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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.

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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.

 

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You got mail …ding!

August 13, 2014

Imiss Dr. B, radiologist from my hospital.  He use to call me at home to give me news about my PET or CT scan (see previous post PET scan results dated April 30, 2013).  Now I get notified via email.  How impersonal medicine has become.

There is some comfort to be appreciated when you hear a familiar voice telling you the good news or there is bad news.  My doctor is there with me: good or bad.

The email reads, new test results are now available at the UofC’s MyChart web portal.  From the web portal, patients can access their medical records, schedule appointment, send secure email to doctors, and view test results.  MD Anderson has something similar and they call it MyMDAnderson, plus they even have a mobile app for IOS and Android.

Inspite of the coolness of all these technologies, I still could not shake off the feeling that I am about to see the results of my PET scan in a self-help web application.  I suppose doctors are just getting too busy now a days.

So I login to the site.  I get to the scan report and start reading it.  Time slows down for me when I am about to get the results of my scan.  I just don’t want to miss anything.  I get to the summary:

“IMPRESSION: Stable to minimally decreased in activity of multiple bilateral lung nodules.”

In English: my new treatment is working!  There are no new nodules and the existing ones have decreased, minimally.  Yes!  Let’s do the lab rat dance.

Go number 5!  Go number 5!  Go number 5!

This is where I miss Dr. B.  We would share a moment of happiness and I would be thanking him profusely, as if there is no tomorrow.  Nonetheless, reading the good news of my scan gave me a sense of relief.  After only two cycles of chemo treatments, I am responding to the new drug.

The minimal assessment is relative; fighting cancer is a game of inches and centimeters.  A 1.4 centimeter or 17% reduction in the size is still, at face value, a response in the right direction.  It gives new hope and is a blessing.  I know how this works, for having to live it in the past six years: You take what is given and be thankful.  Others may not be as lucky I am or would want to be in my place.  I know them.  I see them.  I pray for them.

What’s next is I continue with the trial.  My next treatment is next week so for now we celebrate.  We run and get ready.

Cheers.

P.S.  For the mid-week run, anything above 10 miles again.

 

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Berlin Marathon: Done.

October 5, 2012

Basel, Switzerland.

erlin is done. I still have the afterglow from running Berlin marathon last September 30. It was a memorable weekend in a historic city. It was my second time to visit the city but never this close to see its people and the city first hand. I felt like a celebrity as they came out to cheer you. All along the way you would hear…

Bravo. Aller (‘go’ in French). Laufen (‘run’ in German), Roberto!  Bravo.

There are the beautiful little kids who would even come up to you and extend their hand. High five, dude. As you pass-by they would do ‘the wave’ in chorus with others. Cow bells, horns, and bands every couple of kilometer. As the morning turns into afternoon, the beer gardens lining the route becomes crowded and noisy. They love their beer in Germany. There are no open bottle restriction.

The aide station are well stocked with water, Powerade, hot tea (yes, hot tea!), banana, and apples. Of course, if you are not happy with the selection you can always stop at the next beer garden. Ha!

The historic significance of Berlin is not lost on me. I love history. The marathon start at the Tiergarten, Berlin’s equivalent of NYC’s Central Park or Chicago’s Grant Park. The park was previously the hunting grounds reserved for royalty and the literal translation meant animal garden. The marathon also ends at the park passing through the famous Brandenburg Gate.

Berlin marathon is the fastest marathon course in the world and it is designed for fast runners. I am not a fast runner in my current state and did not break any personal records. I was just so thankful I was able to run it. I was full of anxiety coming to Berlin not knowing whether my cancer-stricken lungs will be able to carry me to the finish line.

Each cough I make would elicit a look in my wife’s eyes to see if I was ok. But as I got pulled by the energy of other runners and started knocking down the miles at a steady pace, my confidence started to build. At the 21 km marker, we were still on pace on my target to finish under 6 hours. My cancer nodules were cooperating. However, by kilometer 32 (mile marker 20) fatigue, stiffness, and cramps started to set in. My lung capacity was limiting me to remove the build up of lactic acid in my muscles.

The sweeper bus have caught us but I was determined to get this done.  It was such a grind so we ended up walking most of the way.

As we near the finish at kilometer 40, other finishers were cheering us on. Bravo! The roads were already open and we are running on the side. Then you turn and get a glimpse of the Gate. As you approach the Gate, you go through a column of other runners merrily drinking their beer. They stop and clap as you pass thru. All were urging you to finish. Laufen, Roberto!  The back-of-the-neck hair raising moment was when you pass under the Gate and whole thing opens up to the finish line (Ziel) with people watching you.

I felt like a deer when flashed with headlights. The Gate was partially obscuring the people behind, then all of the sudden it is there. We get to the finish line with the official timer off but still very thankful we finished and have the medal to prove it.

I did it. I have metastatic lung cancer and I finished the Berlin marathon in 6 hours and 38 minutes.

Before the start of the marathon

Berlin finishers

Berlin medals and bib. Bravo!

Cheers.

P.S. Have been taking my chemo pills for the past 5 days with limited side-effects.  Thanks God.  Also, good luck to all runners running the weekends Chicago marathon.

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PET scan results.

February 3, 2012

was on hold for a customer service call when the call came in. I was trying to distract myself and not think about the results of my PET scan. The caller id says it’s my hospital, Swedish Covenant.

(Click, I answered)

 “Hello, Bo. Dr. B from Swedish.”

The familiar warm voice of Dr. B greeted me. He has been good to me since I was first diagnosed with cancer. He is the head of the Interventional Radiology department and has gotten to know me well, and my case. I call him the Sheriff.

Hi, Dr. B.” I replied.

How are you?” He adds.

Hmm….I stop and think. Ok, doc stop messing with me. Either you have bad news to deliver that’s why you are asking or you are sincere about asking how I am.  I am on pins and needles, doc.

I talked to Dr. M (my ocologist) and we conferred regarding your scan results.  He said it is ok for me to call you regarding your results.”

Ok..ok. I love you,doc, but the anticipation is killing me.   Let’s get to the point…argh.

Your scan showed that the nodules are smaller when compared to your previous scan in July and October 2011. You are responding to your treatment.”

He continued reading me the details but my mind was already else where. YES!  YES! YES! Die suckers! Go back where you came from and leave me alone!  Cancer sucks!

Congratulations. By the way, you have an acute sinusitis in the right maxillary area . You might like to have antibiotics prescribed.”

That’s the least of my worry. Whew. I am so glad that my treatment is working. I know many people were praying for me for good results. We got it. Thank you. Now, all I need to do is complete the rest of my treatment. However, I have this nagging feeling that I need to do more just to get rid of this cancer and yet I am stumped and resigned to the fact that there is no cure for cancer. It just will be part of me just like the necrotic scars it will leave on my lungs.

Nonetheless, I will not let it steal my moment…our moment. Today, we celebrate. We have beaten done this cancer for now. Ah, life is so good.

Cheers.

P.S. I still could not believe the good news, so headed to the hospital to get a copy of the results.  There it is:

Stable multiple pulmonary metastases without new lesions or change in size when compared with prior PET CT from xx/xx/xxxx. Essentially, all of these lesions have dimished in size when compared with the postcontrast CT exam of the chest, abdoment, and pelvis dated xx/xx/xxxx.

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It grew…

October 21, 2011

y a millimeter. How can a millimeter change your life? That’s cancer for you. I think I was prepared to hear the news but I still hesitated. I had been conditioning myself for the imminent news.

Yesterday morning I had my scan and in the afternoon, my daughter, Abby, had a scheduled MRI  so I accompanied her. While she went for her scan I went to see if the results of my CT scan are out. It was already done.  The technician gave them to me but I did not dare open or read it. I think I was trying to delay the inevitable. It is not like I am going to prison but the thought of not knowing gave me sense of freedom. After a while, I called my wife. She was sleeping since was going to work later that evening.

“I have the results, babes.” I said.

“What did it say? Are you with Dr. M?” She replied after being fully awake and asking a flurry of questions. She is anxious as I am, I guess.

“I have not read it. I want you hear it while I read it.”

I read through the report while she listens. ‘…there are multiple pulmonary nodules in both lungs. A representative nodule in the left upper lobe measures 1 cm…‘ There’s the change. I read through the rest which tells no metatastic malignancy activity in the abdomen or pelvic area. I got resected organs here and there due to cancer surgeries but all in all, it was clean. But in the chest area, multiple bilateral (both lobes) pulmonary nodules, suspicious for pulmonary metastases was the impression.

There was silence for a moment, then I told her I will hang up and see Dr. M, my oncologist who is still in the hospital.

Dr. M studies the July 28 PET scan and the latest CT scan. 1 mm difference. He calls his colleague, Dr. R to get an opinion. Both leans toward more chemo but would like to run one more test: another PET scan to gauge how aggressive the chemo they will have to give me. Ah…my world is shrinking again. I hate this.  The idea of more medicinal poison just puts a bad taste in my mouth. For the third time I am going to chemo jail.  We can rationalize everything but I will be kicking and screaming until that first drop of chemo hits my vein.

I told them I am committed for the next two weeks and I leave Sunday on business. I ask if we can delay the procedure. They agreed.

1 mm. A fruit fly is small than a millimeter and I can crush it with a finger. However, this cancer is on its third year of scalpel fighting, targeted-chemoembolization shootout, napalm- carpet-bombing chemo war with no end in sight. The battlefield is littered with good cells and cancer cells, of vomits, constipated stools, falling hair, sweats stains, and more. Damn this cancer.

And there is the collateral damage of lost time with family, less running, and financial stress. I hate cancer.

Let me just say this, that’s the last 1 mm you will take from me, my family, and my friends. Capiche.  Oh, did I tell you I have a brother named Guido?  This Kenyan has Italian blood too.

Ciao.

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Facing reality: Lung CT scan.

October 18, 2011

short posting.  My oncologist’s office called to say that I have been schedule for my chest and abdomen CT scan Thursday morning, October 20.  Gulp.  We will now find out if the six nodules in my lungs has grown or multiplied when compared to my last July 28 PET scan (see related posts ‘Its not there‘ and ‘The plan‘).  All bets are in.  Should there be any cancer activity, I am sure the verdict will be six-months of hard chemo.  I am hopeful, and praying for the best.  My blood test last week showed my CEA (tumor count) level is stable at 1.7, which is under the 2.5 threshold.

“Be sure to pickup the barium sulfate contrast so you can drink it the night before.” I was instructed.

“Ok.” I grudgingly replied.

Great. Just in time for Halloween, I am my own ‘glow in the dark’.

Cheers.

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