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It is official: I am out.


It is official:  I am out.

March 1, 2015

I

I am officially out of my current clinical trial because they have determined I am (again) no longer responding to the treatment.  I have exceeded the growth threshold.

Now, we look for another one that I can enter.  Needless to say this journey is just frustrating.  I have traveled far and long with this cancer.  I have had victories and defeats, lately, it is more of the later.

I will meet with my doctors again this week to discuss my other clinical trial option.  We have stopped my treatments and will not expect to have one in the next four weeks.  This is to wash out the trial drug in my system before entering a new trial.

I should be rejoicing, especially since they are stopping my chemo.  You have heard me say before: I hate chemo.  Now it stopped it feels weird, awkward, like a break-up.  What do you say after?  It is as if somebody took my security blanket.  I am lost.  I am hanging untethered for the next four weeks. Hopefully, I find the answer in Jerusalem and Rome, if not peace.

Cheers.

 

 

Lenten Season: Journey to Calgary


Lenten Season: Journey to Calgary

February 18, 2015

TToday is Ash Wednesday, the officially start of the Lenten season for Catholics.  Yesterday was Fat Tuesday, pig-out day before the fasting starts, and it is Mardi Gras time in New Orleans and Rio de Janeiro.  My office-friend, Mary AnnG, told me she was going to go to her church’s Shrove Tuesday or Pancake Day.  That should be fun.

Looking back to last year’s Lenten season I marked it by attempting to become a vegan.  The experiment for Lent was to give up my favorite Japanese ramen but along the way ended up as a vegetarian.  I already gave up eating beef and pork long time ago, then I took out poultry meat and its associated products, and then the hardest was to give up because it was my favorite: fish and seafood.  As vegetarian I made an exception to cheese because of runner’s power food, pizza. Then of course, it would not hurt to indulgence once in a while on brie, camembert, and blue cheese.  Yum.

The intention then was to prune and grow.  Give up something to make room for new and better things.

Better things: it is relative.  It is anchored on what each of us value most.  My journey  with cancer puts me in a different category that only fellow cancer survivors would understand.  However, I must acknowledge I have bouts of “buyer’s remorse” or episodes of regrets.  I gave up many things, at times reluctantly but mostly willingly, for a long shot, a chance, a moment, to live life without cancer.  Then, when it does not workout as I expect it, I sulk.

Remind me again: Why I did gave up steak or fish or coffee or half a liver for what?”

Looking ahead, I am looking forward to our pilgrimage trip to Jerusalem and Rome.  It is not only for the chance to run a half marathon in Jerusalem, it is more solemn than that.  The trip coincides with my 7th year anniversary of being diagnose with cancer.  Thus, for this Lent I am not going to pledge or give up anything to grow; technically, I have been fasting by not eating meat for a long time now.

“You got to have an intention for your practice”, my yoga teachers would say.

For this Lent, the intention is to accept the cross I am asked to carry.  Do the 14 Station of the Cross or the via Dolorosa in Jerusalem by carrying my cross all the way to Calgary (Golgotha).  I want to experience the struggle of Jesus at the Garden of Gethsemane: Why was Jesus asked to carry the cross to certain death?  Why am I being asked this?  Perhaps after understanding it, I can shed off my agnostic feeling towards religion.  I am not perfect but I am being asked to do something I cannot fully comprehend or accept when others live fully without remorse.  It is not bitterness that I feel, perhaps anger, but in the end it just does not compute.

Cheers.

P.S. Today at the hospital, a chaplain came to my room to give me ashes on my forehead.  An ashen cross marks my forehead to start my Lenten journey.  Good luck! – a common meaningful greeting among cancer patients and survivors.


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.

 

 

 

The uncertain future


The uncertain future.
January 25, 2014

Tomorrow is certainly going to come but sometimes I am not certain I will be there.  The promise of tomorrow is always just hours away and there is certainty in its arrival. With such certainty and hope I find myself lost at times.

 My tumor is active again, specifically the right one in my lung: a stubborn one.  For now, it is not enough for me to get bumped off my current clinical trial its growth is still within the 20% limit.  Besides the other nodule, the one on the left, exhibited minimal decrease in size, so for now I am considered “stable.”  Whew.

Stable is a temporary state.  It is not permanent.  It is more like a goal (like finding stability) that is very hard to achieve.  When threatened, there is uncertainty and anxiety: not fun.

My state of stability was recently shaken when my clinical trial doctors broached the subject of other clinical trials that is open for me, and those that are coming down the pipeline.  I can tell right away the muted concern they have no matter how delicately things are explained to me.  I know.  So the net is, it is a matter of “when” I will move not “if” I will move.

Hope is a very precious commodity when stability is challenge.  I have been in this situation before.  The easy part is the move, it is what changes or what you give up as part of the change that is harder to accept.

When to move?  Hey, I am a gerbil spinning on a wheel stuck.  Where do you think I am going?  I am stuck and unbalanced.

Cheers.

P.S.  Wednesday, January 28, is next treatment.


2015: Resolutions and absolutions.
January 16, 2015
So far 2015 is starting out good.  There is always great expectations for new beginnings.  It normally begins with resolutions and absolutions for me.

For starters, I absolve or renounce the habit of counting how chemo treatments I have received (one to start 2015 last January 7th…sorry!)  I think this is a force of habit from my work.  I deal with data (lots of data), risks, likelihood, and impact.  That decisions should be based on data to minimize bias.  But sometimes you just have to throw away these things because it restricts your ability to…live.

I just had my CT scan today.  I normally get anxious for the results of my scan: good or bad.  There was a time I would hold my breathe when I see the caller id is from the office of my oncologist or radiologist.  Now, I get it by email that reads:
     “Scan looks stable.  One nodule increased and one decreased.  Dr. S said he would keep you on.”
That summarizes my world.  I am like a gerbil running on a wheel going nowhere.  I just keep on running until I am told to get off and move to another wheel (trial).  So why bother counting how many treatments I have received: it does not matter.  What matter is you are running on the wheel.  In fact, I would continue on any wheel they give me: big or small.

My wife notices my frustration of being stuck.
“Your nodules are stable and you are here with us.”  she admonishes.
Yes.  I am surrounded by people who love me.  There should not be any “if’s” and “but’s” about this.  That is why I am running on a wheel-to-nowhere.  Is there anything beyond love?  Thus, for 2015 I resolve to live beyond the numbers that define my cancer.  I resolve to fully embrace my new normal lifestyle and fully enjoy the experience of running round-and-round “the wheel.”I would still continue to keep fit, practice mindfulness, pray, help others, set goals, run, and have fun.  Does it matter how many chemo treatments I have?  Does it matter how many miles I have run?  There will be more treatments as much there are paths to run.  Just go and enjoy.

Cheers.

Round 15: The year in review


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.

Simbang Gabi…eh?


Simbang Gabi…eh?

December 23, 2014.

Mississauga, Ontario, Canada

The Filipino community here did not disappoint me.  They have their own Simbang Gabi celebration, so the streak is still on.  My wife and I attended the service at St. Peter’s Catholic Church (more like a chapel), Mississauga, Ont.  The church is small and very old, but cozy enough to seat about 100 worshipers.

Big or small it is the worshippers that matters.  The old church might creak and moan with its wooden infrastructure, but it still brings out the best in everybody, especially at Christmas time.  To me, Simbang Gabi masses always brings back memories of celebrating it back home.  After mass, there are street vendors outside the church selling “puto bumbong” or “bibingka”.  These delicacies are best eaten with hot chocolate made from pure cocoa called “tablea.”  Ah…these are the simple delights of waking up early, going to mass, and eating warm treats that nourishes the body and soul.

Here in Mississauga, as in Chicago, there is a fellowship gathering after mass.  And when Filipinos gather you do not go home hungry.  Sometime you go home with even more food, I kid you not.  So after mass we went to the basement of the church and there you see a full display of food all brought by the parishioners.  Wow.  There was pancit (fried noodles), lumpia (spring rolls), fried rice, egado (pork dish), puto (rice dish), rellenong bangus (stuffed fish), etc.  These Filipino-Canadians have put the after-Simbang-Gabi fellowship in Chicago to shame.  They even have Indian dishes like chicken biryani and samosa brought by fellow Indian Catholics.  Moreover, for some of the home-cooked Filipino foods they serve here, it is only worthy for special occasions or small gatherings because they are difficult to prepare or expensive.  I love it here.

I am all done.  I have completed the nine-day novena mass.  Tomorrow, I head back to Chicago and celebrate it with my family.  As my advent journey closes, I am very thankful for this memorable experience.  It has brought back memories of my youth and fun times with my cousins, singing Filipino Christmas carols again, seeing many churches, meeting new friends, and reflecting more on the importance of the blessing I have.  It would have been an ordinary, rushed, and commercialized Christmas for me.  Instead, it has turned to a beautiful experience.

I am fortunate to experience all this.  I also have not forgotten those who are struggling with cancer, especially my recently diagnosed friend Helen, or those still at the infusion center of UofC.  My advent journey has taken me to place I have never been to, made me experience new things, renewed my faith, and gave me additional pounds.  Ha!

Maligayang Pasko (Merry Christmas)

December 21 – St. Peter’s Church at 7:00 pm.  Done.

December 22 – St. Peter’s Church at 7:oo pm.  Done

December 23 – St. Joan of Arc at 7:00 pm.  Done.

Lots of food at St. Peter's.  Yum.

Lots of food at St. Peter’s. Yum.

Two rows of food at St. Joan of Arc

Two rows of food at St. Joan of Arc

Cheers.

Footnote:  The “eh?” expression is very common among Canadians.  They seem to say it every other sentence.  Back to Chicago tomorrow for Christmas eve preparation.

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