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I recently went on a 4 day “vacation” to visit my Dad. For those of you who may not know, my father
has Stage 4 Lung Cancer. Basically, that
means that he is dying. Since his cancer
is no longer responding to the front line chemotherapy agents any longer (we
got 9 months), they have switch to immunotherapy and can no longer give us a
guideline of how much longer Dad has with us.
So, as you can guess, every visit is bittersweet. Will this be the last visit while he is
well? God only knows.
I could write a book about my emotions, and perhaps
somewhere in the future I will have the courage to write more about my Dad’s
battle with cancer. However, the focus
of this blog post is on something that happened while I was in AZ.
We had originally planned to go to the local church in San
Manuel that Sunday. I think Dad wanted
to get all of us girls together. Who
knows…maybe in his mind it was the last time we were going to be together as a
family. Anyway, both Mom and Dad caught
a very bad cold. Since Dad already has
both lung cancer and emphysema, it hit him harder than most people. Even though he is on the high powered
antibiotic Leviquin, he still has quite a bit of congestion in his lungs, and a
cough that quite literally gives me nightmares.
So, I ended up going to a church in Tucson to visit with my
sisters instead. The service was lovely
(a bit long, but then I’m just getting impatient in my old age) and everything
was going peachy until we got to the sermon.
It started the way most do. An
attention getting intro (you know…the kind they teach you in most public
speaking classes) that involved you being late for work and knowing you’re
going to get in trouble, but you get to work and your boss is not there. Okay, not the strongest intro, but I rolled
with it. And then, things went
south. His next intro was about you
going to the doctor and them finding a spot (I kid you not) on your lung. The doctor tells you it is cancer and you go
home and the church prays for you. When
you return to the doctor, the doctor tells you that there has been a mistake
and there must have been a smudge on the xray.
The preacher’s line was “Coincidence or providence?” And this is about the point where I started
to have a BIG problem.
Look, I get that now a days cancer is the big bad wolf of
our times. It’s the thing that keeps us
awake at night. The invisible terror
that we are petrified that at some point in our lives we are will hear the
words “You have cancer, and it’s bad”. But see…here’s the thing. I have heard those words. They are almost *literally* the words that
one of the doctors treating Benjamin said.
(Her actual words were “He has cancer and it’s BAD.”) Here’s the rub though. When I heard those words, we did exactly what
the preacher said in his story. We
prayed. My church prayed. My Mom’s church prayed. A LOT of churches prayed. But Benjamin still had cancer. True, it could have been worse. A LOT worse than what it was (see previous
entry on Survivor’s guilt). But it
wasn’t easy. And it didn’t go away just
because we prayed.
I guess what I’m trying to get at here is a couple of
points. We all know that cancer is
real. That’s why it scares us. Because it could, quite literally happen to
anyone. Up until a year ago, my Dad was
living his life blissfully aware of the tumors growing in his body. Just like we were unaware of Benjamin’s
cancer until it literally popped up on his eyelid. But cancer is NOT a joke. It is not a convenient story telling
mechanism. It is an awful, horrible disease
that tears into families and sometimes destroys lives.
My second point is that though I fully believe in the power
of prayer, not ALL things are “fixed” by prayer. I am NOT saying that prayer is
not important. I’m just saying that
sometimes God has something different in mind than what we want. Because believe you me, I have prayed and
prayed to God that my Dad’s cancer be cured.
That the doctors’ were mistaken in the severity of the cancer; in short
for a miracle. None came. I have actually heard some people say that in
cases like this, the person’s faith is just not strong enough. That if my family had only prayed harder…or
if we had been better people then God would heal my family. Personally, I find these type of people to be
incredibly ignorant. God has his reasons
for the things he does, and we do not always like them, or understand
them. However, God is ALWAYS a loving
and kind God. I think it would be more
accurate to say that prayer doesn’t change things…it changes people.
I haven’t written in my Blog for years and years. As a matter of fact, life has gotten so crazy that I’d pretty much relegated blogging to the category of “I’ll get back to doing that when the day suddenly becomes 12 hours longer.” But I had a talk the other day with my YaYa (hush…I’ve lived in the South long enough to start using such terms, besides, she and I have been through enough hell together that we can use affectionate terms like that without it being creepy) and she was telling me how writing in her Blog Herding Chaos (shameless plug here people…what are you waiting for…go over there and check out her blog…she’s waaay better at this than I am!) was therapeutic to her and was really helping her sort through her emotions.
So can I
take a moment to be honest? Some nights,
when I sit down and think about my Histio journey with Benjamin, I really,
REALLY start heading into Survior’s Guilt. I think about our little
clinic buddy who lost her battle to ATRT when she was 3. I think about how old she would be now and
heading into school. I look at her
pictures that her Mom and Dad post of Facebook and I remember her beautiful
smiles and her incredible journey. And,
selfishly, I think about Benjamin and how he is alive and well.
And I feel
GUILTY.
I think
about how Benjamin zipped through his chemo like it was nothing. I think about how lucky he is that he had
bone only involvement. I think about how
(other than a fairly profound case of OCD) he has had no side effects from
Histio or his chemo. And then I look my YaYa's daughter who is, at the ripe old age of 8, still staring down the barrel
of a liver transplant when she is a teenager (because Histio damaged her
liver).
And I feel
GUILTY.
I think about
all the other Histio Momma’s out there RIGHT NOW who are scared to death that
their child that there child might not live through the night, or that this
batch of chemo might not be working, or does this bump on his head mean that
the Histio is back. All things that
being 5 years into NERD (No Evidence of Recurring Disease) I no longer think
about on a daily basis.
And I
feel…wait for it…GUILTY.
Now don’t
get me wrong. I don’t spend my days
locked in guilt, dressed all in black, crying myself to sleep at night. But it does come up…often when I don’t expect
it. The occasional line in a movie that
touches on cancer. The Facebook
advertisments for St. Judes.
Before we
went on this roller coaster Histio ride with Benjamin, I don’t think I had ever
given Survivor’s Guilt much thought other than “Hmmm…that’s such a totally
weird thing for people to do to themselves.
WHY would people not be thankful for making it through something awful? WHY not just be thankful for what you
have.” But like so many other things in
life, Survivor’s Guilt is something you must experience in order to truly
understand it. It’s not that I DON’T
feel thankful for how (comparatively) easy Benjamin’s Histio journey was. I am. BUT, I have a heart, and I feel for my
friends. The friends who lost children
to cancer and Histio. The friends that
are still fighting. The friends that are
struggling with the aftermath that cancer and Histio often leave in their
wake. And sometimes I look up at God and
say “Why?”.
Granted,
it’s a different “Why?” than when we were first diagnosed. Back then it was “Why? Why God?
Why did you take my beautiful little son and give him this horrible
disease that ate his bones?! Why did you
bring this monster into my home to haunt my daughter’s dreams and make her
think that anytime something hurts it might be cancer?!” Now it is more of a humble “Why? God, you
healed Benjamin. You made it look easy. Why didn’t you do that for Jasmine?! Why not my other Childhood Cancer
friends? Why don’t you just wipe this
monster off the face of the earth?! You
did with smallpox. What are you doing
here God, because, honestly I don’t see the endgame.”
And in the end, God’s answer to me is usually
the one he game to Job. Namely that He
really is in control and even if my puny little human mind can’t see the
endgame 1000 years from now, He can. All
I need to do is trust. Which, quite
frankly, is sometimes tough.
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