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The elephant in the room.


The elephant in the room.

May 17, 2015

Let me just address the elephant in the room.  The result of my scan was not good.  My current clinical trial, from the looks of it, is not working according to my doctor.  He called as we were on our way home from the hospital.  The results came fast since I was the first patient scheduled for CT scan that Friday morning, so the radiologist got to it right away.

“Hi,Mr. Alvarez, Dr. S. here” said the familiar voice.  Dr. S and I are getting to know each other well.  He normally talks fast and is always smiling, but inspite of the friendly greeting his tone this time betrays him.

I stopped the car, parked, and put my cellphone on speaker so my wife could hear.

“The scan results showed some growth in your lung nodules…”  I stopped listening and just looked ahead.  It was not the news I wanted to hear.  Another bad news given.  I thought I was ready for this but no matter how many times  I get them, it still gets to me: Shock and disappointment.

My thoughts came back because there will be changes again, that is if I want to.  It always boils down to what I want.  The funny thing is you think you are in control but in reality you are not.  I want no more chemo but I still have to go for treatment (only if I want to).  Duh?

Dr. S gave me more details and told me about my options.  Options? What options?  It is more like pre-destined—and forced—options because they were not what I want.  Do they have something more pleasing like a Chinese buffet menu?  I digress, but today’s menu is:

  • stay on for more treatment with the current clinical trial to see if I respond or
  • move to another clinical trial.

You like, no like?  (In Chinese tone).

But this is serious real-life (and death) decision.  This is not even worthy of a FB post needing like/unlike response because there is nothing to like in the choices in front of me.  This is serious sh*t.

So now I am back to square one again.  Stay on and hope I respond, or move on and hope the next one works.  Two options both based on hope which, of late, is a very precious commodity.  Hope is the one element that has been fueling me all these years and lately I am running on fumes.  It is a wish, a thought, or a plead for something better.  Is that too much to ask?

Perhaps I should just ask for something simpler or maybe not ask at all.  Just do the gerbil run-to-no-where and enjoy the ride.

Cheers.

P.S.  On Wednesday I meet with my doctor to discuss other clinical trials and decide.

Judgment day: Friday


Judgment day: Friday

May 13, 2015

TThis Friday, May 15, is judgement day for me: I will have my scan on that day.  I will know if this new immuno-therapy treatment is working for me or not.  A stable result or no tumor growth is good but a shrinking in size or reduction in the number of nodules would be awesome.  Worthy of a happy dance.

I have been in this situation many times and I still feel anxious each time.  Over the years I’ve had good news and bad news.  I have done the happy dance and have shed tears of anguish.  No matter what, I take what is given.  Just look at me now.  I have made it this far and still standing.  I am thankful.

Friday you might say is marathon day.  It is the day when you know you have put in enough to make it to the finish line.  The marathon gods always know if you cheated on your runs because it will be painful.  Pre-race jitters, like pre-scan days makes me anxious.  I makes me question: “Did I do enough (to rid myself of cancer)?”  Did I exercise enough?  Did I pray enough?  Did I eat vegetables enough?  Is there anything else I can do?

More kale?

Since March 10, I was preparing for this moment.  That was the time my wife and I left for Jerusalem, the start of our holy pilgrimage that included Rome.  It was a journey of self-discovery…and adventure.  In Jerusalem, I ran the half-marathon and visited as many holy sites as I can.  I prayed, knelt, asked, pleaded and wailed to all the holy places that would take my petitions.  It did not matter if it was of the Jewish or Muslim faith, I would go the distance to find a cure for my cancer.

So now it has come to this.  No amount of prayers or exercise is going to change the outcome this Friday.  I know you are praying for me.  Whatever the results, all I know is I cherish each day I am given.  I have put the “miles”, and would readily put in some more for a chance to see tomorrow.  I have savored each moment and I would openly take what is given because life, minus the noise, is just so beautiful.  L’Chaim.

Cheers.

P.S.  I ran four miles this morning, went to my treatment, and will be back tomorrow for another round.  Then, an early CT scan Friday: Judgement Day.  Drum roll, please.

Ethan’s World.


Ethan’s World.

May 1, 2015

FFour years ago I was blessed with the arrival of my grandson, Ethan.  Back then while in agony of late night chemo rebound, I had asked God to make me live long to see my grandkids.  He took my moment of weakness seriously.  Ha!  I am glad he did.

Since then, I have been enjoying Ethan for the past four years.  He celebrated his birthday last Saturday, April 25.  He received a bike bike for his birthday so now he can’t wait to go home after school to ride.  He would don his Spider man helmet, knee pads, elbow pads, and gloves, and off he goes.  His world is protected, care-free, and innocent.

My boy

My favorite baby pic of E

Where has time gone?  Looking back I count: That’s four years with Ethan and seven years of living with cancer. You really have to make the most of the time given you because you will never now when the fun stops.

Each night, after taking a bath and in his pajamas, Ethan would come to our room to say good night.  He would enter our room sometimes prone like a frog then leap his way to our bed: Ribbit…Ribbit.  Or sometimes he enters as a cheetah roaring and trying to scare us: Roar!  He completes my day.

 

He is oblivious to the fact I have cancer: I am Ampa, his playmate, and nemesis at times.  I am thankful he came to my life.  His innocence makes me forget cancer and makes me look forward to tomorrow.  He gives me hope that somehow I will be leaving him something that is part of me, like the memories of our time together.

Cheers.

Big boy at 4 years old.

E-boy now 4 years old

“The only thing we take with us when we die is what we have given away…” – Archbishop Sartain of Seattle, WA.

 

Taking things for granted.


 

Taking things for granted.

April 23, 2015

 

YYesterday, I started the cycle 2 of my treatment.  You might say I started the second set of the same immune-therapy treatment I started March 30.  So far I am doing good other than the mild facial rashes that looks like acne.  It is not too pronounced because I have been taking antibiotics to control it but it is there alright.

With this regiment I am unable to run but I am able to go to yoga and do a few exercise.  I tire easily and have been coughing.  I miss running.  It helps me find peace and it gives me a sense of normalcy.  When I run, especially on a beautiful day, I hear my rhythmic breathing, I feel the crisp air and the warm sun against my skin,  and I start to perspire.  Lately, I have been sluggish and unable to run, which makes me bitter at times.  That’s when I really have to dig deep to put things in perspective.  I may not be able to run but I am still here.  Life is such a tease.

Last Monday, April 20, was the 119th running of Boston.  Lelisa Desisa from Ethiopia won the race in 2:09:17.  He was also the winner in 2013 during the bombing.  I watched it online and tracked a friend (TimU) who finished to qualify again for next year.  What an achievement.  Boston is always a dream for me because of the challenge.  Unlike other marathons, you need to pass a qualifying time based on your age to enter, and that’s the challenge.  I am too slow for this race but there are other races to join.

The trick is to make the most of the opportunity.  I need to tattoo this in my forehead.  I need to hear this when I don’t feel like getting out of bed after a miserable night from chemo rebound.  Also, I need to take things in perspective.  I am still here.

Cheers.

P.S.  Former Archbishop of Chicago, Cardinal George, passed last Friday from cancer.  My wife and I tried to go to the viewing but missed the time slot.  I mourn his passing.  He was also treated at University of Chicago, where I am being treated.  He paid it forward for me.

Happy Easter.


Happy Easter.

April 5, 2015

Happy Easter, everybody.  Our day started by going to mass.  The church was full and everybody was in their Sunday’s best.  Christ rose from the dead; a day of renewal.  It is a beautiful spring day too and I am grateful to have come this far.

Last Monday, March 30, I started on my new clinical trial which consisted of two drugs: one to suppress the growth my tumor (given Monday) and the other to “weaponize” my immune system to attack my cancer (given Tuesday).  They gave me a loading doze and I really felt it.  I had chills, nauseated, and was just wasted that Monday night.  I don’t know how I made it back to the hospital Tuesday to receive the immune-therapy drug, but I made it.  Then there was the never ending blood tests Wednesday and Friday.

I have recovered now.  Tomorrow is the second cycle of my treatment which is going to be a lower doze.  It does not matter, I will take whatever they give me.  That’s how it is.  They gave me my schedule all the way to end of May so there will be no travel for me for a while.

That’s ok.  Chicago is beautiful during springtime and there is the lakefront for running.  Unfortunately, I cannot have too much sun because one of the side-effects of this treatment is skin rashes.  The sun aggravates the rashes.  I will survive and adjust.  That is the key to this madness, just take what is given and appreciate your blessings.  It’s all good.  We will see the initial results of this treatment next month when I have my next scan.

Cheer.

Ready and waiting


Ready and waiting.

March 30,2015

II am sitting in the waiting room at the new building waiting to be called.  I have cleared all my test, given a briefing by the research nurse, and my port is accessed.  Today is my first day to received a new clinical trial drug; an immuno-therapy treatment.

Needless to say I am anxious since this is new.  The nurse order anti-nausea drugs and skin rash drugs.  I was told to expect some skin problems like acne (OMG, acne at my age.  Oh well…).  Bring it on.  Today is the chemo drug, tomorrow is the immune boosting drug.

I am already thankful I got this far and entered into this new cutting edge trial.  I try not to put too much expectation on this, after all this is a clinical trial.  We will not know unless we try.  Such is the life of a gerbil on wheels.

Cheers.

It is a matter of believing.


It is a matter of believing.

March 25, 2015

WWe are back from our trip and I am back at University of Chicago hospital for tests: CT scan, blood test, and EKG.  These test are needed for me to start the new critical trial on Monday, March 30.  It will establish a baseline for me before I start the trial, a new immuno-therapy trial.

New trial, new hope.  That is all I can ask for: hope that this next treatment works.  The optimistic way is to say; I believe this next treatment is going to work.  After all it is a matter of believing.

Back in Jerusalem and Rome, there is a lot of that — believing.  At the Church of the Holy Sepulcher, I placed my hands on the stone where Jesus was said to have laid after being brought down from the cross.  Is that really the stone?  Similarly, Golgotha, the biblical name where Jesus was crucified, has three locations depending on which you believe is the true site.  Most believe that the true site is where the Holy Sepulcher church lies, and that is where most people flock and worship.  It is a matter of believing.

In Rome, where the city is replete with history and artifacts even before the time of Jesus, you need every ounce of belief to accept all the things you see.  It was mind boggling.  I was in awe of the magnificence of St. Peter’s Basilica.  I experienced hair-raising moments when I saw the Pope, attended mass at the Basilica, viewed the Sistine Chapel, and when I climbed the Scala Santa on my knees.

All the sights, statues, obelisks, churches, etc., tells the story of man’s tribute to God and his belief.  There is not enough buildings and basilicas to compensate man’s insecurities in his quest for perfection as reflected in the beautiful artworks and paintings. I carry the same inadequacy, that’s why I pray.

Right now I pray, not for lofty offerings or perfection, but the courage to fully believe I will be cured.  It is a matter of believing.  Now, let see what my doctors will tell me.

Cheers.

P.S.  I gave my Jerusalem medal to my friend and PT, JamieM.  I told her she deserve the medal for helping me get back, while I got the memory of running Jerusalem.  Then she asks “so what’s next?”  Huh?

Jerusalem medal

My Jerusalem finisher medal

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