Re-entry

     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

 

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?

    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

    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

 
   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

    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...

...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.