In the fall of 2002, the great Warren Zevon made his final appearance on The David Letterman Show before dying of malignant mesothelioma, a rare and deadly form of lung cancer.
When asked by Letterman if his terminal diagnosis had changed anything about the way he looked at life and death, Zevon replied, “How much you’re supposed to enjoy every sandwich.”
I remember well that interview from 13+ years ago. Zevon’s answer resonated with me then, and resonates especially so with me now, obvs.
As you can imagine, being advised to get one’s affairs in order and being given an expiration date on one’s life span is a somewhat jarring reminder to live in the moment. I’ve written before (and will continue to do so), about the virtues of getting a head’s up that you might be approaching the end of the line. To say such a wake-up call is a blessing would be an understatement.
Okay, so you’ve gotten my attention, Universe. I’m wide awake over here.
Since my initial diagnosis in December 2011, five days after the birth of our daughter by unplanned C-section, I’ve been lauded by some and likely judged by others for being “so open” about my disease and what my family and I are going through. I might even be in the latter group myself if I weren’t living it from the other side.
Since my most recent “upgraded” diagnosis, I’ve been talking with palliative care and child behavioral specialists about “legacy building” for my daughter. And I have to say it is a relief to know there are many, many things I can do to ensure my daughter really gets to know me, even if I were to die before she is old enough to have formed many solid memories. And as I go through this process, facing a new and more formidable disease, I realize I have been legacy building all along.
When my daughter was but a newborn, my husband set up a Facebook account for her. And if either of us posted on social media anything remotely to do with our daughter or our family or our life together, we tagged her (and still do). We’ve been very cognizant of the fact the Internet will likely live forever, and that one day (probably sooner than we think), our daughter will be able to go back and look at posts on the social graph dating back to when her very existence in utero was first known (and years beyond that if she’s curious).
Can you imagine being able to read real time accountings of your parents’ pregnancy with you, as well as the reactions of their friends and family to it? How cool would that be? Well, our children and our children’s children will find out … some of them already have.
And with our daughter, since her birth is what led to the discovery of her mom’s cancer, she will also be able to read and see real time accountings of her mom’s treatment, and all of the ups and downs that followed.
I actually started blogging for this very reason … yes, me, someone who once purchased a t-shirt that said “No One Cares About Your Blog” … so my daughter could know me and my perspective on this journey in the event I wasn’t able to tell her in person. It’s very much like keeping a journal, knowing your writings will live on forever for your children to one day read.
All of us are doing it really, building a legacy for future generations. Perhaps I’m just doing it more deliberately, given my particular circumstances. But in truth, all of us are terminal. Life is a terminal condition. Most of us just don’t have the benefit of knowing how, when, or why we’ll meet our demise. (Not that I know the answers to these questions either. I could die tomorrow by being hit by a bus for all I know.)
So, I’ve been doing this – legacy building – for the past three and a half years. But I would be lying if I said this time around didn’t feel differently. It is very different. One way, of course, is that I’ve been told my disease has taken an unexpected and deadly turn. I’ve been told I’m not likely to survive this. I’ve been told I might not live to see my three and a half year old turn four.
That’s something that’s different this time around, something that’s new. And not just the diagnosis … it’s what feels different inside of me. Before when I got my original diagnosis, I truly never even entertained the thought I might not make it. Now … the thought that I may not make it … is entertaining me. The little reptilian voice has cropped up in the back of my head, that voice that whispers sinisterly, “you know, Joanna, you could actually die from this,” has become more difficult to ignore. And sometimes, in the dark of night, when the scary stories you tell yourself seem the most real, I can’t ignore it at all.
This time, fear is in the house. That’s what’s different.
Fortunately, after the initial “adjustment disorder” phase passed … that period of time one typically needs to adjust to difficult news … I was able to look at the situation more objectively. And hope is now crowding out the fear, thank goodness. Hope is a much better roommate than fear, especially when we’re talking about sharing the same headspace.
In my last post, I talked about some potentially promising options. At the time of that writing about ten days ago, there were many pieces and parts still up in the air, and we were being careful to manage our expectations. I’m now pleased to report that those pieces and parts have been falling nicely into place. So far I’ve passed with flying colors all necessary tests and scans and exams that could determine my eligibility for treatment of the brain cancer. I don’t want to jinx anything by saying this prematurely, but, barring any unforeseen circumstances this week, it appears as though I’ll be having surgery at the end of this week to install what is essentially a port into my brain. It is through this port I will ultimately receive chemotherapy for the brain cancer (specifically the leptomeningeal carcinomatosis). And soon thereafter, I’ll resume the (now FDA-approved PARP inhibitor) oral chemotherapy for the belly cancer.
And for those (humbling many) who ask what they can do to help our family, we continue to ask for positive energy. Our most fervent prayers to the universe are that: I stay well enough to get me to my surgery date without having to postpone the procedure; that the (pretty routine, low-risk) procedure goes off without a hitch, that my badass neurosurgeon and his team are on their best game; that I recover quickly and handily from the procedure so I can start the chemo to the brain as soon as possible thereafter; and that I’m the same wife, mom, daughter and friend after the surgery as before. And of course, as a bonus only, that I can rock one of these Ommaya Reservoir ports in the head as well as Damon Wayons rocked his tiny side berets on the old In Living Color skit “Men On Film”.
And talk about enjoying every sandwich? Check out the tasty morsels at the top of my list:
You can’t get any tastier than that. I give them 2 snaps and then some.