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Hospice Care
February 1, 2016.
I
have been in hospice care since last Monday, January 25, at the in-patient center of Season’s Hospice at Weiss Memorial in Chicago. I tell you it changed my thinking about hospice care. I am sure others surprise to learn I am in hospice care: I am no Superman.  Marathon man does not end up in hospice but I am there now.

I am not minimizing the significance of this stage: it is a way station to the finish line.  It is also a pause where serious questions are asked about quality of life vs. extension of life.

First, let me first correct the impression about hospice and palliative care. It is a place where I am found relief to the agonizing pain from my left rib, a place I get 24-care, and allow me to rest. Everyday I see my doctors and they make quick assessment for any subtle changes. My wife sleeps well beside me knowing each night I get restful sleep.

I get along well with my palliative doctors, Dr. R and Dr. W.  Their care for me comes across as unfiltered and with authentic compassion I have not experienced. It also goes with nurses and staff. I was a mess when they brought me in last Monday. An ambulance transferred from my home to the hospital, delirious, dehydrated, vomiting, and in massive pain: I felt forsaken. With some magic pain cocktails I bounced back after 24-hours.

Tomorrow, if all goes well I will go home and care will continue there in-house this time. I miss my bed.

Hospice care may not be for everybody but I know it is for me. It should nonetheless be considered as a way to find peace and dignity. I have been touched, cared for by many people since I was first diagnosed in March 2008 in Rio de Janeiro, Brazil. I have come a long way since then. Each individual have done their best for me, and left their mark, before being passed to the next worthy person. I am thankful and blessed. I am still here because of you.

The employee lunch room of the Season’s staff is just across my room. I went in there one night and saw all the letters, pictures, and postcards sent my families who have benefited from their care. All expressed their gratitude and appreciation to the care received by their love ones. I will not take a chance and leave it to others to say what I truly feel.  I want you to hear it from me….

I truly appreciate care I received at Season’s. It is not yet over but all I know is I will be well taken cared of until the end.

Wall of thanks.

Wall of thanks.

Cheers.

P.S. A special thanks to KatieH, my angel from Canada. She was the one who admitted me and saw me in my worst (death warmed over). She nursed me back to life.

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Who’s counting?


Who’s counting?

October 8, 2015

We have been through this, right?  Tomorrow will be my sixth CT scan for the year.  Six!  I am a “walking glow in the dark” with so much radiation exposure.  Ha!  You can interpret this in many ways.

Let see:

  1. They could not get it right so they need to do many scans.
  2. They are making money off me and my insurance so they keep on ordering these expensive scan.  Ouch.
  3. They need it to see if I am responding.

All can be correct if you are a cynic.  However, picking number 3 would mean I am not responding to my clinical trial treatments, otherwise they will not keep on checking, right?  Previously, my last scan (5th) was considered good because it says my tumors were stable and I did not get kicked out the trial.

Tomorrow’s scan is another story.  You can’t compare or speculate on the results.  You just hope for the best, then either you jump for joy or sulk and curse, and then move on.  Good scan means I stay on with my current trial; bad means…er, not good.

I wish my cynicism would not take the best of me, but it gets to me sometimes.  It has been a long and continuous journey with no end in sight.  Oh, well.

You better let somebody love you, before it is too late – Desperado, Eagles

 

 

P.S.  This Sunday is the running of the Chicago Marathon.  Good luck, Elizabeth.  You know I will be watching.

 

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No boundaries
September 5, 2015

TThat was the title of the last chapter of the book “My Brief History” by Stephen Hawking, the English theoretical physicist. I love this book. It is short but revealing in his humorous outlook in life and intellectual evolution.

For movie buffs, there is a movie (The Theory of Everything) about his life wherein Eddie Redmayne won an Oscar for best actor. Superb acting.

Hawking is still making news lately. At 73, he is an inspiration. At age 21, he was diagnose with ALS a slow progressing decease and was given two years to live.

“When you are faced with the possibility of an early death, it makes you realize that life is worth living and that there are lots of things you want to do.” Taken from the book.

I relate to that. He is still around and I am still around. He is an intellectual giant, sitting on a wheel chair, fully dependent on others to live, and yet managed to have three kids: all grown. He has written books and if you think he did it typing three words a minute.

He is an inspiration to me. It really shows that there are no boundaries to what you can do. No cancer, no ALS, or physical limitation exist when it comes to life. It is only you who can see beyond your limitation. The trick is not to measure yourself against others. 26.2 miles (42 km) is daunting if you thing about. Or, how about writing a book at two to three words a minute on cosmic black holes. How about several books?

Stories like these moves me. I struggle with my disease and it has been a burden lately. However, there is no point to pity parties so I just move and check off things in my buck list, like going to Alaska.

Alaska:
Tomorrow, my wife and I are cruising to Alaska from Seattle, WA. I am so excited about this. It is like on the eve of our trip to Jerusalem, which was memorable. Jerusalem and Rome was about running and spiritual renewal. Alaska is about the majestic beauty of nature or life. That and grazing the buffet table on board.  All aboard!

Cheers.

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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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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.

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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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Rome:  The Eternal City

March 20, 2015

 

TThis is my first time to Rome but not to Italy.  They call it the Eternal City because there is so much history behind it.  It was the center of the western civilization and at its peak the Roman empire conquered most of Europe.  At that time, it is either you are a Roman or a Greek or a barbarian.

The rise and fall of the Roman empire is well documented and this city has all the evidence of its glory and scars of its past as well.  I came to Rome to continue my spiritual journey and I was not disappointed.  Upon arriving, our hotel managed to get us tickets to the Papal Audience ahead of time.  So I was very excited.

The Papal Audience.

Every Wednesday is the Papal Audience held at St. Peter’s Square.  The morning we attended there were several thousands of people gathered at the square.  The mood was festive.  There were country flags, welcome banners, kids on tour, and many pilgrims.  Before the Pope arrive, they announced all the groups present or were represented in the audience.  There were schools and religious groups from all over the world, and each time when their name was called they cheered.  We sat among high schoolers from Toronto, Canada led by their teacher.

At the appointed time the Pope came out riding in his Pope-mobile.  The crowd surged and stood on their chairs to get a glimpse of him.  I was among them.  Then, I saw him and felt a surge of excitement.  Wow.  I felt like a teenager seeing my idol and I was on the verge of tears.  I could not believe I am in the presence of the Pope.  Everybody was reaching out to him.  He would stop and his security would bring babies or kids to be blessed or kissed.  His path was lined with kids and adults on wheelchairs, all seeking for blessing.

(Note:  I took this video of the Pope giving his blessings.  I was close.)

I am among those seeking his blessings.  I asked for guidance and strength to face all my challenges.  Seeing him gave me comfort.  It was an unbelievable experience.  I was mesmerized in his presence.  He message was about the importance of family.  At the end, he led the prayer for the Our Father (Pater Noster) prayer in Latin.

Rome is full of Christian monuments and statues.  They all reflect tributes of greatness or adoration to God.  There are churches, castles, and symbols that some how relate to a higher being one way or another.  They show the dedication of man to his God.  The statues of saints and angels provide a way to relate our true feelings and confess our inner doubts.  Being among these beautiful masterpieces has given me a way to reflect and appreciate all the blessings I have.  It can be overwhelming.

Cheers.

 

 

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L’Chaim: To Life.

March 10, 2015

First, a piece of good news from last week.  I qualified for a new trial, an immunotherapy trial at that.  Some how during the pre-qualifying EKG test for the PRI parameter was good, as well as my blood test.  So I am in for now.

The doctor explained to me how it works.  This new trial involves two drugs: a chemotherapy agent that suppress the growth of tumor and an immunotherapy agent that boost my immune system at the cell level to attack cancer.  Picture this: two wrestlers, one holding the cancer cell in a grapple hold and the other, pumped up with steroids, beating the sh*t out of the cancer.  Hopefully, it works because the chemo drug to be used is for colon cancer, which fits my profile.

I still have to do a final test (CT scan, EKG and blood work) again before starting the treatment which is scheduled on March 30 and 31.  By then I have been weaned out of my previous trial drug and ready.  I pray I pass.

Speaking of prayers, what better place to pray than in Jerusalem and Rome.  I leave for the Holy Land today and I have been looking forward to this trip.  A new journey of self-discovery and prayers.  I am also going there to run the Jerusalem half marathon on Friday, March 13.    Am I ready?  Hardly.  This is one race I am full of anxiety.  Since being “booted” out the trial, my mind has been filled with tumor growths, things to do, and ITB rehabs resulting in half-hearted training.  My longest run so far was 8 miles on the Alter-G at 60% my full weight.  Normally, you need to hit at least 10 miles with confidence for a decent 13.1 (21k) mile finish at full weight.  We will see.  I don’t do well with hills too and that’s Jerusalem for you.  Full or half, marathons are unforgiving; like life.  You take what is given and you just have to have absolute faith to carry you over.  Faith is what I need.  Peace of mind is what I seek.  Prayer is my mantra.

Here is my prayer.

Lord, I am in your ‘hood.  You have walked the well worn trails of Jerusalem and its country side, or perhaps have tried to out run your Roman captors.  I have come far to run, pray, and seek peace within.  If you are there, just carry me across the finish line this one last time.  I carry a big burden in my chest much like the cross You carried on your shoulders.  I asks you keep me safe so I bc can be with my family (for a while longer).

L’chaim! (To Life!)

 

L'Chaim

Cheers.

P.S.  JamieM (Novacare), this one is for you…and Alice the Alter-G.

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The road to salvation: Jerusalem and Rome

February 8, 2015

TThe road to salvation goes through Jerusalem.  I am going to Jerusalem to run the a half-marathon on March 13.  Sound crazy, but I am.  As a pilgrim, I have never been to Jerusalem.

I have always wanted to go to the Holy Land.  My mom has been there on a pilgrimage tour many years ago with my aunt, so seeing the Holy Land has always been in the back of my mind.  My conviction to go was further strengthen by the uncertainty of living with cancer (see my previous post The Uncertain Furture).  If not now: When?

With the restrictive schedule of my chemo treatments, a window of opportunity is coming mid-March, when I have one-week break from treatment.  But it is not that simple, especially mine.  All the stars have to align to make this pilgrimage run happen.  First, while most marathon races around the world are run on weekends, Saturdays or Sundays, it is not in the Jewish state of Israel.  They have Sabbath, so March 13 falls on Friday or for the superstitious Friday the 13th.  I have treatment on March 11 and have to travel.

Then there is my injured foot, the still recovering left ITB injury, and I have not run outside or on a treadmill since October last year when I fractured my foot.  So why, you may ask, should that stop me from getting to the starting line of a 13.1 mile race in one of most sacred places in the world.  What have I got to lose? I already got cancer in my lungs, have lost half my liver and a gallbladder; I have an embolized spleen, and expect to change clinical trails soon to stop the trending growth of my lung nodules.  WTF.

I called my clinical trial nurse, LindaJ to “beg” and “pleaded” my insane case to go on a “holy” pilgrimage.

The company (that sponsors the trial) said it will only allow a one-day adjustment.  You can have your treatment one-day ahead.”  Done.  I’ll take it.  Thank you.

Next, I called my physical therapist JamieM of Novacare and told her of my idea of running the Jeruasalem Half.

What? Are you crazy?  That is so cool!  Do you realize we got less than six-weeks to work with?”  She did not exactly boosted by confidence.  I told her it is just one my moment of weakness and succumb to a dumb-ass idea, but I need help.  

We got to get you quickly on the Alter-G.”  Alter what?  And that we did.  Wow!  I am so in love with that machine I named her Alice.  You would not believe the immediate endorphin rush I got the first time I use it; especially after so many months of not running.  I felt so alive.  Oh, Alice I love you.

Since I am off on a pilgrimage or on the road to salvation, I might as well complete it by going to Rome to see the Pope on the way back.  If I don’t get to see the Pope, I would like to attend Sunday mass at St. Peter’s Basilica.  Like Jerusalem, it will be my first time to see Rome (but not Italy).  Also, like Jerusalem they will be running the Rome marathon on the weekend (March 22) my wife and I will be there.

Hmmm?  Is this a sign for me?  Are the stars aligning again?

Shalom.  Ciao.

P.S. My wife will be running the 10K in Jerusalem too.  This weekend we did 5.5 miles at the lakefront and it was beautiful.

Alter G running1

Getting high on life!

 

Training for Jerusalem Half on my new love, Alice.

Training for Jerusalem Half on my new love, Alice.

Beautiful weekend run.  We did 5.5 miles.

Beautiful weekend run. We did 5.5 miles.

 

 

 

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Round 15: The year in review

December 31, 2014

The last day of the year I am at the infusion center of UofC for treatment.  One last hurrah for the year, and then another one next week to start the new year.  I am sitting here again at the waiting room and it has not changed: Patients still waiting for their treatment or have their vital signs checked.  It will be the same even if it is the start of the new year, 2015.

As they got my vital sign, I had to smile because my weight had increased: plus three pounds.  Ooopps.  Must be all that Christmas cookies.  Ho…ho…ho!  Oh well, I will work that out at the gym.  Also, it will soon be the start of the running season again.

2014 was a good year for me.  For cancer survivors, each year is a good year but 2014 was also memorable.  Let’s see:

  • February.  Mom was with me until she went back to Manila with my brother, Raul.  She got to spend Valentines with us.
  • April.  My wife and I went to Kona, Hawaii for the first time and had a blast.  I still dream of going back.
  • June.  Had a successful emobolization of my spleen at MD Anderson Houston, TX.  This corrected my low platelet count issue.
  • July.  I got accepted to the clinical trial at UofC and my tumor so far is stable
  • October.  Fractured my right foot while training for the NYC marathon.  That sucks.  I ended up deferring the marathon for 2015.
  • November.  Had an unscheduled visit to Manila to see Mom and family.  I am very thankful for this opportunity.
  • December.  Completed the Simbang Gabi nine-day novena mass.  Also, I spent a few days with my sister in Canada with my brother Raul again.

Listing all these events made me feel so blessed and thankful.  2015 starts tomorrow and I look forward to whatever it has to offer for me.

Happy New Year!

Cheers.

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