In the words of Kevin McAllister “This is it, don’t get scared now.”
That’s easier said than done.
So, I got my scan results last Wednesday, March 9. I purposely scheduled the scan for the 7th and the oncology appointment for the 9th in the event that I got news I didn’t want to hear. Why leave a day in between? Wouldn’t I want the results ASAP? Well yes, but March 8 is my wedding anniversary. Daniel and I just celebrated the Lucky 7 and I must say, we had a fabulous pre-anniversary weekend and my anniversary day was spent seeing some awesome clients and enjoying the GORGEOUS southern weather we’re having. It was an absolute banner day. I would like to point out that when we got married it was 75 degrees and sunny and every single year since then it has been 75 degrees and sunny on our big day. So it goes without saying that I didn’t want to jinx my luck and tarnish March 8.
I would soon find out it didn’t really matter. March 9 soon blurred into March 8. It was a cute attempt at trying to gain “control” over a situation out of my control.
I’d been feeling GREAT as “usual” for someone who was squashing Benedict left and right, but started to notice about 2 weeks ago I was having trouble sleeping. Nothing crazy: just a little trouble falling asleep and quieting my mind. I woke up March 9 morning and COMPLETELY FROZE. In the words of Garth Brooks I was “Frozen solid with fear, like a rock in the ground.” Most days I have trouble getting out of bed. I’m one of those people who has to warm up to the idea of getting up because I simply love being cozy and comfortable and the feeling of having just gotten a good night’s rest. That day I seemed to sink into the quicksand that was my mattress and get stuck there. Like cement.
Finally after much procrastination (read: facebooking and instagramming) I reassured myself that I had nothing to be afraid of and pried myself out from under the covers as my stomach started to growl. I walked into the kitchen and started to prepare breakfast so I could take care of Julie’s Emotional Support Task Force Step 1 (Homage to my favorite show: Parks & Rec): get a sweat going and blow off some steam at Pilates Reformer class. As I was stirring my oatmeal on the stove and trying to distract myself with how fascinating it was to watch water boil, Daniel mentioned something about how GREAT it would be to get surgery behind us so that we could plan a trip/vacation later in the summer/fall. I heard no details of what he actually said except “how great it would be to get surgery out of the way” and ABSOLUTELY LOST MY MIND. As the tears started to drip into my oatmeal, poor Daniel was standing there like “Was it something I said?!” Then he got it-he came over, scooped me up and said “Are you scared?”
As anyone knows, just uttering the word “Scared” is like saying “Voldemort” to someone who is crying out of fear. Validation can be a tricky thing sometimes. The demons were released: more tears.
Mmmmm…salt watery oatmeal.
I bravely got my salty oatmeal down (nervous Julie normally winces at the sight of food) so I could take my Xalkori. I’m now an expert at knowing that taking chemo on a non-empty stomach IS something I can control at all times.
I can also control my outfit. I started to put on something pink in memory of Sally Meyerhoff, a former Duke runner who was killed while cycling 5 years ago…and then I stopped. Intuition told me it was time to break out the Wonder Woman gear. I felt a little silly but as my favorite actress Amy Poehler says, “There is power to looking silly and not caring that you do.” That’s exactly what I needed to tell myself on a day where Courage needed to be driving, riding shotgun, and filling the back seat. So I put on my WW t-shirt and sparkly gold headband and headed to class.
Class was awesome. For an hour of my life I totally forgot what was coming next. Thank you, Lily Collins and The Daily at King Plow! 🙂
I had about an hour to kill before Doctor’s Appointment #1, so Julie’s Emotional Support Task Force (#JESTF) parked it at my favorite neighborhood coffee shop: Octane Coffee. I got a little bit of admin work done—lots of business planning and marketing. Getting pumped about where my business is going.
Headed to Appointment 1 with my primary care doc. Just a check in. Nobody had updated him on anything going on with me in the last 6 months (Isn’t the interdisciplinary communication in our healthcare system SO rad!?) so he was thrilled at my progress and couldn’t believe how healthy I was. That was an ego boost I needed to hear right at that moment.
So then I had more time to kill. #JESTF headed to my favorite lunch spot: Urban Pl8 in Krog Street Market. Mmmm….Anti-cancer diet friendly food. And nothing like an $8 juice full of turmeric. When did we start paying $8 for 12 ounces of juice and not think twice about it? #firstworldproblems
Then it was time to go. I put on my pump up playlist and headed to my swim meet oncology appointment. There was a long wait so I got more work done. March 9 happened to be the drop dead deadline for proposal submissions for next year’s APTA conference, and I had four submissions to finalize.
Nothing like overachieving at the last minute when you have a very important doctor’s appointment.
But I had calculated and “Planned”, based on how I have been feeling and the “Trajectory” I was on, that this doctor’s appointment would be just like the last several: tumor shrinking, everyone is crazy impressed with my progress, I keep going with the chemo and watch Benedict shrivel away even longer. So no problem—get a lot of work done right? Business as usual. Even Daniel didn’t pause—he was on a conference call through his headset while we sat in the exam room.
Finally it was my turn. Dr. D’Amato came in and was short, sweet, and to the point. Scan results were in. Tumor had stopped shrinking. There’s another little piece of “Mass” that is either connected to the tumor or separate. Time to take one or both out ASAP. If Dr. Moore doesn’t get the other piece, we’ll probably continue with the Xalkori for 3 more years with close monitoring. I’ve already called Dr. Moore and you’re going to consult with him on Monday. Follow up with Dr. D’Amato in 2 weeks after surgery is complete—4 weeks from now. We’re going to write up this case and submit to the New England Journal of Medicine.
Consider me thrown into the deep end of the pool before they’d had time to heat the pool for the season and the wind is totally knocked out of me. Good thing I at least know how to swim.
3 years…that means no wine…or pregnancy…for 3 years. Surgery NOW!? What about my perfectly calculated “plan” for surgery to happen any time BUT now?
I politely smiled and nodded because that’s about all I could do as Fear, Pride, and Shame played their well-rehearsed award-winning symphony piece in my head “Do not cry, not in front of her. This is uncomfortable. You’re too strong to cry. Wait-what did I just say? Those are tears welling up in your eyes and a knot forming in your throat. I TOLD you not to cry! Don’t be weak! You can cry later!”
Needless to say—Madame Perfectionist the Symphony Conductor obliged to its request.
We scheduled the follow up for April 6…wait, so you’re telling me that by April 6 this will all be over and done with!? That means that within 2 weeks I’ll have the side of my body cracked open?
Ayeyiyi. So much for all of my calculated planning and expectations about what was going to happen today.
I bid farewell to Daniel–back to work, back to business as usual—and headed to appointment #3 for the day—PT. A few needles later, I headed home to pound out the remainder of my proposals. Deadline was approaching-and there was absolutely no time to digest any of the information that I had just received. As much as I knew I needed to sit and process, I painstakingly finished and submitted the proposals amidst a pounding migraine that was forming (the stress would find its way out of me one way or another) and went for a long walk. Ah, that’s better, right?
Daniel offered up anything I could possibly want for dinner but I suddenly found myself having no appetite. I did annihilate some chips & salsa and some of my Chipotle burrito bowl. Remember what I said about Anxious Julie and food? I’d consider that a victory.
Finally we watched a little bit of Parks & Rec (because Leslie Knope heals all wounds) and went to bed.
My head hit the pillow. Commence a slow stream of silent tears. There was no sleeping despite my best efforts. Like I said-the stress would make its way out one way or another.
The slow leak turned into a total break in the dam and walls capsized. So as not to disturb sleeping Daniel, I built a cocoon on the living room couch and let the temper tantrum do its thing. And filled up about 7 pages in my journal.
Intellectually speaking, I KNEW I needed to surrender, trust, and have courage and faith, but in this moment I was NOWHERE near those things–nor did I know how to get there. Fear was still totally drunk driving with no end in sight.
As any “good” cry will do, I was worn out and quickly passed out, spending the entire night on the couch asleep, with all the lights on, my glasses on, and my journal sitting on my lap. Daniel woke me up at 6 AM and shooed me back into bed.
Around 8:30 or so I woke up to the sound of my chemo alarm (Ironically, my alarm is Dar Williams’ “Better Things”–IE the best song ever) and pretty much wanted to throw my phone at the wall.
What’s the point? It’s clearly not helping me anymore. –Julie’s Ego
Not with that attitude, it’s not. –Julie’s SuperEgo
Here’s wishing you the bluest skies, and hoping something better comes tomorrow…-Dar Williams
Shut up, Dar-Julie’s Ego
No. Stop and Listen-Julie’s SuperEgo
I didn’t listen QUITE yet.
Again I had to chisel myself out of bed-this time not because of Fear but because of Despair and Anger. This time I didn’t cry into my oatmeal, I spit into it. I thought I had dried up the well of tears but one song into the Pump up Playlist and I was at it again. Temper Tantrum #2 ensued.
Note to self: Take Martina McBride’s very sweet but very emotional cancer song OFF the playlist for now.
Fortunately #JESTF had preemptively scheduled a last minute “rescue” call with the lovely Shawn Haywood as soon as I received the news the day before. I knew what was coming and I knew I needed a professional to help me straighten out my interpretation of this situation and coach me off the ledge and back onto the very self-loving track I’d already laid for myself over the past few years. Like the mind reader and magician that she is, Shawn helped me mop up the Julie Puddle from the floor, pointing out to me that salt water and vintage hardwoods don’t mix.
So I listened.
After 3-4 hours of outside time in the sun/meditation/journaling/Pilates later…I was a newer person. I still had a ways to go but was in a much better mind space. By Friday (2 days later) I had more meditation time and a call with the magnificent Laura Ricci and the mindset totally shifted. By yesterday (3 days later) I had finished out one journal and started a new one with an exercise encouraged by Elizabeth Gilbert: allowing Fear to write an open letter to myself and then a letter writing back, objectively and compassionately, to Fear. The Fear/Shame/Pride Symphony and I are on the same page now–they’ve been given their time off request for vacation and I’ve taken the steering wheel. I also had a fabulous call with the glorious Emily Bennett Taylor who is a Stage IV nonsmoker’s lung cancer survivor-diagnosed in her late 20’s. She has had an entire lung removed, had radiation and now serves as a beautiful advocate for people like us who have the pleasure of going through this awesome adventure.
It takes a village, folks, and I am grateful for these wonderful women to lean on because they could most understand me and what I was feeling in those days. And they’ve helped #JESTF gain clarity and come to some conclusions:
This is not a battle. This is not a war. This is an adventure and a vacation (let me tell you how hard it is to say that…but I think if I keep repeating it maybe it will sink in). It’s exciting and I will be curious and embrace the spontaneity instead of fearing the unknown. It’s an opportunity, not a hurdle. I’m not preparing, I’m packing my suitcase, flying to my destination, and then riding the wave. It’s a puzzle to solve, not a problem to solve. It’s vulnerable, not isolating and alienating. Yes, I could totally die on the table or in recovery…but I could also die when choking on my $8 cold pressed juice drink—but I don’t let that stop me now do I? As Shawn so eloquently pointed out–Philosophically speaking, what’s the difference between those two things? I initially wanted to punch her in the face for being right—but as usual now that I’ve had time to digest, I completely agree. It’s “business as usual,” not something to get all hyped about. So maybe being all “business as usual” on March 9 was a good thing. There are no guarantees here except this adventure will most certainly have dark and painful times, but how is that any different than any other part of life? I’m welcoming those moments and embracing them, not hiding from them under the covers. All of the trials and triumphs I’ve experienced up until now have prepared me for this. Thank you, 14 400 IM’s, Shoulder surgery, DST Cruize, and many many other experiences. We can’t truly appreciate and experience the light without the dark (that’s a universal constant), so it’s time to embrace the dark, welcome it, and look forward to the light.
Fear doesn’t get to drive anymore—its license is being revoked. Courage, faith, surrender and trust do. I’ve put in the time, the energy, and the “training.” Now it’s time to taper, shave, eat my pre-race meal and accept my gold medal because I’ve pretty much already won the competition. All I have to do is show up.
I know what you’re thinking. “So when do you get to say goodbye to Benedict?”
Soon, but I don’t know exactly when yet.Let’s just say there is a chance I may be having my Easter Egg Hunt in the hospital this year.
I meet with Dr. Moore in the morning to go over the plan, set a date and make sure he answers my 3459248 questions. Oh you better believe I’m totally going to be THAT patient. Oh and don’t worry—I’m not “planning”, just being “informed.” You also better believe that I won’t be prying myself out of bed tomorrow morning. I’ll be bouncing out of bed, ready and eager to get this show on the road.
Stay tuned for your Save the Date card—because you’re invited to Benedict’s Going Away Party.
New hashtag thanks to the fabulous Julie Wiebe: #adiosBenedict. #takethatBenedict will still live on. Who says you can’t have 2 hashtags? Or 3 🙂 #JESTF
It’s go time.