.
I don’t want that.
I want to be my mother.
My mother never fought her disease. The woman had so many near death experiences she could be the star of her own TV medical drama series – emergency quintuple bypasses, severe allergic reactions, rare bacterial infections of the throat, massive internal bleeds (my mother could make the most gruesome bloody vomit scene on Grey’s Anatomy look commonplace), insulin shock, and what should have been massive general organ failure.
But mom was never a fighter. She was a “liver.” Ha ha. OK. Sorry. See, that’s funny because she ended up dying of liver failure brought on by a rare autoimmune disease called Primary Biliary Cirrhosis.
The point is, mom LIVED.
She woke up one each of her worst days intending to love her people, taste good food, cuddle her dogs and laugh at bad jokes. She had good days. She had bad days. She had some fighting days, too. These were days when she wanted to be present with us, her daughters and her grandkids, despite maybe not feeling so well. She’d rally her energy, find her love and beam out a smile.
But most of the time, she kept her energy and her body as balanced as she could to enjoy living as much as she could. She worked to live. She didn’t fight dying – or die fighting. And she told me, multiple times, that she wasn’t afraid of dying.
My mom loved white river rafting. She took a guided tour down the Deschutes with 4 (maybe even 5?) class rapids and was dumped right out of the boat. You know that picture they snap of the group going over the big rapids on the tour? In our picture, you can see mom’s foot sticking up out of the water.
She got trapped under the boat and she thought she was going to die. So she reached into herself and calmed herself down. She stilled her mind and her body and stretched herself out straight.
And she popped right up to the surface. We’ve a happy ending to an exciting adventure rather than a morbid picture of my mother’s dying foot lifted high in the water.
I will not fight.
I will still myself, find calm and peace where I can.
And sometimes I will be taken up in dangerous rapids, I will fall out of the boat and will have to hold myself tight and just hope a boulder doesn’t come crashing into my head. I don’t think I get a helmet on this trip.
But my big aha this week was that figuring out what do do or who to be with all of these transitions is really all about figuring out how to stop trying. Just be.
And I supposed, it’s really the same “ah-hah” I’ve been having over and over.
A really good meditation group seems like my first post-work commitment.