Pre test results, pre the Grande Boucle

Ann and I are heading off to Houston, Texas, tomorrow for CT and MRI scans on Thursday.  The scans will show if there has been any progress made in fighting the cancer, or if cancer has made any progress on me by growing and infiltrating more of my body.  The main focus will be on the tumor in my lung, which is kind of floating there and easy to measure and compare from the March PET scans.  On Friday, my case will be reviewed and we’ll meet with Dr. Patel to review the results and make a battle plan.  If biochemo therapy is working then we’ll continue with a third round of biochemo starting next Friday. If it is not working, we’ll likely switch it up and I’ll enter the TIL (tumor infiltrating lymphocyte) clinical trial at MD Anderson next Friday.  Not sure what we’ll do if there is no result at all.  I recently read a blog called Melanoma Mom of a young woman with a very similar case to mine where her two treatments prior to entering the TIL study actually shrunk her tumors enough to avert the need for anything else, so there’s as much chance of great news as of bad.  Needless to say we are on pins and needles awaiting the results.  All I can say is that I feel great now, two weeks after my last biochemo treatment, and I know my body has been busy kicking cancer’s ass.  I’ll let you know the results over the weekend.

Also this weekend is, much to my wife’s dismay, the start of the 98th Tour de France.  Being a cyclist and pro cycling fan this means 23 days of the most amazing performances of individuals and teams, epic battles steeped in a hundred years of tradition across 2,131 miles of the beautiful fields and mountains of France.  And very dear to my heart is the greatest cyclist in the history of le Tour, seven-time winner Lance Armstrong.  Especially so this week, pre-results, as I consider what my cancer diagnosis means to me.  I believe in the bottom of my heart that we ultimately determine what things mean to us and that in turn determines our future.  Life’s roadblocks, setbacks and failures have more of an impact on our lives than successes and bouts of contentment.  This setback in my health has the potential to have an enormous effect on my life, and that can be a negative or positive.  I’ve determined, and am committed, that it will be positive.  I will come out the other end of this fight a better man, a stronger father and more loving husband.  I'll come out a more complete human being with a new fire burning in my gut to try to prevent this from happening to others.  In short, this will be a turning point for me, a lesson in life that I’ll take to heart to make my life – and hopefully that of others – better and more complete.  And I’m not alone, studies show that most cancer survivors come away from cancer with a sense of blessing.  Lance Armstrong was crystal clear on what cancer meant to him.  He said:

     “Without cancer I would have never won a single Tour de France.  Cancer taught me a plan for purposeful living, even that in turn taught me how to train and win purposefully.  It taught me that pain has a reason, and that sometimes the experience of losing things – whether health or a car or an old sense of self – has its own value in the scheme of life.  Pain and loss are great enhancers.”

     Whatever the results on Friday, I know – beyond a shadow of a doubt – that having cancer is going to make me a better person.  Take that cancer, and stick it where the sun don’t shine. 

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?

Preparing for Round #2

I went to my ophthalmologist yesterday for a checkup on my right eye - the site where all of this started back at the end of last year.  He was notably mute about the misdiagnosis (the assumption that the mass was a cavernous hemangioma without looking for other possibilities, such as cancer).  But it is what it is, and doctors really do not like talking about mistakes.  The good news is that my eye seems to have made it through the radiation without any major damage.  Also, there is evidence that the radiation worked in that my proptosis (eye bulging) has reduced and my blind spot has gone away.  The blind spot, which can be seen in this image on the right from three separate exams.  The circle represents my field of vision in the left and right eye, the dark shading is where blind spots exist.  There should be one dark spot for each eye which represents where the actual optic nerve is - a natural blind spot we all have - but all else should be clear.  Back in December I could not see in the the upper right quadrant of my right eye (the shaded area).  In March, most of the upper half of my right eye vision was blurry.  But now, after Dr. Freedman's masterful work with the space-age radiation gun from tomorrow land, the blind spot is gone.  It was caused by the tumor pushing up on the optic nerve, bending it and causing light to distort in my upper field.  It apparently has decreased in size and stopped pushing on the nerve, giving me back my full sight.  Yeah!  I ordered some reading/TV watching glasses yesterday as my vision has not returned to 20/20 but does seem to have stabilized.  After I finish kicking cancer's ass I might get Lasik to correct it back permanently.  The tumor might even shrink more with the biochemo, but in reality there is not much blood flow there to get the chemicals inside so it might - hopefully - just be a a site of necrosis (dead cancer debris) I'll have as a lasting souvenir.  So, cancer, I'll have to say that I kicked your ass in the old eyeball front.  I hope the news depresses cancer, because tomorrow night the chemicals that cancer dreads so much start again.  And as treatment cycles are designed to do - even though cancer has not yet recovered from the last round of biochemo - I have.  I had a friend once that was a golden glove boxer when he was young.  In between boxing rounds he refused to take a seat, but just stood and stared at his opponent as he was attended to by the other support crew with water and verbal support.  Sometimes, if he felt strong enough, he would do push ups while his opponent sat there and caught his breath.  He said it completely demoralized his opponents.  That's me, and I love doing push ups.

Great News for Melanoma Patients

In case you have not seen the news this weekend from ASCO (American Society of Clinical Oncology annual seminar in Chicago), here is what the Wall Street Journal reported this morning:  "Major Shift in War on Cancer Drug Studies Focus on Genes of Individual Patients; Testing Obstacles Loom.  CHICAGO—New research is signaling a major shift in how cancer drugs are developed and patients are treated—offering the promise of personalized therapies that reach patients faster and are more effective than other medicines.  At the heart of the change: an emerging ability for researchers to use genetic information to match drugs to the biological drivers of tumors in individuals. Studies released at the annual meeting of the American Society of Clinical Oncology here are helping to support previous findings that personalized medicine—introduced more than a decade ago—is closer to being realized as a weapon to fight cancer.  "A pattern is developing at an accelerated pace where we are able to match genetic information about a tumor to a new agent and get results," says John Mendelsohn, president of Houston's MD Anderson Cancer Center."
“Another report featured results from an initiative at MD Anderson Cancer Center involving several experimental drugs in initial, or phase I, testing. Typically, phase I studies of cancer drugs test a single agent in patients to determine a maximum tolerable dose with the hope that a treatment effect might be seen in a couple of patients.  The MD Anderson program pooled 1,144 patients in a phase I study after profiling their tumors for mutations that might be targets of the tested drugs. Apostolia Tsimberidou, the researcher who led the study, reported that 40% had mutations in 10 molecular pathways that were targeted by the experimental compounds.  Tumors in 27% of those given agents that targeted their mutations responded to treatment compared to 5% for those with unmatched therapies.  Other researchers said such a high response rate in a phase I study was highly unusual and could help prompt other academic and corporate researchers to change their protocols to help speed the early-phase trials.  Such testing of patients is also moving into clinical practice thanks to plummeting costs of performing DNA sequencing that researchers use to identify patients' mutations.  Massachusetts General Hospital and MD Anderson Cancer Center are among institutions beginning to offer routine genetic profiling of tumors for every patient, moving into clinical practice a strategy reserved only for research just a year or two ago and unheard of a decade ago.”

Full article here and another article in the Journal "Two Melanoma Drugs Prolong Survival for Some Patients" on Ippi and the BRAF treatment can be found here.

Nadir

Well, half way through my two weeks at home and I’ll never fail to appreciate my white blood cells again.  In chemo, blood counts such as red and white blood cells and platelettes continue to decline after the chemo chemicals stop.  The low point is about day 15 (first day of chemo is day 1), which was coincidently the start of a very bad few days for me.  I felt pretty good - and was getting better - but then an insect bite on my leg got infected and the two wounds form my surgery started flaring up and threatening infection too.  On Friday my temperature hovered around the critical 101F, above which I have to admit myself to an emergency room because my body cannot fight an infection with low white blood cell counts.  Ann spent the day on the phone with nurses and doctors, but we’ve been able to keep the infection at bay this weekend and avoid a hospitalization.  Doctors predicted day 15 to be my low point, or “nadir”.  Nadir means many things including the point of the celestial sphere that is directly opposite the zenith and vertically downward from the observer, and the lowest point of a person’s spirits.  But don’t worry; I’m far from a low point spiritually – just slugging it out until I go back to Texas on Friday.  Its great to be around the kids all day, and Sabrina is learning how to be a pet doctor by taking care of me.  When I’m napping in bed she’ll sneak in and take my temperature with an ear thermometer and report back to Mom.  Both kids are handling it well, and we’ve had discussions with them about Daddy having cancer (the hardest conversation I’ve ever had in my life).  Sabrina often tells me that it makes her sad that I am sick.  But the home front ticks along in its daily rhythms and we’re all together and that’s fantastic.  Attached is a picture of my new hairdo.  The radiation on my right eye finally caused my hair to fall out along the right side of my head, which looked like a major shaving accident.  Ann told me mattor-of-factly at breakfast that my “right sideburn fell off.”  So I had a barber even it out.  I think it looks good, a proper fighting man’s haircut my old drill instructors would be proud of (minus the facial hair).  Today is National Cancer Survivor Day, and they say that every cancer patient is a survivor from the day they are diagnosed.  That was probably my spiritual nadir, the low point for me in this fight.  I feel that every day since April 1^st of this year has been a day of survival for me, a day of progress and fighting and outlasting an enemy.  On this Survivor's day I remember what Lance Armstrong told cancer - “I am a survivor.  Cancer, you will not break me.  I am a survivor.  Cancer, you can’t survive ME.”