Winning, duh!

I am in Houston to start the second part of the clinical trial.  This is exactly like the last week of the the first part - high-dose InterLeukin II.  I won't have the side effects of the TIL (tumor infiltrating lymphocytes) treatment that kicked off my last stay in the hospital so my infant immune system should not keep me in the hospital any prolonged period of time this stay, and I hope to head home by the middle of next week.  Interestingly enough, the doctors say that the the IL2 this time is actually worse without the TIL.

Today I met with the head of the MD Anderson melanoma department, Dr. Hwu, who is also the head of the clinical trial I am going through.  I asked him what else I can do to help the t-cells kick cancer's ass after I get home from the hospital.  He said that anything helping my immune system recover and grow is a help.  I've already addressed that with a plant-based ph-level diet and excercise, as well as avoiding snotty-nosed kids (except mine).  He mentioned a blind study that compared the success rates of patients who participated in creative writing and those who did not.  The conclusions were that patients involved in actively expressing themselves had higher response rates.  He suggested any process of removing stress from meditation to yoga to writing.  Maybe I'm not writing a blog, maybe I'm actually healing myself!
     Of course, this all seems a little bit obvious to me.  I firmly believe that what we think translates directly into what we are.  An important part of that is what we choose to focus on.  Our mind, like a camera lens, can make things sharp or fuzzy; big or small.  And we have our fingers on the lens controls, no one else does.  So when the doctor suggested trying to not take it all in too much, to not be too burdened too much by all of this, it resonated with me.  Indeed I see this as the source of my strength through this struggle.  Fighting cancer can seem overwhelming and all intrusive.  It can seem that all of my life is involved with cancer and nothing of my old life is left, that it occupies every last corner.  But instead I choose to see the battle against cancer in fragments.  There are doctor visits here and there, occaisional pin pricks and IVs, random and unexplained pains that come and go like the winds.  Certainly there have been alot of them, but I choose to see them as interuptions along the walk of a wonderful life.
     And it works the other way, too.  What I do choose to see as overwhelming and pervasive is the amount of care, love and warmth that has come my way as I have gone to fight this battle.  Every day brings another surprise, another level of unselfish caring.  Aquaintences, not familiar enough to even call friends, reaching out beyond their comfort zones to be sure that I am OK and offer any assistance they can.  Family members, long since considered close, have flown back in to support their own.  Medical professionals, to whom I should only be a medical ID number, have grown fond of the stories of my children and express an investment in my recovery that belies sincere concern.  This is everywhere in my life, it is entirely inescapable.
     One caring group, not only caring for me but also for my baby steps I've made in getting a message out about the misconceptions of skin cancer amongst the young and healthy, is zMotion.  They have allowed me to participate in their promotion of the LiveLong LiveStrong even this October and offer continued support.  As a matter of fact, Zimmerman advertising agency which sponsors zMotion cycling, just finished a video promoting the event that shares my story (you can see it here).  Ann is still raising funds for LiveStrong and this event.  I have a new batch of my special cancer fighting bracelets in and I'll send you one if you donate to LiveStrong at her site (here).
     So maybe I'm a little crazy to think that it seems obvious.  Maybe I'm delusional to think the recomendations of doctors seem straightforward enough to be simplistic.  Maybe I'm a little nuts to expect to kick cancer's ass.  It's not that I'm taking anything for granted, believe me I am not, I'm appreciating the great magnitude of all the forces being brought to this battle.  That support becomes the troops, the reinforcements, the logistical bases, the high-tech weaponry.  From friends to medical experts to anonymous supporters, the forces aligned against cancer in this war are awesome to behold.  Cancer has picked the wrong fight this time, chosen the wrong body.  Cancer is going to pay for that mistake, and not just in my body now.  The message going out just may prevent cancer from forming a beach-hold somewhere else.  Winning.

Fighting Words

I’ve been home for a few days now and I’m feeling very much alive.  The new t-cells must be working as there has been 'sensitivity' around the areas of my metastasis, and some have visually shrunk already.  I’m pretty restricted in pain medication options because of the sensitivity of my immune system and the antibiotics I’m taking, so I’m toughing it out old school.  I know that a few bad days will help me appreciate the good ones.

     Mentally it has been a few good days at home.  When I left the hospital last Thursday I felt something transformational, like a weight off my shoulders or some line crossed underneath my feet.  My confidence level ticked up a notch and I now feel really good about my chances from here on out.  Statistically I have moved into a select subset of those fighting late-stage melanoma of which a majority expects positive long-term response.  It’s the first time since this fight started that I’m on the business side of 50% - and it feels very good to be here.

     Although "here" can be a bit lonely as I do not have many friends who are battling cancer.  This is probably because of the distance I am traveling to receive my treatment, or more honestly, my reluctance to reach out to other survivors.  One friend I do have is a young woman with three small children, a job and stage 4 melanoma very much like mine.  Her blog inspired mine and, although we've never met, we e-mail at length about the many tough and the sometimes humorous sides of facing cancer.  We wrestle with many of the same treatment decisions, sometimes with the same medical teams.  We also confide some darker thoughts to each other about dealing with oblivious healthy people and self-centered care givers, cancer insider stuff.  On Thursday, as I skipped out of the front doors of MD Anderson resplendent in my newfound confidence, on the other side of Texas my friend lost her battle with melanoma.  Irrespective of my oft-quoted Mr. Churchill, failure is indeed sometimes fatal.

This blow - and it is a surprisingly painful one - serves to underscore the seriousness of my endeavor, our battle.  And I choose those militant terms quite deliberately.  The NY Times on Sunday examined the debated use of militant terms to describe dealing with cancer.  People such as Dr. Andrew Weill suggest it is more healthy to see cancer as part of the natural process, a problem that needs to be solved rationally.  That calling cancer an "enemy" is more self victimizing and less calming.  They also suggest that militant speak makes “losers” out of, well, losers.  Dr. Weill and his type can kiss my tumor-riddled ass.  My friend did not die and leave her family behind because of a health issue poorly considered.  She is not a “loser” in that she lost what she saw was a battle for her life.  Cancer is evil, it is an enemy that wants to take the ultimate property away from us, our bodies.  What it may lack in obvious intelligence it makes up for in deadly persistence.  And like any horrible foe, it is ultimately conquerable and hopefully it will be eradicated in my time.  In that time, like my friend, I am going to fight and fight and fight.   I am not going to honor cancer by calling it a natural process.  I am not going to limit my response to the rational.  I am not going to thank God for the bluebird singing outside my hospital room window.  I am going to force cancer into a corner and then I’m going to strangle the life out of it.  I’ll be thinking of my friend when I do.

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