Author’s note: for those of you who want the good news, skip to the last paragraph and enjoy that glass of wine. For all you others who want the real story, keep your glass of wine and read on.]
One of these days, I am going to report back that we have taken the long journey to Boston, I’ve done a few MRI/CT scans, visited eight of my doctors, and received the awaited call from my lead doctor. “Everything is perfect, Kristin! Looking great! Keep up the good work! Whatever you’re doing, keep doing it!”
But for now, the conversations are more like this. (picture me in my house, doorbell rings, I’m walking to open the front door, and my lead surgeon/oncologist is standing there, with a giant check in his hand)
“Kristin, it’s me, Derrick, with Publisher’s Clearing House! You’ve won a million dollars!”
Me: “Wait, Dr. Lin, you’re with Publisher’s Clearing House now? What about that surgeon job?”
Dr. Lin: “Oh, don’t worry about that now! You just won a million dollars!”
Me: “Oh, that’s wonderful!!! Yay! Can I cash the check now?”
Dr Lin: “Yes! Of course, but just remember to pay the taxes first- not exactly sure how much they will be, but I’d go ahead and write that check for $999,990.000. That should cover it. The other $10 is yours.”
Starting to feel like this is my story. And yes, I am delighted to be alive but I would like a simple Hail Mary without an asterisk and fine print.
So the story goes like this:
We got home from Boston a week ago, tomorrow. After two crazy days of appointments, we finally heard back from the doc this afternoon. According to the lead radiologist, the scans appear as if there are “no new changes.” And for that we rejoice! But then, he says, “But there is slight enhancement in Meckel’s Cave” and that means there is something new near my brain, and the previous 4 seconds of elation we felt just got reduced to a moment of bliss followed by a question mark. He finishes his thought, with something about possible radiation damage, but it’s really hard to absorb the good when all you can do is ponder the negative.
I live this life…days with yoga and physical therapy and gentle meditation, followed by invigorating work for a business I adore, and most importantly, the joy of a family life that is full of love, but I have to admit that living scan to scan is a tough life. Making life plans on a quarterly basis is not ideal. And contemplating the longevity of your family unit is even more painful. As I wrote about many months ago- life is fragile, and we all know that. But many of us do not live our daily lives that way. Even with my really dreadful health and history of cancer, it is still hard, even in my body, to be mindful all the time and live each day to its fullest.
Those with crappy health like myself can relate to this. A few weeks ago, in the midst of a hotel booking, the agent asked for my credit card expiration date. “4/20,” I repeated. And as I stared at that date while I read the numbers aloud, I wondered, will I make it to 4/20, or will this piece of plastic outlive me?
For someone with my type of cancer — mucoepidermoid carcinoma of the parotid gland– and there aren’t that many of us, we all know that living past the five year mark is something to celebrate. And as of now, I am at almost seven! But for someone like me who has this insane will to live, that isn’t good enough. Because I want to be the model patient…the one who dies of old age with a bourbon in her hand.
I’ll say that at some point it becomes difficult, when running into friends at social events or making small-talk at work, to answer that question, “How are you??!” without saying “Great!” Truth is, I am thrilled to be alive. But the side effects of the treatment I’ve received (3 X the amount of radiation they give to people in a lifetime) plus the nine surgeries, have weighed heavily on my health and my spirit. If I were to list all of the issues I have today, from vertigo to a half-paralyzed tongue with speech issues and twenty other things, it would remind most of the side effects rambled off at the end of a commercial on tv for a new drug. But the problem is, I’ve got all of ’em.
My only hope today is that tomorrow I wake up with a whole new outlook on life and healing. Because frankly, 92% of the days that I rise, I wake up with a spirit that is focused on healing and love and life. But the other 8% wants a barely legal frozen margarita and plastic cheese queso (Austin people, you know what I’m talking about!) and a three-day bender with Netflix and Talenti gelato.
To end on a high note, for tonight, I am officially at the One Year Mark. And I am three months away from my next set of scans. I do have something pretty awesome to celebrate! That means another quarter-year of (mostly) bliss, and some beautiful sunshine in Laguna with my amazing family. But if you see me between now and then, and I’m eating queso, please go ahead and kick me.
Love to my friends and family, K