Mother, May I? Yes, You May!

    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

    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?

    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

   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

    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

    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

    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

    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

    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

 

    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

    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

 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

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.