Elephants and Tea - June 2022 - 38

Dear Cancer...
LIZ HILES
Dear Bladder Cancer,
I have so many mixed feelings about you. I
didn't even know bladder cancer was a thing
until the moment I was diagnosed with it. I
am angry that you are so common, but no one
is talking about you.
You hit me upside my head, out of the
blue. Bladder cancer is not talked about,
so I had no clue what the symptoms were
or the risks. I was unaware of any possible
family history of bladder cancer. I didn't
know that bladder cancer is considered the
cousin of prostate cancer, or that women in
families with a history of prostate cancer
have a higher risk of getting bladder cancer.
I don't understand why I had to fight for
two years to get the medical community to
take my complaints and symptoms seriously.
I complained about frequent urination
and bladder spasms, which were ignored.
I returned to the emergency room doubled
over in pain and complaining about
urinating blood clots only to be asked if
it was really my menstrual cycle. I don't
understand how I was asking for help and
testing and was still ignored to the point that
my diagnosis came when I was at stage 3b
with a tumor the size of a baseball growing
through my bladder wall and starting to
attach to my cervix.
I don't understand why you made me
struggle. I don't appreciate the hell you
have put me through for the last three years.
Treatment was a brutal ordeal for me.
First, I had to get a temporary nephrostomy
tube to save my kidney since my tumor was
blocking it from draining properly.
It was held in by one stitch. The
pain was unbearable, and I could
not sit or lay comfortably with it.
I needed pain meds just to make it
through the day and get some rest.
Normally, I would do everything
possible not to take painkillers, but
by that point, I could not think or
sleep without them.
Next was my procedure. Radical
cystectomy with radical hysterectomy
and removal of my pelvic
lymph nodes. I had massive complications.
I was supposed to be away from
my home for three weeks. The complications
caused me to be away for two months. They
had problems getting IVs in me, so I ended
up with a central line, which in turn gave
me a bacterial infection. I felt even closer
to death at that point.
I also ended up with an internal abscess
" Yet, I have some things to be thankful
for due to bladder cancer as well. I
have met some amazing friends
because of cancer. I lost a couple
as well. I have an amazing medical
team now who takes great care of me,
listens to me, and includes me in the
discussions of my treatment. "
and fluid collection in my abdomen. Drains
were put in, causing even more pain-immense
pain-as they ended up hitting
nerves where anytime I moved, pain shot
through my entire body. I was moved back
and forth from the hospital and rehab facility
over roads that jarred my entire body
and caused more pain.
By the time I was released, I had just
enough time to enjoy my birthday and
Thanksgiving. The week after Thanksgiving,
I saw my oncologist in the office, got
my port, and started chemo.
At the time, I thought that the procedure
was going to be the worst part of things. Boy,
was I wrong. The dense doses of MVAC I
received broke me even more. I was barely
able to make it to my treatments. I got to
the point where I did not feel safe driving
myself. Even the thought of food nauseated
me. I looked around at all the flip phones
in the chemo suite and at all the people
who were much older than I. They were
nicely dressed, the women had makeup on
and were talking about plans for lunch or
dinner with friends and family. I was in a
wheelchair and needed assistance getting
to the bathroom.
I was scheduled for six rounds. I completed
four on schedule. The fifth was pushed
back a week. The six was canceled. I never
got to ring the bell. I was grateful to have
that last round canceled. My body was
screaming " UNCLE! "
To this day, I am still not sure how I
managed to stay on my own at home for as
long as I did. After my fifth round, I was too
weak to get back up the steps of my apartHATEFUL
YET THANKFUL
DEAR BLADDER CANCER, I WOULD NOT WISH YOU ON ANYONE
LIZ HILES WAS BORN AND RAISED IN CINCINNATI, OHIO, AND HAS BEEN INVOLVED
IN ADVOCACY SINCE HER YOUTH. SHE WAS DIAGNOSED WITH STAGE 3B BLADDER
CANCER IN AUGUST 2016 AT THE AGE OF 40, AND SUBSEQUENTLY HAD RADICAL
SURGERY WITH A UROSTOMY PLACEMENT, GIVING HER MORE CAUSE TO
ADVOCATE. HILES DOVE INTO ADVOCACY AND ENDED UP CHANGING HER CAREER
ASPIRATIONS BECAUSE OF HER DIAGNOSIS. IN ADDITION TO SERVING ON THE
STEVEN G. CANCER FOUNDATION AND ELEPHANTS AND TEA MAGAZINE'S PATIENT
ADVISORY COMMITTEE, SHE IS INVOLVED WITH SEVERAL OTHER CANCER OR
OSTOMY-RELATED ORGANIZATIONS AND IS CURRENTLY THE ENGAGEMENT
SPECIALIST AT GRYT HEALTH. FURTHER, SHE IS A REGULAR CONTRIBUTOR FOR
BLADDERCANCER.NET, TYPE2DIABETES.COM, AND THE WEST RIVER EAGLE .
38
ELEPHANTSANDTEA.COM
JUNE 2022
http://www.BLADDERCANCER.NET http://www.TYPE2DIABETES.COM http://www.ELEPHANTSANDTEA.COM
Elephants and Tea - June 2022

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