Friends, I have been generous in sharing our story with you. Before you continue reading, I’m asking you two very big favors.
First, If you have a child that has any remote possibility of being around Jeremiah, please keep this information to yourself and in adult-only conversations. We haven’t decided how to approach this with Jeremiah. I’m sure there is a book on how to tell your child you are at some vague stage of dying, but I’ve never been one to read those types of books. Just like we potty trained Jeremiah through song and dance, we will think of a special way to have this serious conversation with him.
Second, please try and respect my reason for sharing this story with you via a blog post. Frankly, it’s easier to tell my story to many of you this way, rather than in person or on the phone. I want my friends and family to be informed about what’s going on, and not just so they have the information. Some of my stories carry great emotional weight. It’s hard to re-live these emotions with each update and re-telling of details. I’m telling my stories this way because I don’t want to have to deal with all those emotions every single day. I love and appreciate all the support you send my way, but please know I might not want to dive in to these details when we next meet.
On my trip home from Boston, I started to wonder, how does one walk the line between realism and hope? Can one feel both? Or do they reside at two ends of a spectrum?
After Brandon and I met with the nation’s ‘experts,’ they recommended two oral meds for my next round of chemotherapy. In one month I will take 5 pills, one everyday. Simultaneously, I will take another pill for 14 days. This will be considered a single “round” of chemo. After the 30 days, I will start another cycle or “round.” After two rounds, I’ll undergo a scan to see what effect the therapy had on my tumors.
Even though this is a new therapy for me, ultimately, it isn’t a cure. There is no cure for my type of cancer. At this point, target-directed therapies aren’t an option for me. Nor is surgery. Nor is a transplant. Due to the extent of the disease in my liver, the doctors are hopeful the new chemotherapy will shrink those tumors. But essentially, it’s just buying me time. Time for the meds to work. Time for a miracle. Maybe enough time for medicine to advance enough to find a cure. Because no physician has a crystal ball, no one has really given me my expiration date. I very candidly talked with my doctor about being on medical disability and/or pulling out some life insurance money. I haven’t been classified as “terminal,” but her thoughts are I will live over six months but not more than five years.
So back to my initial thought: how can one be hopeful and realistic and the same time? Does making “plans” mean I’m cashing in my chips? In all honesty, I want to make some of these decisions while I still can. I want to take as much burden off of my family as possible. No one deserves to deal with this shit. Particularly my husband who really, really doesn’t deserve this.
Believe it or not, I do still believe. I believe that I was put on this Earth for a reason.
Maybe it’s to beat the odds with the chips stacked way against me. Maybe it’s to provide inspiration to others, as so many kind people have told me.
It’s becoming quite clear that there are a few things I won’t be able to do, like take over Ellen DeGeneres’ show once she retires. I’m fairly certain I am a better dancer than her, but I’m also fairly certain she is much funnier than me. When I watch her show I always wonder, “What would I be doing if it were my show?” I would love to know what it feels to bring so many people happiness. To be generous to so many people in need. To laugh and tell jokes and get paid for it! It’s silly, I know, but true.
I will not be the amazing 40-year-old Olympic athlete representing the good ol’ US of A that I still fantasize to be. Every single time I watch the Olympics, I aspire to do something and be someone great; to work a whole life for a single moment when your entire country is cheering you on. I love those Olympic stories because most of the athletes participating don’t have NFL-style agents or huge endorsement deals. I just love watching someone fulfill their passionate dreams. It makes me so very happy. Technically, I have no athletic ability (aside from a penchant for dance) but it doesn’t keep a girl from dreaming. Couldn’t you hear the commentators? “One afternoon Lori picked up a pair of old figure skates, drove 300 miles for a ice rink and landed a perfect toe loop. Now she’s representing our nation at a whopping 40 years of age and killing this performance!” This should be particularly funny to my friends that have seen me try to throw a ball, ski, ice stake or run for any distance… Ummmm, it’s not pretty.
I’ll never host my own cooking show on the Food Network. I believe I was put on this earth to share my love for food and wine. So maybe I don’t have impeccable knife skills and couldn’t pick out a ’90s Bordeaux from a line up, but what I lack in knowledge I make up in enthusiasm. And, I LOVE me some good food and good vino!
I won’t be a back up dancer for Beyoncé. Now I have to admit this one is a bit of a stretch of my imagination (like the other three aren’t). But, if you have ever been any kind of dancer, you understand. I just wanna be one of the three that flip my extension-laden hair and then prance around telling him to “Put a Ring on It”.
But, what I do have is some time. How many people actually have the opportunity to honestly live like they’re dying? I’ve always cared about how others feel about me and made every attempt to please people. Now, I’m not a total kiss ass, but I like a nice harmonious life. But suddenly, small people and things just don’t matter. I don’t care how someone might interpret one of my comments. Sure, I’d prefer a nice boring life, with 2.3 kids, a dog and a SUV. I thought I was on that path, steering my life away from drama and the negative distractions, and I was ready to reap those rewards. But that’s not what’s happened.
This disease isn’t fair and doesn’t make any sense. I continue to believe. I believe that I am loved. I also believe that the number that has been given to me is an average. I’ve never been average my whole entire life. Why start now?