Monday, May 12, 2008


In Which We Visit the Clinic...

Just when I think there could not possibly be a busier month than April, May comes along and blows my expectations out of the water.

Unlike April, which is replete with birthdays and anniversaries, May really only has a couple of birthdays to its name, and those are mostly in-laws, so it's not like they pop up on my computer's calendar and demand major amounts of my time (the one exception of course, is my own birthday, which I will write about in the fullness of time). But May is still busy because it seems to function as our overflow month, when all the stuff we put off in April gets done.

For starters, Her Lovely Self and I got in the car two Sundays ago and drove up to the Mayo Clinic. I understand that when you get older, driving to distant medical clinics for tests and opinions you can't get at home becomes something of a pastime and takes the place of real vacations, but I really would rather have had these kinds of trips begin to occur in my 50s or 60s. Not two weeks before my 40th birthday.

But then, we weren't going to the Mayo for me, but for my wife. As you may recall from a previous post, my lovely bride is afflicted with a rather unlovely case of Crohn's Disease. For a year now, she's been toying with the idea of either getting surgery to correct some of the bigger complications in her digestive tract, or submitting to treatment with a class of drugs that is in itself like surgery, insofar as there's no going back from it. You pretty much have to be on it for the rest of your life. For me, it would be a bit of a no-brainer: in the rock-paper-scissors of life, drugs generally beat having something cut out of you (although you have to remember that this is coming from the man who had back surgery), but HLS sees them as being on pretty even terms. So she does what she always does when she's faced with a big decision: she defers. My wife has many wonderful qualities, but making decisions quickly is most definitely not one of them, and I swear I am not saying that because she made me wait two weeks after proposing to her before she finally said "yes."

Thus nearly a year has passed and we have found ourselves doing nothing. Luckily, HLS's symptoms haven't worsened in that time, but who knows what's going on in there? Not like I have X-ray vision and can check. I confess that I've come to imagine there's some kind of ticking time bomb in my wife's innards and I'd really like to have spent the last year on some kind of mainstream course of correction or remediation.

But it's not my guts, and HLS has been pretty adamant in doing things her way. Thus it is that we've spent the last year pursuing less invasive, less permanent, but decidedly more naturopathic remedies. In short, my wife has started taking herbal supplements and radically altered her diet--and since I eat what she makes, mine too--to see if she couldn't at least keep her disease from worsening.

I know people have passionately differing opinions about the efficacy of herbs and natural modalities. I personally was a skeptic for many years. But then I found myself the editor of a humongous book of herbal remedies and came in close contact with people who were not only confirmed converts, they had actual proof that herbs and natural remedies saved their life, or at least prolonged it.

And I must say, after the first few weeks of eating mostly organic, non-refined foods, I found it easy to adapt to the more natural diet HLS put us on (I certainly didn't mind dropping back down to 152 pounds, after reaching an all-time high of 178).

But--and here's the cruncher--while my wife wasn't getting any worse, she wasn't getting any better. Her disease has progressed to a point where it is what's known as fistulizing Crohn's, which means that her body is creating all kind of new tunnels and loops in her abdomen. So far, she's been very lucky that these tunnels have only gone between other loops of intestine. They could just as easily have tunneled through a vital organ or right out through her abdomen and into the wide world (it happens). The fact that this hasn't happened yet doesn't mean that it won't in the future, unless something is done to stop it, to knock her body out of its flare-up mode and into some kind of remission.

My wife is not a stupid person, by any means. And I think she realized on some level that she was operating on borrowed time. Thus it was that she finally made an appointment up at Mayo. We corralled my in-laws to come watch the kids for a couple of days, and off we went.

And almost immediately, things went to hell.

For starters, our hotel room was the world's tiniest. I'm not kidding. I know from small hotel rooms. I've stayed in hotel rooms in New York City where I could reach out and touch all four walls with my hands and feet, but in this room, if I'd tried it, I'd have broken my fingers and toes off at the knuckles. The bathroom was smaller than a closet; there literally was not room to turn around in there without pitching over backwards into either the shower, the toilet or the sink (it was a miracle that all three fixtures managed to exist in the same space). Plus there was no air conditioning. In my adult life, I have never been in a hotel room that didn't at least have some asthmatic, dripping window unit. I asked about this downstairs and discovered that this week was the week they'd be installing them, one at a time, room by room. I thought about asking them to uninstall a substantial percentage of my room bill in return for the sleepless night I was going to have in their stuffy little garret, but my wife was strangely charmed by the place (Her: "Look, the bed is right next to the windows. We'll get a breeze and we can see that lovely park out there." Me: "OF COURSE it's right next to the window. If the bed were anywhere else in this room, we wouldn't be able to open the door to get out!"). Plus it was only 40-some bucks a night, and the thrifty Yankee in me sang for joy at the thought. Aw, what the hell? We were only spending one night in the place. Right?


So we slept and got up in time for my wife's appointment Monday morning, which was at 6:30. We chose a time so early so that we would have plenty of time to drive home that afternoon or evening. It turned out 6:30 was the first appointment of the day, when the clinic opens its doors. Except of course, nobody told the security people that, so they didn't open the doors where we were standing (along with about a thousand other people from across the country, and in various stages of illness, some quite probably catchy) til a little after 7.

Thus we were late, and thus we had to wait. But at length, we were brought in to the Mayo's storied department of gastroenterology, where we met the doctor who was assigned to my wife's case. And discovered that he was about 16 years old.

Okay, maybe he was 29. Still. I swear, I never thought I'd become one of those crotchety old guys who equated people's relatively young ages with a certain lack of experience--the kind of person I could never stand when I was in my 20s and knew everything, I mean--but there it was. My wife's GI doc was younger than us, and it bugged me.

Right up until he opened his mouth, and proceeded to display such outstanding bedside manner and such tremendous experience and breadth of knowledge that I was ready to adopt the man.

But that knowledge and experience came at a price, and the price was our sense of well-being. Because this doctor was not just any gastroenterologist, but a Mayo gastroenterologist. Where our GI doc at home had maybe seen one or two other cases of Crohn's as bad as my wife's, this guy had seen hundreds. And while that gave him street cred I would not have been willing to grant him almost a moment earlier, it also meant something else: He had seen enough of this kind of Crohn's to know that things were going to get worse for my wife before they got better. He had looked at all the scans and exam reports and MRIs my wife had dutifully sent up the week before, and all of it worried him. In fact, he wasn't entirely sure what to do first: whether to start HLS on meds or to get a colorectal surgeon in to open her up then and there.

"We'll only know once we get a couple of tests done," he said.

"Oh, you mean like blood work?" my wife asked optimistically.

No, he did not mean blood work. He meant a full colonoscopy, which required at least 12 hours of prep time, drinking some nasty stuff that empties you out like the Roto-Rooter man with a streak of sadism. And then after that test, he wanted her to submit to a CT scan. "We have a state-of-the-art machine here that can see things most scans miss," he explained.

My wife looked at me, but I was too busy pulling my jaw up off the floor. She turned back to the doctor. "You know, we only made arrangements to come up for a consult for the day. That's why I sent you all my tests, including two previous colonoscopies. You can't make a recommendation based on what I've already had done?"

The doctor smiled kindly. "With respect, we'll get a much better idea what's going on if we do these two tests here at Mayo. Seeing it for ourselves, in real-time, gives us a view and understanding that we just can't get from reports and copies of scans. You certainly don't have to do it. But I'll be honest: looking at what's here, I'm not sure but that you may need surgery right away. I don't say that to scare you. It's just that there's not enough information in the materials you've sent. If there's any way you can stay tomorrow and Wednesday, it'll make a world of difference. We'll get the scans tomorrow, process the results and have a consult with the head of the department and our chief colorectal surgeon on Wednesday."

And here's another sign that I've become a crotchety old guy: Time was, the news that I'd have to stay longer than expected in a strange city would have been cause for excitement, a call to adventure. I can think of several instances in my youth where such unplanned delays led to some of the greatest adventures of my life (the time I went to Providence to care for my brother is just one example, the very least of them). Now my first reaction, I'm embarrassed to say, was Are you fucking kidding me?

But I also knew that we came up here to get some answers, and a course of action, and if staying another 48 hours would get them for us, then by God that's what we'd do. Even if it meant staying in that tiny stuffy room through Wednesday.

So I put on my bright face and patted my wife's hand and said, "All right. Done deal. Let's call your folks and tell them."

But as the doctor left to get some paperwork filed and to write a prescription for the Roto-Rooter stuff my wife was going to have to take, Her Lovely Self turned to me with tears in her eyes. "But, what if my parents can't stay that long?"

"Are you kidding me? They're retired. What else have they got to do but take care of grandchildren?" I said, having the funniest feeling that I might come to deny ever saying such a thing in the far future, when I was in retirement.

"And what about the kids?"

"They'll be fine. It'll be exciting for them," I said, like it should be for me, I thought.

"But...what about Thomas?"

And here was strike three on my crotchety old guy checklist: At first I thought my wife was just talking about my son's tendency to freak out over any unexpected change in his routine (something that was a problem when he was younger, but not so much in recent years). But clearly I was growing so old and enfeebled that I had forgotten something very important, one of the many reasons why May was such a busy month for us: Thomas had just started Little League. More than that, he had been practicing in the back yard with me every night, for a very good reason: On Tuesday, he'd be making his debut as pitcher. If we stayed, we were going to miss it. And I had completely forgotten.

"Oh fuck. I AM getting old," I said, to no one in particular...


Poor Thomas. And even more HLS.

So did she go for the Fast&Blast?
Look at it this way, by staying she'll be around to watch all the rest of his games.

Missing the first could ensure that she'll be around.

Praying for you both.
BTW, thanks for being one of my favorite websites. I listed your website as my favorite, and was selected as the winner from a number randonly selected.

Thanks for bringing me good luck and no, I'm not sharing the camera. :)

contest website:
My husband had a liver transplant at the Mayo Clinic here in Jacksonville, FL. The Drs tend to do that -- schedule you right away. The great est thing is that you are now on the top of the list, the top of the conversation and a whole team of surgeons, specialists, and other assorted doctors are all talking about you. They are truly amazing. Anything you can do to get their undivided attention is what you need to do.

Mayo usually works so quickly it can make your head spin. They will also sit with you and explain everything in the most minute detail - so if you have questions, comments or concerns make sure to write them down and discuss it.

Mayo Clinic is truly incredible. I hope it all works out for you.

I was thinking about saying that I got this site from the lucky winner of the Pioneer Woman giveaway. :)

Then I got to chatty LOL

got your site from aforementioned contest by PW
adding to my favs
interesting HLS journey as I know someone with similar battle
though I've been around long enuf to know each journey is unique! I wanna hear more...
Another link from PW and Kimberlydi...

HLS, you and your entire family - in my prayers!
My, I'm sorry you faced such a dilemma over what to do. Hope everything worked out well, and looking forward to hearing the rest of the story.

The smallest room I ever stayed in was at a Microtel. Once I got to my room, I understood why it was called Micro. But they did have air conditioning.
Wishing you and your wife the best of luck with this challenge...

And hope you get a better hotel room too!!! As a veteran of hospitals (albiet the Aussie and not American versions) I can only say: suck them dry of their knowledge and expertise. Make that drive worthwhile. It might not be fun, but it sure as hell is necessary.

Hugs to your little man too.

NB Also over from PW's.
Feels weird to be advocating the absence of your presence at Thomas's first game as pitcher, after all you did to practice with him, but I really hope you stayed and HLS went though the workup. It's so tough to get timely and excellent health care, with doctors focusing solely on you.

I really hope this went well.
With your wife's recent natural diet I don't know if she considered goigng "dairy-free" as dairy causes a lot of inflammation.
It takes a few months to see results but may be worth a try. Good Luck.
I hope this story has a relatively (obviously HLS isn't going to be magically cured of Crohn's) happy ending. This is not a very fun "...".

Good health and happiness to you and your family.
I just came here because a reader of yours entered a contest at Pioneer Woman. Her name is Kimmy. Now I think I'm hooked! LOL

I have to come back and check on HLS and Thomas!! As a Mom of a son who played practically every sport, I KNOW how important this is!

I'll be back...great writing!!
Oh, geez. Tough calls all around, MM. I see that the next installment is posted, so no need for me to speculate, thank God.
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