RTB - return to base

To update, the t-cell replacement phase of the clinical trial is over and I am back home.  Nothing like 16 days in the hospital to make you appreciate the finer points of the ole homestead.  In those 16 days we killed off my immune system with chemo, replaced that with my newly grown t-cells designed to fight melanoma, used high-dose IL2 to welcome and grow the new t-cells and then waited for immune system to bounce back enough to let me out in the general population with you germ infested types.  The chemo went by pretty easily, although the after effects are just starting to be felt.  As of today I am severely follicly challenged.

The t-cell transfer was exciting, albeit a little anticlimactic.  Two scientists brought the bag of t-cells to the research team, who handed them to my medical oncologist, who handed it to the clinical nurses who handed it to my day's nurse.  In thirty minutes they were in, all the while all the aforementioned medical staff loitered around my tiny hospital room.  I'm officially the 46th person to have undergone this at MD Anderson (about 100 have undergone it at the National Cancer Institute).  They have done surgery on nearly 500 patients at MD A in order to get them into the study but most of them dropped out along the way.  Not me, this was my plan from day #1 and - much to the misfortune of cancer - I succeeded.  One thing that I noticed in the hospital is that there were two types of patients - those having things done to them and those having things done for them.  It comes out in the way people describe their treatment, being subjugated or being empowered.  My chosen medical team has performed some major science fiction for me in my battle for cancer, I can not thank them enough.  Here is a picture of me with Dr. Patrick Hwu, who developed this process with the famous Dr. Rosenburg when they used to work together at NCI (I promise that is him).  I go back on 9/13 for another round of high-dose IL2.  I have to say that the HDIL2 is pretty rough, but the effects seem to be short lived.  I had five doses last week, and hope for at least as many when I go back.  Then we have an initial set of scans at six weeks and twelve weeks.  My treatment protocol is complete at this point, and it will be time to get back to work and a normal life.

     Speaking of getting to work, kudos to my wife Ann who is riding in the LiveLong/LiveStrong event on October 2nd and she's the third highest contributor so far for the organization, in addition to getting quite a few friends and neighbors to participate in the ride.  If you want to participate or support Ann, she has a dedicated web page with all the information here.  I am very excited about the ride, and plan on riding one of the three courses, even if I'm in a wagon being pulled by zMotion riders.

     Yesterday I was in the hospital hooked up to Wilson and a dozen other machines, being poked and prodded around the clock.  This morning I lay in bed with a little girl in each arm watching the sun rise over the hedges.  The war is not over, not by a long shot, but it is good to be home to savor a victory.

     "Success is not final, failure is not fatal; it is the courage to continue that counts."  W. Churchill 

Cone of Uncertainty

I've finished a week of lymphodepletion here in Houston and I am scheduled to get my new t-cells tomorrow afternoon.  The hospital staff and medical team are all abuzz about my looming Day 0.  My white blood cell count was 0.8 this morning, down from over 8.0 when I checked in (normal levels are 4.0 - 11.0).  They should be 0.0 by tomorrow and I had my last chemo round this morning.  The chemo has not been that bad.  The first two days of cyclophosphamide were pretty bad in terms of the nausea and chemo brain.  But the last five doses of fludarabine have had little impact on my physical or mental faculties.  They have even cut me loose from the IV pole for dinner the past couple of nights which has been wonderful.  Besides those respites, me and that IV pole are literally inseparable.  I spend all day with it, sleep with it, take it to the bathroom with me.  It reminds me of my M16 rifle at Parris Island.  I actually caught myself arguing with it the other day when it was beeping at me saying it needed to be plugged in to recharge it's batteries.  I knew It had another hour or so in reserve.  However, Wilson - that's what he likes to be called - won the argument.  He always does, and why wouldn't he with that infuriating beeping?
     To keep from going nuts I am employing the techniques I've learned from many television seasons of "Lock Up" and "Locked Up Abroad" on TV.  I exercise every morning, schedule my in-room breakfast followed by coffee with my Dad.  I spend my afternoons in the observatory on the 24th floor playing video games or writing poetry.  I started a series I call "hospitalization haikus".  My first is an observation on Wilson:

     Hanging icicle drips
     Poison, melting, drip by drip.
     In spring hope explodes.

I have many more.  Right now I am adjusting to isolation, which started this morning.  Because they killed off all of my white blood cells I am prone to catch any little virus I come into contact with.  Everyone who comes into contact with me needs to wear masks and gloves, even my dad sitting in the room watching TV with me.  I can still leave the hospital room for one more day, as long as I wear the same garb.  So I haunt the hospital floors looking like a surgeon in pajamas.  After tomorrow I'll be in lockdown when they introduce the new t-cells and start the high dose IL2.  Then we wait at least five, or as many as fifteen, days until my white blood cell counts get back up to an acceptable level.  Of course, I'm expecting to be on the short side of that based on my previous bounce back from biochemotherapy.  Either way, I'm going to be here for a while.  I don't even dare to start thinking about going home.  But it has been especially difficult being here with hurricane Irene threatening home the past few days.  This morning they moved south Florida out of the "cone of uncertainty" for hurricane Irene.  I'm glad the wife and kids and grandma and the dogs do not need to deal with an evacuation, nor do all the other residents so familiar with hurricane's death and destruction.  It looks like my situation with the cell transfer has also finally moved out of the cone of uncertainty.  Perhaps I am in the sphere of possibility, or the cube of positivity.  Whatever we call it, a close call with potential disaster has been averted for now both here and there.  Although I am far from home I know what I've missed with the family in these weeks will be paid back a million-fold when this works.  And it's a good place to be here with Wilson and the great MD Anderson medical team, kicking cancer's ass around the clock, non-stop, 24/7.

Game On

Well, I am in the hospital room at MD Anderson right now and ready to start the adoptive cell therapy tomorrow. Then it's game on. I feel really strong right now, although cancer has gotten a few licks in over the past couple of weeks. The tumor in my head has been hurting and the one near my liver feels like someone is constantly elbowing me in the back, along with the other annoying aches and pains. Dick Marcinko says pain is a positive signal, proof positive that you are still alive. A lot of pain makes you "VMA" - very much alive. I think cancer is really scared and is just throwing in some jabs before the real showdown. It will take more than a headache and a poke in the ribs to scare me off. In fact, it's really serving to piss me off. I've been getting really angry waiting for this clinical trial. Angry that cancer sucks so bad. Angry that cancer affects 28 million people around the world. Angry that we haven't beaten in yet. Angry that so few people know enough about it to care. But I welcome the anger, it is the fuel for toughness.
     If I needed a lesson in toughness this week I got one from my five year old. She sprained her neck the other morning before school. Our chiropractor friend adjusted her before she went to school but she was still pretty sore and held her head at a twenty degree list all day. She insisted on going to her last day of pre-kindergarten and to her karate class. The first was fun and not physically challenging, but I was willing to let her slide on the martial arts. She knows the importance of showing up for karate class unless absolutely unavoidable. To not show up is an insult to the teacher and to the martial arts school. This a lesson they teach the students on day one. So she uniformed up and went through the whole class without complaint. At one point the sensai noticed her stiff neck and pulled her out of the wrestling-with-classmates portion of the class. Instead, he chose to be her wrestling opponent for a class demonstration. She won the match, giggling all the way. When I expressed to her how proud I was of her for going to the class when she could have stayed home she said that, like Horton in the Dr. Seuss story we read the night before, she had to do "the right thing." Amazing. Inspiring.
     Well, I plan on seeing her earn her next belt in karate. I plan on seeing her get her blackbelt. I plan on seeing more of her doing the right thing as she grows up. Now it's my turn to do the right thing. My turn to tough it out and show up for the fight with this cancer that threatens to take away all of that. My turn to step up, suck it up and harden the fuck up. It's time to fight.
     It's on, cancer. You and me, tomorrow. And I'm going to kick your ass.