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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.


Back to the experiment: Round 3.
August 20, 2014

O

Over the weekend, I ran 14.5 miles (23.1 km) which is the longest run I have done so far. That’s a half marathon and a few. My wife was with me but she did only 11 miles (17.6) and did great.

I think I surprised her when I said that I was going 3.0 more miles as we headed back to the car. She did not object or discouraged me,but there was still a worried look in her face as I picked up my pace. I just want to take advantage of my one-week chemo holiday and log as much miles as I can. Plus, it is such a beautiful day to waste.

Now, I go back to treatment or back to the gerbil wheel. It will be another long day. I can’t complain; so far I have been responding to my treatment, manage to keep training, and enjoy each day that is given.

That is the secret: you take what is given and enjoy the moment. Similarly, I have had bad days but if you only hold on longer the moment will pass and things will be ok. Like running, there are times my legs refuse to take me the distance. Or my body just could not get up early to go the gym. These type of days are needed to balance things out, otherwise you don’t get to appreciate the good side.

Today, I will see Sammy again, along with Saray, Sonia, and others. I will sit in the waiting room and hear the interesting stories of my “friends”. I will get infused and take it all in with open arms. I will try to recover fast, shake it off, and set my mind for this weekend where I will be on the starting line for a half-marathon. With my chemo and training the race is appropriately called Half Madness 13.1: Mad to the Bone (It should have been called pure madness in my case). Yes!

Go number 5.

Cheers.

You got mail …ding!


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.

 

Round 2 and a scan.


Round 2 and a scan.
August 9, 2014

Round 2:  August 5, Tuesday.
If you have to have a hobby while waiting in hospital waiting rooms, choose knitting.  It seems to be the universal thing people do in the waiting rooms and lobbies of Mayo, MD Anderson, and here at UofC.  I am not into knitting but I appreciate them, sadly there are no apps for that.

Sammy was there again greeting me in my assigned room.

“Hello.  Hello.  How do you feel?” in accented English.  I replied that I was feeling good and joke him that he should be into running because he from West Africa.  He just gave a big laugh.

We started late because the trial drug arrived late at the center.  It just means a longer day for me.  I was among the first to arrive at the center in the morning and with the delayed arrival of the meds I maybe be the last patient.  Oh, well.  This infusion center is really busy.  Patients come in, have their chemo, and go home.

While at the waiting lounge, an elderly black couple took up conversation with the people they were sitting across.

“You must be together for many years now?  We  have been been together for almost 68 years and was engaged for 4 years before that.”  Wow.  The wife was the patient while the husband dutifully attend to her slowly.  You would hate for cancer to interrupt their marriage.

Such is life or rather the fragility of it.  It can be interrupted anytime without notice.  But those things are further from everybody’s mind at the waiting room.  Cancer is just…an interruption.  This is our new normal.  The waiting room could have just been another breakfast gathering where people know each other, including the nurses and technicians.  Greetings are warm and pleasant.  Conversations here are open but tempered.  Each is curious as to what type of cancer the other one has.  Each has their own way of coping.  None of us wants to be here but we are here.  We make the most of it.

“Same protocol, Mr. Alvarez.  First the pre-meds then the chemo.” Sammy said.

As the pre-meds take effect, I sink again to la-la-land….zzzzz.  Lab rat number 5 is down again for the count.  I wake up a couple of hours later, groggy, and hungry.  Although the infusion is done, I still have to stay because of all the monitoring and blood test (many blood tests).  My wife and I move back to the waiting lounge and the crowd has thinned.  True enough, I will be among the last patient to close before everybody leaves.  Long day.

The scan: August 8, Friday.
After two rounds of chemo, it is time to see if I am responding to the treatment by doing a PET scan.  These tests are pre-scheduled so all I need to do is show up.  You really feel like an experiment when you have tests lined up for you.  You do not have any control of what happens next during the trial but I also know it is for my benefit…and others.

PET scans as are easy and I have done this many times.  They infuse you with radiated sugar and you just sit motionless or sleep (more zzzzz’s….) for an hour or so.  The idea for the cancer cells to absorb the sugar and scan them for size and activity.  CT scans has more discomfort because they make you drink this prep drink, infuse dye in your blood stream, and then scan you.

Like all tests, it is the results that always drive the anxiety.  In my case I have to wait perhaps until next week for the results.  We are looking for a response to my treatment; a reduction in the size of my lung tumors or their numbers.  Thanks for all the positive thoughts and prayers.

Cheers.

P.S. I had hiccups again after treatment.  Have been recovering good enough to maintain running.  For this weekend, will aim for at least 10 miles again.

Quick post: Round 2


Quick post: Round 2

August 4, 2014.

Round 2 starts tomorrow.  Will be early again and will stay at the hospital the whole day.  Let see what surprise is in store for this lab rat.

Cheers.


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.

Clinical Trials: I am in.


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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