Posts Tagged ‘surgery’

Not really what I wanted to hear.

In Cancer Sucks on October 6, 2011 at 6:12 pm

I yelled upstairs this afternoon, whilst telecommuting, to let my oldest daughter know I’d be downstairs (and within in earshot for phone calls / her questions / her requests).  She yells back, “OK Dad, I’m practicing writing with my left hand.”

Sounds like a great kid thing to do, you know, try to learn how to write with your other hand … for kicks, neat trick and all …

For my daughter this may be a reality in a month … I mean it will be reality after surgery.  She’ll probably need physical therapy, her right arm will be sore … And I also mean she may have no right hand, or arm for that matter.   I don’t think she knows this is a possibility and our understanding is that this is an absolute worse case scenario, but then again our whole last 4 months have been a worst case scenario as far as we’re concerned, so there’s that.

We’re at a break in treatment before the long awaited surgery to remove this damn tumor, our mantra is “get it out.”  But we have weeks to go before surgery, her body needs to heal from radiation and 4 rounds of chemo … she’s tired, we’re tired.  Sick and tired of living with this, tired of not being able to get to sleep at a decent hour because you can’t get the worse possible scenarios out of your head … and they get pretty bad … still dis-believing that your daughter is bald and a cancer-kid … It all takes an emotional toll on you.

And yes that’s a cliche, but again, these past 4 months have been full of all of them: take each day as it comes; take one day at a time; be thankful for what you have; it is what it is; question authority (e.g. your doctors); be a good patient advocate; god is dead (that’ll be fleshed out for a future post, my road to atheism <LOL>); and live each day to it’s fullest …  yeah, we would, but we’re too friggin’ tired …

Hey, lets end on an up note!

Does she still have a great giggly laugh? Yes.

Does she still have a sly sense of humor?  Yes.

Is she still a speed reader, plowing through her library books and Harry Potter websites? Yes.

Does she still play nicely (as well as bicker) with her younger sister? Yes.

Is she still a great little girl that is taking this incredibly unfair intrusion into her very young life in stride? Yes, yes she is …

What can I do for you?

In Cancer Sucks on September 8, 2011 at 6:44 pm

Renowned Surgeon: “What can I do for you?”

Parent – Dad (what I was thinking): … uhhmmm, well … how about you save my daughter’s life!?

Parent – Mom (reply in reality): … gives a gracious even-toned reply to start the conversation politely, so as not to start off on the wrong foot, and so that the surgeon does in fact help save our daughter’s life …

Thus started a long awaited meeting a week ago with the surgeon we’re hoping will rid our daughter’s body of this damn cancerous tumor.  Nice… But the meeting did get better and the lead surgeon in question here did warm up to us and laid out, as much as is possible at this point, what the surgery might entail worse case to best case.

And a shocker!!!  Especially in light of my previous post on surgeons and specialists … the surgeon and the intern actually touched our daughter’s tumor!  They checked her arm’s motor functions and strength, and actually took a physical look and interest in what they were dealing with.  So bonus points there!  On the other hand they are orthopedic surgeons, so one would suppose a physical exam of their patient and the effected area might just be a good idea before cuttin’ someone open.  I’m no medical expert, but just a thought …

So, ya think surgeons actually go to any sensitivity training in med. school?  Or does the whole “god complex” thing just so overwhelm their psyche that they don’t even see their own arrogance?  Kinda guessing the later … On the other hand cutting living people open, especially children, has got to take a toll.  Maybe this arrogance is a mechanism that keeps them sane and let’s them do their job.

I’m just being nice, utilizing my 3 credit hours in Psych 101, as well as years of pop-psychology from Donahue and Opera, and doing my darnedest to give these surgeons the benefit of the doubt.   ‘Cause I kinda need our surgeons to their very best darn job ever because my daughter’s life is at stake here.

Man, being a parent and not being able to “fix it” yourself really really really sucks. I can not emphasize this enough.

The other thing that is so frustrating is how in this amazing age of technology and online instant everything (including this blog), it still comes down to people actually talking to each other to communicate.  We’ve lost count how many times we have had to re-tell our daughter’s story to a doctor.  Even though they are all on our multi-specialist “team” and there are computers in every room with access to our records (right?) and iPhones are de rigueur for every doctor (guess the are filled with Angry Birds apps and there’s no room forEpocrates?).  I guess it’s nice to know that no profession has cornered the market on efficiency and communication.  And at this point telling “our story” is just kinda rote and we expect it.

Well, this is an uplifting post huh?

Let’s see: arrogance; inefficiency; helplessness … nice depressing trifecta there 😉

But really, I’m having a nice peaceful (and cathartic) moment writing all this.

I’m at my daughter’s hospital bedside.  We enjoyed a delightfully filling dining extravaganza from the Au Bon Pain in the hospital lobby (see previous post on my favorite ABP sandwich), while watching an equally delightful iCarly episode together, and now she’s chit-chatting with her friend on her cell phone catching up on the school cafeteria’s menu options (all weird and grossincluding plastic cheese!) … just like any 11 year-old girl … all the while I hear the hum of the IV machine dripping Ifosfamide in to my daughter.

Sometimes it’s just nice to be. Even if it’s the cancer ward in a children’s hospital.

And after all the ranting above, I do feel obligated to point out that the attending nurses and doctors on call in the hospital are again, amazingly kind, sensitive, and competent.  If you’re going to get cancer, this is the place to be.

But, I still really wish I didn’t have to know this first hand.