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Posts Tagged ‘chemo’


Round 8: Speedy Goes to Chemo.
Yesterday: October 8, 2014

R

“Road trip! Woohoo. We are going to UofC to see my “fefol” (other guinea pigs) and get treatment. Number 5 is in the house, fefol. “

It is the first time for Speedy to be taken out since arriving in his new home.  He was thankful to be rescued and join the other toys like Moo, the cow (more on Moo in coming post).  Speedy arrives at the hospital and takes a peek from the backpack and surveys the waiting room area.

“Psst….hey lady. What’s up with the crochet? Who is it for?”
“Hey, mister. Do I need a mask too?  That is a cool chair with electric wheel?”  It is totally new environment for Speedy and just takes it all in.

It is early and the waiting room is slowly filling up again with patients coming for their treatment. Just another normal day for us cancer patients.  I brought along my new toy, Speedy courtesy of Mary Ann, for some selfies.

I like an early start because I get to finish early too, hopefully.  I was called already for my vital sign, they have accessed my port, and I gave them a urine sample (don’t ask why this is included..).  I need to be screened to check if I am healthy for another round of chemo.  They are normally concern about my platelet count which was a problem before.

This my world once a week: The world of clinical trials.  The world of cancer.  The rest of the week is spent coping and making the most of what life has to offer.

While my blood was being drawn, I overheard a patient next to me saying that her anniversary date is coming up this October. 15 years, she says. Wow. I am on my 6th year fighting cancer and she has more than double the years of my diagnosis.  She wears a hat to hide her balding head but is so cheery in greeting all the nurses  who has been taking care of her.  She knows all of them.  She has an admiring personality and perspective all brought or enhanced by cancer.

This is one thing I noticed in others as well as myself.  Cancer transforms you.  How deep is the transformation would depend how cancer is accepted.

“In the meantime, inside the infusion room Speedy notices many things.

Hmmm…. fefol here are treated better.  They give you reclining chairs or bed in isolated rooms while us guinea pigs are kept in cages, carpeted by a bed of wood shaving to pee and take a crap, or sometimes croak on.  They even have individual TVs.  If lucky, we have spinning wheels to entertain us.  What’s up with that!  Talk about the have’s and the have-not’s.

Hello!  Class warfare.  Where is Reverend Al Sharpton?  I say we do a march for the oppressed guinea pigs.  Occupy UofC: We kick the ass of the human class!”

I bring out Speedy for a selfie and talk to him.  Listen Speedy: I am here receiving this trial drug because of your sacrifice.  You proved that this drug is safe enough to be tested on me, Number 5.  You have done your job and I will take it from here.  Thank you.

Speedy melts.  “Reverend who?”

Hello, fefol!  Speedy in the house.

Hello, fefol! Speedy in the house.

Cheers.

P.S.
This weekend is the Chicago marathon.  I found a bib to enter but had to pass.  Over the weekend I sprained my right ankle.   Depressed.  It would have been my test run for next month’s NYC marathon.  I am sure the Kenyans are rejoicing my absence.

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Round 4: Wild by Cheryl Strayed

August 28, 2014

She wrote “I looked south, to where I’d been, to the wild land that had schooled and scorched me, and considered my options.  There was only one, I knew.  There was always one.  To keep walking.”

That was from the book Wild: From Lost to Found on the Pacific Crest Trail by Cherly Strayed, who hiked the Pacific Crest Trail alone to discover herself.  A worthy journey but not for the faint of hearts.

It is a journey of redemption that she undertook on whim after her mother died of cancer.  I am sure some of us have had fleeting urges to undertake a self-induced journey of rediscovery, like retreat, yoga or hiking.  Maybe some don’t know where to begin.  Cheryl’s road to rediscovery started in Mojave, California and ended up at the Bridge of the Gods, east of Portland, Oregon.  It was more than a thousand mile hike alone in the wilderness.

As I read the book I could not help relate to it through my cancer journey.  Much like Cheryl, my cancer journey has shaped me to what I am today.  Whilst her journey has long finished, I am still on the trails of my redemption not knowing if, when, or where it will end.  I too have looked backed; have been schooled, scorched, joyed, and learned many times over.  Then there is the only option in front: to fight and survived.

There is only one difference between me and Cheryl, she chose to the PCT to discover herself while cancer chose me to make me see life, family, and relationships differently.  I have long stopped asking why I was chosen, instead I just accepted my faith willingly.  Thy will be done.

I still marvel at the people I meet along the way.  Yesterday was chemo day, Round 4, and my nurse was Marissa instead of Sammy.  She is from the Philippines and had worked with Edith, my other oncology nurse at Swedish Hospital.  There is LindaJ, the nurse research coordinator, the crochet ladies at the waiting room, other cancer patients, and many many other people who have touched me during this journey.  To write I acknowledgements to all would risk not naming all but I feel grateful and blessed.  Besides, this post would not end.

So, my journey continues and I am glad you are with me.  I am sure some are on a journey too or have had one e.g. divorce, sickness or just a redemption-seeking adventure.  Whatever it is (or was), there comes a point when you stop to rest and think.  You look back and you look ahead.  Whether it is a pain-numbing 26.2 mile race or an unplanned-system-shocking event that paralyze you to stillness, just block it and take the only option: Move.  Don’t give up.  Have faith.  Soon it will be your moment of self-discovery.

Cheers.

Half-Madness 13.1 medals

Half-Madness 13.1 medals

P.S. Over weekend, my wife and I completed a half-marathon in 2:57:23.  Not a PR but it met our target goal considering I had chemo during the week.  Next is to continue to slowly build the miles to 15, 18, 20, and maybe enter Chicago this October while on therapy.

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Clinical Trials:  I am in.
July 25, 2014

II am number 5.  That number looks like the number of an elite marathoner, but it is not.  It just means I am the 5th participant to this new anti-cancer drug.  Yes, I am in … for real.  I count myself among the select few to undergo this human trial, and I start Monday, July 28 at the University of Chicago Medicine.

The objective is to determine the safe and effective level for this new Phase 1 anti-cancer drug that address the RNA part of cell molecular structure. Don’t ask me explain, it is complicated.  All know is, it was first tested in mice and monkeys with positive results and now they are trying it on humans.  Guess what: I am the 5th “sucker.”  Ha!  I love it.

This trial is different from the one that was offered to me in April (see A Different World: Part 1 and Part 2), wherein I did not even get to start because of my platelet problems.  However, from what I am told this new trial is a better fit for my profile and that they are getting positive responses from the other trial participants.  That’s good to know.  Frankly, my options are not exactly a lot: either I do trial for a chance of another tomorrow or just give up.  I have tried all the other traditional chemo regiments and I am now immune to them.  I am willing to participate in this trial just to conquer my cancer.

Last Wednesday, I did all the pre-trial test such as: blood test, EKG, PET scan and CT scan.  With my platelet up (thanks to MD Anderson) and other blood work looking good, they allowed me to start Monday.  My start date would have been end of August, but the drug sponsor liked the initial results and decided to accept more participants.  It will also be chemo infusion and would require me to stay long at the hospital.

Well I am ready.  Since coming back from MD Anderson, I have been working out, running, and keeping active.  This cancer has brought me all over and tested me at every turn.  Cancer is my reality; the life I live through everyday is the dream.  I have so many wishes but I temper my expectation to what I can achieve or get.  That’s why it is better to live your life one day at a time.

Monday is marathon day for me.  My bib say number 5.  I know there could be problems ahead, right now all I want is to finish..in one piece.

Start

Cheers.

P.S.  My miles are slowly building up again.  Tomorrow let see if I can do 10 miles.

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A different world: Part 2 of 2
May 5, 2014

The easy part was signing the document.  I did not realize that to get the trial started was the harder part.  To get started I have to do a blood test and EKG.  Sounds, easy.  I thought so until they saw my low blood platelet count and slight EKG irregularity.

I had my blood test another blood test and EKG done last Friday, and the results were the same: Platelet is 60K (normal is above 130) and the EKG, still slightly elevated.  My blood platelet problems has been an ongoing thing since last year but we did not address it due to other concerns during my treatment.  Beside I was asymtomatic, meaning I showed no signs of bleeding, nose bleeds or noticeable bruisings.  I should have recovered by now being off chemo since end of February, physically active and  practically a vegetarian now.

At the moment, I cannot do anything about my EKG for the meantime but I am currently taking high dose steroids to correct my low blood platelet count caused by ITP.  I should be done with it by tomorrow, then another blood test to verify results, and a discussion with my clinical trial doctors on Wednesday (May 7).

Needless to say, I am disappointed.  Call it clinically interrupted.

My choices are limited and I can only control so much of what is happening around me.  I should have started the chemo trials today, instead I have to wait for the verdict.  I can understand clinical trials are different, it is after all a controlled study where everything has to be the same.  However, this can be mutually beneficial if they see it that way.  To them it is a study, to me it can be a life changing event.

Oh well, why bother.  I am not going let a beautiful 55F (12C) day go to waste by worrying.  Instead, my wife and I just turned it around and completed 7 miles at the lakefront.  Bam!  A no chemo day turned beautiful.  How was your day?

Its-A-Beautiful-Day

Cheers.

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Round 2: One Note Samba


Round 2: One note samba
September 7, 2013

I

could still almost hear it in my head.  The mellow and soothing sound of the song ‘One note samba’.  It was the last song that I heard as I go off to ‘la…la…land’ of chemo dreams.

Before they give you the chemo drug, they load you up with the ‘happy cocktail’ of benadryl (to make you fall asleep) and zantac (to settle your stomach).  Then comes the chemo drugs.  I don’t remember much of it.  I normally listen to music to zone out the hospital noise and beeping of infusion pumps.  I wish I can isolate the sterile and distinctive smell of chemo.

The place has not changed much only the patients.  I remember the time I had a relapse and had to come back for more treatments (First day at school…chemo school dated January 14, 2010), it was surreal.  Now, the cancer center has become my second home.  This place keeps me grounded.  You see and meet patients in various stages of their struggle.

This time around I woke up from my dream and found Angela next to my chair.  She came with her mother and six-year old son, Ian.  Angela is also a patient of my doctor so we got to talk.  I learned that Angela has cervical cancer and her tumor is growing.  She was also given the ‘quality of life’ talk by her doctors but refused to give up.  I can relate to that.  What is there to lose when you are given a bad prognosis; you just keep on going.

So she keeps going for her young son.  This is the hardest part of this disease: finding peace that everything will be alright when you are gone.  It will be.

That was a week ago, August 29.  I am off the chemo pills too for the next 7-days and then I start again.  Now I have to take advantage of this break and do some running.

P.S.  I got a request to write about my mom.  Oh boy, don’t get me started on that.

 

 

 

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Chemo pills: Done.

October 14, 2012

Basel, Switzerland.

nother milestone done, this time in the cancer world. I completed the chemo pills regiment, my oncologist prescribed to me while here in Basel, with few side-effects. I started taking it a day after doing Berlin (no rest for the weary). It was one of the conditions of my extended travel. Oh well.

I can never get very far from cancer reality but I am still very thankful for the blessings I have. I have learned that it does not matter where you are; in Manila, Basel, NY, or Chicago, it is about the people you meet along the way. Each day and each place provides an opportunity to learn, interact, and deepen relationships with people. Here in Switzerland, my wife and I had that chance of renewing friendships with JimmyB from Geneva and establishing new ones with JanetG from Zurich.

Relationships brings new meaning to a favorite dish or a new place. The sculptures and tourist spots of Geneva are meaningless when compared to the home-made lunch prepared by Jimmy. Rhine Falls may just be a waterfall outside of Zurich but when shared with Janet its significance is memorable.

People tell me they are inspired by my journey but the irony is I get my motivation from you. I get energize when I am out and intoxicated with life.  It is true what Forrest Gump said ‘life is a box of chocolates you will never know what you get until you open it.’ It makes me look forward to the next time I melt into the warm kindness friends and people, and I respond with great blessing.

Another week here in Basel and I go home. What awaits be back home is my family….and my oncologist. I go back on full chemo treatment on October 23 with a different regiment, stronger one: Oxaliplatin with a new drug called Zaltrap. The former is a platinum based chemo drug that I had an allergic reaction to and it makes me sensitive to cold things: I had to wear gloves when getting things from the refrigerator or not go there at all. The plan is to load me up with steriods and antihistamine before introducing Oxaliplatin with a slower rate of infusion at the hospital. After the hospital, I bring home my portable infusion pump for more chemo that usually last for 2-days or until I empty the bag. I get a week to recover and do it again to complete 12 cycles of this regiment.  I am not exactly excited about going back to full chemo treatment. I hate it and its crippling side-effects, but I need to do this to see you again…or for the chance to run the NYC marathon next year.

This is when I say ‘life is like a marathon, you will never know how you will finish until you stand at the starting line.’

Cheers.

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A different kind of relationship: the results

August 22, 2012

am ok. I did not have a restful sleep but my eyes are dry. My morning meditation ritual helped along with a short prayer of gratitude for another day given.

The call came in at 4:02 pm, yesterday, in the middle of a conference call again. My effort to make it a normal day is about to be interrupted. From the caller id I knew it was the hospital, the only question now is who will be delivering the ‘message’.

“Hi, Bo. Dr. B (the radiologist) from Swedish.” Ah, that familiar warm voice. I called my wife to be with me and put Dr. B. on speaker. She greets my wife warmly.

My relationship with Dr. B is unique and defined by difficult circumstances; we are not golfing buddies nor does he run marathons like I do. We seldom talk, socially, and the only time we catch up is on moments like this; when he has to deliver a message, most often difficult messages.

Like an auditor, his words are carefully chosen.

“Although, the scan images does not show conclusively, because the tumors are small, the existing tumors in your lungs showed progressive growth activity. Also, there is a some inflamation in your colon that was detected, which cannot be determined from the scan as tumor activity.”

As he continued to explain, I can see my world slowly shrinking again. I can never get use to this. In the background I hear him use trigger-words that put walls around me: more chemo, colonoscopy, more tests, and doctor’s appointment.

What do I need to do to make this disease go away? WTF. How many more years must I bear this? Useless redundant questions.

There is no subtle way to this madness or in delivering difficult messages, that’s why I love Dr. B. Each time I have a scan, he is there for me to give his professional opinion and heart-felt encouragement. Our relationship has grown with each call. We shared 15-minutes of deliberate and warm conversation, and within that time my life has changed again.

Cheers.

P.S.  Dr. B told me I have to see my oncologist Dr. M on Thursday for my treatment plan.  Back to the drawing board.  Arrgh.

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