Downtime

In a war, troops are not always engaged in combat, but they are always fighting.  Time spent behind the lines is a weird kind of limbo, knowing that a life and death battle rages on just over the horizon but spending a lot of time just hanging out.  I guess many of you are wondering what I do with myself in between treatments.  Well, spending time at home has been an interesting exercise in both trying to get stuff done as well as filling up the time of the day. This is made all the more complicated by a combination of lack of ability to do things you could, and wanted, to do before and all the time off from work to get treatment.  I used to budget out every minute of my time, planning out my schedule three months in advance in thirty minute increments with color coded graphics and synchronized calendar files.  Now, for the first time since I was in college, I find each day between treatments a relatively blank slate. I'm not going to work, not riding my bike, not going out and that frees up about 99.6% of my non-family time.  If you think that what you do does not define who you are then you should try taking some serious time off from all that you do, it’s an eye opener.  Now I'm not a finance executive, not a cyclist, not a not a stranger to a glass in my hand (at least for now).  I wonder if I met someone new how I would describe myself?  To help answer that question I’ve been spending some serious time developing an attitude of gratitude, and defining who I am by all that I am blessed with instead of all that I do.  For all I've lost so far I am still a seriously lucky dude.  Two healthy, perfect girls and a wonderful wife would make it all worthwhile but I have so much more - including the relative good health to fight this cancer.   To whit, I've started a morning routine of walking the dogs one mile followed by yoga and core exercise (balance board, etc.).  I started setting my alarm clock and taking showers on a regular basis and trying to maintain some discipline while in the rear with the gear.  Chemo brain still makes anything intellectual a challenge, but I can fight cancer every day between treatments with push-ups and sit-ups.  I am still watching massive amounts of the Military Channel and Versus Cycling TV as well as afternoon napping with the dogs, but working on speeding my recovery is going to help me beat this thing. So in between treatments I'm spending my time continuing the fight.  I'm rebuilding reserves, continuing to research treatment options and tactics, licking my wounds and readying for the next attack.

Dad Day

Well, round 2 done.  OK, I may not have been doing pushups in the corner but I made it through the entire decrescendo course of biochemo without missing any of the drugs (last time they pulled me short of the last vinplastin and Interferon doses because of low blood counts).  I insisted on every drop this time.  It was rough but I think I came out of it in better shape than last round.  I’m weak, my skin is peeling like an Ohio tourist on their first spring break to Panama City, but I’m overall in good shape.  I had my PICC line removed, so no cyborg plugs.  I have two weeks at home to enjoy being a husband and father.  Thanks for all the good wishes during my hospital stay; I wish I could respond to all of you but for some I don’t have e-mails.  But remember that each and every message means so very much to me.

   So, the good news.  My t-cells grew in sufficient quantities to enter the TIL study (detailed below, link on the right), yeah!  They have been frozen and await further instructions.  On June 30^th Ann and I return to MD Anderson for imaging, CT scans of the whole body, to see if we’ve made any progress against the cancer or if cancer has made any progress against me.  If the biochemo shows progress we may stick to it, starting a third round on July 8^th.  If no progress, or negative progress, than we’ll likely plan to enter the TIL study at about the same time.  Either way, cancer gets some more ass kicking but this could be the beginning of the end or just the end of the beginning.  July 1^st will tell, and boy is that going to be an ominous meeting with Dr. Patel.

   Today is Father’s Day and the topic has been weighing on me the past weeks.  As I lay in the hospital the duties of fatherhood went on untended except by my overburdened wife.  The pool pump broke, the insurance check was not right, the kids toy castle needed rebuilding.  Cancer has taken away much of my functionality of what the role of father and provider means to me, at least temporarily.  Any guy will tell you how this cuts deep, how the inadequacy weighs down on you like a ton of soft bricks.  Husband is bad but falling down on father duties seems all the more difficult to swallow.  All I can do is contribute where I can, support those supporting me, and vow to come back as a better father and provider when this battle is finally drawn to a close.  I relish this bit of shame, and use it as fuel for the fight when I ever lack some spark.  But today, on father’s day, when I see the unbridled joy in Gwen and Sabrina’s eyes when they play with me, I remember that what I may temporarily lack in being a father is not the entirety of the role.  Any man can be a Father but it takes someone special to be a Dad, and cancer cannot take that away from me.

Getting By With A Little Help From My Friends

Going through the biochemo routine one more time.  I'm a bit more comfortable this time as I am a little better prepared. I had a tailor make me shirts and a sweater with zippers down the side so that I can change them with my IVs in non-stop for 6 days.  I also brought a contraband portable humidifier so my head does not shrink.  I seem to be tolerating the chemicals a bit better, but its early on. Perhaps its because of the positive support I'm getting from all of you out there. Yesterday my niece Carli kicked ass in a tennis tournament in Crestview, Florida in my name.  She won two games by far and lost two games by only 1 point each.  I'm proud of her.  In Tallahassee two friends of the family, Joe Boyd and Jim Rudnick, rode their bikes in a cancer charity ride and dedicated their rides to me, emblazing my names on their shoes.  I can't believe so many people care, but it is all more energy that I can put into the fight and it makes a difference.  My 4 year old loves 70's rock, for some reason, and recently started singing a couple songs - "Just Remember I Love You" and "Keep On Smiling".  Coincidence?  Or is she sending me her support, too?  "Just keep smiling through the rain, laughing at the pain, just rolling with the changes, till the sun comes out again."  Support comes in many wondrous ways and I appreciate every one, large and small.  Maybe my blog should be William & friends fighting cancer.  That would scare cancer, eh?