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The human experiment: My first day at clinical trial
August 1, 2014.

This is a recount of my first day at clinical trials

Monday, July 28, 2014

H“Hi, Mr. Alvarez.  My name is Sammy and I will be your clinical nurse for the research.”  Reality hit me that I am now going to start a new phase in finding a cure for my cancer. My mind was pre-occupied by the events leading to this moment.

Earlier that day.  The clock reads 4:30 am and I am awake.  I need to get to the hospital before 7:00 am and it is a 20-mile drive from my house.  It is normally an easy drive but you have to pass through downtown to get from the north side, where I live, to the south side of Chicago.  I use to have a habit of going to the gym first before going for my chemo sessions but I don’t have time.

After a quick shower and breakfast, my wife and I leave for UofC Medicine.  We get there early but there are already other patients in the waiting area.  They look at ease with their surroundings, while I take in all the new environment.  Some patients in the waiting area are wearing protective masks, others are pale, glassy-eyed, no hair, and just look unhealthy.  I know that look.  Each of us have their own state of mortal temporariness; each, also, prefer not to be in this situation.

“So, Mr. Alvarez, today you will be having this new treatment.”  Sammy started to explain.  I was given a room with a bed after checked my vital signs and weight.  The staff is very efficient and courteous, like Sammy.  I learned later he is from Ghana and has been with the hospital for 16 years.  I am in safe hands.

“During the treatment you will be closely monitored.  There will be several EKG and blood tests before, during, and after your infusion.  The infusion will normally take two hours but you will be ask to stay longer so we can take more blood test and monitor you.  Is this your first time to undergo a trial?”

“Yes.”  I replied with a little anxiety in my voice.

This is a new experience for me: a human guinea pig.  I am participant Number 5.  Previous to this, the drug was only tested in mice and monkeys.  I suppose there is always the first time for anybody and it is too late to back out now.

Assisting Sammy is Saray, a sweet and motherly clinical technician, who tells me her son’s birthday is exactly like mine.  She has contagious smile.  She started with the EKG (the first of several) test, then proceeded to insert an IV line in my arm to get all the blood they would need during the treatment.  My port, located in my chest, was also accessed and with that we were ready.

Sammy started me off with three-drug “happy cocktail” combination, which is familiar to me.  The cocktail includes: Benadryl to put me to sleep, steroids to prevent any allergic reaction, and Pepcid to settle my stomach or more like to prevent vomiting.  I felt the effect of Benadryl lulling me to sleep but I held off to experience the first few drops of the trial drug.

As I took in the drug my senses were primed to any allergic reaction from the drug.  My wife holding my hands, looked for any changes in me like rash or discomfort.  My vital signs stayed normal as the minutes ticked by and finally I was out.  I was aware of my surrounding but too groggy to wake up.  After two hours, the infusion was done a post infusion EKG test was done, then more vital sign checks and blood tests.

They got so much blood from me that you would think Dracula is just outside my room sipping blood mimosa.  Well the idea is to monitor the chemo toxicity in my body to determine the safe and effective level to administer the new drug.  It was a long day at the hospital due to all the blood test requirements but I was glad it all went well.  I was given instructions to report any changes or side-effects I experience from the drug.  If any severe reaction happens, call 911.  Whatever.

For the next cycle, I am sure the dosage will be increased to see how I respond.  Maybe next time I will come in as a mice or in a monkey suit with a number 5.  Ha!

Zzzzz.... knocked out during the treatment

Zzzzz…. knocked out during the treatment

Cheers.

P.S.  I recovered from the first chemo cycle with only hiccups as a side-effect.  I started my own experiment too to see if I can train for a marathon while doing the trial.  Goal this weekend, another 10 miles.

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My Thanksgiving

November 28, 2010

here I sat at the head of the dinner table with my family eating our Thanksgiving meal. I just said grace and gave thanks to all the blessings our family had for this year. As the family piled every inch of their plate with roast chicken, potato salad, cesar salad, and pasta, I thought about last year’s Thanksgiving. It was totally different.

This time last year, I learned that my cancer was back and was in my liver. It was a bitter Thanksgiving to celebrate. I had a hard time looking for something to be thankful for.  I was wallowing in sorrow and hardly ate.  Many things have happened since then; chemo, surgery, more chemo, and marathon. I am back at the head of the dinner table surrounded by my family, again.

Many have called my comeback story inspiring. To me it was a humbling experience. I have gone on with my life, started working again, and continued running.  Now, I have an intense appreciation of life. I savor each breath I take. I cherish each encounter I have with you and everybody.

I am learning to meditate too. Yes, meditate. I think that is the next step in yoga. It is nothing fancy, but it is a way for me to honor my body. My body has taken a lot of beating not only from chemo and surgery, but also from my running. It heals itself and allowed me to enjoy my Thanksgiving dinner. I can do many things with my body. With meditation, I can speak to my body, pay respect, and give homage to it. If it is true that God resides in each of us then I am in the right place. Honor your body by keeping it healthy and you will have peace.

On the running front, my wife and I just completed a half-marathon yesterday (2hrs:46min:27sec). It was a personal record for her. The race start was cold 22F (-5C) and my gloved hands were numbed.  It finally warmed up three miles into the race. There were about 700 runners; the smallest race I have entered thus far. The race brought out the familiar memories of pain and relief. You got to try running or find the limits of your endurance. It is like finding the limits of life. There is none. It is yours for the taking. Meditate to honor your body, it will open you up to more blessings.

Schaumburg, IL Half Marathon

Cheers.

PS:  I received, anonymously, a care package of Life is Good scarf and hat.  Thank you very much for this generous gift.  It keeps my balding head warm.  On Tuesday, November 30, I will have my chemo maintenance again.  Ommm…..

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Tapering off for surgery

December 13, 2009

It is not exactly fun in the sun when I was in Miami.  They had record high of 86F in Miami while Chicago was in the freeze at -2F.  But why am I complaining?  I was running a fever while I was there and was getting weak.  During the day I was fine, probably propped up by Advil and liquids, but at night I could not sleep and was feverish.  The thought of being too weak for my coming surgery and being away from home disturbed me that I decided to go home a day early.  I have been away from home on long business trips but this time it was different, I have a surgery date on December 17.

I have learned to respect this cancer.  It came back with a vengeance for one.  It is now in my liver, which is a major organ, unlike before it was in my colon.  Also, although most people who see me tells me I look good, I feel weak and without energy.  I watch my weight for any sign of weight-loss and I try to eat…a lot.  I think knowing that this cancer is eating me inside is causing me stress, as well.

Unlike the first time when I was diagnosed, I did not know I was even sick.  I was partying with my friends, after work, in the streets of Rio and ignoring the signs of tiredness and fatigue until one morning when I passed blood in my stool.  Lots of blood, as in crimson red and profusely. My first thought was something broke inside me as I tried explaining this to Dr. W, Marriott’s hotel doctor.  She sent me to Hospital Samaritano and that is where my journey to the finish line took a sudden detour.  There I met Dr. F, a bright colorectal surgeon who puts me at ease when I first met him.  With his direct ways and good command of English, he explained the results of my emergency colonoscopy;

“Your colonoscopy showed you have a tumor in the sigmoid area.  When you passed your stool it bruised which caused the bleeding.  We took a sample for biopsy and the result will be in a day or so.   Your only option is surgery.”

“Is it life threatening?” I asked not knowing it was cancerous or malignant.

“No.  Not at the moment since the bleeding stopped.”

“Will I be able to sustain a 14-hour flight back to Chicago?”

“Yes.  I believe so.” Our exchange went.

I was relieved.  I did not exactly relished the idea of a surgery in a foreign country, with my limited Portuguese, the hospital’s limited English, and a recovery in a hotel.  So I flew back to the US with a set of slides Dr. F gave me.  He did not tell me the results of the biopsy to avoid worrying me on my long flight home, alone.

“Show the slides to your doctors.  They will know what to do.”

“Muyto obrigado (Thank you)” I replied.  That was March 2008.

For this second time go around with cancer, I was not partying in Lapa, Baixo da Gavea or in some exotic place.  Instead, I just finished a marathon then found out my cancer is back.  Since then it has slowly taking over my routine.   It is slowing me down, consuming even my spirit.  My anxiety is high until I know I am able to stop its devastation on my liver and my confidence.  For now, I try to stay strong physically and mentally, and I pray.

Running discipline tells you to taper off, relax, and carbo load prior to a big race.  And that is what I am doing but instead of pasta, I eating anything I want because once my chemo race starts all bets are off.  Bring it on, baby!

Cheers.

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Message from the Messiah

December 7, 2009

St. Clement's Choir

Have you ever listened or watched Handel’s Messiah?  Over the weekend, my wife and I watched the oratorio as performed by the St. Clement’s choir.  My wife’s friend, Rose, recommended it and they have colleague who sings in the choir.  Of course, Handel’s most famous piece in the Messiah is the Hallelujah chorus.  You may have heard it played.  Tradition is you stand when this is sung and that we did.

It was a hair-raising  and uplifting performance for me.  The oratorio was performed in the church’s sanctuary surrounded by lighted candles.  Handel’s Messiah has a universal appeal because one can relate to its message of hope and redemption in the many verses that define each part of the libretto.  I claim the verse in part 1;

Chorus: ‘His yoke is easy, his burthen is light.’ – Matthew 11:30 (Part 1)

Yes.  He asks to carry my burden for his yoke is easy, his burden is light.  Many have come forwarded wanting to carry my burden but it will be with Him that I share my burden.  He and I will be ok as we journey together.  I am glad I went and heard the message of the Messiah.  This will be my companion during my chemo session.

Another message sent to me was from my radioligist, Dr B.

“Dr M (oncologist) and I discussed your treatment plan after we met (see November 28 posting, The long road ahead).  The original plan was to have the chemoembolization done in January.  Dr. M thought we should start your treatment as soon as possible.  If we postpone the chemoembolization to January, Dr. M would like to get you in to start your chemo infusion this December.  However, if your infusion cycle is started, there is a risk you might get weak for chemoemobolization so I would rather do your chemoembo first instead of  January.  With this change of schedule, we will just go with regular chemoembolization without the use of beads as previously discussed.  Also, I had consulted your case with a colleague at John Hopkins Hospital in Baltimore regarding not using beads and platinum based chemo for embolization, and they see no problem with this changed approach.”

I should get use to this change of plans.  This cancer is really putting a damper on my holiday plans or what’s left of it.  I also notice a sense of urgency by the changes in my treatment plan, but I trust all my doctors.  The chemoembolization is set for December 17 at 8:30 am.  D-day.

Chorus: ‘He trusted in God that he would deliver him: let him deliver him, if he delight in him’ – Psalm 22:8 (Part 2)

I should look at December 17 as the starting line of the race I am about to embark.  My personal marathon, wherein I was drafted to run.  I claim victory.

Recitative (Alto) ‘Then shall be brought to pass the saying that is written:  Death is swallowed up in victory’ – 1 Corinthians 15:54 (Part 3)

What else is there to say, except ‘amen’ in a glorifying crescendo of chorus, harpsichord, trumphet, oboe, cello, and violins.  Can you hear it?

Cheers.

PS:  If you are interested in listening to Handel’s Messiah, here is a link to National Public Radio broadcast of it.  I have written this post listening to it.  Enjoy.  On my way to Miami, FL for business and some sun.

Handel’s Messiah by NPR

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