A few months back, I got a phone call, an email, and a Facebook message all at the same time from somebody at Vanderbilt. The sight of a 615 number on my phone can send me into a hyper-alert state, so I usually just let them leave a message. I’m not a quick processor and even though it’s highly doubtful that they are digging through my DNA or have the capability of seeing some new tumor from 200 miles away, somehow my brain thinks that. Turns out they just wanted my story. Better yet, they wanted me to write it.
My story.
I have a story.
January 2011, was the first time I wrote something in black and white letters for the world to see. It was more out of necessity than anything else. The phone calls and messages got to be too much and my introversion could not take the face to face explanation anymore so I started documenting in the sick people’s digest called Caring Bridge. I only wrote what I was okay with my children reading one day - they needed to know that I tried. Most of the time it was a chore for me to put some sort of positive spin on difficulty and defeat. People read it. They shared it and then they prayed and they encouraged. And, I went on about my business and let everybody else formulate their thoughts of how this story was going to go down.
Five years and almost nine months later, I am still telling this story. It is still being written.
The last few months have been filled with seemingly endless busy-ness as I guess life overall just is. Summer is basically a hamster wheel that never really stops spinning and then rolls right into the start of a new school year. The beginning of school is always a little rocky, this one in particular because middle school. It apparently brings on a whole set of emotions that range from excitability to fear to melt down in the span of an hour - here we go! Smack-dab in the middle of this chaos was scan week. Impeccable timing some might say, but cancer doesn’t really fit into anyone’s schedule. There is nothing like a group of medical professionals viewing your insides looking for traces of tumor growth to give you some clarity on life.
In short, my scans are fine. Crystal clear. It actually reads, “no evidence of metastatic disease” because I just read it myself to be sure. My blood is fine too. The leukemia cells can’t really be found even at the smallest molecular level so that box of cancer-fighting gold that’s delivered on my doorstep every month is doing it’s job. This, my friends, is amazing. And, now I have even more evidence to prove that it is. Physical and numerical in the form of charts, graphs, and percentages.
I met with my new doctor, Dr. Johnson, who I endearingly refer to in my head as Bill Nye the Science Guy. We are not the same but kind of. He is numbers and science trying to stop tumor growth. I am a mother, trying to make all of the practices and meetings, work, and foster healthy social and emotional growth in kids. Now, “Bill” and I go way back - on paper and in a lab at least, because he got the pleasure of studying my case from the beginning and analyzing my tumors probably before he met the actual me, bless his heart. I know this because he told me once about all of my “mutations.” So we sat in the clinic the other day and discussed scans, new studies that were out, and the effectiveness of these new drugs. He asked me if I had read the recent five year results of the study I was on. I replied with a simple “no,” but in my head I was thinking of how when those results came out, I was probably sitting at the baseball park, or running carpool to dance lessons and maybe slightly embarrassed that I didn’t even know the results came out. In summary, the drug that I was on had about a 30% response rate for what’s called progression free survival. So, it works in about 1/3 of people who don’t grow new cancer while they are on it. Not me. I’m not even in the 1/3 because I grew a big fat spinal tumor while I was on it. Pretty sure they didn’t measure that.
It took me a few days but I decided to look up those study results and read them for myself. I did so on Saturday morning while I was making scrambled eggs for my kids. So, I’m standing there in the kitchen trying to make sense of it all and the truth is that it doesn’t make sense. Now, I’m not a numbers person. I can’t even do a spreadsheet. They give me anxiety with the cells and rows and whatnot. I was standing there stirring eggs and reading numbers that basically accounted for my life. It is just hard to wrap my mind around it. I came down to the side-effects graph and there’s stuff listed like nausea, and rash, and then there’s this one tiny fraction of 1/17 that contracted another “neoplasm” (Fancy Nancy for cancer) called chronic myeloid leukemia. So there I am. I am a number. A single number in a graph on a chart in a study.
What actually came to my mind when I was reading this is the verse, Luke 12:7 - “Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.” When I was a child I used to think a lot about that verse as I brushed my hair because clearly I had a very literal sense of it’s meaning. But, now it seemed crystal clear. God knows me. I matter. He not only knows how much hair I have, don’t have, and how many are gray, but he values me enough to allow me to open and close so many doors to lead to a clinical research study, to lead to another major cancer, to lead to a chart-full of data that I would read years later while standing in my kitchen and it would shout my worth to Him in black and white and leave my crying in my kid’s eggs.
What that number also doesn’t say is that I am very much alive. I am very much walking around and shuffling my kids here and there to give them the best life possible, all the while planning in my head if that this scan is not what I hope, how I will schedule cancer treatment with church activities, play practice, cross country, dance, baseball, and homework. What it also doesn’t say is what kind of life cancer has taught me to live fully and completely and in four month increments of time. What kind of responsibility defying odds has brought for me. What kind of perspective on life I have been given, what kind of empathy I have for those who struggle. I spend time in prayer for friends and strangers who have cancer and are fighting because I know the fight. I attend a funeral of a little boy who I grew to love and who possibly left this earth because “his body could no longer contain his spirit” all the while thinking how hard I’ve tried to hold onto every aspect of my children’s lives and cannot fathom how these parents will go on. I comfort my middle schooler, holding back laughter, because change is hard and he actually exclaims with dramatic flair as I shove him out of the car on the first day, “I’m going to die!” I encourage my daughter and she tries out for the school play but remind her that it’s just a play. I hold them tight, I put my fingers through their reddish hair and love how their lanky legs peek further under their shorts as they grow.
I fully know that I am not exempt from the stuff of life but have to keep my eye on the bigger picture. On the very same day that I spent 6 hours driving and 3 hours in a cold sterile machine with an IV in my arm, I also spent half of what my car was worth on repairs, drove from a cancer clinic directly to a third grade curriculum meeting, picked my son up from cross country, and went to two different office supply stores to find a much needed locker shelf for my 6th grader before going through the Chick-fil-A drive through for dinner at 9:00. I had to do none of this really. I could have declared myself finished for the day and gone to bed, but in a day where I control nothing, this craziness gave me a little control. And, quite simply, I can. There was a time when people sent me pictures of my children reading at school because I couldn’t be there to see them so now that I can, I will. It doesn’t stop me from being annoyed at the lady in curriculum night with the big PTA letters on her shirt on asking if she has to pay a workbook fee for our free and fabulous public school, or the other lady asking how her child will be honored if he makes straight A’s. Instead it causes me to think about what I want for my two children who to the world are pretty average and my answer is really just happy and kind.
And that story? Well, I wrote the part that has been written for Vanderbilt because they asked me to, realizing later that I wrote it just as much for myself. I deliberated over it for weeks because it’s a lot for 1700 words. I even left out the third cancer because sometimes too much is just too much, and then sent it to a friend to edit for me. Vanderbilt sent a fancy photographer with real equipment to my house last spring. We tried to look our best and clean up our act around here for at least that hour. The article came out and was published on social media and in their magazine. We watched as it was liked and shared and people commented. Strangers commented on how it gave them hope, and gave God the credit. Exactly what I had hoped would happen.
I was back in that cancer clinic the other day that I’ve walked into and out of so many times. Some of them broken, full of cancer, full of defeat, searching for joy, searching for hope, some of them not walking at all, some of them in disbelief that the diseases I’m fighting are no longer there. And this day, I walked out holding that magazine, with my smiling face on a full page, playing in a sandbox. No sign of cancer in my body. I just can’t help but laugh. Who would have ever guessed this is where it would go? So, what do you do with that? Well, you continue life with perspective, you eat lunch with your best friend, and you drive through Dairy Queen for a blizzard on the way home so you can pull in the driveway in time to pick up your kid from practice. You sing a few verses of “Great is Thy Faithfulness” because it is. His mercies are new every day. Even if the day hadn’t been this way, He is still faithful.
As I toasted Stephen to a good day with that Oreo Blizzard, his watch slid down and I saw the tattoo - my name and then names of our kids in a circle around his wrist. He didn’t have to tattoo it on his arm for me to know that I married a man who’s story was written to collide with mine and complete me as a person, to write our story together. As sure as that tattoo on his wrist, he intends to keep his little circle of people in tact and together. It’s a physical reminder of his love that came out of what was the absolute pit of our lives. No doubt that my story is still being written, as all of ours are. God writes our stories in phases of our lives and He counts the numbers of hairs on our heads. He doesn’t reveal what is to come because all of it is in His timing. Cancer is not what I wanted. It wasn’t in my plan. It was in His. It has taught me patience, empathy, kindness, and perseverance, how to love more deeply and fully.
I have no idea what is yet to be written, none of us do, but if our lives end because our bodies can no longer contain our spirits, the world will be a much better place.
“Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see;
All I have needed Thy hand hath provided -
Great is Thy faithfulness,
Lord, unto me!”
Jesus. Science. Grace.
Love,
Kimberly
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