Memorial Day

Memorial Day

May 26, 2014

oday is Memorial Day holiday here in the US.  It commemorates the continued sacrifice of soldiers and veterans.  My wife and I started our holiday weekend by running the Soldier Field 10 miler last Saturday (Note: Soldier Field is a football stadium and home to the Chicago Bears).
This is my second time to run this race; the first (2011) one I cheated and did not even run the whole 10 miles.  I just had my treatment that week and was in no condition to run, so I just walked the course and turned back when I got tired.  This year I made it to the starting line and completed the whole 10 miles (2:15).  I felt good after and it boosted my confidence.  It is like breaking a psychological barrier since this is my longest run for this year.  From here on, it will be double-digit miles and the training gets harder.  All for NYC marathon this November.

November is still far away but it is a goal I have set for myself.  I don’t even know if I will be at the starting line, all I know I need to do something today to to be ready for tomorrow.  They say sports, any sport, is a metaphor for life.  It reflects all the challenges you encounter in life and lets you experience the rewards of your righteous efforts.  That’s what running gives me: blissful reward for my effort.  Unfortunately, running and my cancer share the same path as well; it is part of me.  I roll with each good run or any positive news about my cancer and struggle when I have a bad run or when things are complicated.

My world is a hodgepodge miles, platelet count, pace time, blood tests, etc.  I understand all these numbers, they are my life signals.  Lately, my life signals are showing positive: My platelet count is now 70K up from 55K and my tumor count is down to 9 from a high of 11.8 a month ago.  I am breaking barriers here too.  I am happy with this fragile progress but there is still work to be done.  I have to earn each day (or mile) towards the goal of one day be cancer-free.

What’s making it work this time?  Diet, exercise, and prayers; the same formula available to everybody.  I also think the difference is how to make it work and the effort you put in it.  When it works you are given a medal as a reward and if you are lucky, it will be given by a uniformed Marine .

At Soldier Field getting our medals.

Cheers

P.S.  Next race is North Shore Half Marathon on June 1.

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Like an unemployed bum.

Like an unemployed bum.

May 17, 2014

ife as a retired super hero is boring.  Nobody to save or rescue.  It is like being an unemployed bum just waiting for the right opportunity to come.  It has given me time to think about my low platelet count and consider my next move.

The low blood platelet count is the result of taking too many chemos over the past six years, I was told.  I have taken them in many different combination and dosage.  Also, it is  the reason why my cancer is no longer responding to traditional chemo regiments of FOLFIRI, Avastin, FOLFOX, etc.; they have become resistant to chemo.

The low platelet is a symptom of other possible problems lurking in the background.  Problems in the spleen, which is acts as a blood filter, or bone marrow  ,which produces the platelets among others.

A recent test showed it is not the spleen.  This was determined by an ultra-sound of the spleen last week.  The test showed my spleen was slightly enlarge but functioning and of no concern.  Which brings us now to my bone marrow.  Ahhh…..  I wish I don’t have to deal with this problem but it has been bothering me.  I can’t shake it off.  I am a magnet for problems when it comes to my cancer.  Each time I turn I am presented with another obstacle.  I cannot seem to outrun this thing.

Here is my dilemma: I need to cure my cancer.  I cannot go back to my old chemo regiment because it is now ineffective, so I go to my only choice of using experimental drugs.  I get accepted to a promising clinical trial program, but I fail the platelet count criteria to get started.  I isolate the probable cause of my low platelet count and it points to bone marrow problems.  I look at the associated challenges to fix my bone marrow problem and I see bone marrow transplant, donor searches, hospitalization, etc.  Argh…  WTF!

I could be overblowing this thing and I can almost hear the unison advise of taking things one-day-at-a-time.  Or have faith or be strong or whatever.  Well, I have taken those things to heart.  Everyday, I try to make the most of my day for the pass six long years.  Each day requires a lot of effort, tolerance, temperament, faith, and hope; while others take things for granted.

However, time is against me and it is such a precious commodity to waste.  I have been off chemo for a few months to heal my body but my cancer cells are still active.  It will just be a matter of time before they make their presence known.  In the meantime, I feel good and most people who see me say the same.  My miles are up, I have a 10-mile race next weekend, on track to do a half-marathon (13.1 miles) in June, and probably hit 15-18 miles in July.  All this may change once I face up to the realities of my bone marrow.

That is a day of an unemployed super hero.

Cheers.

P.S.  I had a lunch today with my retired-mentor, BobP, who flew in to do some fishing in Wisconsin.  It was good seeing him.  It made me forget things.  Tomorrow is long run day: 9 or 10 miles.

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Life as a super hero

Life as a super hero.
May 10 2014

y career as a super-hero ended in a flash.  I had donned my mask for fear of being identified, tied my newly dry-cleaned cape for effect, and held my shining armor as the accessory to compliment my outfit.  Then, walked into the room.  I am Super Bo.  I sow fear in the heart of the Karkanikos (cancer), the evil enemy of the world.

I waited for the emissary of Karkinikos in this small holding cell looks like a medical office.  The mystery of Karkinikos is still to be revealed.  Nobody has seen him but he kills with deadly stealth.  But, I am here now.  I have come this far and this thing will now and here!  With a chest-thumping move, I curse you to hell, Karkinikos.

The room they are holding me was sterile clean.  It has monitors and air valves in the wall that I think will be used to torture me into submission.  I wish my super-partner was not with me to witness the mess I am going to do with Karkinos’s emissary after I am through with them.  There in the middle of the room is a medieval padded table made to look like an examination table.  Ha!  They will not be able to hold me in this room much less examine the source of my powers.  I am Super Bo.

My resolve is strong!

Then she enters, not intimidated, wearing a seemingly innocent lab coat designed to throw me off.  She stares back at me with a menacing stethoscope drape across her neck like a whip ready to unleash her wrath at me.

“Mr. Alvarez, my name is Dr. G, a fellow at the hospital, and I work with Dr. S., the principal researcher of your clinical study.  We got the results of your blood test.  Your platelet count did not significantly go up and you did not meet the criteria for the trial.”

 

I pass out….

Oh…oh.  What happened, Super Bo?

And that was how my career as a super hero and lab rat was ended.  My mission was suppose to save other people with cancer by undergoing clinical trials.  I was going to make the ultimate sacrifice for the good of mankind, but I was robbed of the opportunity.  We were talking medical history, Pulitzer, book tour…Oprah.  All gone.  Kaput.

My platelet count did not get a boost from the big dose of steroids I had.  It did not work.  It may also mean that there might be other underlying cause.

The clinical trials require I have a blood platelet count of at least 1ooK.  It is for safety and buffer reason.  After the boost, I currently at 60K level.  If we started my chemo trials at my current platelet level and I start to loose platelets, I will have little buffer of safety.  At 30K and below, I will be prone to bleeding and bruises.

Time to lace up the running shoes, re-group, and map out the next step.

Cheers.

 

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A different world: Part 2 of 2

A different world: Part 2 of 2
May 5, 2014

he easy part was signing the document.  I did not realize that to get the trial started was the harder part.  To get started I have to do a blood test and EKG.  Sounds, easy.  I thought so until they saw my low blood platelet count and slight EKG irregularity.

I had my blood test another blood test and EKG done last Friday, and the results were the same: Platelet is 60K (normal is above 130) and the EKG, still slightly elevated.  My blood platelet problems has been an ongoing thing since last year but we did not address it due to other concerns during my treatment.  Beside I was asymtomatic, meaning I showed no signs of bleeding, nose bleeds or noticeable bruisings.  I should have recovered by now being off chemo since end of February, physically active and  practically a vegetarian now.

At the moment, I cannot do anything about my EKG for the meantime but I am currently taking high dose steroids to correct my low blood platelet count caused by ITP.  I should be done with it by tomorrow, then another blood test to verify results, and a discussion with my clinical trial doctors on Wednesday (May 7).

Needless to say, I am disappointed.  Call it clinically interrupted.

My choices are limited and I can only control so much of what is happening around me.  I should have started the chemo trials today, instead I have to wait for the verdict.  I can understand clinical trials are different, it is after all a controlled study where everything has to be the same.  However, this can be mutually beneficial if they see it that way.  To them it is a study, to me it can be a life changing event.

Oh well, why bother.  I am not going let a beautiful 55F (12C) day go to waste by worrying.  Instead, my wife and I just turned it around and completed 7 miles at the lakefront.  Bam!  A no chemo day turned beautiful.  How was your day?

Cheers.

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