Due to the many meds I have ingested over the years since my
transplant, I suffer from what my doctor calls esophageal spasms. Esophageal spasms are intense, take your breath away, severe chest pains. Typically I get them after taking pain medications. I don’t think
my GERD can handle the meds and consequently my esophagus spasms.Thankfully, these spasms only occur
occasionally. Unfortunately, last Friday I experienced “a big one”. The panic
of the intense pain led me to take a trip to Urgent Care. To make a long,
pathetic story short… One ambulance ride (accompanied by a fire truck), 5 EKG’s,
many blood draws, IV fluids, a chest X-ray, a CAT scan, an Echo Cardiogram and
a Stress Test later I was told my heart was fine (which I knew because I’d had
a complete heart work up a few years earlier). Even more unfortunate, not a
thing was done to help my esophageal spasms. At the end of the ordeal, to say I
was frustrated would be a major understatement.
So here I am sharing another “series of unfortunate events” story from my life; not simply because I need to vent but because I know that I am not alone in my frequent frustration with my post cancer body and all it's failings. Having just celebrated
National Cancer Survivor Day, it seemed fitting to write a post advocating for
my long term cancer survivor friends. For those of you with cancer survivors in
your life, I hope my perspective on the challenges of being a cancer survivor will
increase your sensitivity as you do life with these amazing, courageous human beings.
Here’s my point….Being a survivor isn’t easy.
Most assuredly, it beats the alternative, but still… life
post- cancer has many challenges.
The kicker is, (at least for me), I SEEM completely fine. I
live a really full life. I am active. I laugh a lot. I run, I exercise, I upcycle furniture, I do volunteer work that keeps me on my feet for many hours a week.
I travel. I look well. I look healthy.
This is what you know about me….just what you see.
But here’s the reality of my life: I’ve had heart failure.
I have serious GERD which has led to esophageal spasms. I have high cholesterol.
I have osteoporosis and degenerative disc disease and am almost always in pain.
I don’t hear well. I don’t see well. My memory stinks. I even think I have some
PTSD. I have IBS and a very sensitive gutt. I don’t sleep well.
Sometimes I jokingly say “it stinks to be me”. Of course,
that is not true, but here’s the reality of my daily life that sometimes leads
to this exclamation…
· * If we are in a large group most probably when
you talk to me I don’t hear you very well. I have low tone hearing loss due to
nerve damage from radiation.
· * I have to hold the railing when I go up and down
stairs in unfamiliar places because my depth perception is so shot I miss step
easily. I have retinal damage from steroids that causes me to have distorted
vision and black holes in my vision field.
· * When I sit with you in a restaurant for more
than a half hour my back is killing me. I don’t choose restaurants based on the
food but the comfort of the chairs.
· * My back pain requires me to walk more, sit less.
In order to watch an at home movie I have to be able to lie down. Consequently,
I might prefer you come to my house for a visit rather than me going to your
house.
· * When traveling with you in a car it is helpful
if I can sit in the front and recline the seat, otherwise my back becomes
extremely painful very quickly.
· * I can’t take pain meds for my chronic pain because
the meds aggravate my esophagus and stomach problems.
· * Though desserts and rich foods are just as
appealing to me as they are to you, if I eat them I most probably will get
sick.
· * When traveling I have to keep a pretty strict routine
in order to be able to sleep. Even sleeping pills do not guarantee I will sleep
and if I don’t sleep for more than one day I typically will pick up a bug
because my immune system is easily compromised.
· * I have to run and exercise regularly in order to
keep my bones and joints in good health.
* Despite my attempts at healthy living I still have high
cholesterol, am pre-diabetic and have osteoporosis.
My body, it seems, is prematurely aging. I refuse to give in to these challenges but instead, expend
tons of energy fighting….fighting…fighting.
I know that looking at me you don’t see these daily
challenges. In a way, I’m glad for that… but sometimes I’d like to remind you
of my challenges because sometimes I just need encouragement to keep going.
I DESPISE PITY, but I
APPRECIATE encouragement and empathy. I know I can’t expect you to fully
understand what it’s like to be me. All I ask is that you not judge me, don’t
second guess my motivations and please don’t assume that I am vane because of
all the energy I put into staying healthy and well.
Some cancer survivors have challenges similar to mine; some
have different challenges. But this I
know for sure-if you have had chemotherapy or radiation you WILL have
challenges.
The road to good health post cancer is complicated and
costly. Though well worth it, treatment leaves us with many negative
consequences.
I guess I just want to send a reminder to anyone who loves a
survivor; please increase your sensitivity towards the survivors in your life realizing
that at times theirs is not an easy journey. They need your love, support, patience and understanding. They don’t want to be “special” but the reality of
their situation is that sometimes they have no other choice. Give them the freedom
and encouragement to be as normal as they are able but also respect and
acknowledge their limitations (but don’t overreact to them). Allow the survivor the
freedom to determine how transparent they want to be about their challenges. You may not have walked a mile in their shoes, still, try to be as compassionate and
understanding as you are able.
For survivors at some times life is easier than at others but no matter what,
I am personally always thankful for the acceptance, love and companionship,
despite my quirks, I receive from my family and friends. Thanks for loving me no matter what...
