Hospice and Palliative Care

Hospice Care
February 1, 2016.

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.

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.

Sketches during sleepless nights

Sketches during sleepless nights
January 18, 2016

he new year greeted me with a four-day stay (January 7-10) at the hospital. I was having difficulty breathing and was coughing heavily. It was also the week that I started on my chemo pills again.

I think my body was just stressed out with all the pain meds I have been taking, then I added the chemo to bear. As with any unscheduled hospital visit, I went home with more meds to take like inhaler, antibiotics, and steroids. Thank you for all the prayers and support you gave.

Sleep is hard to come by late and I end up with so many thoughts streaming though.

Hospital food.
Have you ever wonder why nobody comes out with 5 star rating for hospital food? No cooking shows on how to prepare hospital food or judges “you’ve been Chopped”.

Hospital food is the right kind of food we all should eat, low salt, low fat, and nutritious. But nobody likes it. Our taste buds have been trained to good food laden with enhancers and treats but not good. Think about it.

Quality time.
There was a time when I plan for the next family vacation or races to run. This was meant to spend time with your love ones. We live in a busy world and it is not getting slower. We have apps to manage our time and family designed to provide quality time.

Lately my quality time is limited to spending meaningful time with my wife and family. Seriously, I need not travel the world to have my quality time. It was an indulgence when my wife gave me a bath or when Ethan fed me once. I marveled at the experience and was struck by the simplicity of the moment. I am honored by your presence as well.

Cheers.

Happy New Year 2016!

Happy New Year 2016!

December 31, 2015

It will be over soon, 2015 that is.  I could not believe it that another year is about to close and a new just beginning.  I have been totally blessed in 2015.  Two memorable moments that stood out: The March trip to Jerusalem, where I ran a half-marathon),  and then to Rome where I saw the Pope.  Also there was the Alaska cruise last September which I totally enjoyed.  I go back.

The other half are those moments you wish to forget.  Life will not be complete without the other half.  It allows you to savor life and count your blessing.  November brought news that cancer had invaded my bones cause me grief and pain.  I have not been writing lately because I had to undergo radiation treatment for my left hip and cyberknife (it is not a dish or about cyber hacks) robotic surgery for my ribs and spine.  That’s done, so now I have to go back to chemo to welcome 2016.  Never ends.

All these moments are part of me.  There are times when I am in pain it can be a real character builder and then I see my wife, who diligently takes care of me, also friends and family praying for me which gives me confidence to continue.

Where I am not is hard and yet with all the hardships and pain I look at the good side of my predicament.

2016 is here with new opportunities to give thanks.  I had a good birthday and Christmas.  Our tree is still up devoid of presents but the memories linger.  My wife wants to take down the tree but it something I would like to savor for a little while longer.  The next chance is 350+ days away.  Gulp!

I am currently medicated for my rib pain.  No going out except for trips to doctor.  Enjoy time with family and Ethan.

Enjoy 2016.  Take care.

Cheers.

 

 

Happy Thanksgiving: 2015

Happy Thanksgiving: 2015
November 25, 2015

Happy Thanksgiving, everybody.  It is an American tradition but giving thanks is universal and is as basic as breathing.  One way or another we give thanks or acknowledge our blessing.

“Salamat sa Diyos” (Thank, God).

There is always something to be thankful for—always. Like:

• smell of fresh baked cookies filling up the house
• turkey roasting in the oven for Thanksgiving dinner
• snore of your wife/husband/love one beside you
• warm feel of the sun in your face and skin.

Simple. it tells you life goes on because you can feel, taste, and touch. And if you really look hard, you will see how beautiful life is.

Last year, I spent Thanksgiving in the Philippines, on business. It was wonderful because I got to surprise my mother and spent some time with family there. Although, I was far away from my family here in the US, I was happy to see they were together for our traditional Thanksgiving dinner. I am big on tradition. It establishes continuity and it is something you look forward to.

This Thanksgiving I am thankful for many things. Far too long to enumerate here. More importantly, I am still here celebrating it with my family, and with you. I sometimes reflect on the past but I do not dwell on it too long. I sometimes remember the races that I have run or the many place I have visited around the world, but what I reflect most are the memories it gave me. It is all about the feeling and completeness it gave me. It is also about the people I have met and shared the experience with.

I have stopped reflecting on the things I use to be able to do, life running or traveling, instead I just savor the moment on the things I am able to do or experience. Like the sweet taste of chocolate chip cookies in my mouth. Yum.

What I do reflect on are the blessings I have received, and they are many. As you know with certainty the limits of your life, the more blessings you see come pouring through. This Thanksgiving I am overwhelmed. I see it all with clarity and intensity. Perhaps it is because I am in constant pain that I am sensitized to any relief, sweetness, gestures, greetings, attention, or happiness I experience.

For this Thanksgiving make it special. If not a tradition in wherever you are, make your day special anyway.

Cheers.

P.S. 30 days to Christmas.

Tattooed.

Tattooed.
November 9, 2015

popped the question to my kids.

“Guess what? I got a tattoo! I got ink, dude.”

“No way. Really? Show us…show us.” They all replied with excitement. They could not believe I would dare and get one, but I got one: Five in fact. There see it.

Tattoo marks more on other side

It will look more like a mole when marks rub off. I got it when I was marked or prepped for radiation treatment.

In my last post (see Happy Halloween) post I mentioned about my rib pain, which was bothering me. Aside from this, I also have this shooting pain in my left hip when I walk (I told you these things never ends). I am a mess. I had a CT scan of my chest and a x-ray of my left hip done to check.  For my rib pain, the scan result showed that the tumors in my left lung were invading (or pushing) into my ribs. But more seriously, the x-ray result of my hip showed that there is a presumable metastatic tumor in my left hip bone. Ugh.

So far this cancer, which started in my colon more than seven years ago, is in my lungs, liver, and now in my bones. Somehow when my doctor called me about the bone metastasis I did not even react. I felt nothing. No freight training hitting me. No anger, sadness, or numbness of feeling.  Nothing. It was like ordinary news. When you get this far you really have to take each day one day at a time and focus on the good things.

Lately, a good day is when I can walk a for a few minutes before resting my tired hips.  A good night is when I can get a few hours of sleep before taking pain meds again for my aching ribs.  A very good day is when I can get to the gym not to do walking, cycling, or yoga but swim or soak in the hot tub.

So, what’s next?

Bone scan tomorrow, Tuesday, to see the extent of metastasis and if there are other areas affected.  On Wednesday, radiation treatment of my left hip and lung for the next two weeks at least. Hold off on chemo.  Watch the new Bond movie, finish the awesome book I am reading, and feed the fish. Oops, I digress.

The immediate concern is the pain in my left rib.  The plan is to shrinking the tumor in my left lung so it does not push against my ribs and relieve the pain. The pain my in left hip does not bother me too much, only when I walk, but the pain in my rib is just constant and elevating. I am fully medicated day and night. I try to avoid narcotic drugs if I can, but would make an exception to medicinal marijuana. Yeah, mon.  Moreover, Illinois just approved the sale of medicinal marijuana for qualified users.  Hey, I am qualified I can show them my tattoo.

Life is still good and tomorrow is a new day.

Cheers.

Happy halloween.

Happy halloween.
October 31, 2015

It is a rainy halloween here in Chicago but it is not dampening the ghoulish spirit of the kids: Trick or treat!  They are having fun.  I love it.

For this halloween, I made a costume of my little-man Ethan. He is fond of Baymax from the movie Big Hero 6, so I made him the armored version. I must admit I like that movie very much.

So I looked for a way to make it and found one in YouTube using paper plates. I used his bike helmet too and covered it with paper plates. Here is the thin version.

My son took him to a costume contest but he did not win. I think he was cheated. Next time I will make him a better costume to blow away the competition.

He is growing up fast and is eats a lot. I am training him to become vegetarian but my family forgets. He eats tofu, broccoli, and all vegetables. His favorite snack is edemame. I taught him to say “don’t eat cows or pigs” which he tells his mom. However, he is not convinced cheese burgers are bad and made from cows.

I think he gets confused.  He eats vege burgers, chickenless chicken nuggets (made from soy), and meatless meatballs (also made from soy). He often asks for the meatless meatballs for dinner and of course burgers, nuggets, and meatballs are all associated with meat and poultry. Also, we are a Filipino family and if you have been to a Filipino party you would see it is not for vegetarians.  Stay strong E; cows, pigs, and chickens are friends not food. Oh well.

Other news:

Rib pain:  I have been having this pain in my left rib, so yesterday I had x-ray done to check.  It maybe that my lung tumors are “disturbing” my ribs.  More tests.  Never ends.

Hair cut:  It’s halloween and my dark humors pops out once in a while.  I cut my hair short, I call it the coffin look.

Cheers.

Food for the soul.

Food for the soul.
October 25, 2015

I started my treatment again last Monday, October 19. My neutrophil count a.k.a white blood cells came back big time.

It is amazing what one more week of being off chemo and proper nutrition can do. During the week loaded up on smoothies, veggies, and salad and it helped. My neutrophil count were three times above normal.

My friend ChrisL think I should write a nutrition book. I would just write: eat fresh fruits and vegetables it is good for you. Eat organics, even better. It works. My mom would be a better candidate for writing a book about nutrition and cancer.

Ever since I got sick she would tell me to drink this native leaves, or put this in your food, or go stand in on one leg (not true). I just spoke to her and this time she says; I read that turmeric is good for cancer, you should drink it. Or she insist: put two tablespoon lemon juice, half teaspoon baking soda in water and drink on empty stomach. Really? That’s my mom. Like a good son I will think about it.

She means well, like all of you, I appreciate it. It helps when I have episodes of weariness and depression. I wish it is just as easy as drinking a get well drink. There is no shortcut to this disease. It takes you slowly.

For this cycle, my doctors have reduced the dosage of my treatment. They feel I am not recovering within the normal cycle of two weeks, so they reduced it. Frankly, I don’t notice a difference. Chemo is still chemo to me: in tablet form or infused. It still makes me sick not matter what. Anyway, I got five more days of treatment, then two weeks off. So close and yet feels like a long way.

Cheers.

Unchanged but neutrophinic

Unchanged but neutrophinic

October 13, 2015

Yesterday, was good news bad news day: my recent CT scan showed my tumors were “unchanged” or stable, and I can continue with my current clinical trial.  Woohoo!  But (there is always a “but” isn’t it?), my blood test showed I am neutrophinic.  It means I have low levels of neutrophils or white blood cells (WBC), essential for fighting infection.

Low neutrophils is common among cancer patients undergoing chemo treatments. The bone marrow, which produces WBC, takes a hit during chemo.  This is not the first time I became neutrophinic with my current trial; no worries, I just sit this one out.  My doctors expect me to bounce back after a week.

What to do?  Eat more green vegetables rich in vitamin B.  As you can see nutrition is really important when in treatment or just being healthy. Every green leafy vegetable counts.  They are critical in providing essential nutrients to the body.  I must admit I had poor eating habits before being diagnosed with cancer.  Then I made the change and transitioned to become vegetarian.  Now, I love fresh fruits and vegetables in all forms and organic: salad, smoothies, juice, raw, etc.  It takes time, like all good things, but it is worth it.

So eat your vegetables.  It is good for you.  Go Cubs!

Cheers.

P.S.  My doctors told me that the clinical trial drug I am currently taking, TAS-102, was recently approved by the FDA.  I am glad because others can benefit from this drug.

Who’s counting?

Who’s counting?

October 8, 2015

e 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.

 

All in

All in
September 20, 2015

have been eating salad, soup, crackers, and hummus for the past few days since I started my third cycle of treatment again. It helps me balance my system to minimize the chemo side-effects of nausea and constipation.

Sometimes I get tired of it especially after coming from our Alaska cruise where the food was non-stop and the service was excellent. I still ate vegetarian meals during the cruise but it is different when it is being prepared in different ways by culinary chefs and served by attentive servers.

I still have the Alaska hangover after two weeks. Alaska as been described as magnificent and majestic, and it is true. The place is like being in the presence of God. Perfect. Peaceful. Blessed. The natural beauty of Alaska makes you pause and appreciate what life has to offer. You see the bounties of life represented by whales, bears, glaciers, eagles, crabs, mountains, etc. You can also see the fragility of life too; that all this beauty could end.

As I continue to masticate the earthy taste of kale salad in my mouth, I keep on thinking back to Alaska and wishing that I was back there or some place else. Any place than being in the chemo hole again. I should be use to this but life is such a tease. It forever torments you of the things you don’t have or could have after making you experience the beauty of life.

Why eat kale or hummus, when there is steak and lobster.

Life can be experienced even if you are eating kale or broccoli. Some have found a way to fully embrace what others could not. It is a matter of acceptance and being all in.

Munch…munch…munch.

I have found a way to appreciate life during chemo. It is hard. You just have to have faith you can do it.  Think positive.

Travel Notes:  The majestic and magnificent Alaska

These two words are the most over-used words to describe Alaska. I could not help use it myself in seeing the (magnificent) glaciers and (majestic) mountains.

Wait there’s more: there’s the whales, salmon, crabs, eagles, bears, otter, shrimp, etc. Then there’s the people themselves: the natives, fishermen, loggers, artists, transplants, and Sarah Palin.

I came to Alaska as a tourist with every intention of enjoying the place. Also, it does not hurt that cruising to Alaska is the way to complete the experience. Cruising primes all your senses by getting pampered and fattened on board, and then see Alaska. Boom.

We took the ms Amsterdam by Holland America Lines from Seattle, WA with about 1300 passengers on board. It is a relatively medium-size boat with a crew of about 600. Most of the passenger were retired but active. This boat does not cater too much to kids, which most passengers like since it is quite. I belong to that group. The idea is to relax and see kids running around. If you want fun for kids, go for Disney cruise or Carnival.

The service staff were mostly from Indonesia and the Philippines. I got to meet fellow “kababayans” (countrymen). The trip was smooth except when we hit the open sea going to Sitka, AK. There was strong winds and I vomited in my room. I am use to vomits but there goes my dinner.

Here are some pictures we took.

Cheers.