One Year Ago Tomorrow...

...our world changed, and not in a good way.

Now we were unaware that this was about to occur. We were in Houston at MD Anderson for the 4th grafting of the area that Ward had cancer in- the cancer was in the muscle around and behind his eyeball and he lost that eye, the muscle and a lot of bone and tissue to get rid of it. Though he's been cancer-free for almost 4 years, because he's diabetic and because they radiated the shit outta the area (didn't help- the cancer came back even quicker after radiation) he has healing 'issues'- the grafts flat don't have viable tissue to take root in and they fail.

By "fail", I mean they go along just fine for months, even years, and one day there's a little hole in the graft, right on the edge. Then another one. Then they get bigger and tend to get infected. They fail and must be removed and replaced or he'll end up contracting one infection too many.

This happens to his grafts because so much has been removed from the area that there's an actual pathway from the back of his graft to his sinus, and since humans aren't air-tight, every time he breathes it shifts the cells just a bit. Until there's a hole. Then every breath makes it bigger.

He'd had 3 previous grafts- one here in Tyler which was doomed from the beginning since it was just a skin graft (and unbeknownst to us the cancer was STILL THERE), and 2 at MD Anderson at the hands of Dr. Hanasono- a brilliant surgeon and genuinely kind man who's done more of these grafts than anyone on the planet- seriously.

But they failed, all of them, and we were set for our 3rd Dr. Hanasono graft- the exact same surgery he'd had twice before by the same doctor in the same hospital.

*What could possibly go wrong?*

Well, for starters...This-

Monday, April 5, 2010
When Even the Queen of the Universe Can't Fix It

It's now 11:27pm, and I've been up since 4am.

At 4am, my family got up, showered, and headed to MDAnderson Cancer Center for our 6am check in time for my husband's most recent surgery.

For eight years- over half the time we've been together, and for most of our son's life, my husband has been fighting with cancer and the after effects of that plus heart disease and diabetes.

We've had mostly good medical staff, some outstandingly brilliant medical staff, and just a few dismally inept medical staff, and I've learned something vitally important in all this-
medical staff are human.
They have many patients and must attend to technical important things like dosages, reactions, and proper protocol. There's not much time left in their day to consider that every body they tend is also a husband, mother, child, grandparent.

Patients are more than organisms in need of healing- they are cherished members of family circles.

In what continues to be touted as the best health care nation in the world, every patient needs, not as in "This sure would be nice", but as in "If the patient does not have this he/she may die", to have a patient advocate who is not afraid to ask questions, not afraid to speak up if something seems 'off', and who is Family- because no one cares for each patient as passionately as a family member.

Tonight, by chance, on our way out the door I happened to overhear the nurse say she had been given orders to administer Tylenol to my husband for pain. He's in the beginning stages of liver disease and should NOT take Tylenol. Ever. That was confirmed by bloodwork taken here, at this hospital, truly one of the best in the world, less than 4 days ago. I alerted the post-op nurse of this and she changed his medication instructions accordingly. If I hadn't been there, my already weak and compromised husband would've been given a whoppin' dose of the very medication that has wreaked havoc on his liver.

But I digress...

My darling was wheeled out of pre-op at 8am- headed for his third total grafting in less than 4 years. In between blood clots in his heart and having to go on insulin for his diabetes, today they did a total new graft on the area where they removed cancer (three times)- only one graft was done post-cancer- these last two have failed due to healing issues.

That area is up on his head- where his right eye used to be. It's been microsurgeried, enucleated, radiated, re-surgeried, and now grafted three times.

They've taken donor tissue (muscle and vessels)from his neck all three grafts, from his forearm once, his side under his other arm once,and this time from the leg that wasn't already harvested for veins they needed for his open heart surgery almost 15 years ago, and skin grafts now 4 times.

And every time he goes in with resignation I cannot believe and bravery I cannot fathom.

He keeps on not for himself- this is a man who never asks for anything, ever, but for us- his wife and his son- and we spend the entire time he's asleep, and in recovery, and till he's healed willing the medical staff to take care of him and willing him to be strong.

This time he was in surgery from about 9am till about 4pm, and had a more difficult time with recovery than the other times- he wasn't moved to a regular room till after 10pm. We're relieved that he didn't need to go to ICU even though he needed a transfusion for bleeding during surgery.

Many many people- family and friends of all of today's surgical patients- crowded the surgical waiting room today- starting all at 6am. By noon, about half of them were gone, and by 4 most of the rest were gone. Only a few of us were left then- the ones whose precious family members were undergoing 'extensive procedures'. He was one of the last out of the recovery room.

I'm exhausted. Our son is exhausted. I know my husband is exhausted.
We all just want to go home now, be a normal family and do normal stuff.

But we haven't had that careless scenario for a very long time.

The spectre of illness hangs heavy over our heads and it makes me crazy with worry, with frustration, with white hot anger at this curse on a man who deserves it less than any human I've ever met.

So we're here- ripped up by our roots from our beloved Pineywoods and thrust face-first into downtown Houston for the duration and many many re-checks to follow- in the last 4 years we've gone no longer than 4 months without a trip down here for one appointment or another.

As I'm typing, I just now told my son to close up his computer and try to get to sleep- he was playing a computer game with almost frenetic intensity after spending 15 hours cooped up in a cancer hospital. His computer was not fully closed before his eyes were and he's already sound asleep.

I'm headed to bed as soon as I make myself some tea, or maybe cocoa- I've spent all day trying to think of something to write here- something clever, or thoughtful, or important.

But in the end, this is it- what our family has learned at the expense of a 'normal' life- when even the Queen of the Universe can't fix whatever's wrong the only thing left is to love each other with a little more fervor, cherish each minute you can reach out and touch a loved one, be patient, and kind, and selfless.

Petty arguments and disagreements are time-stealers and we're all alotted a finite amount of minutes- grudges and revenge are abominations.

Tomorrow begins another round of recovery for my husband- closing my eyes all I can see are his poor ravaged features and opening my eyes I gaze on my sleeping 10 year old boy who's seen much more physical horror than most adults.

And yet they both look to me for strength- when the truth is my strength is a reflection of their character.

Love each other. Be strong for each other. Cherish each other.
I am the Queen of the Universe and I so decree.