So, yes, I am
officially a PWC. Person With Cancer. The tumor that was removed from
my brain is called a glioblastoma, a grade 4 tumor. It's the most
aggressive form of malignant brain tumor.
More on that
later. For now, let's step back in time in case you haven't been
keeping up on social media with my medical odyssey. And this is going
to be long, because it's the first time I've set down everything
that's gone on in the last three months. If you reeeealllly need to
just get to the cancer detail, click on this "
after the jump" link.
I sat down and
started eating dinner on April 8th when I noticed the left side of my
face becoming numb, followed by spasms or twitches in the same area.
I called my brother Andy to ask him to take me to the emergency room,
and as soon as I hung up with him the spasming stopped and the
feeling returned to my face. The whole thing lasted maybe five
minutes. Thinking it was perhaps a food allergy, I didn't go to the
ER that night. I saw my primary care doctor the next day. He said it
was probably a transient ischemic attack, commonly called a
mini-stroke, and told me I needed to see a neurologist. Late that
afternoon, I woke from a nap and it happened again. It didn't last as
long but I knew I had to go to the hospital. Of course, being me, I
took the bus (SEPTA route 84 to Aria Torresdale).
I was admitted and
an MRI was done the next day. The diagnosis was that I had a small
stroke. I was put on aspirin and plavix, a blood thinner. In
addition, I was diagnosed with Type 2 diabetes. So that meant two
more prescriptions (glipizide and metformin) as well as checking my
blood sugar daily and changing my diet to limit my intake of
carbohydrates (which converts into sugar in the body), and they put
me on lipitor for my cholesterol (which I have never before been told
was a problem). Adding to the synthroid I've been taking for a couple
of years now (underactive thyroid), that makes six different
medications daily.
(A diabetes note:
I'm not 100 percent convinced I have it, or at least that I need that much
medication. I feel like the numbers on the A1C test, which gives a
record of your blood sugar over the last 6 months, were unusually
high because at the end of December I went back to work at LIHEAP
and, with the travel time on SEPTA being so long, my eating habits
became much worse than they already were. I'm having follow-up blood
work done next week and then seeing my primary doctor, so we'll see
how it stands.)
The spasms in my
face continued on a daily basis, even multiple times daily, at
varying intensity but always brief. The doctors felt it might be
muscular in nature but saw no other reason to keep me in the
hospital. So I was released after a three-day stay. For the next two
weeks they would ebb and flow, sometimes seeming like they were
fading away entirely until a stronger one would hit. On April 25, a
Saturday, I had an episode about noonish, and then a second, stronger
one while I was out having lunch and shopping. At around 5:30 it
happened again, but even stronger, and at first it didn't seem like
it was going to stop. I got really scared and called 911. The
operator had trouble understanding me because the spasms affected my
voice. I was telling her "I think I'm having a stroke" and
she had no clue. I tried yelling "STROKE! STROKE!" but it
sounded like Scooby-Doo was saying "ROKE! ROKE!" She
connected to (I think) the dispatcher and, as they were sending an
ambulance, the spasms finally stopped and I was able to be understood
again. As soon as they hung up, the ambulance arrived.
The neurologist
who saw me in the ER was not there in person but via video feed.
(Gotta love the health system where one specialist has to cover
multiple hospitals from a camera.) He said the spasms were actually
focal seizures, seizures in one specific area as compared to grand
mal seizures than someone with epilepsy has, and that they can occur
when someone's had a stroke. This time I was released the next day
and put on keppra, an anti-seizure med. (Medication list increased to
seven items; in my most recent hospitalization they put me on blood pressure medication but now I'm off the plavix and aspirin for good so we're back down to six.)
On May 19th I had
an outpatient visit with a neurologist, who doubled my keppra dose
because the focal seizures hadn't really been affected by the
initial, more mild dose. I was scheduled for a followup in early
July. After a while, the spasms in my face were not as strong, and
not happening as often, and some days didn't happen at all. It seemed
like things were going well. My speech still sounded a little funny,
though, and then things got worse as we got into the middle of June.
My left hand
became weak and I had a sensation of lost feeling in my fingers. I
couldn't hold on to things, especially small items such as keys.
Every time I was going into my house, I'd have trouble grabbing the
keys out of my left pants pocket, and then holding them once I did
get them out. Turning doorknobs or water faucets or lids on bottles
with my left hand got more and more difficult. My speech seemed to
get worse. I lost the ability to type. I constantly hit the wrong
keys with my left hand. Using my cell phone, awkward enough to begin
with because of its size (Samsung Galaxy Note 4), became a problem. I had
trouble holding it with my left hand while tapping the screen with my
finger on my right hand, and when trying to grip it more securely my
thumb and forefingers on the left hand moved to the screen and
inadvertently hit icons, and generally interfered with whatever I was
trying to do. Or if I was on a phone call, my arm would slip and the
phone would move away from my face.
On Tuesday, June
16, I called the outpatient neurologist and asked if I could move up
my scheduled July appointment. By some miracle, they had an opening
the next day. That afternoon I tried filling out a form (in the
old-fashioned way, with a pen). I was constantly misspelling words,
reversing letters and making a general mess of the form. I went to
the neurologist the next day and he said I probably had another
stroke. He wrote out instructions on his prescription pad for me to
get an outpatient MRI and to start physical therapy with Moss
Rehabilitation Center, but because they thought I might need a
referral from my health insurance company, I had to go home and wait
first. Walking to and from the office, bus stops and my house, I
noticed my left foot was dragging. I wasn't taking full steps the way
I was with my right foot. I got home and fell asleep in front of the
TV. When I woke up, I saw that I had a voicemail. It was the
neurologist's office, saying that they didn't need prior approval
from my insurance and asking me to call and get the phone numbers to
schedule the outpatient MRI and rehab. I had trouble even placing the
call -- hit the wrong buttons and even dialed a wrong number once.
When I did dial correctly, the office was closed for the day.
I knew I couldn't
wait. I was getting worse and who knows how soon that MRI could've
been scheduled? I called my brother and went back to the ER.
The hospital
protocols, for some reason, do not allow for MRIs to be done for
people in the emergency room. You have to be admitted first. So they
did a CAT scan, and once they saw that result I was admitted to the
Neuro ICU. (This meant I was constantly hooked up to a heart monitor that wasn't portable and a blood pressure cuff that recorded my BP hourly, as well as
regular checks of my temperature and blood sugar. Sleep was very
difficult at first, although it got a little easier each night. Every
time I needed to use the bathroom I had to let the nurse know so they
could unhook me. That was a pain, but the worst was yet to come. I
had great nursing care up until the last night.) The MRI the next day
confirmed that I indeed had a tumor that had to be removed and there
was edema, or swelling. But first I was put on a steroid, administered through
the IV line, to reduce the swelling, and taken off the aspirin/blood
thinner meds for 5 days before the surgery.
This diagnosis
actually made me very, very happy. A stroke? Going through therapy to
try and function and "re-learn how to do things" and
whatever would be awful, time-consuming, frustrating. A tumor
(cancerous or not) causing all my issues? Cut it out and I'll get
back to normal? Awesome! I was already noticing improvement just from
the steroids reducing the swelling.
On Monday, June
22, the afternoon of my 5th full day in the hospital (and the 6th
anniversary of the establishment of this blog, although with the lack
of posts recently...), after doing another MRI to create a detailed
"map" of the area of my brain where the surgery would be
done, I was whisked off to surgery. Various people were introducing
themselves and explaining why they were there, and the
anesthesiologist then took over. I went out rather quickly. I
remember a moment where I was dreaming. It was nothing memorable,
just some conversation, but it seemed pleasant enough.
A moment later
there were bright lights and everyone screaming at me almost
simultaneously. "JOE! SQUEEZE MY FINGERS! JOE! RAISE YOUR LEFT
LEG! JOE! LOOK UP! LOOK DOWN!" and so on. And then I was whisked
back to my room in the Neuro ICU. And I had a very uncomfortable
sensation in my groin. As it turned out, while I was under they
removed my shorts and underwear and inserted a catheter, which stayed
in place all night. That night was very difficult. The next day the
catheter was removed and I was allowed to eat again, and I was
feeling better immediately. The followup MRI looked excellent. The
neurosurgeon removed virtually all of the tumor. I was told based on
the type and location that it was likely cancerous but it would have
to be confirmed by the pathology report. But I could tell immediately
that my brain was starting to fully function properly. I was able to
hold things in my left hand longer -- even my phone. I could walk
without my left foot dragging. I sounded more coherent. I could write
words and spell them correctly.
So, if you've ever
been hospitalized you know that besides the nurses, doctors are in
and out almost constantly. I'm pretty sure some of these visits have
no purpose but to get their names on the record so they get a cut of
the amount being billed. Anyway, the following day (Wed. June 24),
the entire morning and into the early afternoon, no one had come in
except for a speech pathologist. She watched me eat and drink, and
administered various tests -- word puzzles, brain teasers, memory
stuff, then had me write down my name and address and write out a
phony check -- to verify that my brain was working. It was, and still
is (all you wiseasses can just shut up now). A little after two that day
a neurosurgeon came in and examined me, and upon hearing of the
speech pathologist's assessment, said that they just needed someone
from physical therapy to watch me walk up and down steps, and once I
passed that test they could move me to a regular room or even send me
home. I was thrilled!
Except no one from
physical therapy ever showed. I figured one more night wouldn't kill
me. Just after 8 pm the nurse assigned to my room for that night came
in and told me that because more patients were coming in and they
needed the room, they would be moving me to the "step-down
unit." I asked what that was. She said I would only need the
blood pressure checked every two hours and they would put me on a
portable heart monitor, so I could get up to use the bathroom. I
asked if it was still a private room (like every room I was in during
my three hospitalizations) and she said she wasn't sure, but I could
sort of tell it wasn't. I told her I had the possibility of going
home but the physical therapist didn't show, and that if I was not
comfortable in this step-down unit that I was leaving, against
medical advice if necessary. (Around this time my brother Tony texted
me that he was on the way over to visit and I told him he might get
to take me home.)
The nurse
disappeared for a while. Finally she and an orderly returned to wheel
me to the step-down unit, a short way down the hall. It was a larger
room which could hold two beds, with curtains for privacy and a
shared bathroom. The other side of the room was empty, so I decided
it was okay. Five minutes later they wheeled someone else into the
other side.
He wasn't a
problem, although he got chatty with every nurse or aide who came to
see him. He was in a bad auto accident and hadn't really gotten out
of bed yet. But in the unit across the hall were two men. One moaned
in pain and called out for help or for his mother or for others
constantly, while the other begged and pleaded for him to shut up.
This went on ALL. DAMN. NIGHT. Between that and the nurse's aide
coming in to check my vitals I could not fall asleep. I became more
and more annoyed and even listening to music on my phone (with
headphones) did not help.
Note above that I said
"nurse's aide." I had a nurse assigned to me but other than
when I first got into that unit, the idiot only came to see me twice.
The first time was at 4:30 am. Just when I finally started drifting
off into what might have been an hour or two of sleep, I was startled
back into consciousness as she stood at the foot of my bed. "I
noticed that they wrote down for you to use these compression wraps
on your legs for your circulation." (I had these in the other
room. They're plugged into a unit that compresses and decompresses
them regularly to keep your blood flowing. They didn't move them with me to this unit.) She continued: "We could put them on you for
the night and during the day--"
"I will NOT
be here during the day. I am getting out in the morning no matter
what it takes."
"Oh...um,
well, they also wrote down that you could wear compression stockings,
which go on your legs--"
"I don't need
those. The wraps will be fine."
She left -- and
never brought back the wraps or the stockings! She interrupted my
final, desperate attempt at sleep for nothing! She did return one
more time, before her shift ended, with some paper. "I brought
you some information on synthroid." Why she picked that, and not
any of the other meds, including those they put me on just since June
17th, I have no idea.
"I've been on
synthroid for years. I don't need that."
"Oh...well,
it's just because of the government."
At this point I
wanted to completely explode, and perhaps throw her out a window.
Somehow I managed to stay composed and told her "just leave it
if you have to." She did, and I never saw her again. I used one
page as a bookmark for the "Afterlife with Archie" graphic
novel I read later in the morning, and left the rest behind.
Finally, the day
nurse came in for the first time and before she could do anything
other than introduce herself I immediately began my controlled rant
(not these exact words, but close): "I could have possibly been
sent home yesterday except no one from physical therapy showed up,
and then I was moved into this unit where the man across the hall
moaned all night and the other man kept telling him to shut up, and I
did not get ONE SINGLE OUNCE OF SLEEP all night." (I may have
mentioned the other nurse being a moron. I'm not sure.) "So this
is what's going to happen: I'm going to eat breakfast and get cleaned
up. Then the physical therapist will come and see me walk on the
steps, and then the doctors will discharge me and you'll take all
this stuff (heart monitor leads, IV lines) off and I will leave. This
will all happen by noon or I will walk out and you will not stop me.
This is not up for discussion or debate. I am leaving by noon."
They got the
message and I was out by noon.
So in the last
week and a half I've gotten stronger and stronger. My hand is nearly
fully functional. (Just look as all this typing!) I am very close to
100 percent back to normal. My speech still sounds a little off, but
I certainly can be clearly understood, and there may be a little
droop remaining on the left side of my face but that's it.
