I DOT WUT TO

When I was in high school, I was on the school newspaper staff.  Every year, the seniors got to publish a list their likes and dislikes at the end of the year.  It was so fun to read and as staff we got to cut and paste like professionals (probably using actual scissors) as we read through them.   They were mostly inside jokes or something that alluded to something that went on in 9th grade that forever (or for at least four years) bonded so and so.  At nearly forty, it’s a good idea to have a clear understanding of what you like and don’t like so you can either do more of them or avoid them.  

My documented list of yeses officially started on my birthday.  My list of no thank yous while shorter, is pretty solid - Brussels sprouts, socks with no elastic, cockroaches, empty toilet paper rolls, artificial sweetener, etc.  A few years back when Martha Kate was in kindergarten, she apparently did not want to complete the rest of her work, so she put a big ole “X” over it and wrote the words, “I DOT WUT TO.”  (This paper is framed in my bathroom right above the portrait of Bailey's kindergarten self with a big ole erased pile of poo drawn under it.  Because that’s the kind of mother that I am). So when adding to the “no” list I always think of her big ole “X.”  I had a little extra time to think this week and as I was adding to my list, I realized that there are things that I want to draw a big ole “X” over but they just don’t go away.  Here’s a few: 

brain scans, unsolicited advice, and public restroom hand dryers

It was brain scan week.  That in itself is enough to send anyone into orbit.  This was my 7th one in 5 years so while one would think it may be old hat, it’s so not.  La-ti-da...just lie on your back and relax while you freeze to death with your head in a cage, wearing earplugs and extra face-squishing foam, and let the jack hammers draw pictures of your noggin.  While mirrors typically make a space look larger, the tiny one that is 2 inches from your eyeballs does not.  It does allow you to check your mascara application, but if you look closer it actually reflects into the imaging room so you can really freak yourself out about what they are seeing. I’m just thankful that it’s not recording real-time thoughts.  Around my second brain scan I lay there praying and remembered 2 Timothy 1:7 and that became my brain scan verse.  The “sound mind” part is subjective but the way I see it is that God does not want me to be afraid and whatever is on the other side of that picture, He has given me enough sense to make a decision about.  The good news is that mine is normal (again, subjective) and the other news is that I can’t avoid them because melanoma loves the brain and since I’ve already had it in my spine, a frightening 6 inches from there, it’s kind of necessary.  

As for unsolicited advice, or “free” advice, I’ve been the recipient of much.  These are the sentences that start with “You should...” or sometimes “Why don’t you...” (See also the unfiltered comment).  A cancer diagnosis warrants both, and truly some advice has been really sound and I get my best material from unfiltered comments.  

The tech in the MRI this week asked why I was there and when I gave her the short version, she said, 

“Well, you are way to young to be dealing with all of this.”  

Unfiltered.  

I said, “I thought so too, until I walked into the cancer clinic and didn’t see an age discrimination sign.” 

Silence.  

My exception to the unsolicited advice is when it comes from anyone over 80, because it will either be very sound and backed up by life experience or so hysterically funny that you need to hear it.  The other exception is your mama because, well, she’s earned it.  The bottom line is I can’t avoid this either, so I will use it to my advantage and just refrain from giving it.  

As for the hand dryers.  I’ve used a lot of public restrooms this week.  Those things are everywhere with no paper towel option.  You wash your hands, turn around for the towel, only to see the blower.  Your faced with a decision - push the button or walk away.  For all the racket, there should be instant evaporation, but instead they blow water (or the actual loose skin) around on your hands and then turn off, leaving you dripping and wiping on your clothes.  If you have a small child with you, the child either flaps and sprays water everywhere or wipes her hands on YOUR clothes to avoid the loud noise.  Handwashing is necessary, apparently drying is optional.  Just going to deal.  

Now, onto my appointment on Tuesday.  The short of it is that it was good, really good.  I stand in amazement that the scans are clear.  Nothing there.  I actually just pulled them up and read them once more just to be sure.  Not the tumor in my spine that had once cut off the blood flow to my spinal cord, not the one that was pressing into my airway, or the one in my diaphragm, or my adrenal gland, or the other 10 or so that were scattered around.  Nothing.  Completely melted away sometime over three years ago and I’m holding steady.  Every day is a gift, not promised, but borrowed with the intent to make the most of it.  As my doctor told me, “no one knows the curve on this” because the curve is still being written - partially by yours truly.  My hematology visit, two floors up, immediately following oncology, also good.  My leukemia remains in remission, what my hematologist refers to as a deep remission with stable molecular levels (basically the only way to find any sign of leukemia in my body is to dig through the DNA and then there’s only a tiny trace).  I achieved this milestone about six months after I was diagnosed, but it takes many people three years or so.  We discussed studies that are going on in France that may allow CML patients who are in remission to come off of the drug at some point. Frankly, I’m ok with what I’ve got going - if it ain’t broke, well you know.

So my visit was good, but one of the toughest.  A few weeks ago, I got a letter in the mail from Vanderbilt.  I get dozens of Vanderbilt envelopes - mostly because I owe them money or they want a donation.  This one was from Dr. Sosman informing his patients that he will soon be practicing at Northwestern in Chicago.  I called Stephen and asked him how he felt about it we mutually agreed upon “sick.”  Well, I was angry, but the sick and sad kind of angry.  We just walked around the house saying, “sick.” over and over, only I couldn’t really say it without tearing up.  Big ole honking “X.” 

Sometime during one of those critical life-saving treatment decision times, Dr. Sosman looked at me and said, “Let’s get you well, because I want to see you in ten years.”  I took that to heart but I also took that to mean that he would actually be the one to see me.  My thoughts that day were, “well, ok, buddy if you’re going to talk about ten years from now, I’m going to do my part.” He may not know how much that statement actually fueled my inner cockroach climbing out of the puddle of Raid, but it did.  

Immediately following receiving the letter, I sent Dr. Sosman a text that I was not happy about this and that I hoped he had negotiated my travel expenses into his new salary.  Wouldn’t you want to have me for a patient?  When he opened the door to the room the other day, he said, “I wasn’t sure you were going to come.”  Ha!  He knows me well.  It was a sad sort of visit, but very endearing.  I may or may not have been as worried about holding it together than the actual scans.  We all cried and he hugged us both about four times.  I was hoping to walk away with more clarity on what to do (or a plane ticket) but I did walk away knowing that he has invested as much into me as I have in him.  We have history.  

So, here we are faced with decisions that I DOT WUT TO make.  I wasn’t looking for a new doctor.  I wasn’t looking to continue my medical care in two cities that are not even close to each other or to the one I actually live in.  I wasn’t looking to figure out the finances and logistics of it all.  But what I do know is that it will work out.  I’m doing great medically and I’ve got time to figure it out.  What a great place to be.  God has always provided.  For 1,945 days of cancer, God has provided.  We have traveled to Nashville and home so many times and never once has a need not been met.  

I will use last week as an example.  Our trips are a two day affair.  I go up on Monday, get scans and bloodwork and then Stephen goes back with me for results on Tuesday.  Two oncologists is too much to cram into one day.  The biggest (unsolicited) question I get asked is “Why don’t you spend the night?” or “You should spend the night.”  My reasons are simple - while disrupting my life a little, it minimizes disruption for my children.  They are first, always have been.  To parent small children in the face of uncertainty, fear, and pure chaos is no small task.  We have been at this for over five years.  By God’s grace, our children are fairly well-adjusted, happy, and oh so loved.  My son who was a kindergartner when I was diagnosed, will soon go to middle school.  And, according to the picture my daughter drew in her Sunday School class this morning, she understands perseverence.  What may seem or have seemed to an outsider as a seamless transition between normal life and cancer, is really not all that seamless.  

I have sat and cried with Bailey when he was scared and we both knew that I may end up in the hospital and not back at home later that night.  I have tiptoed through many dark mornings so they wouldn’t wake up and cry with anxiety that I was leaving before school.  I have spent months building back the trust that every time their precious grandparents showed up, we were not going to medical appointments.  So, when I’m washing a baseball uniform at midnight before scan day, signing folders, writing notes for lunchboxes, and packing soccer practice clothes, it gives me peace.  And, when I walk up at the start of his baseball game and he gives me this half smile and wave from the dugout, he knows I’m there, and he’s ok.  I can give him that. When I get to kiss her and take a picture before her soccer practice and reassure her that I will see her after, she’s elated. When it’s “wear owl day” at school and he asks me where his Hooter’s shirt is and I bust out laughing, my entire extra 400 miles is totally worth it.  

And selfishly, when much of my day looks like this:

blue suede shoes because Memphis 

 I'd like to end it like this.

What’s cool is that make this happen, to allow Stephen and me to parent seamlessly, God provided an entire village.  Six different people disrupted their own lives to make ours easier - company, food, practice, dogs, kid shuffle, and lunchdates.  The rest of them are praying, waiting, hoping, and texting to see if we need anything.  The truth is that over five years into this, I have to turn down help because I have more offers than I need.  That is amazing.  So, He will provide.  He always does.  I have quit trying to understand the why and the timing and the logistics but it doesn’t keep me from wanting to draw a big old “X,” over the whole deal sometimes.  But, I am here.  I am breathing, walking, mothering, and living out this miracle I call life.  

Last Sunday, our pastor’s sermon was on how we see Jesus when we are called outside our comfort zone, and immediately following that was our Sunday School lesson on Romans 5 where Romans 5:3 was highlighted in my Bible.  So, going into scan day, it was apparent that A) I am not supposed to be comfortable and B) this has been one big fat exercise in character building.  

Awesome.  Bring it on! 

Thank you for your prayers, thank you for your encouragement, and thank you for never giving up.  Love, KJ