Wednesday, March 07, 2007

On a Tangent. And a Soapbox.

I feel the need to clarify, given my constant ranting and ravings, that yes, the bureaucracy of Tricare sucks sometimes. It sucks big, green, giant, don …. Well, you get my drift. But, try to find any health care monolith, which provides medical care and coverage to millions of people, that isn’t a maddening pile of red tape at times, and you know …. I don’t think it exists. And considering all we’ve been through, and knowing what we know now, with hindsight being 20/20, if we could rewind the clock, and turn back time, with the chance for a do-over …. Well, we probably wouldn’t do anything any differently. Given our personal situation, especially.

Yes, it would most likely have made things easier if we could have transferred to a military base with a comprehensive cancer center, instead of Blaine getting some of his treatments at the Air Force Base here, and some three hours away at Ft. Gordon Army Hospital, and flying numerous times clear across the country to Seattle. It’s been a complete pain in the ass, and one of our biggest sources of frustration, for him to have dozens of doctors scattered all over the country. But it worked out this way for two reasons. One, we REQUESTED to stay here so Kendrie could finish her cancer treatment, and begin her follow up care, at Scottish Rite in Atlanta. Five years in the same location? That is unheard of in the military, yet we've done it. Granted, Blaine’s care got put on the back burner when she was diagnosed six months after him, and some things possibly slipped through the cracks. That’s partly our fault, too, as we were paying so much attention to her treatment, and perhaps not as much to his. But even now, we wouldn’t trade the quality of care she received for anything. Blaine’s care had to be farmed out, if we wanted the best people for the job to do it, given that we weren’t willing to move. Not that moving was ever offered to us as a suggestion, but even if it had been, we would have said no.

And two, when this whole thing started, and throughout the entire process, it’s been a series of complications and setbacks that no-one, short of God Himself, could have foreseen. I can’t tell you how many times we’ve heard, “Well, *that* should take care of it!” …. Only for a procedure to be unsuccessful, or an infection to set in, or a complication to develop, or for the radiation to kick his ass, or for the cancer to return. Nobody could have predicted that all these things would happen and that Blaine’s health would turn into a comedy of no-fault errors ….. that our lives, for all intents and purposes, would become a living, breathing example of “shit magnet” at its finest. No-one was subversively hanging out in the kitchen, making one crap sandwich after another to serve our family. Things just wound up being more complicated and drawn-out than we ever expected. So sure, its easy to look back now, with the advantage and wisdom of experience, and know that being stationed somewhere where he could have received comprehensive care would most likely have been helpful. But there was no way to know, going through it, that any of this would have been more complex than the doctors anticipated in the beginning. So even if we *could* have moved, we probably wouldn’t have, because we’ve always thought, and hoped, that we were seeing light at the end of the tunnel. It’s just that in this particular case, that light has usually wound up being an oncoming train, headed right for us.

I don’t think Blaine has gotten bad care. I do think it’s inevitable that given all he’s gone through, over the course of the past four years, that we would encounter a glitch or two. Or three or four or seven hundred. It’s frustrating, and it’s annoying, and yes, we second-guess ourselves and wonder “what the hell?” and beat our heads against the wall with alarming regularity. In fact, I'm pretty sure that his doctors have been frustrated by his case, as well. Blaine is a living, breathing reminder that sometimes, even their best attempts can't heal or cure a person. But the care he has received has been good overall, and at times, exemplary. Nothing that has gone wrong with him is anyone’s fault; none of his providers have been malicious or harmful or negligent. There have definitely been situations where they’ve caught things and preemptively helped him. The Air Force dentist who found the tumor; the Army surgeons who removed it and saved his eye; the Army orthopedists who saved his leg when he got the MRSA staph infection after his first major surgery; and all the doctors and specialists along the way, who have helped, or tried to help, deal with the complications and obstacles that have cropped up. I just get frustrated because I want him well. I want him back the way he was before he was diagnosed, and I worry that’s never going to happen. And, like every family with a cancer patient knows, it’s aggravating that there is no one to BLAME for the situation, so I sometimes get irrationally annoyed with the people attached to the situation, ie, the medical staff. I can’t yell at him although I do sometimes but only when he really, really deserves it so who else can I gripe about?

In light of the Walter Reed situation, and the fact several of you have made correlations in the comments section, I feel compelled to state that although we have been perturbed and stymied over the years, we have never felt neglected. I think the military doctors (civilian, as well) that have treated Blaine have, for the most part, been competent and kind and capable. Sure, there has been an asshole or two, sprinkled here and there, but I think that’s to be expected in any career field. If I’ve given anyone reason to think, what with my bitching and moaning and griping and all, that he hasn’t been treated well by the military, I’m sorry. That wasn’t my intention at all. I have no doubt just the opposite is true, and had he been employed by a civilian employer, that we would have been unemployed and in bankruptcy by now. It’s just frustrating that with regards to his medical situation, not one damn thing seems to go as planned.

And if I could get up on my medium-sized soap box, regarding Walter Reed and the military in general, I have just one word to sum up the entire situation: Overburdened. Blaine’s never been treated at Walter Reed; we’ve never been there; I have no idea what has happened there. But you, (and I don’t mean YOU-you, but “you” in general) can only slash the military budget so much, so many times, and still expect top-quality services across the board. When people say they are tired of seeing money spent on tanks and bombs and guns, and the war in Iraq needs to end, they need to understand that cutting defense spending doesn’t only affect the war on terror. It also means less military personnel overall everywhere, which means less doctors and less nurses treating more patients; it means military hospitals don’t always have the funding for equipment and supplies and medications; it means benefits have to be cut, both for active-duty and veterans, it means less repair work on military bases and military housing; it means more and more Department of Defense schools being shut down; it means fewer and fewer active-duty members, who still have to do accomplish the same amount of work that was done when the military was 30 percent larger. Most appalling to me, it means allowing an environment where airmen with families are paid so little that they are eligible for food stamps. And that’s just wrong.

OK, off the soapbox now.

Actually, the authorization expiring makes me realize it’s been exactly four years since Blaine was diagnosed. Referrals are good for one year, which is why it’s time to renew his. Four years. March of 2003. Was that a long time ago, or what? And it reminds me that I don’t think I’ve ever told the story of when he was diagnosed, and how I found out. I’ll share it with you sometime, because it’s actually a little bit funny.

In the meantime, thanks for giving me the space to vent here about what is going on with him, but please know that’s all it is; venting. Me, letting off a little steam and fear and anxiety, the best way I know how. With insults and four-letter words.

Lots and lots of four-letter words.

They’re the best kind, after all.

21 comments:

cakeburnette said...

Once again, you express so many things that I feel, only a ZILLION times more eloquently!

Tammy said...

Vent on Sista, we love ya!

Anonymous said...

Vent away...thinking of you, and hoping Blaine makes it to Seattle quickly.
~Shannon
www.caringbridge.org/tx/ethantf

Chris Myrah, Rosemount, MN said...

Okay, Kristie,

We have never met. Given the fact that we are broke and don't travel much, unless an Air Force Base pops up in Minnesota, our chances of actually meeting are slim. I don't sign the guest book often, but I read every day. Given that, after my doctor appointment today, you were the first person I thought of who would get the humor of the situation.

I had a hysterectomy last month, and had my post-op today. I’m sitting (laying) there, feet up in the stirrups, speculum up the hoo-hoo dilly, and the doctor is chatting away with me. Talking about the kids, how I’ve been feeling, etc. Suddenly, something is HORRIBLY wrong. I went shooting up the freakin’ table, yelling, “Holy crap! WHAT IN THE HELL WAS THAT?” Whereas my OB tells me, “Well, you aren’t healing as nicely as I would have liked to have seen at this point. So, I went in a cauterized a few places. I didn’t warn you, because then you would have tensed up and it would have hurt even worse.” WORSE? Woman, you just CAUTERIZED MY HOO-HOO DILLY! How can it get WORSE?
(By the way, hoo-hoo dilly must be said with the appropriate red-neck accent…)
I swear, every time I pee I feel like I have just set things a-flame.
I mean, really. Can you imagine? Just hanging out (literally), when suddenly someone cauterizes you? That just ain’t right!!!!
Chris~

Ginny Deegan said...

Oh the joys of military healthcare. We, too, are an Air Force family. We have been at Mtn. Home AFB for nearly TEN years. Yep, ten years this summer. It seems this is a base where people can stay for many, many years if they wish.

While not anywhere close to your scale, we have had our share of big medical issues as well. I was diagnosed with a very low grade ovarian cancer, husband had to have vertebra fused in his neck, baby in the NICU, etc. etc. While referrals can sometimes get messed up and things of that sort, they do always come thru. I can't imagine the medical bills we would have if it weren't for Tricare. And, what employer allows you to have weeks off to recover from surgery...while they pay you the entire time? Without using your vacation time? My husband had six weeks off, I believe, after his neck surgery. Although all of us complain about Tricare, and the military in general, from time to time, there are benefits. A little more padding to those paychecks would probably stop some of the complaining, though. :-)

We moved to his base right after we were married. Although my husband was at four bases before this one, Mtn. Home is the only base I know. Our base hospital is above average for a hospital, I would say. I had my surgery at Travis AFB in CA. Travis' hospital is amazing! It seems to be state of the art and has all the specialty doctors you could want. I have been appalled while watching the coverage of Walter Reed. As our base has just gone thru a major renovation of our base hospital, and our base is currently in the process of building all new base housing, that hospital was allowed to get to that condition? How on earth does that happen? A base that serves so many patients and it appears, from footage on tv, to be totally unlivable. How very, very sad. If it is truly a result of cuts in defense funding, that is pathetic. Our country can send people to war, to leave their families for months or years at a time and can't have a decent hospital for those coming home who need quality medical care? What an embarrassment for our country. Hopefully the powers that be will see the need for an INCREASE in defense funding, not a decrease.

Long story short, I agree with you! LOL

Natalie said...

Go right ahead--vent away. We're right here with you!

Anonymous said...

Venting, soapbox, whatever.....that was very well said!
Dixie

Kathy said...

Kristie,
I keep up with you every day (checking in several times a day for updates.) You and your family have been in my prayers every day since we connected last year. I also pray that you will write a book, because your story really NEEDS to be told.

kim said...

Okay, Kristie, once again it's like you stepped into my head. My place of employment is one that gets "bashed" regularly both by employees and the general public. I don't really like to say when people ask where I work, not because I'm embarrassed to work there, but because I'm not really going to want to hear the story that person will undoubtedly feel compelled to tell me about how they were wronged by "us." And, ya know? Yes, it's probably true. And I am sorry, and I truly think that we are on the road to doing better. As far as employee complaining goes, this is what I know. When my husband had cancer, the company went out of its way to do everything for me and my husband that they could and it made a huge difference to us at that time. I have not bashed them since; complained, yeah--bashed, no. There is no shangri-la.

Which is my long-winded way of saying, while we all need to vent sometimes, it doesn't mean we don't appreciate what we have. Right? So, vent on!

Lisa said...

You're a talented girl Kristie! Vent away and we'll keep the prayers coming for you all.

Kristin Hicks said...

Vent away! I couldn't agree with you more. Tricare can be frustrating beyond words, but I am so appreciative that my parents are covered for the rest of their lives. Military life could be down-right draining at times and supporting a family of 4 on a measly salary was also hard, but my parents will have his retirement $$ for the rest of their lives as well. I really couldn't ask for anything better. :0)

Here's hoping that referral comes through quickly.

Kristin in NC

Steph said...

Kristie,

Venting is good for the soul! Just wanted you to know that I do read everyday and you always write so well. I think you are amazing for being able to keep your sense of humor and positive attide with all you have been through!! I will continue to pray for you family daily.

Amy from St. Pete said...

Kristie,
I'm so glad that you wrote this blog. I am so sick of all the bashing of our military. I have the utmost respect of every man and woman in the service. These are the people who put their lives on the line for our freedoms. These men, women and there famlies deserve so much more.
Thank you Kristie & Blaine for being such an awesome military family!!

Renee said...

That was more than just informative -- should be in the Air Force Times. Informative, too. Hang in there friend!
7 DAYS!! Cause it's all about us!

Briana said...

You have every right to vent. And you are probably right in that if Blaine were not military, he'd probably be out of a job right now.

2003 was a bad year. It was the year my nephew lost his best friend to leukemia at age four; the year my brother-in-law was diagnosed with lymphoma (now a survivor); and the year my father-in-law died of lung cancer. It just sucked!

Praying that all gets worked out with Blaine's referral soon.

cancermom said...

Kristie, once again, you have cracked me up. I love coming over here when I'm in a "not funny" mood. Changes everything.
We will keep praying for you all!
Love and hugs,
Audra
www.caringbridge.org/co/keegan

Andrea said...

The fact that you've gone through years of infertility, a child with cancer, a husband with cancer and are still even standing up and talking coherently? Makes me 1.) stand here in awe of you, 2.) feel really weak when things in my own life conspire against my family and 3.) get teary eyed that you're willing to share your story with us. Were I in your shoes, I'd be a blubbering idiot.

So you use as many four letter words as you need to. I think you've earned the right.

laughing mommy said...

You are so brave. I'm inspired by your hope and humor in hard times. Prayers for health for your entire family.

jadine said...

After nodding my head at everything you just said, I have only one thing to add and it's in response to this:

"It’s just that in this particular case, that light has usually wound up being an oncoming train, headed right for us."

Okay, here's my comment,

FOR PETE'S SAKE --- GET OFF THE DAMN TRACKS!!!!

Xo!

Wanda said...

To join in on the comments about military healthcare and Walter Reed. I work at Washington National Airport and was checking in a group of guys going to Vail, Colorado for a disabled veterans ski trip. At different times I asked a few of them about what is going on at Walter Reed (all of them were or are being treated there) and all of them responded with "Walter Reed is a wonderful hospital!" And then they said that the media has blown it out of proportion. They also said that sure, some of the facilities are older and such, but the care is state of the art and wonderful! Just thought I would pass that on!

Kris H said...

Well said as usual Kristie. Your family is always in my thoughts and prayers.

Kris H
Iowa