Blessing or Curse, The Dorothy Syndrome and it’s ok to be Bronze!

While it’s only been 3 weeks since we started this clinical trial, it feels like a long time.  I’m sure that is due in part to all of the visits leading up to starting the trial, to our favorite new vacation getaway – MD Anderson – Houston.  This marks 5 of the last 6 weeks that we’ve been to Houston.  Sure, the allure of beautiful seaside get aways, lake homes, European vacations may be more preferred, but Houston has a special appeal to us right now.  Houston is sort of our center of hope these days.  I can’t say that it is my happy place, but maybe it’s my healthy place, or at least, the place that will give me the best shot at health.  

Funny how perspective changes so quickly.  I was talking with a cancer survivor the other night and we agreed that in a unique and obscure way, cancer has made us better.  Searching for a silver lining when diagnosed with a stage 4, inoperable, incurable disease takes some work, but I believe that there are silver linings.  Yes, I acknowledge that having cancer sucks, but once that is accepted as fact, now what?  Start to find the best way possible to survive and thrive while accepting cancer as the new normal.  

Last week, I went to the Bengals / Steelers game with Lindi, Adam and Jordan.  We always tailgate with the same group of friends that we have been tailgating with for years.  It was different this time.  This is the first time that I showed up at the tailgate since my diagnosis.  So shots of Tequila were replaced with shots of reality.  I was talking with one of my friends and he was sharing how much my situation pissed him off, how frustrated he was about it, how bad it made him feel.  I tried to respond, but got caught a little in the emotions of the moment.  There really isn’t much to say to disagree either.  He went on to say that he reads my blog and often reflects as to how he would cope with a similar situation.  It was somewhat of an awakening thought to me.  If there is a silver lining that I can hope for from my illness, the thought that I might help shape the way that people will handle a personal health crisis in a positive way, would be an awesome outcome.

As I was thinking later, I went back to a question I posed to somebody else at the tailgate – is knowing that I have a disease that will likely take my life a blessing or a curse?  I think the answer that comes to the minds of healthy people is – it’s a curse dumb ass!  I get it, but I am  viewing this from the perspective that we all are going to die one day, my path may be outlined, but nobody gets out alive!  Is it a curse to know, or is it a blessing?  

There are definitely blessings.  I see people that are constantly looking for things that will bring them happiness.  They’re searching for material possessions, for different ways to find happiness, but escaping the moment.  So busy in the search that they may be overlooking that what they’re looking for is right in front of them, if they slow down just long enough to see that it’s there. I think of it as the Dorothy syndrome.  I’m referring to Dorothy from the Wizard or Oz and that magical moment when the good fairy princess tells her that she always had the power to go home, but that she needed to figure it out on her own.  

When my situation unfolded, it became very clear to me that there are so many blessings that when I take the time to appreciate, greatly eclipse the curse.  Of course this is so much easier to say (and write) than it is to live by.  Every day I am mired in chasing a respite from the curse, trying to find my way to Oz, which puts the curse front and center.   I work hard to overcome that.  I work hard to engage in the daily activities that I love so much, whether it’s time with Felice, family, friends, golf, watching football, engaging with one of the various business interests or philanthropic causes I’m involved with or writing this blog.  I work hard to seek normalcy, find the blessings and enjoy normal life.  But like Dorothy,  it’s hard to ignore the Wicked Witch.

On this particular football Sunday, the somewhat routine activity of going to a game with some of my kids was more than just going to a game.  There was much more of a sense of how special these times are – just being together and doing something that we’ve been doing together for years.  In the backdrop, my family all has a heightened appreciation of our times together.  We don’t take those times for granted, we don’t assume that there will always be another moment to share, we realize that tomorrow is not guaranteed.  On one day when I was feeling particularly blue, my son shared a quote from Alice Morse Earle ‘Yesterday is history, tomorrow a mystery, today is a gift, that’s why it’s called the ‘present’.  While it’s pretty cliche, it’s the type of mindset that I believe one must adopt to get beyond whatever crap they’re dealing with in their day to day life.  It’s not easy to maintain this view, but I think it’s one that all can benefit from.  

So back to Houston :-).   We’re here to check and see how I’m doing after the first cycle of this trial.  As a reminder, a cycle is 21 days.  I take two different oral drugs – the base drug Xeloda and the trial drug Varlitinib (or placebo).  The Xeloda is 14 days on, 7 days off.  Varlitinib (placebo) is continuous, daily.   At this point, I am reasonably certain that I am on the trial drug, but there is no certainty.  I have a small rash on my chest that is likely a unique side effect to this drug.  The side effects have become a modest nuisance.  My hands are starting to have some cracking sores.  I have blisters on my lip.  I have irritation in my nose.  My GI tract is wrecking a little havoc with my bowels.  I am nauseous regularly, more recently presenting itself a bit like morning sickness.  I have some fatigue and best of all – my skin is a little bronze!  All of these are nothing more than inconvenient nuisances, but the bronze thing definitely freaked me out a bit.  People see me and comment on how healthy I look – ‘Hey Shane, you playing a lot of golf?’  ‘You look good, nice tan’.  Guess what, I haven’t played golf in two weeks and haven’t been in any sunshine – it’s the drugs!  I asked the Doc about it – we talked about what is causing my nice ‘bronze’ coloring as he describes it.  No concerns, just an effect of the drugs.

My blood work and other labs look really good.  My cancer marker has continued to drop, my liver enzymes and all other important numbers are solid.  So far, so good.  My body is managing the treatment and I continue on with the next round and come back to Houston in 3 weeks for scans.  That’s a blessing!

It’s a blessing that I have the ability to pursue world class care, pursue treatment options and have such a caring and loving family to feed me strength.  The prayers, support and care that so many of you offer me every day in so many different ways are such a difference maker.  So, the answer to my question isn’t as straight forward as it might appear – blessings are found everywhere.

Mike #ShaneStrong #cancersucks #findtheblessings #noplacelikehome


C1D8 in the books…

C1D8 – that’s clinical trial talk for Cycle 1 – Day 8.  Felice and I are here in Houston and had a fun filled day yesterday at our favorite Houston Hang out – M.D. Anderson’s Clinical Translational Research Center (CTRC) also known as temporary lab rat cages :-).

I was approved to be a subject in Clinical Trial: NCT03093870. 

What’s that mean?  The first thing it means is that the care plan is driven by the requirements of the trial sponsor, in this case, Aslan Pharmaceuticals.  They are recruiting 490 participants worldwide for this study.  I believe that there are 11 trial sites in the US and MD Anderson has an allotment of 15 subjects.

The purpose of the trial is to determine if the combination of Varlitinib (trial drug) and Capecitabine (Xeloda) works better than Capecitabine alone.

All subjects in the study receive  Xeloda.  Half the participants will receive the trial drug – Varlitinib, the other half will receive a placebo.  The only way that I’ll know if I’m receiving the trial drug will be certain side effects. It is a double blind study.  The subject doesn’t know and the Doctor doesn’t know.   Both drugs are oral.  It involves taking 8 pills twice a day.  Each cycle is 21 days.   Xeloda is 14 days on, 7 days off.  Varlitinib / placebo is daily.  

During the first cycle, I come to Houston each week for observation and toxicity checks.  The day starts early with labs.  Then I meet with the research nurse.  She coordinates  the rats (aka subjects) for various clinical research projects that she has been assigned to.  There is a huge amount of infrastructure that exists to support clinical trials.  There is an entire unit, which I reference above – CTRC, that handles all of the trial patients, administering drugs, conducting data gathering, and works with the trial sponsors on executing the trials in accordance with the trial protocol.  The trial sponsors, typically large pharmaceutical companies, pay big fees to the trial cites to conduct their studies.  The sponsors need access to qualified subjects, MD Anderson and other research driven facilities are obvious partners.  The hospitals gain their reputations off of the cutting edge treatments that they provide and luring patients which entrenches their position as key research partners.  This particular trial has very specific criteria based on the nature of disease, general health of the subjects, the number of previous chemotherapy treatment attempts, etc. 

Once I finish with the research nurse, Dr. Wolff comes in.  He checks out my labs, does a quick physical, discusses how I am handling any side effects and approves me to continue on, or at least that is the plan.   Once I’m done with the Doc, time to go check in to the CTRC.  The rooms are really small – large enough for a bed, chair and TV.  When the nurse, EKG tech, lab tech, Felice and I are all in there at the same time, there is no room to move.  The observation process called for by the study is very precise.  There needs to be a series of EKG’s completed 45 minutes prior to taking my dose of drugs.  Then another series of EKG’s 5 minutes before the dose followed immediately by a blood draw and then take the drugs at a precise time.  The nurse today was counting down the seconds until I took the dose, which appeared to be a little bit unnecessary.  After taking the dose, EKG’s and blood draws at specific intervals occur over the following 8 hours.  Fortunately, this extended observation period only occurs on D1 and D8.  After the first couple weeks – the observation windows occur at various times, generally at the end of each cycle.  

The biggest bureaucratic process is actually getting the drugs.  They don’t begin to process the request at the pharmacy until the Doc has signed off on the subjects participation or continued participation.  That order goes to the Investigational pharmacy.  That is a pharmacy that is in a different location from the general hospital pharmacy.  The investigational drugs are segregated from all other drugs.  There is a laborious process of dispensing the investigational drugs, going through a triple check before they are sent over to the hospital pharmacy.  All of this turns into wasted wait time for Felice and I.  We can’t check into the observation area until I have physical possession of the drugs.  On day 1, last week, it took almost three hours for the drugs to get to the pharmacy, which pushed back my observation time – we didn’t leave the hospital until right around midnight.  So why the hell am I going through all of this?  Chasing hope.  Pretty simple.  Dr. Wolff said that it is likely that Xeloda would be the next line of treatment that he would have suggested.  His feeling was that my general health is strong, and while all tumor growth is concerning, the growth that was found in my scans last month didn’t represent an ‘oh shit’ discovery and I have the time to pursue the trial and see how it goes.  His position is that it just broadens my ‘medicine cabinet’ and keeps other treatment options open.  

If I receive the control drug (Varlitinib) and there is some type of strong response, the small inconveniences that go along with the trial bureaucracy will be worthwhile.  I have had several people ask how long I will remain on the trial.  The answer is – as long as it is working, assuming I am able to tolerate the side effects.  What does ‘working’ mean?  The definition of ‘working’ may be stabilization.   Of course, my definition of ‘working’ is steady reduction of the new tumors and no new signs of progression until there is no evidence of disease.    You leave the trial if you have disease progression, or if you are unable to tolerate the side effects of the drugs. 

In the meantime, I’m just glad to be in treatment.  It’s an awful feeling to have something growing inside of you and not  doing anything about it for what appears to be an eternity – 3 weeks.  Seriously, those that know me, know my temperament.  Send me an email, I generally respond as it is landing in the inbox.  Drop me a text and I’ll typically respond before you have hit send.  Place a small tumor in my liver and wait 3 weeks to start trying to attack it?  Are you kidding me?   

I’m 15 doses into this treatment process.  It takes some adjustment.  I have to take the pills twice a day, take them shortly after eating something, and take them around the same time of day – within reason.  I have to log each dose.  This is on top of the other various things that I’m trying to do every day to support my health during treatment.  A growing list of basic, daily tasks that either promote wellness or potentially stave off side effects.   For the most part, I still feel great.  I’ve had some subtle queasiness and experienced a very slight energy drop.  Of course, my mind is also expecting side effects, so hard for me to differentiate between psychosomatic issues and real side effects.  Regardless, there is no question that I feel a little different.  The side effects of the drugs are cumulative, the hope is that I am able to tolerate the side effects.  So far so good.

So we all know that cancer sucks.  Treatment sucks.  Having cancer and not being able to have treatment – that would really, really suck.  So regardless of the inconvenience’s, the gradual onset of the side effects, make no mistake, I feel very, very fortunate to have treatment options and to feel pretty damn good.  Whatever shortfall I have in terms of the way I feel is the chemo, it’s not the cancer.  There is a huge difference in outlook between feeling ‘yuck’ because of chemo than feeling sick from disease.  

I have run into so many people in the last several weeks that share their prayers and good wishes.  Your prayers along with the text messages, emails, phone calls – all very much appreciated and make a huge difference!

Thanks for all your support!  Mike. #cancersucks #ShaneStrong