It's the sound of IV alarm.
Or maybe it's the smell of handsanitizer.
Sometimes it's circumstances. Like being an inpatient caregiver again. Having the pressure of needing to assimilate information quickly and accurately. Needing to understand complex medical information so you can be the best patient advocate possible.
I can tell you from personal experience that PTSD is very real for Childhood Cancer survivors, caregivers, and siblings.
To this day, the sight of an infusion room makes me want to vomit. And doing rounds yesterday damn near sent me into a panic attack. Because this sucks. It feels like diagnosis week with Benjamin all over again. Like 10 years never happened. And all I can think this "I shouldn't have to do this again. I did my time damn it."
I have skills. Skills I shouldn't have. Skills I don't want. I know how to pack a Chemo bag in 5 minutes (I swear it was easier when we just had the bag ready to go). I know the ER drill FAR too well. I told the doctor at rounds not to dumb down the report because I understand just about all the terminology. I know how to get a non compliant patient to eat. I know how to ask the right questions from the nurses because they know waaaay more than the doctor.
I don't wanna know this stuff. I wanna be ignorant of resistant bacteria and fluid overload. I want to trust doctors again (I got no problems with nurses... they know what they're doing).
In short, I want off this ride.
Today I saw an add for a Christian movie called Breakthrough. It started cute enough. Nice little town..nice little kid. Annnd then the clincher... the kid falls through the ice. The firemen who are looking for him turn to each other. One says "It's been 15 minutes. This is a recovery, not a rescue." And that's when I knew what type of movie this would be. Your typical "Mom prays for a miracle and gets it." movie.
Sigh.
I really can't stand these movies.
Don't get me wrong. I've seen miracles. I've seen things that defy modern medicine. Praise God.
But...
I've seen the other side. When you pray for a miracle and it doesn't happen. When you pray for healing and for some reason God says no. And before you go much further, no, I don't always understand God. I believe He exists. I believe He cares. And I sometimes have no clue why He saves some people and let's other's die.
And THAT'S the problem I have with movies like Unbreakable. Because to me, the message is God loves you, and if you're a good, faithful servant, He will heal your loved one. And on the flip side, the unspoken message is if He doesn't provide a miracle, I guess your faith wasn't good enough.
And that doesn't work for me. Because I've seen too many people; good, faithful people not get miracles. I've seen them walk through the Valley of the Shadow of Death with dignity and grace that I don't possess. I've seen then suffer things that made me so angry at God. I've seen them bury their children. And THAT IS WRONG. So very, unspeakablely wrong.
So, for me at this point in my life, I think I'll hold off on the miracle movies. Thanks, but no thanks Christian movie makers. I'll pass.
I remember when the Stephen King movie IT came out on
TV. I won’t lie. I don’t have a phobia of clowns, but you
gotta admit…this guy will mess with your dreams!
I read an article the other day that reminded me of
Pennywise. As a matter of fact, here it
is, right here.
What’s that you say?
Doesn’t look that scary to you?
Probably not. But when I read it,
it instantly struck a note of panic deep within me. Because this article strikes home. Benjamin has had more than a few MRI’s with
contrast over his battle with Langerhans Cell HIstiocytosis. As a matter of fact, he’s had so many MRI’s
that we bought him a shirt that says “One more MRI and I’ll stick to the fridge”.
So, when I read that the metal contrast that they use in MRI’s
has been found inside the brain tissue of patients YEARS after their last MRI,
I begin to worry. You see, I have long
worried that there is something “wrong” with Benjamin. Not recurrent cancer wrong, but something off. Benjamin has always been a very
intellectually driven individual. Some
of that is probably because he spent most of his younger years (2-4) primarily
around doctors and nurses and not children.
But my paranoia runs deeper than that.
Last year Benjamin’s math teacher approached me and let me know that she
was beginning to be worried with Benjamin’s progress. Seems that during his timed tests, Benjamin
insisted on going straight down a row instead of skipping around to problems he
knew. His teacher had already told him
multiple times to do this technique, but he would not. When I talked to Benjamin about it, he said
that he knew he was supposed to do it that way, but it just felt WRONG and he
couldn’t do it.
Now I’ll spare you several paragraphs of boring stories
about Benjamin and I’ll cut right to the chase.
I am fairly certain that Benjamin has something close to OCD. I am not the only one to have noticed these tendencies,
and they have been noted in the academic environment and outside of it, which
makes me think that this is a holistic problem.
We do not have an official diagnosis for Benjamin for two reasons. One, there is not a neuropsychologist in the
hospital that Benjamin goes to. Two,
since we have begun living a “normal” life as a family, I am hesitant to drag
us back into the medical sphere.
You see, it’s a catch 22 as it were. I know something is wrong. Counseling and/or therapy could probably
help. But there is a part of me that
desperately wants to stick my head in the sand and say “NO! Everything is FINE! He beat cancer, and we are a normal family
now, damn it!”
And therein lies the problem for post-cancer
survivors. We desperately want to live
the new “normal” lifestyle. However,
just like in IT, years later our own personal Pennywise’s come knocking at our
door scaring the crap out of us. “What’s
that lump on his head?!” “Could it be
recurring cancer or did he just bump his head?” “Why can’t my son run as fast
as the other children his age?” “Is it because gadolinium
build ups on his brain have damaged his motor
functions, or is he just out of shape.”
And on and on Pennywise whispers to us in the night.
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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.
 | |
| Would you take this guy up on the offer? |
I'm not going to go into huge detail about my feelings on the recent mass murder of nine innocent souls in Charleston by a Monster. And honestly, I'm not going to even mention the Monster's name. Why you ask? Well one, because it's like in Harry Potter...no one would say Voldemort's name because it gave him more power (truth be told, it also helped him hunt down Harry Potter's whereabouts, but that's a different story). But more importantly, I'm not going to name his name because, to me, he is no longer a person. He is now a Monster. Just like Voldemort. A Monster who for some reason that only a Monster would understand decided that taking nine beautiful lives would make him more powerful. Sound familiar?? Maybe this Monster thought that by taking nine lives he would live forever...or maybe he thought that he would advance his plans for world domination. Seriously, can anybody even understand a Monster's logic??Well, you split your soul, you see, and hide part of it in an object outside the body. Then, even if one’s body is attacked or destroyed, one cannot die, for part of the soul remains earthbound and undamaged. But of course, existence in such a form...
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| Jeffrey Dahmer |
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| Lee Malvo and John Muhammad |
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| Dylann Roof |
 | |
| Tom Riddle |
That which Voldemort does not value, he takes no trouble to comprehend. Of house-elves and children's tales, of love, loyalty, and innocence, Voldemort knows and understands nothing. Nothing. That they all have a power beyond his own, a power beyond the reach of any magic is a truth he has never grasped.
Just like in Harry Potter, we find that even though the Monster had a plan that he thought foolproof, it failed in the end. Instead of starting a race war like the Monster wanted, the city of Charleston is reaching out to one another in love. One victim's family member even forgave the Monster at his hearing. Thus again proving that while Monsters can do truly horrific things, in the end they never truly win.
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| Photo from CNN.com |
Author’s note. Again, I realize that there are TONS of major events that I haven’t been able to write about yet, but I’m trying. The following post is a pretty good timeline representing the reason why I sometimes get so far behind on all kinds of things…including blog posts.
I often wonder why I am chronically behind on projects and things. Tonight is a prime example why it is not entirely my lack of organizational skills...
7:30pm. We get home. I tell the kids they need to get ready for bed because I need to cook soup for tomorrow. I tell Genevieve that I trust her to be responsible for herself and not need me to explain all the things she needs to do to get ready for bed (she *is* a 5th grader after all!).
7:45pm I am still directing Benjamin to get his PJ’s and pull up on. Autumn and Genevieve have disappeared, and I (mistakenly) assume that they are *actually* getting ready for bed.
8:00pm Benjamin is dressed in his PJ’s (yes, that’s right…it really did take 30 minutes for me to get him to get his PJ’s on while I tried to turn over the laundry and put one load away). I tell Benjamin to brush his teeth. I hear the girls fighting and (shock, gasp) discover that *neither* of them even have their PJ’s on, let alone have brushed their teeth. Redirect the girls and get Benjamin to brush his teeth.
8:15pm Redirect Benjamin to brush his teeth and actually accomplish it this time. Genevieve and Autumn have PJ’s on, but haven’t brushed their teeth. Redirect (with threats) for teeth brushing and get results.
8:30pm Girls are in room. I ask Genevieve to get her money out so that we have it for tomorrow’s shopping trip. Not only can she not find her money, but she *vehemently* accuses Autumn of stealing her money. Autumn maintains her innocence. I try and talk Genevieve through where she might have left her other money and we cannot find that wallet. Meanwhile, Benjamin is clothed and has his teeth brushed. I send him to bed and he pitches a fit because a) I’m not reading him a book and b) Chemo duck doesn’t have any clothes. Put Chemo duck’s clothes on and discover that there is now a HUGE mess on Benjamin’s floor, which had been spotless before we left for dinner. Ignore mess and get the boy put in bed. Tell Genevieve to forget about the money and send both girls to bed.
8:45pm Benjamin pops up multiple times for this, that and the other. I redirect kindly at first and at the 4th or 5th foray, I promptly tell him that I will spank him if he comes out of his room again. He stays in his room, but *loudly* asks me questions. Eventually he falls asleep. I go and check on the girls. They are very much still awake. Genevieve is upset about her missing money. I assure her that tomorrow I will loan her the money for the dress she wants as long as she gives me back the money (*without* complaining!!) when she finds her wallet again. The girls *finally* settle down and are quiet in their rooms.
9:00pm Benjamin is asleep and the girls are at least quiet. I am too afraid to open their door for fear of getting them wound up again. I am now exhausted mentally and physically and have absolutely and completely NO motivation to make the soup that I was planning to take to soup supper tomorrow. I’m actually just leaning toward a BIG margarita and an early bed.
And I wonder why I don’t get anything done. Oh, and just in case you were wondering, if any reader even *attempts* to suggest a better bed time routine, or any other “organizational” strategy, I will likely take you up on it with the proviso that you come to my house and demonstrate said technique as I take exhaustive notes while I’m sipping iced tea and watching the show (ahem…I mean observing the demonstration). Don’t say I didn’t warn you. ;)
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