Just in case you were wondering...

...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

   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

    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...

   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

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.