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Posts Tagged ‘MD Anderson’


Another scan: All seats taken.
September 3, 2014

All the seats were taken, all 18 of them. Some had blank stares in their eyes probably because they are hungry. You are not allowed to eat anything before your test. There we were, me included, waiting for our turn to have a CT or PET scan performed. In the background, the Price is Right show was showing and all were glued to the TV watching to see if the lady is going to win the brand new Porshe 911 Carrera.  The car would surely turn heads and fits into the category of a chick (or guy) magnet car.

Earlier I had already checked in and I am just waiting for them to call my name to have my CT scan done. The scan is one of those test I have to do to see if my tumor shrank again after two rounds of chemo.

“Oh no!” A collective sigh of regret filled the waiting room.  “She should have not taken the $3000 money. Oh my god, she guessed all the numbers and could have won the Porshe!” That is easy for us to say watching in the waiting room.  The car was worth $92K.  Ooopps.

Price is Right is an appropriate TV show for waiting rooms. That and People’s Court or Judge Judy.  It is neutral and entertaining enough to distract you from all your medical problems.  CNN is depressing.  Soap opera: nausea.  Sports: drama

“Alvarez.” The technician calls my name and puts me back to reality.  He hands me a big glass of clear liquid. “Finish the drink in an hour and I will be back so we can do the test.” He goes on and calls other three names and gives them same drink and instructions.

I asked for a straw.  The tech gives me one, then I realize it was a mistake.  The others were all drinking it straight up from the cup, including the lady in the far corner.  Damm people: This is not a beer cup and we are not in a bar.  Whatever.  I might as well drink, er..rather sip, this tasteless concoction with my pinky finger raised.

Raising the cup I start sipping.  The drink is not bad, I have had better prep drinks before.  The best one is from MD Anderson, which comes in different flavors and a choice of sugar-free or not. (I posted a picture of the drink in my previous post in June.  Check that out).  I was the last one to finish which made me think if the straw was a good idea.  It didn’t matter we all waited and try to get distracted.  Gone are the hunger pangs only to be replaced by bloatedness from the drink.  I am hoping for good results like the one last August 8th.  We will see.

CT scan prep drink... burp!

CT scan prep drink… burp!

Ding…ding…ding. Come on down!

Cheers.

P.S.  I drafted the post before being called for the scan.  The scan calls for a dye being infused during the procedure so your organs will light up.  Your body will have this warm and hot feeling when the dye is infused.  Right after the infusion and scan things got dicey: I had an allergic reaction to the dye they gave me.  I was flushed, itchy, palpating, and full of rashes and hives.  I called for my wife and when she saw me she had the look of concern.  A doctor was attending to me and I was red like a lobster.  They gave me benedryl and put me in a room for observation.  I have had these procedures many times but this is the first time I had an allergic reaction.  The medicine took effect and slowly my allergies cleared but it left me groggy and sleepy.  All is fine now.  Am back to normal.  Just another excitement to spice up my life.  Ha!

What happened?  S**t happens.

 

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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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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.

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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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Games of Tumors
June 28, 2014.

II still hurt from the spleenic embolization I had last Thursday, June 19.  Spleenic embolization is a non-invasive procedure that is used to disable part of the spleen, where blood platelets are stored.  Think of the spleen as the gas tank for platelets, only mine has grown slightly in size due to long periods of chemo.

To objective is to resize my spleen to make it store less platelet and boost the count.  Humans can exist without spleen you just have to watch your diet.  The conventional approach is open you up for surgery or use embolization technique.  The is latter is non-invasive–and better–because the procedure calls for inserting a catheter in an artery in your groin.  From there, using a dye to map your arteries they navigate the catheter until they reach the spleen.  (Note: This is my second embolization, the first was in 2009 when my cancer mets to my liver.  See post, At the starting line with Dr. B, December 22,2009).

Upon reaching the spleen, certain arteries that deliver blood to the spleen are blocked thereby effectively disabling that area.  The result is a reduction in the effectivity of the spleen to store platelets.  Since mine was already enlarged 60%-70% of my spleen capacity was reduced.

Being non-invasive does not mean it is not painful afterwards.  During the procedure they are awake because they need you to move to certain position to put the catheter in the right place.  Don’t worry it is just a blur.

The after care is the challenging part.  It is deciding how much “care” and recovery you need.  The doctors have warned me about pain from the spleen and a referred pain to the left back shoulder for the next two to three weeks.

While at the hospital, you are practically drugged to your senses.  I was given my favorite “toy” again, a contraption that continuously deliver morphine and as bonus after a prescribed time, you press this red button and more morphine comes out.  Whoosh.  Watch out morphine rush.  Then to help you sleep more drugs and narcotics.  The danger is you become lethargic and constipated.  Reality.

Reality is also traveling back to Chicago from Houston drugged out and in pain.  I have flown many many miles for business and in certain conditions, but none has prepared me for the travel back home.  I was in distressed.  The high narcotic dose makes me vomit and nauseous.  Like many travel nowadays in the US, it is full and delayed.  It was not our  lucky travel day, our flight was delayed then we were put on a late flight in a different airport (HOU airport to IAH airport, which is 35 miles north).  My wife took all the burden of travel since I could not even lift anything.  I love her.

Back at home and after a week, I am slowly recovering.  I still take narcotic pain meds like candies but I found the balance of when to take it and not be constipated.  Next step is a blood test if my platelet count responded.

The never ending bloody saga “Games of Tumor!” continues.  For this battle, Lord Spleen gave the ultimate sacrifice for our kingdom but he is still with us.  FREEDOM! (ala Mel Gibson in Braveheart)

Cheers.

P.S Doctor’s checkup this week for platelets.  Many  thanks my friend Ria for letting us use their house while she and her family were on vacation. Go USA in the World Cup

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My Father’s Day
June 6, 2014

This is one holiday that I look forward to after Mother’s Day.  With all attention towards Mother’s Day, it is time that we Fathers take the stage.  Ha!  After all we are not only bread winners in a family, we are also keepers of the honey-do list: Honey do this…honey do that!

In my household, I rule.  Whatever I say goes.  If I say I am going to clean the bathroom, nobody opposes.  If I say I am gong to wash the dishes, I do not hear a word from the family.  I just have a wonderful family.

For this year, we celebrated Father’s Day early, June 6.  There is a reason for it is that I will be back at MD Anderson Houston, TX on Father’s Day weekend.  I need to consult my low platelet problem and undergo an embolization of the spleen (Note:  The spleen functions as a blood filter to the body).  They noted my slightly enlarged spleen and want to address this problem.

I would rather stay home but that is not the case.  I am use to this.  We celebrated our version of Father’s Day by having a picnic at the lakefront.  It turned out good too and I definitely enjoyed.  Ethan, my grandson, enjoyed the most because he has room to run and was playing baseball with the family.  I am definitely blessed.

At MD Anderson Houston, TX
June 14, 2014

It is Father’s Day weekend and I am here at the hospital.  It is a Saturday.  It is quite at the hospital, but there is still plenty of activity on this floor.   Cancer does not wait.  I am waiting to have my CT scan done.  They will be giving me my prep drink soon and I will have to finish that before the scan.  I know the routine having done this many times.

It is my first time to have a scan here at MD.  In my quest for a cure I have been to many places too like: Mayo, Northwestern, and University of Chicago.  All of them are different but the patients who go there are the same.  It is the look in their eyes that I always notice.  These medical facilities make an effort to make things easy for the sick and desperate.  I always get a jolt of reality when I sit in waiting rooms for test or consult.

It is a totally different world here compared to the outside in the “normal” world.  I straddle both worlds and am always in conflict between the world I want and what I was given.  I just ran a half-marathon two weeks ago and now I am here at MD Anderson.  Two weeks ago I was surrounded by runners aiming for personal records (PR) and now I am with patients just aiming for a chance of more tomorrows.  It is what it is.

There are fathers here in this waiting room.  They are surrounded by their families.  I know each of us wish we were not here but we also know why we are here.  Knowing that gives me comfort, I am in good company.

Drinking my prep drink at MD Anderson

Drinking my prep drink at MD Anderson

Cheers

P.S. Looking forward to seeing my wife tomorrow to complete my Father’s Day.

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Santa is coming …soon.
December 20, 2013

Icould not believe the year is almost over.  Our Christmas tree is up and the gifts under the tree are growing.  My grandson, Ethan, still has no notion of what Christmas brings, Santa, or Christmas wishes.

Ah…wishes.  I have a few of those.  I am sure you have your own list too, but have you been naughty or nice?  I look forward to Christmas because it is one of these events that bring my family together in the spirit of renewal.  Thanksgiving was about the blessings, while Easter might be about rebirth or renewal as well, Christmas brings a different feeling.

Love.  Sharing.  Giving.  These are what Christmas evokes for me.  I have received many things, more than you can think of, especially this year.  The year started with a bad prognosis and I had to claw back every second of my life.  You were there to help me by giving time to visit, prayers to comfort, and food to nourish.  You gave and I responded.  That’s the reason why I have often said all of you have become part of me.

I wish I can give more, more of myself, more of my time, etc., as a way to express my gratitude.  Since there is a only one of me to give there are limits; instead, I try to live a righteous life and be an example to my family and friends.  However, I still have many faults I have to iron out.

So for this Christmas, my wish is to be given more chances to correct myself so I can be around to give more.

Happy holidays!

Happy holidays!

Happy holidays to everyone.

Cheers.

P.S.  As a cancer update, Dr. G of MD Anderson called last week to give me news on the option for surgery.  He said their surgeons are not recommending surgery to remove the lesions in my lungs.  They are many and if done, I will not be able to run or do marathons.  I also started chemotherapy again to keep my cancer in control while I look for other options.

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