Off the Deep End: The Crud Chronicles

Re-entry

2010-03-07T16:50:00.014-05:00

We've been hurtling through the earth's atmosphere over the last couple of days, re-entering our normal plane of existence after our sojourn in that Alternate Universe of Cancer.

I travel quite a bit, so I'm used to coming home after being away. But this time around, it really felt strange landing in our hometown airport, getting in our car, arriving at our front door and then opening the door to our house. We went in and just walked around for a while, touching things and breathing our own air.

Now that a few days have gone by, and the flurry of unpacking and greeting everyone here has settled, I've spent some time pondering why coming home felt so very different this time. Here's what I've come up with:

For one thing, although the drawer where I keep old boarding passes is filled to the top, in all those other past trips we typically haven't stayed away so long. When we got home a couple of days ago, however, the calendar on our fridge still was turned to January (it's March), and the Christmas cards we'd received were still on the sideboard in the dining room. Two months is a long time to be gone.

For another, disengaging from that long set of treatments at RFH takes a little out of a person, as does saying goodbye to everyone at the Hope Lodge with whom we shared such an intense experience.

And finally, despite some past odd travel moments, our trips don't usually have us thinking so much about our own mortality. This time, as you might guess, the whole issue of one's lifespan was front and center in our thoughts. Brain cancer has a way of focusing your attention on just how many days we have left together on this earth.

But, now that we're home, we're focusing on Dr. God's parting words, said with great assurance: "You have a 95-98% chance that this was a complete cure." Where else can you get odds like that?

So we're going about our normal business, or trying to, anyway. The sunshine here at home today is a bright harbinger of spring.
Life is good.

We're ready to resume regularly-scheduled programming

2010-03-03T14:29:00.003-05:00

Ringing the bell? Check.

Celebratory dinner? Check.

Bags packed? Check.

Hugs and emails exchanged with friends left behind at the Hope Lodge? Check.

Oh, and: Brain tumor zapped into oblivion? Check. Make that a double check.

We're on our way home.

What's with the plural, anyway?

2010-02-28T21:03:00.005-05:00

Astute readers such as yourself certainly have noticed by now that this blog is riddled with first-person plural pronouns, as in--

We feel a bit like we're sailing off into the unknown

I knew our adventures were beginning last week...

Now that we're past the halfway mark...

...we might sail through the rest of the treatments just fine...

Soon, it [ringing the bell] will be our turn...

"What is up with this?" you may have been wondering. After all, you know as well as I do that I'm not the one with a brain tumor, well, I don't think so anyway, and I'm completely sure that I'm not the one getting proton beam therapy.

In any case, I admit that there is a heavy use of we, our, and ours in this blog when I'm talking about P.'s condition and treatment. I assure you, though, that all the rest of the caretakers here at the Hope Lodge are talking the same talk.

I guess this is inevitable. When any family member has cancer, it is more than a little bit like you do, too. And when you are the primary caretaker for that person, the warp and woof of your loved one's day and yours have an enormous amount in common. If your caretaking duties go a step further, and you have been pretty much completely lifted out of your own world, like say, by moving 400 miles away from home for two month's of treatment, you'll find that your sense of self is even more intertwined with your caretakee's.

In fact, if you were to walk into the waiting room of the proton center or the kitchen of the Hope Lodge right now, it might take you a while to figure out which person in each couple was the patient and which one was the caretaker. In part, this is because a lot of cancer patients actually look pretty darn good, like P. does. But, I have to say, that it is also because some of the caretakers look rather worn out, almost like they could be the ones getting treatment. During our time here at the lodge, I know two caretakers who have been rushed to the ED because their own health issues needed urgent attention, others report fairly often that they have had to stay in their rooms for a couple of days because they caught a bug, and still others have talked about getting in touch with their doctors about lining up some badly needed health care for themselves once their loved ones' treatments are concluded.

Thus all those plural pronouns. We're just all in this together. For better or worse, and all that.

This linguistic twitch is probably just temporary, a little like the bald spot P. has on the back of his head where the proton beam has been pointed. His hair will grow back, and my use of plural pronouns will become more appropriate.

In the meantime, though, dear reader, I know that you know somebody right there in your own town who is heavily involved in caretaking duties at the moment. You might have given him or her a kind thought or two, or even put in a optimistically-worded email or call.

Let me urge you to take those caring thoughts a step further. Bring that caretaker a nice casserole. Take him or her out for a coffee break, or offer to take on an afternoon of caretaking yourself so that person can get caught up on work or, better yet, on sleep.

Don't just think kind thoughts. Do kind deeds. They will be appreciated.

Hello Goodbye

2010-02-24T14:49:00.004-05:00

The residents at our Hope Lodge are an ever-changing lot. Every few days, we meet a couple of newbies who have just checked in. You can spot them in the kitchens, nervously opening and closing drawers and cabinet doors, trying to find a measuring cup and hoping that they are going to get the hang of communal living soon. (Actually, they hope that they will hang onto just plain living, given that everybody here is a draftee in the Cancer Army.)

And, as some folks come on board, likewise, every couple of days, somebody else finishes up his or her long, long course of treatment. Having rung that bell, these couples say goodbye to the rest of us at the lodge who are still doing time with the proton gizmo, the photon gizmo, or some other techie cancer zapper.

When we were the newbies ourselves, with only a couple of treatments under our belts, we would chat with the old-timers, the ones who were coming close to wrapping up their 35 or so sessions. We would say something like, "How wonderful that you'll be going home in just a few days! You must be so excited!"

To a person, they all mostly just looked back at us, slightly glassy-eyed. Their replies were never as exuberant as I would have expected. "Yeah, sure," they'd say. "We're happy," they'd add, without a smile.

Where were the "yippees!" and "hurrahs!" I'd wonder. Weren't they glad to be done? Didn't they want to go home? Or were they just hiding their glee not to rub our faces in the fact that we were still hitched to the zapper machines with weeks left before we'd get sprung?

Now, a couple of months later, we're the old timers ourselves, with just four treatments left to go. And I understand their reactions completely.

Some people, we now know, aren't all that jubilant because, while they may be finishing up one round of treatment, there is something else in the works (surgery, chemo, etc.). Others are subdued because they know that they are still playing the long odds with cancer, so they are going home hoping that nobody is going to be writing an obituary about them at some point that starts with that awful phrase, "After a long and courageous battle ..."

Some folks, like us, got the luckier outcomes. We don't have another round of treatments to go through, and P.'s doctors feel confident that his proton treatment constitutes a near-100% chance of a complete cure.

I can tell you, though, that we lucky ones are looking back just as glassy-eyed at the new folks who are telling us how great it is that we are going home soon. Not because we aren't really, really, really happy to be finishing up, or that we aren't eager to get back to our lives.

It's just that, after this many weeks of living in an alternate universe, we're all just tired.

Next week, nonetheless, however wearily, we do plan to set off fireworks. Since the lodge forbids flames of any kind, we'll have to make do with virtual sparklies. Preview below.

Waiting for the bell

2010-02-17T15:29:00.002-05:00

Those of you who have remained blissfully unaware of the cancer treatment world probably don't know about The Bell.

I too didn't know a thing about The Bell until we were getting ready to come here to the Really Famous Hospital for P.'s zapper treatments. But we know about it now. And we're waiting to hear it peal.

To fill you in, these bells are affixed to the walls outside radiation and chemo rooms all around the country. On the last day of someone's treatment, family members crowd around to snap pictures while the patient rings the bell. Everyone in the room erupts in applause--doctors, nurses, technicians, and, most of all, other patients who know just what an accomplishment is represented by that golden sound.

Blog entries about the bell abound, as in here and here and here.

So it's big deal, this bell ringing.

As the weeks have gone by, we've watched a lot of other patients get to ring the bell as they've wrapped up their 30 or 35 or 40 sessions with the proton beam. This often involves cake, watered by tears.

Soon, it will be our turn. We're on schedule for P.'s bell ringing ceremony soon, since he's got only nine treatments left to go.

I've got the camera ready. Think we'll get all weepy, too?

You betcha.

The Best / Worst Lists

2010-02-06T16:10:00.011-05:00

Now that we're past the halfway mark in P.'s treatments (yay!), I feel we've logged the requisite time and experience to pass judgment on the best and worst features of what we've been dealing with to date. I'd like to end this post on a positive note, so let's get the top five not-so-great items out of the way first:

Worst List # 5: Shopping just isn't the same here. How's that for a trivial-sounding issue, given that we're here dealing with the Big C? I know I'm coming across like the Princess and the Pea on this topic. But, while I don't give a fig about shopping in general, cooking and beading are my release valves for this pressure cooker we're in right now, so I'm longing for access to the same range of foodstuffs and bright shiny beading objects that I can get at home. For example, there doesn't seem to be a tornado crimp within a hundred mile radius, and the region's lack of the world's most magnificent grocery chain merits an entire post of its own, coming soon.

Worst List #4: There is a lot of cleaning to be done every single day. I knew that would be the case, given the more-or-less communal living situation we're in and that fact that everyone here is dealing with cancer. Some of the folks getting treatments just aren't up to doing much housekeeping, of course, and their family members are often dealing with overwhelming caretaking duties. Others, less burdened by illness, simply weren't raised by my particular mother (i.e., the Majestic Goddess of Universal Cleanliness). So, along with a couple of others here, I'm logging in a lot of hours with the scrub brush and the bottle of disinfectant down in the kitchen, trying to keep things hygienic, especially for the stem-cell transplant patients.

Worst List #3: Schlepping back and forth to the hospital over and over again. It takes us 37 minutes, door to door to get from the lodge to the Really Famous Hospital by public transportation, and it's about the same by the shuttle. So this really isn't a ridiculously long ride. It's just that the doing of it each and every day Monday through Friday is getting seriously old.

Worst List #2: It's cold, really cold, outside and it pretty much has been this way for the entire time we've been here. If this stint in treatment far from home had landed us here in June and July, we probably would have been griping about wasting the few short summer months in the aforementioned treks to the hospital. But at least we would have have been able to go for leisurely walks among this city's lovely neighborhoods and parks while we were complaining. As it is, we're not walking in a leisurely manner at any point; we're dashing through the frigid February outdoors trying to get inside as quickly as possible. As I type, it's 22 degrees outside. You skiers out there may be scoffing. Go ahead. I know I'm a wimp.

Worst List #1. We're here because of a brain tumor.

Ok, you're sick of hearing me kvetch and so am I. Here then, is my list of the top five good things about being here.

Best List #5: We love the art museum that is a just a mile or so from the lodge. In a city famous for superb museums, this one is a standout. We go every Wednesday evening, when admission is by donation only (yes, we do make a contribution--we're not complete freeloaders). We decided at the outset to start at the beginning and work our way forward chronologically, so we commenced with the Old Egyptian exhibits and went on from there. In our four visits to date, we've made it through the Etruscans, the old and new Greek exhibits, the old and new Romans, and we're partway through all things Asian. Simply awesome stuff, especially the Greek vases and the Chinese ceramics. However, if we're going to make it to the rooms with the contemporary work by the time P. is done with his treatments, we are definitely going to have to pick up the pace. Since art that was made five minutes ago is one of my special pleasures, I am motivated to keep going.

Best List #4: We have a place here at the Hope Lodge. Some people now at the lodge previously had to stay for some length of time in random hotel rooms while waiting for a room here. They report that it was as gloomy and as isolated as I feared that type of housing situation would be. I continue to be thoroughly grateful that we are here for the whole of P.'s treatment regime, even if I am sort of the Cinderella of the kitchen (see griping above).

Best List #3: My cousin has been a wonderful friend and native informant here. Since L. has lived in this city for 20-plus years, she has deep expertise in what is worth going to and how to get there. A special plus is the fact that we share many of the same interests and preferences. I should mention, too, that she has been fabulously patient with us, even when we keep calling her for help when I break things (e.g., a tooth, my glasses). She always has good suggestions for how to find an expedient remedy. She is a discerning restaurant guide; we've had terrific Thai and Indian meals here, both very high on my list of great cuisines. And she's been good company during a complicated time in our lives.

Best List #2: P. continues to be experiencing few side effects. Having gone through 19 treatments now, he's had plenty of time to watch for the potential bad by-products of having a particle accelerator pointed at one's head Mondays through Fridays. But, so far, he's doing great. His doctor says that, since he has made it this far this well, we might sail through the rest of the treatments just fine.

Best List #1: The doctors say to expect a complete cure. And so we are.

Bonus Item: I do know how to bead without any tornado crimps whatsoever:

Just in case you were wondering...

2010-01-27T21:49:00.004-05:00

...yes, I've read this scary-sounding article. I certainly gave this whole topic a lot of thought before we even arrived here at the Really Famous Hospital for proton therapy. After all, getting sloppy with the beam emitted by a linear particle accelerator could be very bad news, just like the awful stories reported by the NYTimes.

But my worries were laid to rest for one simple reason the minute we talked with Dr. God: he is the most systematic, the most precise, the most meticulous human being I have ever met. In fact, while in general life I personally am known for being rather, um, exacting, (here come the Field Marshall references again), in comparison, this guy makes me look like a shaggy beach bum doing a face plant in the sand after one too many cervezas.

Dr. God seems to be known all over town for being particular. Doctors, technicians, nurses from various departments and even other medical facilities snap to attention when they hear that P. is one of Dr. God's patients. They tell us that he has his own set of standards for how all procedures are to be done, and that he laughs to scorn their usual way of getting things done.

I figure that if meticulousness was an Olympic sport, he would be awarded the bronze, the silver, and the gold medals. In fact, not only would they retire his jersey, they would retire the whole damn sport, since they would know that no one else could ever compare, even palely.

So no, I'm not worried. Now the proton beam technicians? I bet they are sweating bullets every day with Dr. God watching over their shoulders...and, in this situation, that's a good thing, right?

Our home away from home, part two

2010-01-23T21:36:00.007-05:00

In describing living at this Hope Lodge, I'm tempted to fall into a cliche and tell you that people from all walks of life are here as they are going through their cancer treatments.

But that wouldn't exactly be true; for instance, there aren't any kids living here, since families in that tough situation have access to the Ronald McDonald house. I've noticed that there aren't any really elderly people in residence either. Some retirement-age folks are here, but mostly of the "young" old set, if you know what I mean.

I wonder about the "middle" old or the "old" old who are diagnosed with cancer. Maybe they aren't so likely to be prescribed long courses of treatment away from home in the first place. Or maybe they do receive these recommendations, but it's just harder for them to pull the logistics together to carry the whole thing off. I don't know what the reasons are for sure; I just know that much older folks aren't living here right now.

I'm guessing, too, at least from how people describe themselves, that there aren't too many extremely well-to-do patients and their caregivers here. After all, really affluent people could just book themselves into a snazzy hotel near the hospital. In fact, as I type, these rich folks are probably in these fine hotel suites right now, eating bon-bons delivered by room service and stretching out on 600-thread count sheets. (Not that I envy them. Rich people who have cancer still have cancer.)

My impression is that most residents are not from the other end of the socio-economic spectrum either. It's hard to get access to long-term treatment if you don't have health insurance. Actually, readers of this blog will remember that it isn't all that easy to get into treatment even if you do have insurance.

A few folks have made it here without jobs and insurance, a real miracle in our culture and economy. They have pulled this off thanks to the zealous efforts of some social workers or other providers who helped these families with the heavy lifting needed to get here and get going with surgery, chemo, regular radiation, proton therapy or a potpourri of the same.

But most people here, at least at from what we've seen so far, are closer to our demographic, i.e., middle-aged couples who were busy in our jobs before cancer dropped a bomb in our lives. Some of the other couples are younger and still have kids at home. I'm really feeling for them, having to leave their children with other relatives for months at a time. Most, though, have grown kids, so there is less stress on that front.

There are some other combinations, though, of patients and caregivers, like mothers who are here in support of their adult sons, sons who are here as the caregivers for their mothers, ditto for fathers, daughters, etc.

The writer in me would like to give more details about our fellow residents, but I'm mindful that, while a blog is hardly a HIPAA-protected environment, these people probably would rather not have their lives trotted out on the internet right now. So, with regrets, I'll just be vague about where our co-residents are from, what they do for a living when they aren't here, and what cancer has done to their lives.

As you might imagine, we are hearing stories, sometimes as small groups sit down to watch a movie or work on puzzles in the living rooms, but more often when people gather in the kitchen to put together meals or just grab a cookie.

Not all of our conversations as we are stir frying the veggies are about cancer. Sometimes people just chat about the news or something they've seen on TV or, for the more able-bodied, where they went after their treatment sessions at the hospital. But a good share of the time, pairs or little groups of people are standing at the counter chopping onions or perched on the stools with a cup of coffee and talking about how that diagnosis got made--often with an emphasis on how long it took to get it right--or they are detailing what the chemo or the radiation treatments have been like for them. There is a lot of conversation about how to cope with side effects--Acquafor seems to be a hit for dealing with proton therapy sunburn, for instance--and how to communicate with the doctors.

But the most popular topic of all?

The date when you get to go home. The hands-down fav subject, bar none.

Our home away from home: Part One

2010-01-17T21:29:00.004-05:00

Inquiring minds have wanted to know: What's it like to live at a Hope Lodge? We wondered (a lot) about this, too, as we were making our preparations to move here. Now that we've been here a week as of today, we're ready to file a report on All Things Hope Lodge.

Without a doubt, the most predominant feeling around this place is gratitude. Everybody here knows that, having gotten one spectacularly unlucky roll of the dice (the Big C), s/he then has rolled a couple of fortunate ones: first, being accepted into some kind of treatment program and, second, getting a space here at the Hope Lodge, where patients and caregivers can stay at no cost for the duration of their treatment programs.

The whole idea of these lodges is pretty incredible, kind of like Ronald McDonald Houses for big people. While there are Hope Lodges in quite a few different locations in the U.S., we're in one of the newest ones. Everything here was designed to make getting through an extensive treatment program away from home do-able, from both a logistical and a psychological perspective.

When we knew that P. was going to need these treatments, but before we knew about these lodges, we thought that we would end up in an anonymous hotel room off somewhere in the city, or in a cramped and dreadful short-term apartment. We'd pictured trudging back from the hospital to some such place these dark winter evenings and just being there, alone and worrying about the bills mounting up.

What we have instead is our own airy little suite that includes a living room, bedroom, and bath--all nicely furnished and decorated in soft, restful colors. And we have access to all of the rest of the facilities of the lodge, including larger living rooms on each floor, a game room, laundry rooms, computer rooms, a room for yoga and meditation, a small library, and little reading nooks scattered here and there in quiet spaces.

All of this is wonderful, of course, but the heart of the place is the kitchen, like in most any home. Surrounded by natural light, this lodge's kitchen includes a fully equipped kitchen "pod" in each corner with tables for four clustered in the middle of the room. Having food in the suites is verboten, ostensibly to keep the furnishings in the suites in good condition. That's probably true, but I think the real reason for this rule is to get everybody out of their suites for at least part of the day so they can mingle a bit. And mingling with people who are dealing with something like what you're going through is just good medicine.

By way of explanation...

2010-01-16T21:16:00.007-05:00

It occurs to me that it surely must have occurred to you that I must be one hard-hearted field marshall, given the way I'm endlessly going on and on about logistics of P.'s treatment (insurance, appointments, planes, places to stay....) and not saying much at all about the state of this cancer patient's well being. Maybe you've even imagined me tapping away here while he's been writhing in misery in the background.

Let me assure you, there's been no writhing going on here, well, except for all the fussing about the inevitable disruption in our routines demanded by our move 400 miles from home.

H'mm. I don't mean to sound flippant about this. I know all about writhing, having been a long-standing, unwilling owner of this not-so-fun disorder and the temporary owner of one of these bad boys. (Note: the latter made giving birth without medication--yup, I've done this, too--seem like stubbing one's toe.)

So, no, I'm not glib or off-hand about pain at all. In fact, I have buckets full of respect for it. All the more reason why I'm happy to report that we caught P.'s skull-base chondrosarcoma before we were in the lightening-bolt headache (and seizure) zone.

As for the proton therapy treatments, he's got five under his belt now and is absolutely fine. The doctor tells us that he may end up with some sunburn-like effects eventually on the back of his head, in his ear canal, and in his throat. That doesn't sound like a day at the beach, but, in the scheme of things, these possible side effects don't sound like a bad trade-off for the chance to rid of that brain tumor.

We got this party started

2010-01-11T21:07:00.006-05:00

Dear Reader,

Mea culpa. I know that it is not so nice to leave off a blog about cancer abruptly. A reader can't help but wonder if a sudden lack of posts indicates an equally sudden emergence of gloom and doom.

No worries, I assure you, and no gloom either, except that brought on by winter weather in a northern clime. In fact, things have gone along quite swimmingly since my last post: we had a perfectly lovely holiday, especially since Mr. Adorable was part of the event. Gotta love the jammies.

Now we're here in our new home away from home--400 miles away from home, in fact. The trip here was fraught with (1) multiple de-icing of our first flight, (2) a missed connecting flight, (3) lost luggage and, what sent us into the biggest freak out, (4) the loss of the brand-new Kindle that Santa had just given me.

But our airplanes managed to stay in flight according to manufacturer's specifications, we arrived in our destination city only a few hours late with the restored Kindle in hand (whew!), and our luggage followed a few hours after that. The nice JetBlue delivery dude brought our bags right to the hotel where we stayed for the first night before we checked into the Hope Lodge.

What's more, P. made it through his first treatment with the proton zapper today--and he did fabulously! One down, 34 to go.

We can do this.

Mother, May I? Yes, You May!

2009-12-22T19:58:00.005-05:00

Hurrah--it looks like we finally have the green light from the insurance company. We don't know precisely how green the light is, i.e., what absolutely for sure will and won't be covered at the end of the day, or make that, "at the end of 35 treatments." But right now, we're proceeding apace with getting stuff crossed off that To Do List From Hell.

All the MONTHS of diagnostic hoohah? Check.

Accepted for treatment at RFH? Check.

Place to stay? Check.

Flights? Check.
Insurance? Check!

We have a little more fiddledeedee with P.'s leave of absence to complete, but that seems to be coming along, too.

So maybe, just maybe, we can start singing the Proton Therapy Song (courtesy of Anastasia at http://www.myspace.com/anastasiasings).

Beads & Protons: An Unlikely Metaphor

2009-12-20T18:25:00.010-05:00

Aristotle tells us that the ability to see metaphor is the hallmark of genius. You're a genius, right? So stay with me here as I try to work out this metaphor between beading and proton therapy...

We'll start with my love of beads. I'm sure it isn't a reflection of any innate talent, but more just a draw toward bright, shiny objects. But I am enthusiastic about beading, and they know me by name at my local bead shop. They should, given the unseemly amount of my net income deposited there each month. Some of my expenditures have been on nice, big beads made out of jasper, moon stone, tiger eye, and so on, beads you can pick up with your fingers and thread on a wire without incident or a whole lot of skill.

But, since I'm now getting into off-loom weaving, most of my purchases these days are in the seed bead section. For you bead virgins, seed beads are the kind that come packed by the hundreds in little tubes, and, individually, are too small to be seen by the naked eye. Well, not really, but they are too small to be dealt with by my naked eye, thus the magic lamp that makes all things possible, beadwise.

Getting started on a beadweaving project requires pulling lots and lots of whisper thin, tangly thread through these infinitesimal beads. As you might imagine, as I am guiding 15 or 20 feet of thread through the first few tiny beads at the start of a project, there is a lot of snarling going on, by both the thread and by me. More time is spent at first on untangling knots and jabbing myself with the needle than on actually getting any beads together.

There are moments when I feel like chucking the beads right through the window, along with the magic lamp and the whole kit and caboodle of bead gear. But I usually just stick with it, and once I get enough on rows of beads put together, the piece starts to take shape, and the whole zen of beading thing begins to kick in: pick up a bead and stitch and pick up a bead and stitch....

It actually becomes calming and eventually you end up with something that is finished and put together well enough.

I've been thinking a lot about this as we've been working to bring together all the necessary, but initially shapeless, elements of P.'s treatment plan--wrangling our way through all the diagnostic steps, connecting with Dr. God's crew long distance, the waiting, waiting, waiting for the insurance approval--all of the things I've been whingeing about throughout this blog.

At this point, I like to think that we have made it past the initial snarly stages, and that things are coming together. Maybe we even have a routine that is helping us reach the stage when treatment can finally begin. At least I hope so.

Where are we going? And how will we get there?

2009-12-15T20:34:00.005-05:00

When it comes to psychological questionnaires, I tend to be more than a bit skeptical. All those acronyms and the accompanying psycho-babble just give me hives. And, on principle, I resist the notion of putting people into little bitty boxes with labels on them.

But, I have to admit, I have a guilty pleasure: I've taken various online versions of the Myers-Briggs inventory. It's just kind of fun.

Sometimes, the results come back telling me I'm an ENFJ. Ok, so it's an acronym, but I like it when the internet comes back to tell me I'm a member of this helpful group of people. Here's one description of these folks:

Warm, empathetic, responsive, and responsible. Highly attuned to the emotions, needs, and motivations of others. Find potential in everyone, want to help others fulfill their potential. May act as catalysts for individual and group growth.

Ah, isn't this sweet to find yourself so described? An ENFJ is commonly called The Teacher. Kind of fits, since I've been in academia for so very long.

But, truth be told, sometimes when I take one of these inventories, I'm find out that I'm an ENTJ instead. Those of you who know the Myers-Briggs (or me) are already hooting. For this is the type known as:

The Field Marshall

This fits, too, I have to admit. A "teacher field marshall" is, after all, a pretty apt job description for a college dean.
Since I buy my clothes in the petites department, though, I maybe I should substitute this photo:

Another Field Marshall

This isn't to say that all ENTJs are guys. Oh no, women can be field marshalls, too:

Still Another Field Marshall

Hoo boy.

Supposedly, less than 2% of the U.S. population could be categorized as ENTJs. The other 98% are saying, Thank god!

Sometimes, though, it's handy to have a little ENTJ blood running through your veins, I'm discovering. Getting proton beam therapy lined up for a spouse is definitely turning out to be one of those times.

Here's what we've managed to make happen so far:

1. X-rays, CT scans and MRIs too numerous to count, PET scans.

2. Bloodwork--who even knows what all those tests have been.

3. A modified barium swallow.

4. Multiple offices visits with his PCP, his neurologist, two different neurosurgeons, an immunologist, a speech specialist, an otolaryngologist, and some other people I've already forgotten.

5. A needle biopsy--a big kahuna

6. The compilation of the Encyclopedia of P for Dr. God.

7. Dr. God's willingness to take the case--an even bigger kahuna.

8. A date for the planning consultation at the Really Famous Hospital: January 4th.

9. Dates for the proton beam treatment itself: January 11 - March 2.

10. A place to stay during the treatment.

11. Flights to get there.

Getting this all done most definitely required some Patton-level mobilization.

Now, though, we are awaiting what might be the mother of all big kahunas: getting the insurance pre-authorization. We're getting our ducks in a row, keeping our fingers crossed, and trying not to twitch as we think about how much proton therapy costs.

I'm really hoping that things go our way. Otherwise, I'm gonna need to channel yet another ENTJ:

Someone should warn the insurance company, no?

Finishing up the back story: Life BC, Part Three

2009-12-11T20:11:00.004-05:00

There we were, learning that there probably never was a blood clot in the first place (can we get a refund for all that warfarin, do you think?). Now we were entering the surreal and scary land of tumors.

After we scrambled around that day in October, making appointments for consultations and further tests, the thought of getting a second opinion started to seem like a really good idea. After all, the neurologists and neurosurgeons who were part of P.'s team were never actually picked by us; they were just the folks on duty the day back in April when we were ordered to show up pronto at the ED.

I'm the sort of person who reads Consumer Reports, Epinions, and each and every one of the reviews on Amazon.com when I buy a toaster, for pete's sake. Wouldn't it make sense maybe to get another point of view on brain tumor?

The more I thought, the more I decided I really, really liked the idea of this second opinion. But as soon as I thought this, a bit of panic snuck in. How do you find a second-opinion person who is any more qualified than the first one?, I thought. Somehow letting my fingers go walking through the Yellow Pages, virtual or hard copy, hardly seemed the ticket. I'm not comfortable doing that to find a good plumber.

The panic level ratcheted up a notch or two--or ten. I was chastising myself for having previously neglected to friend any neurosurgeons on Facebook. Nor had I Linked-In to anybody like this. AAACK!

Just as I was about to plunge off the deep end, the little, more rational voice inside said, Get a grip, girl. You work at a research university that has a teaching hospital attached to it. Go network already.

So I did. My first stabs at this were sort of just flailing around. I contacted a colleague whose wife is an obstetrician (ok, so that was a stretch). Then I contacted somebody else in family medicine. And a colleague who teaches at the med school.

Then I remembered that--drum rolls here--I know somebody who works in our hospital's comprehensive epilepsy unit, helping neurosurgeons plan highly complex procedures. She has years of experience working side by side with them in the operating room.

Bingo.

I sent her an email, and she was on the phone very soon after, with a referral to Dr. Spectacular.

Then I had another bingo moment: I booked an appointment with Dr. Spectacular for the very day after we were scheduled to meet with our first neurosurgeon.

And here's how it went after that:

We go to the appointment with the first neurosurgeon. He says, Let's go in and debulk that tumor. It's probably a schwannoma, nothing much to worry about.

I say, How about a biopsy first?

He says, Too dangerous and there's no need for that. The surgery will basically be the biopsy.

We say, H'mm.

And 24 hours later, we go to the appointment with Dr. Spectacular (an older, wiser kind of guy). He says, Let's find out what we're dealing with. I know someone we can trust to do the biopsy. We shouldn't rush in to do surgery until we know more. In fact, I'd want you to go off to one of the very best centers in the U.S. for treating this sort of thing.
We say, Can we friend you on Facebook? No, not really, but we do decide to hitch our wagon to Dr. Spectacular's star.

The biopsy a few weeks later was a little unnerving; that needle needed to enter some pretty high-priced real estate, but the biopsy doctor was truly gifted, and it went off without a hitch. P. ended up with only the tiniest little pinprick by his ear as evidence that this had been done.

Well, the other evidence was the biopsy report, telling us that we were far away from the land of blood clots or puny-weight, wussy schwannomas.

No, we were now playing with the big boys off in the Cancer League.

Back to the Back Story: Life B.C., Part Two

2009-12-07T20:07:00.006-05:00

    Where was I? Oh right, I'd just gotten the doctor's call telling me that P. needed to go to the ED right away. From there we launched into a wild morning in emergency medicine. A representative sample of the wildness was about two feet from P.'s stretcher in the form of a flailing, stoned-outta-his-mind roommate. The roomie spent his time in the ED cussing so much the ceiling tiles were blistered and biting the nurses as they tried to tie him down. He finally ended up with a net over his head, making him look like a high, unkempt beekeeper.
    We ourselves refrained from biting any health care providers during our time there.
    The prevailing opinion was that we were looking at a cerebral venous sinus thrombosis, or, basically, a blood clot. P. was admitted to a regular room where nobody was biting anybody. Over the next few days, he was scanned up one side and down the other and started on some industrial strength anticoagulants. Troops of doctors of various descriptions poked, questioned, and wrinkled their brows. There were little huddles of conversations out in the hallways among the doctors about what was really going on (I have very good hearing). I could tell by doctors' unease that we were looking at a zebra of some sort. But the blood clot idea was their story and they were sticking to it, at least for the time being.
    After a week, P. was discharged with a prescription for still more anticoagulants and a plan for surveillance scans at intervals. So, in the intervening weeks, he had repeat scans and we went in for consultations from time to time. They said don't worry. And, after a couple of months, we stopped worrying, at least for the most part.
    By July, we had clearance to travel. So we did. We had a fabulous time.

Once we got back, we were soon caught up in back to school preparations and almost forgot about those repeat scans and doctor visits. But I did the nagging wife thing, and P. made the appointments.

It was a mid-October scan that finally sealed the deal. We got a call telling us, saying, in essence, That clot? Well, forgeddaboutit. It's a tumor.

Now that we've reached another Pauline moment, I'll pause once again. Stay tuned for Life B.C, Part Three. I promise to wrap up the back story in one more post so we can jump into the exciting discussion of P.'s upcoming date with the proton gizmo. I bet you can't wait.

We interrupt this regularly scheduled blogging to bring you this important announcement

2009-12-05T15:09:00.007-05:00

I'm hitting the pause button on the rest of our back story for the moment, since we received an important call this morning from Dr. God.

P.'s in, as in, accepted for proton therapy. We're celebrating!

We're especially happy because Dr. God tells us that (1) the chondrosarcoma is "eminently treatable" and doesn't need to be resectioned first. Whew, twice over.

So we're off to the Really Famous Hospital for an all-day consultation and testing appointment on Monday, January 4th, with treatment scheduled to begin on Monday, January 11.

The plan is for seven weeks of treatments, for a total of 35 sessions. Dr. God puts the end date at March 2.

It feels great to have an actual, real live plan.

Oh, BTW: He started out the phone conversation by complementing us on how well written my "encyclopedia of P." was. He said that this document made it easy for him to understand the nature of P.'s case and get back to us quickly. I'm just like a graduate student whose adviser likes my dissertation chapter--I'm just all proud inside. And relieved.

Life B.C. (before cancer), Part One

2009-12-03T19:53:00.008-05:00

Dear Reader, if you already know our back story, you may wish to skip this post altogether. Do your holiday shopping. Go walk the dog. Or check out one of the fine blogs listed in my blog roll to pass the time.

But, if you've been wondering how we ended up in the queue for proton therapy--read on.

    We have to flip the calendar back to mid-April 2009 to pick up the start of the story. All of a sudden, in the middle of an ordinary semester, P.'s s, ch, and r speech sounds became slushy, especially those that were part of a consonant cluster in the middle of a word. As a professor, he wasn't finding it too easy to be in front of a class trying say words like literature and research. This was seriously ticking him off.
    Since he was in the midst of a whole lot of dental work at the time, we figured that something was going on toothwise, so he went back to his dentist to get things checked out. But when he returned from the appointment that day, he said, off-handedly, "It was odd at the dentist's. When he told me to move my tongue over to the left, I couldn't really do it."
You remember where you were standing when you first heard about the attack on the Twin Towers, don't you? And where you were when the Challenger blew up? Or, if you are my age, what was all around you when you heard the news about JFK?
     Well, this was my own private version of that sort of thing. If you're wondering, I was standing in the kitchen at that moment, with that day's mail in my hand.
   I don't have any idea of what was in the mail, but I do know that P.'s remark about his tongue set in motion a rapid fire flipbook in my mind, one in which the pages snapped from xray, to MRI, to biopsy, and then, brain surgery, chemo, and radiation.
P., bless his heart, was oblivious to this, and was wondering, I'm sure, why I demanded that he call his primary care physician on the spot to get some testing done. But he followed through (I didn't really give him a choice), and, sure enough, his PCP was concerned enough to order an MRI.
So P. went off to get the scan done on a Wednesday, and then we didn't hear anything for a couple of days. I shut that flipbook in my mind, in the spirit of no news is good news.
    I was even more reassured when the PCP's physician's assistant called late that Friday and told us that a little something showed up on the scan, but it really wasn't anything at all.
He told us not to worry. I didn't worry. In fact, I think both of us sort of forgot about the scan over the weekend, although P. continued to kvetch about his tiny little articulation problems.
    So I was blindsided on the following Monday morning when his PCP called me in my office on my cell phone. Good, he said, I found one of you. I've been trying to track you and P. down all over town. You need to find him and tell him to go to the emergency department right now.
    How's that for heart-stopping drama?
    I'm going to leave you here, in a Perils of Pauline sort of way. More details about the back story in tomorrow's post (Life B.C., Part Two).

But first I have to tell you this: Over the years in our long, long marriage, whenever P. would get a smidge testy about some little thing (read: start freaking out over nothing), my snappy comeback has been: Oh for crying out loud, it's not brain cancer!
Now I'm thinking, why couldn't I have said something like Oh for crying out loud, it's not a lottery win! This wouldn't have made much sense, but could have turned out to be much more useful eventually, don't you think?

A little victory

2009-12-01T21:20:00.008-05:00

As you faithful readers know, yesterday was the day of the weird letter from the insurance company, the one that asked in bureaucrateze for more information about the reason for the referral to Dr. God at the proton therapy place.

What I hadn't mentioned in my last post was the truly bizarre sentence in that letter, stating that P.'s case would require only a 15 minute consultation with a physician because his condition was "self limiting."

Well, I guess if P.'s only treatment was a 15 minutes of chat time in a doctor's office, that chondrosarcoma would be limiting, all right, just not in the way we'd want.

As for the tumor being self limiting, that's just the opposite of cancer! A common cold is self limiting. So, most of the time, is the flu. But cancer cells don't know how to turn themselves off, thus the need to zap the little buggers or go after them with sharp implements or poison them with scary toxic chemicals.

So I launched myself into the fray early this morning, showing up on the PCP's doorstep (at his clinic, not his house, for Pete's sake!). The PCP's wonderful assistant got good and frosted about this loony insurance letter and started calling around, as did I.

And, suddenly, I get a call back: P.'s consultation with Dr. God at the Really Famous Hospital was now approved! Not really a party hat-worthy victory, but still.

We know that an approved consultation isn't an approval for the actual proton beam therapy. And we don't even know if Dr. God will take the case yet.

But it's a step in the right direction. Since we've been going in circles since April 27, the sense that we might be moving in a straight line forward feels pretty good right now.

And now for the health insurance piece: Let the games begin

2009-11-30T21:47:00.016-05:00

The medical files have arrived at the Really Famous Hospital, according to the FedEx website and my handy tracking number, but they haven't yet made it to the right desk, Dr. God's assistant tells me. The mail clerk must still be out for a smoke.

That doesn't mean that I've been obsessing about this delivery all day. Oh no, I now have a whole new topic to fuss about: the health insurance authorization.

    I can't be the only person who's noticed that all the ads for health insurance portray people who look like they would never possibly need anything in the way of medical care, not even a teensy bit of antibiotic on a bandaid. If you've forgotten the look of these ads, check out the pix here and here. See what I mean?   The message here is that if you just buy this insurance, you'll never, ever get sick! You'll be just like all these perky folks!
   Sort of like the life insurance ads making you think that their policies buy you a free pass on the whole mortality thing.
    Right.
    Well, now that we're actually really using our health insurance, or trying to, I'm not feeling all that perky about it.

I knew our adventures were beginning last week, when the assistants of all three of our doctors (the PCP, the local neurosurgeon, and Dr. God) said that it had to be one of the other offices who was responsible for initiating the authorization.

One person even suggested that I was the person who should do this. Sure, why not??

Me: Hi, is this a representative from the Incredibly Large Insurance Company?

The ILIC Rep: Yes, it is. How may I help you today?

Me: I'd like to order a few rounds of that Proton Beam Therapy stuff.

The ILIC Rep: A few rounds it is, ma'am. I can supersize this for only $50k more, interested??

Yeah, somehow don't think this is how it should go. So I called up the Incredibly Large Insurance Company (ILIC) today on the phone, just to see how things are coming along, authorization-wise. This is all sort of critical, since (1) we don't have any proton beam machines in our entire state, let alone in our insurance network, and (2) paying out of network costs would require me getting a second job. As a bank robber. Or maybe I could start my own Ponzi scheme...if Bernie could do it....

But, no, I'd suck at a life of crime. Knowing this, I turned to those ILIC reps. I ended up speaking to two of them today, who BOTH assured me that the authorization process had been appropriately initiated and, no, there wasn't a single additional piece of information needed.

However, when I got home--you guessed it--there was a fat envelope from my disgruntled-sounding insurance company, detailing at great length and in incomprehensible, bureaucratic prose all the other medical stuff that needs to be sent in before they'll consider the case.

Maybe I should start thinking about the whole Ponzi thing...........

Still obsessing about those medical records

2009-11-29T18:08:00.016-05:00

A FedEx plane is currently winging its way between us and the Really Famous Hospital; in its hold is our exquisitely compiled encyclopedic history of P.'s medical history, beginning, as per Dr. God's instructions, with "P. was born...." It goes on a bit from there, given that P. was born some time ago.

I'm assuming that the plane will land safely, that the dudes in the brown uniforms will read the address correctly (they better, the address taped to the box is written in 20-point font), and that they are capable of delivering said box on Monday morning at RFH as per the pricey deal I arranged on Saturday.

Actually, I would have been willing to pay even more if there were a guarantee that an especially handsome FedEx guy would be hired for this specific job (the better to get the RGH's clerks' attention) and that he would be trained to adopt a beseeching expression as he hands the box to Dr. God's assistant, saying, "Look, this is really important. Could I implore you to see that the doctor reviews these records immediately?"

Instead, what I know will happen, despite the $44.30 I forked over at the FedEx store, is that the guys in the brown truck will pull up to a general mail room at RFH, and our box, along with a lot of other really important FedEx boxes, will just get tossed into the overall hospital mail system. The box will eventually get loaded onto a squeaky cart that some bored guy will wheel in a desultory fashion around the medical complex, tossing boxes on various desks as he goes. I picture him yakking on his cell phone as he walks the halls and parking the cart in the hall to sneak cigarette breaks when his supervisor isn't around. Maybe he'll get around to lobbing our box on the right desk on Monday; maybe he won't.

Or maybe I'm just fixated too much on these records, eh?

And, um, in case, you RFH representatives are reading this, I'm sure that each and every one of the mail room employees are fine people who would never thing of taking unauthorized breaks for a hit of nicotine! And all of them are ok with being in a minimum wage job all day long! Really!

My thesis for Dr. God

2009-11-26T21:37:00.017-05:00

Yes, yes, I'm grateful on this Thanksgiving evening for all the stuff you'd expect--my great family, a good job, a safe neighborhood--all this is true.

But this year, I have new things to be thankful for.

Here's one: Finishing up the small encyclopedia of medical records that Dr. God wanted us to compile before he is willing to consider letting P. have some time on that super magic proton beam machine at the Really Famous Hospital. Not only have I chased from clinic to clinic all week--dashing out between my own meetings in a rumpled, panicked mess--but I also had to write up a blow-by-blow account of every symptom, every scan, every consultation P.'s had for the last six months. I've been typing so fast that wisps of smoke are still wafting from my laptop. But it's done and ready to be Fed-Exed to Dr. God tomorrow. I hope he likes it.

In my fantasy, my phone rings:
Me: Hello, this is Ms. McCruddy, who is speaking, please?

Dr. God: My dear Ms. McCruddy, this is Dr. God calling from RFH. I must say, your written account is genuinely compelling. In fact, it is such an astonishing work that I've sent the RFH's medivac helicopter to pick you up right now so I may have the honor of meeting an accomplished writer like yourself. It should be arriving outside your location as we speak.

THWACK, THWACK, THWACK.

Me, shouting over the noise: Why yes, it seems to be landing in my driveway! Oh dear, too bad about the neighbor's dog....

Dr. God: Please do climb aboard, Ms. McCruddy. I am anticipating your arrival with such pleasure!

Me: U'mm, ok....er, can my husband come, too?

Dr. God: If you wish. Anything else you'd like? A red carpet upon your arrival? Meeting the mayor, perhaps??
Me: Well, I was kinda hoping my husband could get some time on your space age proton beam gizmo device.
Dr. God: For an author of your stature, anything!

Sailing off into the blue

2009-11-22T14:53:00.005-05:00

We feel a bit like we're sailing off into the unknown. I have to admit: there are moments when it seems like we may be headed off the edge of the map (Here Be Monsters). But, mostly, we're thinking that there are blue, blue waters ahead.

Chondrosarcomas can be cured. Our new mantra.

More than just a piece of crud

2009-11-21T21:47:00.007-05:00

So we were wrong.

In our defense, the doctors were wrong, too. For the first six months, they said, "That mass in your husband's brain? It's a blood clot. Annoying maybe, but no worries. Here's a prescription for some heavy-duty anticoagulant."

Then, months and many repeat scans later: "That mass in your husband's brain? It's a benign tumor. Tricky to remove, but nothing to worry about, really. Well, not too much anyway."

Then, after more weeks--and the biopsy: "That mass in your husband's brain? Well, it's not so benign. In fact, it's a chondrosarcoma. Really tricky to get out. In fact, we can't even do it here--you'll need to go see Dr. God at the Really Famous Hospital out of state."

In the doctors' defense, new cases of skull-base chondrosarcomas are diagnosed only about 20 times per year in the U.S.

Ok, so my husband's special.

Not the way he'd prefer, I'm sure.