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Life does not stop


Life does not stop.
April 6, 2014

I still don’t have any news if I am going to be accepted in the University of Chicago Medicine clinical trials.  It has been a couple of weeks now.  While waiting I have been keeping fit.

Yesterday, my wife and I did 5.7 miles and the previous week we did the 8K (5 miles) Shamrock Shuffle with my oncologist, Dr. M.  He was such a trooper, inspite of having little or no training, he completed the race.  He was tempting me to take a shortcut at the halfway point,  but I just laugh it off.  (“Let’s take a cab.  I’ll pay.”)  LOL.  I am sure he was sore after that experience.

I am totally amaze at the new experience I am having as I am getting weaned off my chemo toxins.  The food taste better, the air is fresher, and life is much sweeter.  As I gain my strength back I am able to run longer too.  It feels like I am putting distance between me and my cancer.

But alas, that may not be so.  Last Thursday, I went back to the hospital to have my chemo port flushed (it gets clogged when not in use).  I also had my blood test.  My CEA level (tumor count) still show elevated and it moved a few points again.  Nothing significant, but it is still a reminder that I am not cured.

Lift does not stop whether you have cancer or not.  It works the same for any other disease or problems.  Since life does not stop, it is best just to get up, move, and make the most of it.  Doing nothing is not an option for me.  There are new things to do and many things to learn for cancer to stop me.  It may slow me down, but it will not take away my thirst for what life has to offer.

 

Quinoa pasta with garlic and vege sauteed in olive oil.  Bam!

Quinoa pasta with garlic and vege sauteed in olive oil. Bam!

Cheers.

P.S.  I would like to thank my friend and cancer-survivor, Noreen, for treating my IT band problem.  I love her.  Lastly, Palm Sunday is coming up.  Can you say “Aloha?”

Going vegan.


Going vegan.
March 26, 2014

It all started as a Lenten challenge: on Ash Wednesday to be exact.  The idea was to give up something for the Lenten season, as a sacrifice or offering.  I love ramen and my wife would be easily tempted with tonkatsu (breaded chicken breast) from our favorite Japanese place, Santouka at Mitsuwa market place.  So that will be our sacrifice.  Prune and grow.

My daughter, Talia, heard about our plans and decided to join.

 “For Lent, I will just eat vegan food” she declared.  Wow.

She does not eat red meat like me but she love cheese.  To go vegan, you have to give up all dairy, animal, and seafood products.  Only plant-based food products, like beans, nuts, soy, grains, etc., are allowed.  For bread or any bakery products, they must not contain eggs or cows milk.  What?  So you can imagine how strict of a diet it is but others have done it.  It is a lifestyle change.

I thought I join her on her journey.  I was already going in that direction before when I started giving up red meat and substituting tofu.  I prefer eating salads and vegetables already, but I still was eating eggs and cheese.  The no red-meat diet helps me during chemo when I get constipated or have my vomit episodes.  I had to strike a balance on eating nutritious food to sustain me and comfort food (ahem…like ramen).

Nonetheless, I saw the vegan lifestyle as an opportunity.  For one, it will be only for the Lenten season (I think) and it would further strengthen my immune system.  Remember my next challenge is an immuno-theraby treatment using clinical trial drugs to fight my cancer.  So I am off on my new adventure.

The first step is buying all these exotic sounding food, like chia, spelt bread, quinoa, almond milk, etc.  My new friend now is Trader Joe’s or TJ.  I was surprise that switching to vegan food was not too difficult, perhaps because of the new taste.  I have now tried or switched to: eating spelt bread, steel-cut quinoa oat meal (this is good) for breakfast, edemame nuggets (looks and taste like chicken nuggets), tofu sausage, soy-based cheddar cheese (great for grilled cheese sandwich), and awesome vegan desserts.  I even made myself scrambled tofu for breakfast and dinner.  Bam!  Look!

 

Scramble tofu with tomato, onions, sweet baby bell peppers, and parsley.  Yummy!

Scrambled tofu with tomato, onions, sweet baby bell peppers, and parsley. Yummy!

Now, let me clarify things first about the vegan lifestyle.  You can still gain weight eating vegan food, especially with their wicked desserts.  While healthy, vegan food does not automatically equate to organic food, vegan just means no animal products.  Beans and nuts, depending on portion size, has high caloric content.  So there’s vegan food and organic food: two different things.  For me, if it is a choice between vegan food and organic food in the grocery aisle, I go for organic.  I don’t need more chemicals or toxins in by body.
The point is to stay healthy and strengthen my immune system, and I would do anything to stay healthy.  Bye…bye…Santouka ramen, hello Chicago Diner.  OMG!

Cheers

P.S.  This Sunday is the 8K Chicago Shamrock Shuffle race.  I will be running it again with my wife and my oncologist.  Dr. M is already getting stressed out for he has not run this far, so it will be fun.  The forecast is 60F and sunny.  Perfect.  I love life.

 

Immuno…what?


Immuo…what?
March 16, 2014

LLast week I had my appointment at University of Chicago (UofC) Medicine.  It was very promising.  I also learned something new about my cancer and family history.  From the results of my genetic testing, they have identified a mutated gene called RET that I may have inherited.

This mutated RET is also the cause for Hirschsprung disease that my first-cousin, Tess, may have inherited when she was born.  I remember she was operated, they took out a couple of inches of her large intestine.  I was a kid back then and would just remember seeing the stitching scars in her belly when we go swimming.  So I am blessed with this mutated gene, now what?

How about immuno-therapy?  Say what…????  The way Dr. R explained it, you use the person’s immune system to fight cancer.  Like it or not, each of us have cancer cells.  Some or most of us are lucky, due to good genes and healthy living, our immune system is able to keep the cancer cells in check.  In my case, I inherited a cancer-triggering or mutated RET gene.  So this misbehaving gene is blocking my immune system from doing its work of neutralizing my cancer.  Such a troublemaker!

Previously, all my treatments or chemotherapies were intended to poison the cancer using all sorts of drug in different doses and combination; I have taken a lot in the past six years.  Chemo has its benefits but it is non-discriminate.  It kills cancer cells as well as good cells.  Chemo has also kept my cancer at bay but my cancer is no longer responding.

We are now switching strategies.  The plan is to target my mutated RET gene that is blocking my immune system from doing its work.  The way Dr. R explained it, who is an American football fan:

Think of the Running Back as your immune system which is being blocked by a Tackle, the RET.  We neutralize the Tackle so the Running Back can score.

Sorry, Doc.  I am not too much of fan of football.  Soccer, especially English soccer, is my game but I get it.  Spike the drink of the RET goalie so my boy Luis Suarez (of Liverpool) can score.  Go Liverpool!

Currently, they have a Phase 1 trial that can fit me.  However, the trial is for melanoma but it addresses the same genetic RET mutation.  We need to get approval from the manufacturer, Bristol Meyer Squib, to use the trial drugs: Nivolumab and Lirilumab for the nodules in my lungs.  Once we have the approval, I am off to my “olympic” trials.  For now, we wait.

Cheers.

P.S.  My wife and I did our runs doing a little bit over three miles.  Will get there.  The goal for now is the 8k Shamrock Shuffle race on March 30.  Happy St. Patrick’s Day!

A beautiful day for a run.


A beautiful day for a run.
March 9, 2014

TThe lake was still frozen.  The morning air was cold at 26F (-3C) but the sun was out.  The sky was blue so I just got to go out and run.  It is my first-time to run outside and I was excited.  I have been exercising (spinning and cross-training) indoor but when there is an opportunity to run outside I take advantage.  Life is beautiful.

As always my wife, training partner, and nurse was with me to make sure nothing happens to me.  Lucky huh?  It was wonderful to be out there.  Trails were clean.  There were a few runners, but mostly it was peaceful.  I run without music.  It is so soothing to hear the steady cadence of my foot as it hit the ground.  I got lost in the moment.  The air was brisk and very refreshing to my cancer-riddled lungs.

I wonder too how the 14 nodules in my lungs still enable me to run.  I’ll take what is given.  That’s three miles at 13 min-mile.  Done.  What a wonderful after glow feeling.  Intoxicating.  Only 23 more miles to go.

Frozen

Frozen

CT Scan Result and Cardinal George.
I had my CT scan last Thursday.  I did not expect much of it since my CEA tumor count was trending up.  Depending on your outlook; the good news is that the number of nodules is stable, still 14, or you can view at as three months of chemo which did not even kill one.  There was also a slight increase in size in a few of the nodules.  The bonus was there was no other metastasis to other organs.

I try not to read too much to news like this.  I can’t change it.  I just accept it and move on.  But there are certain news that stops me, like the cancer relapse of Cardinal Francis George  Archbishop of Chicago.  I can relate to his journey.  It is his third time also and he will have to undergo aggressive chemotherapy.  He is the leader of our church and helps many lost souls.  That is so wrong.

Cancer changes you, and for it to touch (again) a man of great conviction and belief is a humbling experience.  He has the courage to ask for prayers when I look up to him to pray for me.  Also, I wish I have the same ounce of courage he has.  His braveness and acceptance of his fate is reflected in his word that I dare not even whisper.

“While I am not experiencing symptoms of cancer at this time, this is a difficult form of the disease, and it will most probably eventually be the cause of my death.” —Cardinal George.

God bless out, Cardinal George.

Cheers.

P.S. I meet with University of Chicago doctors this week to discuss chemo trials.

Just get me there.


Just get me there.
March 1, 2014

LLife and death decisions are easy.  They are binary.  So when the doctor’s tell me I have to do chemo, I reluctantly do it or I die.  That’s the way I see things.  Of course, others may choose to let go because they do not have something or someone to live for.

There are decisions that are hard because they are personal.  Sending my mother home back to the Philippines is one of those hard decisions.  She left two weeks ago and the house is not the same: It is quiet.  I sent her home because, if anything happens to me, I don’t want her to see the end.  I know about mother’s instinct and all that, but I will be helpless to protect her.  It is much easier to carry on not worrying about her when the day comes.

I only want good memories for her to remember me.  I have plenty to keep me going, more than enough to get me to the next stage: The clinical trials (non-FDA approved drugs or experimental).

I am looking forward to my next appointment at University of Chicago Medicine.  The results of my genetic testing from Foundation Medicine are out and it identified one gene called RET that can unlock my cancer mystery.  The report also listed trial drugs that maybe appropriate for me.  All this is foreign to me, but my doctors are excited.  So if they tell me I have to do this and that, that is easy.  Just get me to the starting line and I will figure out how I will finish.

At the finish line, I know who will be there: You, my family and of course, mom.  It will be a sweet moment I look forward to because it is all worth all these years of struggle.

RET

RET Gene

Cheers.

P.S.  My next U of C appointment is on March 12.


 

Giving up an inch is like giving up on hope

February 19, 2014

It moved again.  My CEA (tumor) count went up again—slightly, as my nurse told me.  True.  An incremental .10 increase is small compared to a full point increase so I should not be worrying.  (Note:  I had another blood test a week after when my platelet were low to check if I have recovered and if there are any CEA activity).

 
If you follow the Sochi Olympic or any world class events, the difference between a gold, silver, bronze or a world record is measured by centimeters, inches, or micro-seconds.  At this level of competition it requires years of dedication and sacrifice.  Everything must be perfect the moment you step on the ice or the starting line of an elite marathon event.  You don’t give an inch, a micro-second, or a goal until it is time.

Similarly, I may not be a world class athlete but each time I give up an incremental increase in my tumor count, I feel robbed.  I hate it.  I have made many sacrifices and my cancer still manage to shave off something out of me.  It is slowly thinning out my hope for cure.  Besides I don’t have anything to spare especially when my CEA count is more than 100% beyond the normal threshold.

I am not giving up.

Today, I consulted with doctors at the University of Chicago (U of C) Hospital to see what are the possible cancer trial programs open for me there.  I am now looking at experimental drugs that might fit me.  Like all consultations I have done from Mayo to MD Anderson, and now U of C, there are only possibilities and hope.  This is the nature of cancer: there are many elements to consider.

They believe that my immunity is strong that I am able to co-exist with my cancer or that my cancer is weak.  They also believe that the CEA tumor count can be misleading.  To settle matter, they recommend a CT scan for comparative analysis. This way it will be conclusive if my CEA count is giving me false positive readings.  A growth in my tumor means my CEA count is giving me the right signal; otherwise, they are treated as noise.

They also believe I can fit into an immuno-therapy trial because of my profile.  It is like weaponizing my immune system to target my cancer.  Or I try this other chemo pill.  So, there are options and possibilities which is all what I can hope for.

It also means I have just broaden my team to help me beat my cancer at world class level.  I willing to do the work and make any sacrifice to take back that inch I was robbed.  It starts tomorrow, when go back to my unfinished chemo.

Cheers.

P.S.  A surprise “care package” came in yesterday from my German friend FrankH.  I appreciate it.  Thanks.  (I wrote about FrankH in a post dated November 7, ‘I am ready.’)

Snow day for me.


Snow day for me.
February 7, 2014

Y“You make it to February there is a good chance the change or resolution will be lasting.”  I wrote that in my previous post due to optimism brought in by a new month.  I should have added new challenges too.

Yesterday, I got sent home early from my “chemo” school.  I was far into my drug-induced dream and have received several CCs of chemo, when my wife woke me up and said:

“ The lab called and your platelets are low.  They are stopping your chemo.”

Low platelet counts mean I am prone to bleeding.  Chemotherapy can cause your platelets to go down, there is a certain threshold that they don’t cross and I just crossed it.  I sometime have nose bleeds before and my body can still take it, but this time it is risky.

My first thought was now, with a skip in my heart beat, was my CEA (tumor count).

“How is my CEA?” I asked my wife.  “Not back from the lab only the platelet count was called ahead.”  In a testy voice, I said. “Are you sure you are not hiding anything from me?”

My nurse, Edith, assured me the CEA count has not come in yet and that my doctor is coming to talk to me.  These talks make me nervous but he just told me the same.  We stop for now, rest, and re-schedule.  It’s a snow day for me.

Later in the afternoon, my nurse called to tell me the results of my CEA count: high.  It went up.

February just turned cold.

Cheers.

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