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Living in hope.


Living in hope.
July 5, 2015

In the US it is the 4th of July weekend. There are parades, barbecues, fireworks, and holiday sale.

We celebrated our holiday by watching fireworks with Ethan, our grandson. It was his first fireworks so it was an experience for him, and for us. We thought he will be scared of the loud “booms” since we were close to feel them, but he enjoyed.

This weekend also marks one week since I have completed the first cycle of my chemo trials: The chemo come in pill form. I started last June 13, completed the two week cycle, and then two weeks off. I start the second cycle on July 13.

So far the side-effects have been limited to nausea, constipation, and tiredness. To keep active, I am limited to walking. Can’t run because I get tired easily.

With summertime here, I miss running at the lakefront. I equate summer to marathon training and it is such a beautiful feeling. You get to enjoy the cool lake breeze, the sun, and seeing other runners. I hope someday I will be able to do it again. Hope is what keeps me going.

With one cycle complete, I need to do another cycle (July 13), then a scan. It is during that time when faith and hope is going to be tested again. In the meantime, I will enjoy my summer and continue to live in hope.

Happy 4th of July

Happy 4th of July

Cheers.


 

 

Third time a charm: A new clinical trial

June 14, 2015

TTomorrow I start my new clinical trial, my third.  Like before I have guarded optimism when starting new treatments.  I would like them to work on me but…  I think that is the point of a trial: to find out.  But each disappointment takes a lot of energy out of me.

I wish they would give out medals each time I finish a trial like in marathons, at least I have something to show for it.  What I have are images, CT and PET scan images, of my completion and…defeat.  (Sorry, maybe next time!)  But as the cliche goes, it is not about winning but how you finish.  That is how my wife would say it: I am still here and standing up.

If it was about winning nobody would even try to run marathons or pursue any challenge.  It is about the struggle, as in “the struggle is real.” – meme.  Cancer is real.  It is a representation of life: the other half of life.  I have learned to see and live my life in constant struggle between life and cancer.  

Today, we went to Holy Hill, WI to pray, give thanks, and hope.  It is the last item in my preparation checklist.  Since my last treatment (May 13) I have been busy taking advantage of the mandatory four-week washout period between clinical trials.  During the break I was able to:

  • Run the Soldier Field 10 mile race on May 23.
  • Visit colleagues in New York for a week.
  • Meet with Cyberknife specialists who gave me hope that they can  address the large tumors in my lungs should my next clinical trial does not work.  It is not a cure but a containment strategy.
  • Pass my pre-clinical trial checkup with my platelets holding now at 256 (100 is the qualifying count) but don’t ask about my CEA level or tumor count.
  • Order anti-nausea pills since this is the expected side-effect of the new drug.
  • Significantly up my total miles for this last week to 30, as if I was in full training.  

I have done what I can in preparation for tomorrow.  The only thing left is to do my pre-chemo ritual: an early morning workout at the gym before going to the hospital.  This new trial will be in pill form instead of infusion.  I have to take the pills everyday for two-weeks, except on weekend, then I rest for two-weeks.  This is my second time to take chemo pills, the prior one was to “bridge” between treatments while on business travel and running Berlin September 2012. The plan for this clinical trial is to do two cycles or two months treatment at least, then scan.

That’s their plan.  My plan is to keep running, avoid fatty foods, up my fiber intake i.e. hemp protein, edemame, kale or fruit smoothie, etc., rest as needed, and fully hydrate.  Stay the course and finish standing up.  I know there will challenging sleepless nights when chills and other side-effects happen but you are there.  

Cheers.

Tidying things up.


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.

 

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.

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