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Archive for May, 2015


Tidying things up.

May 30, 2015

I am on a mission to tidy up things and complete unfinished business.  I am inspired by the book The Life Changing Magic of Tidying up by Marie Kondo of Japan.  If you have ever been to Japan, the Japanese are the most tidiest, if not most efficient, people I know.  I love Japan, especially sumo.

One noticeable thing about Japan is their small living condition.  A living room used during the day functions as a bedroom at night.  Tatami beds are put away after use and the area is tidy again.  I remember a Japanese colleague visiting the US for work was blown away by the Marriott Residence Inn rooms we were given.

“Bo-san (gramatically incorrect in Japanese).  They gave me a big room.  My apartment is just the size of the kitchen” he said when we saw each other for breakfast.  I thought it was funny.  I was true but it was tidy.

So I find it ironic to read something on tidiness coming from a Japanese when Americans tend to have bigger houses therefore prone to clutter.  To me the book was useful in further simplifying my life, a.k.a cleaning up my stuff so the wife will not have to deal with it when the time comes.

This is a difficult topic around the house and I am not one who shy away from discussing it.  I am hopeful of finding a cure for my cancer at the same time I am realistic.  I pray every morning for another day given, then I turn around and write instructions on how to settle things.  That’s life living with cancer.  We live in two worlds: the hopeful one and the real one.  The real one is difficult to accept because I still, at times, ask “why”.  I cannot fully understand this disease and yet it has taught me many things.

I am sure many have learned many things from me.  I receive many encouragement and prayers which boost my spirits.  I am grateful for them.  Lately, I have been consulting doctors again regarding the recurrence of cancer to my liver, aside from the existing ones in my lungs.  Each time I see a new doctor I have to relate my medical history.  I started compiling all my medical records in a binder now I have a box filled with all my charts, bands, blood tests, scans, images, contacts, etc.  Doctors get impress once they see my collection.  They are tagged and highlighted.  Then I tell them about my blog.

But that does not change things.  The answer I seek is often not there and the decisions I am force to make does not get easier.  Do I go for a cyberknife procedure to my liver or move on to the next clinical trial?  There is always something to decide…and tidy up.

Growing medical records

Growing medical records

 

Running a 10 miler.

My happy place.  Last May 23, I ran the Soldier Field 10 Miler in 2:22.  I was happy I finished.  Each time I finish a race it gives me confidence that I have somehow put one over my cancer.  I finished with cancer growing in my lungs and now in my liver.  Three more miles and that’s a half marathon.  In fact I started looking for one and may just sign up on a whim.

2015 Soldier Field 10 mile finish.  I got the medal.

2015 Soldier Field 10 mile finish. I got the medal.

Cheers.

P.S.  Going to NY for business next week.  I am on a “wash out” period to remove toxins from the previous trial before starting a new one: my third if ever.

 

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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.

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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.

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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.

 

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