The Monarch Emerges

The Monarch emerges

I spent this last week at MD Anderson.  I came away with two (well four, but we’ll get to the others later) new realities.  1. I am not alone.  The place was massive.  Not completely intimidating, but there were thousands of people there.  One guy cut me off driving to the main building and I yelled, “Nice move douche! You’re not special, everyone here has cancer.”  Nita shook her head.  2. There are a lot of wonderful people who have been through some version of what I am experiencing and are coming out of the woodwork to share their stories with me.

An old college baseball friend took Nita and me to lunch one of the days.  We were talking about friends and family reactions.  We’d come to the conclusion that while we’ve already accepted our reality there are many who are learning how to personally cope with my situation.  A funny clip from an old robot chicken illustrates the 5 stages of grief. (See imbedded hyperlink if interested).   In any case, it turns out he had a liver and kidney transplant a few years ago and was given a 10% chance to live.  But there he was, joking with me like we’d never left the dorm, and gushing about his new little boy.  Perspective.

So there I was getting bled out and scanned and I suppose not many people have my sense of humor.  That’s probably an understatement to some of you.  Anyway as the doctor was telling me about the contrast CT scan for which I was scheduled on Monday I asked, “Should I be concerned having 3 CT scans and a PET scan all in one month?  I mean doesn’t radiation cause cancer?”  As dry as a bone he stammered how the benefits outweigh the risks and gave me some percentages of cancer through radiation.  My joke about bringing back the Andre Agassi wig complete with headband had equal reaction.  One other thing of note, I learned in the CT scan for colorectal cancer… and this is important for any of you who may have this experience later…the tube up your butt is optional.  Luckily this was explained to me in the 11^th hour, so my off ramp is still one way traffic, but I’m sure there will be several colonoscopies in my future.  I’ll come back to the results in a second.

This was the first time that Nita and I had been alone without friends, family, or children since the whole adventure started.  Nita has been an absolute rock!  She has been gracious and patient with all the inquiries, wonderful with the children, and strong like bull for the world to see.  In Houston, at my best friend’s boss’ condo (thanks George), I asked how she was doing.  Then she let it go.  She said plainly that she was scared.  Would she have to go back to work, what would she do, would she have to sell our home, get a smaller place, etc.?  A flood of emotion and concern about the future finally poured out.  I think it was cleansing.  She used to own a company with a couple of partners and she was the sales engine.  I told her why not compile all my musings, love notes and Christmas letters and get them published.  Call it “Why I miss him, musings from my late husband.”  But we’re not there yet.

So the results: we all know I have colon cancer and it metastasized into my liver and lungs.   My lymph nodes were also malignant.  Sixteen of the 32 nodes extracted were benign.  We also know that there will never be a moment where I bust through a door and announce that I’m cured.  This will be a lifelong battle that ends when I quit or can no longer tolerate the medication.  So the doctor and his PA explained the drug therapies.  This is where things got away from me. 

This is going to be Cancer 101 for some of you, for you vets out there, you know what I’m talking about.  The first two options have equal efficacy.  Folfox and Folfiri.  These are the first wave.  The former causes nausea and the potential loss of feeling in your fingers, toes, and ultimately hands and feet…and in 25% of the cases sensation never comes back.  It also makes you sensitive to cold, so you can only drink lukewarm water/beverages (more on that later). I may not look like much now, but I’m an athlete and I like coaching my kids, hunting, and well, typing.  The latter gives you diarrhea and hair loss (The Agassi wig joke).  Well I already have diarrhea, and I don’t mine wearing a cover, so Folfiri it is.  There was a third option that was rendered useless due to a genetic mutation I have.  Fourth was a pill which acts very much like the Folfiri, but causes even more diarrhea to the point where you really have to watch dehydration.  Finally part of my bleeding out was for genetic and trial testing.  They are going to sequence my genes and test tissue samples and blood to see if one of their clinical trials might be more effective against my specific genetic makeup. The downside is that I would have to travel back and forth to MDA for this and could not get it administered here in Austin.

The second shock wave of my new reality:  The administration of this chemotherapy has two major impacts.  First, I had seen all these folks in little recliners hooked up to an IV bag and thinking that I’d be going to chemo camp once or twice a week for a few hours.  Not so fast.  Instead I will be wearing a Spock like tricorder device which is a pump that will administer the drug over the course of 46 contiguous hours.  To answer what you are thinking, I don’t know yet.  I don’t know if it is waterproof, water resistant, how long the tubes are, etc.  I’ll find out either next week or the week after.  Second no drinking during chemotherapy.  Not just during the 46 hours, period, for the next 5-6 months at minimum.  I asked him about an occasional four bourbons at a football game and he laughed and said he was thinking more of a once a week glass of wine with dinner.  He also said he was from Kentucky, I then apologized and asked about 6 bourbons at a football game.  He then finally loosened up and we talked about our favorites, but the answer was still no.

My children’s pre-school has a mobile butterfly exhibit that comes once a year and is aptly called the butterfly guy.  For the last three years we’ve purchased a milkweed plant or two and watched these little caterpillars munch and poop for a week or two and then attach to the underside of a leaf, slowly make a “J” and then form a chrysalis. We then watch as it changes colors as it undergoes its metamorphosis.  Then the Monarch butterfly emerges, dries its wings, and eventually flies away to our applause.

 

Since my children were small enough to hold in one arm I have told them countless stories of kingdoms and adventure.  Josie was even convinced that she was royalty at one point (technically she still does …sshhhh – don’t tell her or she won’t let me call her princess anymore).  In any case in these stories I was always king daddy.  Also one of my favorite mariachi songs is “El Rey (the king)” which contains the line, “And no one understands me, but I’m still the king.”  I’m also drawn to one particular line in the movie Dead Poet’s Society.  We all remember “Oh captain my captain” but I think equally moving was the Tennyson excerpt from The Charge of the Light Brigade.  The quote was, “Theirs was not to question why, theirs but to do or die.”

 So the new normal is what it is.  I guess I’ll carry some crackers and anti-nausea meds with me, maybe some wet wipes, and will be home bound for a couple of days every two weeks with my pump.  I might also be a little more tired than usual, and have not completely ruled out the Agassi wig of course with headband, or maybe the Jan Brady fro.  I am comforted in the fact that I am not unique.  By that I mean thousands of people have done this before me, why should I be worried?  After all, I am the king.  And I refuse to go down without a battle!  Thanks for all the prayers, I really appreciate all of you.