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<!doctype html>
<html lang="en">
<head>
<title>War on Cancer</title>
<meta charset="utf-8" />
<meta
name="viewport"
content="width=device-width, initial-scale=1, shrink-to-fit=no"
/>
<meta http-equiv="x-ua-compatible" content="ie=edge" />
<link rel="stylesheet" type="text/css" href="css/bootstrap.min.css" />
<link rel="stylesheet" type="text/css" href="fonts/font-awesome.min.css" />
<link rel="stylesheet" type="text/css" href="css/theme.css" />
</head>
<body id="page-top">
<nav class="navbar fixed-top navbar-expand-md navbar-custom">
<div class="container">
<a class="navbar-brand page-scroll" href="#page-top"
><i class="fa fa-play-circle"
><span class="pl-2">War on Cancer</span></i
></a
><button
class="navbar-toggler navbar-toggler-right"
data-toggle="collapse"
data-target="#navbarResponsive"
type="button"
data-toogle="collapse"
aria-controls="navbarResponsive"
aria-expanded="false"
aria-label="Toggle navigation"
>
<i class="fa fa-bars"></i>
</button>
<div class="collapse navbar-collapse" id="navbarResponsive">
<ul class="navbar-nav ml-auto">
<li class="nav-item text-right">
<a class="nav-link page-scroll" href="#background">Background</a>
</li>
<li class="nav-item text-right">
<a class="nav-link page-scroll" href="#diagnosis">Diagnosis</a>
</li>
<li class="nav-item text-right">
<a class="nav-link page-scroll" href="#chemo">Chemo</a>
</li>
<li class="nav-item text-right">
<a class="nav-link page-scroll" href="#surgery">Surgery</a>
</li>
<li class="nav-item text-right">
<a class="nav-link page-scroll" href="#infections">Infections</a>
</li>
<li class="nav-item text-right">
<a class="nav-link page-scroll" href="#victory">Victory</a>
</li>
<li class="nav-item text-right">
<a class="nav-link page-scroll" href="#links">Links</a>
</li>
</ul>
</div>
</div>
</nav>
<section
class="intro"
style="background-image: url("img/cancer/background.jpg")"
>
<div class="intro-body">
<div class="container">
<div class="row">
<div class="col-md-8 offset-md-2 text-center">
<h1>My War on Cancer</h1>
<h5 class="py-3">by Johan A. Goossens</h5>
<div class="intro-text">
<p>
Welcome to my "War on Cancer" blog. On this page I
chronicle my battle with and full recovery from stage 2
muscle-invasive bladder cancer. The story is in chronological
order meaning that the latest news is at the bottom. You can
simple scroll through the story or use the navigation link at
the top right to jump to a specific section. The last update
of this blog was on 26 July 2024.
</p>
<p>
The motivation for this blog was to inform my family and
friends who are spread out over 10 time zones. Initially I
sent emails to those interested but as the list grew, it
became too hard to track whom I told what. A second purpose of
this blog is to inform others who may one day find themselves
in the same predicament.
</p>
<p>
Even though events in this blog happened in the past, most of
them are described in the present tense as this was my
"diary" during the journey.
</p>
<a class="btn btn-circle page-scroll" href="#background"
><i class="fa fa-angle-double-down animated"></i
></a>
</div>
</div>
</div>
</div>
</div>
</section>
<div class="spacer"></div>
<section class="container text-center" id="background">
<div class="spacer"></div>
<div class="row">
<div class="col-lg-10 offset-lg-1">
<h2 class="pb-2">The Story Before the Story</h2>
<p>
Throughout my life, I've had kidney stones (about 9, lost count) and
every few years I went through a very painful ordeal. As a result, I
have been going to a urologist every year for regular checkups and
even more frequently when stone symptoms popped up. I have not
knowingly passed a stone in the last 5 years although I had symptoms
on multiple occasions.
</p>
<p>
For me, kidney stone pain is either the classic sharp pain in the
back, discomfort in the lower tummy or a radiating pain in my upper
legs or groin. Another feature of kidney stone pain is that it could
be digital; one minute there's extreme pain with vomiting, and the
next it's completely gone. Most of my symptoms over the last couple
of years were like that.
</p>
<p>
In 2015, I thought I had another stone (sharp pain and a little
blood in my urine). X-rays were inconclusive (small stones don't
always show well) but a CT scan with contrast fluid showed that I
had no stones. The CT scan did however show that I had a
"partially contracted bladder that is grossly
unremarkable" (not making this up, this was in the report of
the radiologist). As the symptoms went away, it was assumed that the
stone had passed before the scan without me feeling it.
</p>
<p>
Christmas 2017 I had another episode. Back to the urologist but the
outcome was the same.
</p>
<p>
With the hindsight of a
<a href="https://en.wikipedia.org/wiki/Hindsight_bias"
>Monday morning quarterback</a
>, it is likely that my bladder cancer has been around for a while
but it was always misinterpreted as another stone by me and my
urologists.
</p>
<h3>Christmas 2018</h3>
<p>
In November/December 2018, "the kidney stone pain" came
back but this time the symptoms were a little different. The pain
was the same, there was no visible blood but I had rapidly increased
my daytime trips to the bathroom from 4 to about 10. Again the
urologist couldn't find anything and ordered another CT scan.
</p>
<p>
Before I even had the results, I became incontinent during the night
and my night time bathroom excursions went from never to about 8
times. As a result, I no longer hit deep sleep and felt like I was
shooting a jet lag version of the movie Groundhog Day. It did not
take long to find out that sleep deprivation is debilitating and
often used as a form of torture.
</p>
<p>
The CT scan again showed no signs of stones so this time we had to
look for something else.
</p>
<h3>Prostatitis, Jan 2019</h3>
<p>
The first guess of my urologist was a
<a href="https://en.wikipedia.org/wiki/Urinary_tract_infection"
>Urinary tract infection (UTI)</a
>
or
<a href="https://en.wikipedia.org/wiki/Prostatitis"
>bacterial prostatitis</a
>. My urine contained some bacteria but not clinically significant.
They put me on 6 weeks of antibiotics but the symptoms got worse.
The next diagnosis was non-bacterial prostatitis. The problem with
this is that it has no known cause, there is no test for it and
there is no cure. This was really frustrating as control freaks like
me don't deal well with the "unknown unknown". I think I'm
heading for depression. Prostate cancer was ruled out as my PSA
levels were extremely low and my full bloodwork was clean.
</p>
<p>
My urologist suggested that we should do a
<a href="https://en.wikipedia.org/wiki/Cystoscopy">cystoscopy</a>
but recommended to wait a few weeks as my prostate was very tender.
I told him I understood the possible pain but I would rather know
the state of my bladder and have some pain than to deal with this
debilitating uncertainty.
</p>
<p>
Well, I did that painful cystoscopy a few days later and it turned
out that the inside of my bladder contained a few bumps. The first
words out of my urologist's mouth were: "<em
>that's not cancer!</em
>". Apparently
<a href="https://en.wikipedia.org/wiki/Bladder_cancer"
>bladder cancer</a
>
starts in the bladder liner and grows into the bladder space like a
cauliflower that turns angry red and starts to bleed. This is
typically how it's detected. The liner over my bladder's bumps
looked the same as the rest of the liner. The doctor was puzzled as
he had never seen this in over 30 years. He ordered a CT scan with
contrast and recommended a biopsy just to make sure.
</p>
<a class="btn btn-circle page-scroll" href="#diagnosis"
><i class="fa fa-angle-double-down animated"></i
></a>
</div>
</div>
</section>
<div class="spacer"></div>
<section class="container text-center" id="diagnosis">
<div class="spacer"></div>
<div class="row">
<div class="col-lg-10 offset-lg-1">
<h2 class="pb-2">Diagnosing the Problem</h2>
<h3>Biopsy Number One, 14 Feb 2019</h3>
<p>
Getting appointments was hard at this point since waiting times were
weeks to months. Luckily my urologist is the father of my daughter's
Kindergarten and Elementary School friend. He has been to our house
dropping off or picking up his daughter several times and as luck
might have it, both of our daughters are now in the same university.
He put in the extra effort and cut through the ridiculous medical
bureaucracy. I got a biopsy scheduled within a week, performed by
one of his urology friends (my urologist was not available as he had
to go to some convention).
</p>
<p>
The biopsy however was extremely painful as they damaged my urethra.
Many years ago, I had a kidney stone surgically removed and it took
two four-hour sessions to get the darn thing out. They damaged my
urethra badly and it caused a
<a href="https://en.wikipedia.org/wiki/Urethral_stricture"
>urethral stricture</a
>. This was never an issue for me before but during the biopsy, they
couldn't get the surgical tube through my urethra and probably used
a little force. Bottom line: I was in extreme pain and pied blood
for days. The pain was so extreme that even opioids couldn't mask
it. The most interesting thing about the biopsy was that my second
urologist told me that he "<em>did not think it was cancer</em
>"". But he had to admit he had never seen something like
this either.
</p>
<h3>CT Scan with Contrast Fluid, 20 Feb 2019</h3>
<p>
One week later I got the results of the CT scan. It concluded that
my bladder wall was thickened. It was an "<em
>inflammation not cancerous</em
>"". The scan also confirmed that the rest of the lower
body was in good shape. From the bottom of my stomach down, all
organs were good and the lower lymph nodes were clean.
</p>
<h3>The Day You Get the Call, 27 Feb 2019</h3>
<p>
Your entire life you think about the medial issues you might face
later in life. In my case, there is no known cancer in my family
with the exception of a chain-smoking cousin. Both of my parents and
two grandparents however died of diabetes related heart failure. I
therefore naively assumed I did not have to worry much about cancer
but should focus on heart health and watch my blood sugar.
</p>
<p>
A couple of hours before I had an appointment with my original
urologist (the dad of my daughter's old friend), he was kind enough
to call me and give me the bad news. This time the conclusion was a
high grade, fast growing cancer consistent with traditional bladder
cancer but with a non traditional development. The biopsy was
reviewed by a few pathologists and they all concluded the same even
though there was a hint of doubt as to the type of cancer.
</p>
<p>
I was at work sitting in my office when I got the call and I only
recall the event as surreal and numbing. Strangely enough, there was
also some relief as I finally knew what was going on and I could
imagine a path to recovery.
</p>
<p>
My urologist offered to let this sink in first and come and see him
in a few days or keep the appointment that same afternoon. I kept
the appointment and after telling my wife the results in person (an
emotional moment I dreaded all the way home), we both went to see
him.
</p>
<p>
The recommendation from my urologist was to remove the bladder,
prostate, seminal vesicle and lower lymph nodes (called a
<a href="https://en.wikipedia.org/wiki/Cystectomy"
>radical cystectomy</a
>
and to sweep up remaining cancer cells with chemo afterwards. He did
not perform this procedure himself but the urology group (about 30
doctors) had a few people who did.
</p>
<p>
My basic options were a) go with experience and use a doctor who has
done a lot of them but does it by hand or b) go with a young whiz
kid who has only done them using the
<a href="https://en.wikipedia.org/wiki/Da_Vinci_Surgical_System"
>Da Vince robot</a
>
but might lack experience. I decided to be a rebel and go young. I
already figured out this was a fast moving field and I wanted
somebody who still had two legs in the academic world and could go
robotic. The Da Vince procedure for removal and reconstruction was
developed at
<a href="https://en.wikipedia.org/wiki/Johns_Hopkins_Hospital"
>Johns Hopkins Hospital</a
>
in
<a href="https://en.wikipedia.org/wiki/Baltimore">Baltimore, MD</a>
and having someone from the joystick generation operating the
machine appealed to me. The robot is far more accurate, reduces
recovery time and minimizes side effects.
</p>
<p>
BTW: in this blog, the terms "whiz kid" and "joystick
generation" are terms of endearment and respect. As an older
person who lived his live pursuing innovations, I have the deepest
respect for those who continue to pursue state of the art
developments. In the end, I picked the right team and I will forever
see them as heroes.
</p>
<h3>Colonoscopy, 5 March 2019</h3>
<p>
As luck might have it, I was already scheduled for a colonoscopy.
This was now very important to me as a part of my intestines could
be used as a replacement for my bladder. Obviously, the colon is a
"long way" away from the part that would be used as a
replacement but I have a few colleagues whose colon cancer ended up
in removal of all intestines. I wanted to make sure there was no
cancer in those regions.
</p>
<p>
Initially my gastroenterologist wanted to wait for the result of the
scan and biopsy and canceled my appointment. With charm and
persistence, I got a quick appointment with a Registered Nurse (RN)
at the same office and she got my an urgent colonoscopy within days.
Again the bureaucracy was ridiculous as the scheduler said the next
appointment was in 6 weeks. When the RN put the cancer word on the
table, I got an appointment in 2 days.
</p>
<p>
During previous colonoscopies, pre-cancerous polyps were
found/removed and I was on a 3 year schedule. This time, only 2
small bumps were removed. They were also pre-cancerous and the
doctor put me on the 5 year program. I saw this as good news as
nothing was in the way of getting a "neo bladder" made
from my intestines.
</p>
<h3>On to Urologist number Three, 5 March 2019</h3>
<p>
Since I'm now pushing the medical system to the brink, I had an
appointment with my young urologist on the same day as my
colonoscopy. I fully expected that we would make a plan for removal,
reconstruction and chemo but my doctor had other plans.
</p>
<p>
His first point was that this is war and in war you have to know
your enemy (this is what I heard, not necessarily what he said). He
was not convinced we knew enough about the cancer yet as my cancer
did not start in a traditional way, the pathology was not 100%
conclusive and during the first biopsy they did not get samples from
my bladder's muscle (this is important to determine if we are
dealing with stage 1 or 2).
</p>
<p>
He recommended a second, deeper biopsy and sent the specimens to
high frequency labs where they see more cases like this. The second
military point was that in war, you have to know your own abilities,
and he wanted to know more about me. He ordered an upper body CT
scan with contrast to ensure we did not miss anything and to ensure
my heart and lungs were healthy enough for aggressive treatment.
</p>
<p>
The average age of a bladder cancer patient is in their early 70s
and often these people have other complications and they have to
balance treatment with conditions like diabetes, heart problems or
high blood pressure. The upper body scan came back clean so for now,
I know my cancer is limited to my bladder.
</p>
<h3>Biopsy Number Two, 15 March 2019</h3>
<p>
My second biopsy was one for the ages. Not only did the surgeon have
the same stricture problem as the first one, he also decided to
scrape away most of the cancer cells from my bladder wall. We don't
know why he did that but from the beginning he had stated that if
possible, he would like to save my bladder. I assume his thinking
was that since he's causing all this pain anyway, he might as well
remove the cancer to give him more treatment options.
</p>
<p>
After surgery, he talked to my wife but wisely stayed away from me
as I might have hurt him. For two days the pain was so bad that if
someone had offered a medical coma, I would have taken it. There was
significant bleeding but I guess that was to be expected. Luckily,
I'm still in decent shape and my body recovered quickly. I stopped
taking opioids after a few days and my urine was almost running
clear in a week (it's amazing how fast our body can heal itself).
Like the first biopsy, I had a catheter for one week to make it heal
faster.
</p>
<h3>Update, 20 March 2019</h3>
<p>
My urologist was nice enough to call me with the biopsy results and
not let me wait until the appointment one week later. The second
biopsy confirmed the results of the first one. I have high grade
bladder cancer and this time they confirmed it did spread to the
bladder muscle. This means I have stage 2 cancer and his recommended
procedure is chemo followed by bladder removal/reconstruction. This
is the reverse sequence of what the first two urologist recommended,
but a simple Google search confirmed that the younger generation was
right as that is today's thinking based on solid academic research.
</p>
<p>
My urologist also made an appointment with an oncologist within a
few days and I would start 4 rounds of chemo shortly thereafter. My
big robot surgery will be sometime in July/August. Recovery from
that surgery will be 8 weeks.
</p>
<p>
Since I was already prepared for this after the first biopsy, I'm OK
with this approach. All the uncertainty from the first biopsy is now
removed and the war on cancer can now start for real. I'm definitely
liking the idea of chemo first since it will catch any cancer cells
that might have escaped from my bladder.
</p>
<p>
The last 10 days have been extremely painful. First the bladder
biopsy surgery where an area of 2 by 4 inches was scraped away and
later the catheter that made it impossible to sit, stand or do
anything without pain. Once the catheter was removed I became more
mobile even though the pain is not yet gone. Getting good sleep is
still hard but I do feel a small improvement every day.
</p>
<h3>Update, 28 March 2019</h3>
<p>
I was too optimistic about the fast recovery from the second biopsy.
The last couple of days have been very painful and I'm back on
opioids. I was told this could happen but I assumed it would not
happen to me. I was wrong (again).
</p>
<a class="btn btn-circle page-scroll" href="#chemo"
><i class="fa fa-angle-double-down animated"></i
></a>
</div>
</div>
</section>
<div class="spacer"></div>
<section class="container text-center" id="chemo">
<div class="spacer"></div>
<div class="row">
<div class="col-lg-10 offset-lg-1">
<h2 class="pb-2">Chemotherapy</h2>
<h3>Meeting the Oncologist, 29 March 2019</h3>
<p>
I had my first meeting with the oncologist and I now have a
treatment plan for my chemo. Apparently there are two different
treatments for my cancer. The better version is more aggressive and
is only tolerated by one in twenty patients. So, as one of the
younger victims, I've been nominated for best of class treatment and
will undergo
<a href="https://en.wikipedia.org/wiki/Chemotherapy_regimen"
>MVAC chemotherapy</a
>. The letters in this acronym stand for four different chemical
with impossible names. I've decided it stands for "<em
>My Very Aggressive Chemo</em
>".
</p>
<p>
MVAC is administered in two steps. I'll get M on Thursday during a
one hour session, and VAC on Friday during a five hour session (yes,
five hours of chemical warfare). This process is repeated four times
every two weeks. The only exception will be the last round. It will
be delayed by another week so I can attend my son's college
graduation ceremony.
</p>
<p>
So the good news is that everything will go faster than expected and
the outcome will be better. The disadvantage is that it will be more
miserable. It also means that my bladder removal and reconstruction
surgery will also be sooner than expected.
</p>
<h3>The Week before Chemo, 3 April 2019</h3>
<p>
Apparently Mr. Murphy is never far away. About 10 days before my
first round of chemo, I started to have pain in my urinary tract.
Initially this was dull but it became so bad that I cold no longer
sit or lay down without major discomfort. To make matters worse, my
wife and I had planned a trip to see our kids (who are in college)
before chemo starts, and although it was great to see them, the pain
was dominating the whole trip.
</p>
<p>
<img
class="rounded img-fluid"
src="img/cancer/IMG_6752.jpg"
alt="introduction"
/>
</p>
<p>
On the way back home, I noticed that my urine was also very cloudy
which made me believe I had an infection. Quickly playing Dr Google
confirmed that all my symptoms lined up with a UTI. Given that I
still had antibiotics left from that long "none prostatitis
treatment", I decided to self medicate (kids listen to me,
never do this at home). With long chemo sessions around the corner,
it was important that I could sit without discomfort so I decided to
see the urologist or a RN.
</p>
<p>
Sure enough they found a "mixed fauna" in my urine but not
enough to conclude it was a UTI. Luckily, the RN did prescribe more
antibiotics and the pain stopped just in time for chemo round one. I
clearly dodged that bullet even though they did not think it was a
UTI. Obviously I did not tell them about the self medication.
</p>
<h3>Chemo Round One, 8 April 2019</h3>
<p>
Last week, I had to complete three things before I started my chemo.
Firstly I had to get a
<a
href="https://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter"
>PICC</a
>
line installed. This is a permanent port they use to draw blood and
inject the chemicals. The line starts in your arm and ends just
before your heart so the chemicals are immediately dispersed through
your entire body. The other advantage is that they don't have to
poke you every time. It will stay there for 8 weeks.
</p>
<p>
The second thing was a 45 minute heart echo. My CT scan and EKG had
shown that my heart was good, but the oncologist wanted to make sure
it could handle the nasty stuff. I passed that test with flying
colors and the nurse even joked that I could make money on the side
modeling my heart.
</p>
<p>
The last bit was the chemo training. This was very useful as a nurse
explained the process, the chemicals, and the do's and don'ts. So to
my surprise, I'm not just doing the 1 in 20 MVAC, I'm doing the
accelerated or "dose dense" version. Normal MVAC is every
4 weeks, the accelerated version is every 2 weeks (lucky me). The
sales pitch is that your body has less side affects if you do it
faster (don't ask me about that logic).
</p>
<p>
So right after the chemo training, I entered the chemical warfare
room and got my M chemical. Not a big event as it was over in 30
minutes with no side effects. On Friday however, I did my VAC
chemicals which was advertised as 5 hours. Just like any good
airline, we had some delays and the entire journey took 6 hours and
45 minutes.
</p>
<p>
The amount of stuff they put in me was ridiculous (it must have been
over 3 liters). First saline to hydrate me, then anti-nausea
medication followed by a bag full of steroids. Finally it was time
for the V chemical. At this point, three nurses showed up with a box
full of bags (everything I needed for the rest of the treatment) and
they spent 5 minutes checking serial numbers, quantities, expiration
dates and matches with my wristband. Given that this stuff is nasty
and dangerous, I had to appreciate their attention to detail but at
one point, I could not help myself and feel like a prisoner on
death-row.
</p>
<p>
<img
class="rounded img-fluid"
src="img/cancer/IMG_0108.png"
alt="the tree"
/>
</p>
<p>
The A and C chemicals are really bad apparently as my kidneys had to
be flushed with 1 liter of saline after the A and half a liter of
the C to avoid damage. So after almost 7 hours I left the place and
although I was tired of sitting, I did not feel any different.
</p>
<p>
All of this changed on Saturday when my energy level went down very
quickly. By the time Sunday came around, I was hitting a wall and
was sleeping most of the time. Monday morning I started to feel
better although the progress was very slow.
</p>
<p>
The best way to describe the treatment so far is to be hit by the
worst flu ever but without the fever. Every muscle and joint aches,
you have a slight headache, no energy or appetite and you sleep a
lot. Nausea was minimal but the additional pills they gave me,
controlled it nicely. The biggest issue I have right now is that I
can't concentrate. A five minute conversation knocks me out.
</p>
<p>
So overall as the optimist, I can't complain too much as many people
have far worse symptoms. I know I still have three sessions to go
and think it will still get worse. Nevertheless, I still feel good
about the outcome. I did not pick this fight but I will win this
war.
</p>
<h3>Recovering from Chemo Round One, 17 April 2019</h3>
<p>
Recovery from the first round of chemo has been a rollercoaster.
Four days after the chemo session I started to feel better, but good
and bad days would alternate for another 4 days. It wasn't until one
week after the chemo that I really improved and was eating well
again. Actually, I was eating so well that I even gained weight.
</p>
<p>
We were told that I would most likely not lose all my hair but that
it would thin out. This did exactly happen during the first round of
chemo. When I washed my hair, little bits came out but not much. The
other noticeable thing is that my hair is getting thinner and
softer, and my facial hair has decided to slowdown growth. Less
shaving for me for a while.
</p>
<h3>Chemo Round Two, 23 April 2019</h3>
<p>
One day before the second round, I had to do blood work to see how
my body recovered from the first round. I passed that test with
flying colors, so I'm ready for round two.
</p>
<p>
The other good news was that I could move my chemo treatments to 8
o'clock in the morning, right as the office opened. The good part
about this is that the doctors don't start working until 9 o'clock
so the waiting rooms are empty. I think I was patient number three
so from the moment I got into the building, I was hooked up to my
lovely concoctions within 10 minutes. The entire process took less
than 5 hours which was a vast improvement over the 6 hours and 45
minutes of the first round. I've scheduled rounds three and four at
8 o'clock as well.
</p>
<p>
<img
class="rounded img-fluid"
src="img/cancer/IMG_0124.png"
alt="infusion center"
/>
</p>
<p>
Round two was different from round one. This time there was no
honeymoon period as my body immediately recognized what was
happening and even on the Friday a few hours after the treatment, I
already started to go down.
</p>
<p>
Tiredness, muscle and joint aches, lack of concentration and that
general flu sensation were the same. What was different was the
nausea and I was not able to control it with medication on Sunday or
Monday. Luckily, Tuesday morning things turned around and I started
to feel a little better. In under 3 days I lost 5 pounds and a lot
of hair.
</p>
<p>
Hopefully I can strengthen over the next 10 days so I'll be ready
for round 3.
</p>
<h3>Recovering from Chemo Round Two, 26 April 2019</h3>
<p>
Round two has been different than round one. This time there was no
rollercoaster but the intensity was greater in terms of tiredness
and nausea. One week after the chemo, I can clearly feel my strength
coming back and I have yet again some color in my face. I assume my
white blood cell, red blood cells and platelets are making a strong
comeback.
</p>
<p>
The biggest difference however has been my hair as I started to lose
it rapidly leading me to take drastic hairstyle measures. Funny
enough, it only affects hair on top of my head and the rest of my
body is (still) normal.
</p>
<p>
<img
class="rounded img-fluid"
src="img/cancer/IMG_0304.png"
alt="hair"
/>
</p>
<h3>PICC Line Drama, 27 April 2019</h3>
<p>
As I mentioned earlier, I had a
<a
href="https://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter"
>PICC</a
>
line installed in my upper left arm. This line is nothing more than
a small tube that enters my upper arm and runs to my heart so that
the dangerous chemicals can be distributed quickly through my entire
body instead of lingering near an entry point where they could
potentially damage tissue. The only thing that sticks out of my body
is a small tube with a port on it that they connect to an infusion
line when required.
</p>
<p>
Every week on Wednesday, the entry area has to be disinfected and
they put a very sticky antibacterial gel and a see-through cover on
it so the entry wound can be monitored easily. White mash netting
that looks like a bandage is put over the whole thing to hold the
dangling port in place. As I don't feel or notice it much, I got
into the bad habit of not checking the entry wound every day.
</p>
<p>
Today as I took a late shower, I noticed a lot of blood around the
wound covering the entire area of the clear bandage. This spooked me
a little and had to seek help immediately. With my luck, it was now
Saturday evening and the only option was an Emergency Room (ER).
Luckily it was early in the evening so the ER was still quiet. The
crazies, the intoxicated and the gunshot victims would likely arrive
much later.
</p>
<p>
After being checked by multiple doctors and nurses, they concluded
that the clip on my arm that holds the line in place was not mounted
properly during Wednesday's cleaning and caused the line to move a
little and start the bleeding. Remedy was simple: take all the stuff
off, clean it well and reapply new disinfectant gel and cover it
back up.
</p>
<p>
Well, that was easier said than done as the ER did not have the kits
to treat PICC lines available and none of the nurses had actually
done it. Problem one was easy to solve. The infusion center that
cleans my PICC line is literally next door to the ER and it's
operated by the same organization. Problem was that it's locked.
Luckily an American ER has security guards on duty to deal with out
of control patients and I was able to convince the nurse to convince
the guard to break into the infusion center and get the right
supplies.
</p>
<p>
The second problem was more interesting. The nurse who did the
cleaning had only seen a PICC line in training many years ago and
wasn't too comfortable. As I witnessed 5 cleaning sessions already,
I was able to coach her through the process and get all the right
bits in the right place while keeping everything sterile. Lesson
learned: always look at medical procedures performed on you. You
never know who you might have to coach through the process.
</p>
<h3>Hair Style Fun, 28 April 2019</h3>
<p>
After I posted my new "badass" hairstyle on the blog, I
got a lot of very nice reactions that, for a bit, drew attention
away from my war on cancer.
</p>
<p>
The first good reaction came from a dear friend in California. She
noted that I totally ROCKED the new style and that I looked like a
badass MARINE or NAVY SEAL. Luckily her husband stepped in quickly
and put the word (RETIRED) in that sentence followed by another
friend pointing out that I might look like a Navy Seal but not the
one that's on trial for war crimes. Thank goodness for that
clarification.
</p>
<p>
My family in the Netherlands had a different view as they compared
me to rock stars like Peter Gabriel and Billy Joel. If you read
<a href="index.html">my main web page</a>, you quickly realize how
fitting that was.
</p>
<p>
<img
class="rounded img-fluid"
src="img/cancer/IMG_0703.jpg"
alt="rockers"
/>
</p>
<p>
My own children, who used to binge watch Breaking Bad on Netflix,
saw a resemblance with the lead character Heisenberg (but without
the meth lab off course). As a result, I'm no longer a
"badass" but rather a "Breaking Bad ass". This
inspired my wife to take the appropriate pictures.
</p>
<p>
<img
class="rounded img-fluid"
src="img/cancer/IMG_0704.jpg"
alt="breaking bad ass"
/>
</p>
<p>
So in a few simple days I went from just another guy with cancer, to
a badass (retired) Navy Seal (that did not commit war crimes), to an
aging rocker, to a Breaking Bad Ass. Not a bad three day
transformation.
</p>
<h3>Chemo Round Three, 1-10 May 2019</h3>
<p>
From the beginning, I was told that successive treatments would be
worse in terms of side effects. I my case, this is definitely true
as I hit deeper lows that also lasted longer. In order for this blog
to be useful to future patients, I'll give a day by day summary of
my round 3 journey so other people can benefit form it later.
</p>
<ul>
<li>
<strong>1 May</strong> - This is the day before the two day
treatment and my body already knew what was coming. Most of this
is a mental game with physical side effects. When I did round 1, I
didn't know what to expect. Round 2 was worse (certainly in terms
of nausea) so now my mind is wondering how bad it will get in
round 3. Stupidly enough, I already started to feel queazy before
a drop of chemicals was administered as the mind was dominating
the body.
</li>
<li>
<strong>2 May</strong> - Day 1 of treatment started with a blood
test, followed by a consult with a physician's assistant, followed
by treatment with the M chemical. The results of the blood test
were good with the exception of white blood cells. Instead of them
being a little low, they were actually a little high which could
indicate an infection. As I did not have a fever, they didn't seem
to be too worried but in an abundance of caution, they put me on
five days of antibiotics anyway. The pre-drama queasiness
continued, reenforcing the notion that it truly is mind over
matter.
</li>
<li>
<strong>3 May</strong> - Day 2 of treatment started really bad as
I did not sleep very well. I think there was an element of anxiety
and nervousness but I basically started the day with nausea before
the drugs were even administered. The one good thing about been
tired is that I slept through most of the 6 hours of treatment
with the VAC chemicals but when I came home I was exhausted and
the queasiness became worse. I could feel a very fast downward
trend coming up. May 3rd is also our 31st wedding anniversary. My
wife and I agreed to celebrate double next year.
</li>
<li>
<strong>4 May</strong> - Going down hard! As described earlier,
it's mainly a bunch of flu symptoms like muscle aches, painful
joints and general tiredness. The difference with the flu is that
the symptoms seem to be more severe. Sleep is the only remedy.
</li>
<li>
<strong>5 May</strong> - Here comes the nausea! This was a really
bad day as I couldn't eat or drink anything and I could feel a
strong mental decline. People around me want to help me so badly
but even their attempts were hard to handle. I just wanted to be
left alone even though it is very hard to send away loved ones
that just wanted to help.
</li>
<li>
<strong>6 May</strong> - This was by far the worst day of round 3.
The discomfort in terms of tiredness, muscle and joint aches,
nausea and lack of energy continued. This was probably the first
day in this journey where I lost my positive attitude. It was so
bad that my stupid brain couldn't even see how this could ever get
better. On top of that, I still couldn't eat or drink, making my
situation probably even worse. This was one of those days where
you could hear people say with sufficient drama: "if this
continues, I would rather die".
</li>
<li>
<strong>7 May</strong> - Physically, I think this was the day
things started to improve slowly. Mentally though, my brain didn't
spot this yet as I was too busy feeling sorry for myself. Luckily,
I did sleep a lot so the day went by quickly.
</li>
<li>
<strong>8 May</strong> - More improvements were now noticeable and
I started to come out of my mini depression. I did however have to
distract myself as any reminders of cancer, chemo or the treatment
made me feel physically ill.
</li>
<li>
<strong>9 May</strong> - Hope and a positive attitude came back as
the improvement are now coming a little faster. I slept a lot less
and had my first decent food in a few days.
</li>
<li>
<strong>10 May</strong> - This day I was supposed to attend the
farewell lunch of one of my dearest colleagues at an Indian
restaurant. Normally, I would be the first to show up for a spicy
curry but the notion of Indian food smells was so off-putting that
I had to cancel my participation. Overall physical and mental
improvements are there but not as fast as I would like them.
</li>
<li>
<strong>11 May</strong> - This was the first somewhat normal day
in round 3. I had regular (small) meals, slept for only 30 minutes
during the day and the tiredness was bearable.
</li>
<li>
<strong>12 May</strong> - After neglecting this blog for almost 2
weeks, I finally had enough energy and sufficient attention span
to write a few entries. Even thinking about this blog triggered
queasiness. I now have one week to get strong enough for my son's
graduation and 2 weeks before the final (and probably most awful)
round of chemo.
</li>
</ul>
<h3>PICC Drama, the Sequel, 9 May 2019</h3>
<p>
I'm not having much luck with my
<a
href="https://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter"
>PICC</a
>
line. Yesterday was my weekly PICC line cleaning and while taking a
shower just before I went to the Infusion Center, I noticed that my
left arm was swollen and discolored. The entire arm was more red
with a purplish hint. Clearly this was not a good sign and on top of
it, the area around the PICC line entry wound looked more red than
before.
</p>
<p>
The nurse at the Infusion Center was very good and took action
immediately. She got the opinion of a few other nurses and then
decide to call my oncologist directly. Collectively they decided
that there was a risk of an infection or even blood clots. My
oncologist told the nurse that he would order an ultrasound of my
arm and some other tests to see what the problem was. I should be
contacted within 24 hours. The nurse did clean the area just in case
and put on a clean bandage.
</p>
<p>
As I mentioned before, I've been very happy so far with the medical
treatment but the administrative side remains an abomination. As
expected (and even predicted by my good nurse), I never got a call
so I had to become proactive again. As usual, it was hard to get
passed the automated telephone system and the unpleasant pitbull
operators but I managed to get in touch with a scheduling secretary
as well as a triage nurse. True to form, the secretary was useless
and even rude while the nurse was helpful and saw the potential
dangers. I had an appointment within 2 hours.
</p>
<p>
Medical staff quickly took my vitals and ruled out an infection due
to the normal temperature and other vital signs. The ultrasound of
my left arm did however show that I had two blood clots. One in my
upper arm and one in my armpit. Unfortunately, Thursday is the day
off for my oncologist but the nurses tracked him down somewhere on a
golf course and got his guidance. These nurses are saints and if the
administrative staff was half as human as them, the world would be a
better place.
</p>
<p>
The doctor's recommendation was not to panic, put me on blood
thinners for 3 months and monitor closely. "3 months", I
asked? I never got a good answer but I suspect the pharmaceutical
industry is behind it as this new drug that I was given is
expensive. They gave me 30 days free (a $950.00 value) so they
clearly have to recoup their "generosity" in the following
months. Who knows what the second and third month will cost? Good
news for me is that my bladder removal and reconstruction is within
this time window and they clearly don't want you to be on blood
thinners during 9 hours of internal surgery. Hopefully, these blood
clots don't mess up my schedule as it's starting to look like I
spent more time on side effects of side effects rather than dealing
with the real problem. It would be highly ironic if you die from a
side-effect's side effect when trying to save your life from an
aggressive cancer.
</p>
<p>
The one remaining issue was the red area around the PICC line. Given
that there is a three week window between chemo rounds 3 and 4 (due
to my son's university graduation), I was in no mood for more risks.
Imagine another complication on graduation day? No, thank you. I
therefore convinced the nurses to remove the PICC line and accept
having to get a new one installed just before chemo round 4. The
nurses thought this was a great plan but needed approval from the
oncologist. His golf game got interrupted again and he agreed.
</p>
<p>
Update (3 days later): The PICC line removal was simple and
painless. I did have some bruising for a few days but that was to be
expected as they use serious pressure to stop the bleeding. The
entry wound is healing quickly and the redness is almost gone.
</p>
<h3>More Side Effects, 13 May 2019</h3>
<p>
Well, I concluded too quickly that I was done with side effects. The
medication prescribed to treat my blood clots caused my bladder to
bleed again. Because of all my kidney stones, I had learned that it
doesn't take much blood to make it visible in your urine. My urine
however wasn't just tinted red, it was red and looked like pure
blood (a slight dramatization).
</p>
<p>
So here comes "Deja Vu all over again". I first called the
urologist and was once again greeted by an automated telephone
system and unpleasant pitbull operators. They told me it was not
possible to just walk in and I would get a callback from a nurse. My
second course of action was to call the oncologist and with a little
extra drama in my voice, I was able to talk to the triage nurse and
was asked to come in immediately.
</p>
<p>
As always, the oncology medical staff was efficient and very
helpful. Not only did they think that the bleeding was exacerbated
by the blood thinners, they actually suspected a Urinary Tract
Infection (UTI) as my white blood cell count was very high. I was