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Banquet of life: It is free.


Banquet of life: It is free.
August 15, 2015

At mass, the priest told the story of an immigrant family on a ship bound for the US.  The father and his family kept to themselves in their cabin with their food and belongings.  Until the son ventured outside and found himself in a banquet of food, eating to his heart’s content.  The father found the son and was worried how he was suppose to pay for all the food his son ate, and the possibility of jail sentence.  The son saw the worried look of his father, and said:

Father, it is free.  It is part of our passage.

Life has many things to offer and it is free for us to enjoy.  Everyday we wake up is a gift, as many have said.

That gift was recently enhanced by the news that my CT scan last August 7 was good and I can remain in my current clinical trial.  I know I should have written much earlier as some of my friends have already sent messages asking for news.  I am sorry but I was busy in a banquet.

Stable was in the medical impression.  It means my current clinical trial is containing the tumor growths in my lungs and liver.

Unfortunately, my white blood cell (WBC) count took a hit, and I was not allowed to started my third cycle last August 10th, Monday.  A low WBC makes me susceptible to infection and further treatment would make it worse.  My doctors delayed my next cycle for a week to August 17.

So I have been busy eating any thing that will increase my WBC.  I can almost hear my mother prescribing the latest herbal diet she heard of to increase white blood counts.  Stop it, Mom.

There are drugs out there that can boost your WBC, like Neulasta, which is injected under the skin.  It is painful, expensive, but it works.  However, I am in a clinical trial program and cannot take it.  Instead, I am eating my way like a rabbit: kale, spinach, broccoli, hemp., etc.  More kale, spinach, organics, etc.  You know what I mean.  I am also keeping active by walking and yoga.

Living with cancer, and restricted by the clinical trial rules, is not exactly easy but I am not complaining.  Right now, this drug has given reprieved in the growth of my tumors and gave me another week of chemo holiday.  However, I am not naive to say I am cured only that I am still here.  I know how this works.  It is a matter of time that my cancer will adapt and I myself would have to adapt as well.

In the meantime there is the banquet of life to partake of, and it is free.  Come and enjoy it with me…in appreciative moderation.

Cheers.

P.S. My doctors warned me that they might have to reduce the dosage of my treatment to help maintain my WBC.  Huh?  This is like winning fight by a draw resulting from a stable scan but next time they tie one hand to your back because your WBC is low.  WTF.  Later in the week they double-checked the counts and said, there was no need to reduce my dosage.  I was .02 above the limit.  Whew.  I am glad .02 is not the alcohol-limit test otherwise I would have been in jail for drunk driving.

Judgment day version x.x


Judgment day version x.x
August 6, 2015

I lost count on how many CT scans I have done. All I know none of them were good except for one or two, which was several years ago.

Tomorrow’s scan is to verify if I am responding to my current clinical trial, which I have been taking for two months now. I use to be anxious on the eve of my scan but now I seem to be more at peace. The outcome of tomorrow’s scan is already pre-destined, meaning I cannot change it. Just like tomorrow; ready or not it will come.

I am ready. If the scan is good, I continue with treatment; if not, I look for another treatment.

No matter what the outcome is, I will celebrate tomorrow. Maybe take the day off and take my BFF Ethan to the water park. Soak up some rays and chill out floating around the lazy river. Yeah!

Cheers.

 

Summer fun.


Summer fun.
August 2, 2015

Lately, I have been enjoying my summer hanging out with my wife and Ethan. Instead of my normal summer that is about marathon training, this year it is all about Ethan.

I am not signed up for any fall marathon and I cannot run much now a days, but I still keep active, mostly walking and yoga. I miss running.  My mom had reminded me that I should remain positive. She laments that at her age (83 years old) she no longer go to the mall or crowded places; however, that does not mean she does not go out.  She still regularly plays mahjong with her friends. She says it prevent alzheimer …ha…ha!

She is right about keeping a positive attitude. It is about the things you can do, not about the things you can no longer do. More importantly, I am still here.

So now, my wife and I have our long walks and we go visit water parks with Ethan. That is his favorite activity aside soccer. He loves water parks. Fortunately, we have many water playgrounds and district water parks so we go when we can. He can play until he is wrinkled and blue, while I like to hang around the lazy river.  Fun.

Next week Friday, August 7, is judgment day again. I have my CT scan and we will find out if I am responding to my current clinical trial. I am hoping for the best. Good or bad I will not stop it to have a wonderful summer hanging out with Ethan.

Enjoy your summer.

Cheers.

Summer fun with Ethan

Summer fun with Ethan

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.

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