Undead

Life is slowly getting back to normal since I returned home earlier in the week.  I've taken Dr. Hwu's advice and am trying to mentally ease into the unique position of having no future treatment on my calendar.  I'm as afraid to allow myself to trust that the treatment completely worked as I am afraid to imagine that it did not.  It's the elephant in the room that we will just sit next to for a while, getting comfortable with before trying to figure out what it means.  Physically, having spent most of the past month in the hospital has left me a ninety pound weakling.  My skin is peeling from the top of my head on down as if I somehow, ironically, got a sunburn.  Except this sunburn is chemical and from the inside out.  And for some strange reason I permanently smell a strong odor exactly like that of Lipton instant ice tea (some side affects are more weird than worrisome).  I remain, and will remain for many months, on heavy duty antibiotics as the new immune system continues to grow.  But no real lasting complaints from the recent treatment, just the side effects of the extended sedentary time.  I'm now back on the bike trainer and slowly getting the engine running.  I feel good and I'm having a hard time holding back and pacing myself, if you can imagine that.  I've limited my rides/workouts to increase by only 10% at a turn which should keep me out of trouble.  I'm still not sure if I'll be riding one of the easier bike rides in the LiveLong/LiveStrong event here in south Florida next weekend.  I'm more concerned about my road skills than my legs, and since charity events are notorious for being bike crash-fests I would prefer to avoid injuring my already sensitive hip.  As of today we have over 1,400 registered riders and runners for the event with over $125,000 raised.  The goal of 1,600 participants should be easily met by next Saturday.  This is an amazing accomplishment for an inaugural event that, I think, guarantees that it is made an annual event.  Zimmerman and zMotion have really pulled this off.
     Something else I did this week was to watch Charlie Sheen's roast on television.  I believe that life’s lessons can be found as easily in the gutter as on the windswept mountaintops or the self-help section of a bookstore.  Those who do not believe this miss out on quite a few opportunities to learn a few things.  So whatever you may think of Charlie and his recent troubles, I think his summer holds a lesson for us all.  Successful people – and we cannot deny his success just because we disagree with how he celebrated that success – tend to do successful things.  At the apparent end of his crazy train ride he moved forward, not backwards.  He laughed at himself, learned from the experience and moved on.  He did not execute a reversal or a return to some previous self, but moved forward.  This seems to be evident in a newfound appreciation for what is good in his life, a renewed love for those who love him.  He appears to be turning a potentially lethal episode into a chance to improve himself.  In his own words, "I'm done with 'winning' because I've already won."

This phrase stuck in my mind this week because I’ve recently claimed in this space to be “winning” but am realizing that I, too, have already won.  Both in terms of learning valuable life lessons from a traumatic episode and also from passing a milestone in my battle with cancer.  A year ago today I made an appointment with my optometrist because I was having unexplained limited field of vision in my right eye.  This would eventually be exposed as a tumor and my initial cancer symptom.  Stage 4 melanoma cancer patients live, on average, one year past their initial symptoms of the disease.  There is nothing absolute about that number or date, or any such statistic, but that's how my situation was framed by the oncologists when I was diagnosed.  That wound up the countdown clock that started ticking in the back of my mind.  For what it is worth, today I am now past that dreaded milestone.  I have now beaten those particular odds.  And cancer has already left me a much better person - a little worse for wear,  but a better human being then when I started.  I have a newfound appreciation for my life, for my loved ones and for the great adventure upon which I continue.  And I’m not only still here, I'm very much not dead.  At the Melanoma Research Foundation's online community the stage 4’s that have beaten the odds are called the “undead.”  So that’s me, from today onward - the undead.  May I wish myself many happy returns.
    Still, we always need to keep our eyes on the prize as we pass such milestones.  For me that prize is having the three best letters is the alphabet – NED – entered in my medical records.  NED, or ‘no evidence of disease’, is the closest you can get to being declared cured of cancer.  That goal feels more real than ever now, and I swear I can almost see it if I look hard enough.  I move towards it now with increased determination, with a little more energy in my steps, because I've already beaten the initial odds against me.  What else can I do?
     So time for a score update:  William 1, cancer 0.

Details, Details

I have had a lot of questions on the details of my treatment, what is it like to go through (aggressive) cancer treatment?  I have avoided it until now, but here goes.  My conclusions are in the last two paragraphs if details are not your thing, I won't be offended if you skip ahead. The biochemotherapy was very complex so that would be too difficult to explain, so I'll take you through a course of high-dose IL2 I received after my t-cell replacement.  Join me on a not so pleasant cancer treatment journey, a week in the life if you will.
     Jerry Seinfeld had a joke about how there is no normal strength pain medication any more?  There is "extra strength" and "super strength" but nothing normal.  His suggested solution to figuring out what strength he needed was to ask his doctor to figure out what would kill him and then "back off just a little bit."  That is kind of like IL2 treatment for melanoma, because you can get up to 12 doses of the stuff but most people get 3-7 as best as I can assess. The question of how much they give you is much like Seinfeld's joke, and is surprisingly as much art as it is science.

So you start by checking into the hospital, which can be an adventure all on its own.  At MD Anderson they like to start IL2 patients on Mondays and give the doses every eight hours; at 9am, 5pm and 1am.  You always have this in the back of your head when checking in but you are most likely going to start at 9am the next day - but maybe earlier.  It makes it hard to brace yourself for what is coming when you don't know when it is coming.  And there is the administrative nonsense, the paperwork, the overwhelming feeling of being a cancer patient when you walk into the massive building full of bald people toting around IV poles.  You get into your room, unpack and make ready for whatever they throw at you.   But first you must get connected to the machines so that you can become a bald person toting around an IV pole.  There is the IV link to your PICC line (see diagram) that delivers the drugs directly to your heart. You usually keep the PICC line in between treatments, it's your semi-permanent plug-n-play that's stays with you most of the time you are in treatment.  There is the cardio measurement which is five wires connected to tabs stuck on your chest.  Then there is the oxygen monitor that is affixed to your finger.  And then the blood pressure cuff on your arm.  That is eight wires dangling off your body as you sleep, go to the bathroom, walk around the room, twenty four hours a day.
     Your first dose at 9am so you start to brace yourself.  By then you've met your nurse and assistant nurse, the floor nurse has probably stopped by and the doctors have made their daily rounds with you.  They size you up to see what kind of week they will be having with you.  You put up a strong face and try to act appreciative, like being friendly to the pilot on the airplane for no reason except that it seems like something that may help your situation.  Then you wait, maybe an hour or five minutes or an hour and a half, until two nurses in biological warfare suits walk in with bags and bags of toxic, lifesaving drugs.  For IL2 it takes 15 minutes for the drugs to flow into your system through your IV line.  Then you watch the TV with one eye on the clock, the nurses and your caregiver in your room at the ready.  They smile at you but you know they are also bracing for the storm of side effects that, in many ways, hurts them as much as you - especially if the caregiver is a parent or other loved one.  My Gatorade made cold, hot blankets at quick access and the nurses armed with pre-approved multiples doses of demerol and dilaudid (both are opioids similar to morphine) - I'm ready as I can be. While my symptoms actually varied over my two courses of IL2, my first course had the same side effects after each dose. In these, at one hour, almost to the minute after the administration of the IL2, I would start to chill. Not Jimmy Buffet on a beach kind of chill, but as if someone tossed me naked into an ice bath.  I'm talking the movie Titanic type cold that starts in your bones and works its way out.  This takes hold in about half a minute and the hot blankets get piled on.  The first injection of demerol helps give a feeling of warmth almost immediately but then the shakes start.  The medical term is "hard rigors" and it is basically violent shaking from head to toe, in a kind of fetal position grabbing my knees and trying to control the outbursts from my own muscles.  My bed shook so bad I swear it moved across the floor, my teeth chattered so hard I damaged my dental work and my heart beat so fast that I developed arrhythmias as I slept later that night.  I could not talk during this, and I focused mainly on not hyperventilating which was about all I could do.  This went on for one to two hours until the combination of successive and alternating opiate injections mollified my muscles enough to make them stop contracting and I fell off to half sleep. After each dose I felt like I had just completed a bike race, and with my heart rate averaging 165-190 bpm for an hour to two at a time that is the cardio equivalent of a fifty mile bike race for me - just a little harder effort.
     So, in five hours you get to ask the question - do we do another dose or call it quits?  The doctors assess the effects, they query you on how you feel, they see how much water your body has retained and how much fluid has gotten into your lungs (a side effect of IL2 is fluid leaking into other parts of your body).  After my fourth treatment I was on oxygen full time. Part of my lung's lower lobes actually had collapsed which further complicated my breathing. Breathing is good, not breathing is not so good. The cardiologist had visited a few times and was on call for me.  He put paddles permanently on my chest in case he needed to shock my heart during treatments. Really?  It's late at night and the doctor called from home, the nurse said that he wanted to talk to me on the phone.  He explained that this was a clinical trial - there are no "normal" results and that he could not say if my next dose would be easier or harder.  He wanted to know if I could take another treatment, that he was going to green-light it medically but needed me to be on board.  Gut-check time, DuPree.  I said yes, one more.  When the nurses brought in those toxic bags I started to regret my decision, honestly I did.  But it was time to nut up or shut up, so I did it and then passed out to oblivion.
     That was my fifth and last dose that course, but it is not over yet.  The side effects of the treatment need to be addressed before you go home.  That may take a day, or three or a week.  You gain up to 20% of your body weight in extra fluids, your organs start to hiccup and they need to be coaxed back to normal function. Your skin may blotch and peel uncontrollably, turning an itchy fire red.  Your digestive system protests and you get to discuss your bowel movements and urine output in great detail to any medical staff who comes in your room.  And its 24 hours a day, every day, without break.   Temperature and weight at 3am, blood draw at 4am, drugs at 5am, new nurse at 7am, around the clock.  You can walk the floor to get out of the confines of your room but that does not free you too much. It is 302 steps to circumnavigate my floor of 32 rooms, plus or minus 6 steps. And so it goes, day after boring day, waiting for the magical word "discharge" to free you.  Until you come back again for another treatment and start it all again. Next time may be easier, or it may be more difficult in a myriad of ways. Each treatment is different for each person, but it is rarely easy.
     So this is what I mean when I say I'm fighting cancer.  Cancer warriors do not check into a cancer treatment unit, hook up to an IV, sit back and hope for the best.  No.  They choose the aggressive treatment option over the standard treatment, they choose the clinical trial if they have to.  They say "yes" when the doctors ask if they can take any more pain.  They take control of their non-treatment time with exercise and diets.  They research treatment options and choose their medical teams.  They choose to sit up in their hospital beds instead of laying down, to walk with the IV pole instead of staying in bed whenever they can. They put on brave faces when sharing their cancer stories.  They swallow the pain, the indignity, and the fear to be brave around another cancer warrior or care giver feeling down.  They walk back into these hospital rooms over and over and over again. They start every day as I do, saying "I'm still alive - so fuck you cancer."
     I guess I did not want to write this because I did not want cancer thinking we are having a tough time fighting.  But you are right to ask me to share this.  You have joined the fight against cancer if you are reading this, and I know that you can handle the truth.  Just remember that in every fight - no matter how costly or how lengthy or how horrific - there is a victor.  And cancer will not stand victorious after these battles.  No way, no how.

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