Moving in is great

I spent the majority of today at my fraternity house where I’ll be living this year.  There is a ton of work to be done to clean the house and make it liveable.  For a start, twenty something bags of trash were hauled away this morning.  Since then, I alone have filled four more with random crap taken out of the kitchen.  I believe I threw away two blenders, a toaster, a traffic cone, rugs, cups, buckets, pitchers, a tree stand, silverware, and many other items, some of which were likely functional but simply made of too much mass to be worth keeping.  It is as if all residents for the past ten years brought their own sets of dishes and mini appliances and spices, with none of them trusting the reliability or expiration date of anything in the house.  I’m not saying I blame them, I would likely have done the same thing, but the situation has definitely spiraled out of control.  In addition to kitchen work, I trimmed the hedges out front and helped clean the inside of the bar.  All this and we haven’t even tackled the basement yet…

school begins to show itself

I have failed to post for four days.  It’s not that I haven’t thought about posting, but when I did, it was one of those instances in which I say to myself, “Nah, I’ll feel more like doing that later.”  Apparently, not so much.

Anyway, it feels good to be back.  First things first, I’ll share a book recommendation that I’ve been meaning to write down for some time.  Stephen King’s, From A Buick 8, was an excellent novel I read this summer.  It follows the story of a supernatural car and it’s effect on various members of a Pennsylvania state police troop.  Oh, another book that I recommend is in a completely different genre.  The book, The Wizard of Loneliness, by John Nichols, is a heartwarming tale of a rebellious young boy’s time with his grandparents in Vermont.

I started my move back to school today by moving a ton of other people’s things out of my room in the fraternity house.  Apart from the pain in the ass of moving in, I’m really psyched to be living at the house this year with six other brothers.  It’ll certainly be a change from the dorms of Quincy house.  Things I look forward to 1)  Drinking when bored, 2)  Cooking my own meals 3)  A larger bed  4)  cable TV service  5)  Bro-ing out in general.  I’ve got a feeling it’s going to be a very good year.

Monthly checkup – Yay!

I went to see my nephrologist today.  I am supposed to visit monthly but actually hadn’t been since May.  His office is somewhat depressing and often behind schedule, but I have to admit, I actually like the guy.  It’s nice that he treats me like an adult and I can be honest with him.  When I went to Children’s for so many years the doctors were similarly top notch, but it was tough being considered a child after turning 17.  I have had to tell ukelele playing clowns to fuck off way too many times.  That was kind of a tangent, but definitely telling.  Imagine being an eighteen year old in a dialysis clinic filled with children in various stages of illness, all screaming, crying, laughing and talking to form a wretched cacaphony.  All I ever wanted to do was sleep, so when on top of all this chaos going on, the clowns showed up and wanted to play me a song, I can only say that I wished I could get out of bed so that I could stick that mini guitar where the sun don’t shine.  Anyways, the doctor’s appointment was uneventful.  Calcium, hemoglobin, parathyroid all in check.  Just a regular day for a dialysis patient.

post vacation blues

I was hanging out with Alex on the roof of my place in Boston yesterday, and the massive difference between the view here and in VH really struck me.  There – nothing in the distance except trees, water, and maybe a boat.  Here – large buildings, cars and many, many people.

Well, I have been back from VH for three days and I’ve yet to go to lab even though that has been my only goal.  I’m struggling to be excited about restarting the daily worry and self-doubt that comes with trying to piece together a thesis project.  All I really have to do is sit down and write, but it’s tough even doing that.  The questions I have to answer are:  1) Is conductin a good readout of the canonical Wnt signaling pathway and 2) Do in situ results from the literature match immunostaining results that I’ve done?  I totally understand that these questions are not what you want to be reading about, likewise I don’t want to write or think about them.  I know that when I do finally get going, it’ll seem interesting again and it won’t be an issue.  For now though, it is not easy.

Dialysis yesterday was decent.  My buddy Alex was here and Don was helping me with the treatment.  I fell asleep watching Twelve Monkeys, what a screwed up movie.  I couldn’t get the machine up to full speed because of high access pressure, which was very frustrating.  Usually it falls over the course of the treatment, allowing me to slowly inch up the speed to 500 ml/min, but that never happened.  It hovered between 235 and 245 the whole time and I maxed at 480 ml/min.  4% of the speed is certainly not a huge deal, but it’s a difference of 5 more minutes on the machine, and that’s no good.  Alex’s presence was nice, even though I slept for and hour while he was here.  I remember originally bitching that it sucked I couldn’t operate the machine alone, but I know now that it would be a very lonely time spending dialysis hours with no company whatsoever.

reflections on an excellent visit

I have learned in various classes that art has an amazing capacity to mirror life.  I believe this is true.  The events that transpired once the quadpod descended upon Vinalhaven were much like a particular type of art – specifically, the work of actor Jim Varney, who played Ernest P. Worrell in classics such as Ernest Goes to Jail, Ernest Goes to Africa and Ernest Goes to School.  If this weekend were to be scripted and filmed as a movie, it would be most appropriately be titled Quadpod Goes to Vinalhaven and would be made in the same style as the revered Ernest classics.  The opening scene would show the Quadpod, within moments of landing on the island, consuming burgers, a chicken, a bag of sunchips, a box of sugar wafers, donuts, potato salad and cheetos.  Hilarious adventures would include flipping and nearly sinking a much loved, handmade, wooden boat, thus sending innocent bystanders into frigid waters to attempt its rescue while its former pilot remained stranded on a mid-ocean rock.  Also included would be the nut crushing and nut revealing antics of one mischievous and uncooperative pair of jeans.  Underlying the cinematic tension would be the constant threat of an assault by Chronsus maximus, who in the end of the film would reveal his ugly presence during one fateful dialysis treatment.  When completed, some viewers will laugh, some will cry, but I guarantee this movie will come close to not being a total failure, as the main characters, in real life, constantly threaten to be.

Ah, to be back in Boston again.  A distinct contrast between Vinalhaven island and Boston – the people all over the place.  Whereas in Vinalhaven I can stand on the deck and not see a single other person anywhere, I was privy to a yelling match between a meter maid and some guy who got a ticket in front of my house within one minute of stepping outside this morning.

Vinalhaven good times

Life here on Vinalhaven has been remarkably exciting, well, as exciting as life on Vinalhaven gets.  Late yesterday afternoon Razzle sheepishly walked toward the barn with something strange in her mouth.  It was like a stick, but it was the color of driftwood and had a smooth texture to it.  I called for her to come, and her head fell below her shoulders as her pace slowed to a crawl for her unwilling return.   As she got closer, I could tell something was a little off about her prize.  Here’s a picture of her find:

That’s a pretty big bone.  I have no idea where she found it and I hope that she doesn’t either.  I will not be happy if she returns with something even larger, although I admit it is really cute to see her proud of herself.

Later in the evening, as we were getting ready to have dinner, I heard the whirring sound of a stuck car on our road.  Our road is basically a long driveway that leads to our house and our neighbor’s property.  The ride is bumpy and unwelcoming, so we rarely get curious uninvited visitors.  Figuring that the stuck vehicle must belong to guests of our neighbors, my dad and I walked down to the road to see if our tractor or pickup truck could help free them.  The scene we stumbled upon consisted of a short, shirtless, fat guy staring at the right front tire of his old red pickup truck and his tall, skinny beer drinking buddy in the truck bed giving incomprehensible advice.  “Shit,” my dad and I thought to ourselves.  Although we didn’t verbalize it we were clearly both thinking, “These guys are wasted, we are in the middle of nowhere, and now we have to help them.”  The prospect of interacting with these guys in any capacity was not something we wanted to consider, but by the time we had figured this out we were already committed to helping them.  Luckily, by the time we got the tractor down to the spot where they drove off the road they had already unstuck their truck and disappeared.  Unfortunately, this also means two drunk guys were once again cruising the streets of Vinalhaven, probably to crash their truck once again.

This event freaked my mom out so much that when we finally did sit down for dinner she proclaimed, “I want a gun.”  Apparently, the seclusion of our place has finally gotten to her.  I don’t know if she should get a gun for these situations exactly, but one thing is for sure.  A shotgun and food supply would be all that’s necessary to make our house on Vinalhaven the best retreat in the even of a zombie attack that I could possibly imagine.

Exactly a year ago…

I wrote this exactly one year ago, on August 8th, 2008.  I guess I was a blogging kind of guy then, but didn’t realize it.  The blog will say I posted it August 29th, but all times are in GMT, whatever that is.  As far as I’m concerned, it’s 11:20 PM on the 28th.

My friend Mike says that if I wrote a book, it would be a good one.  I agree, there is potential, but I’m not sure I could pull it off.  And why would people actually read it?  I mean, if they want to read an inspiring story, just read the Lance Armstrong book.  That makes the most sense.  He overcame cancer and won a shit load of hard ass bike races.

What have I accomplished in the face of my adversities?  For those diseased and eager to succeed in academics, I may be a good role model.  I have had kidney disease from age five.  The specific disease is called Focal segmental glomerular sclerosis.  Everyone just calls it FSGS.  I’m a little embarrassed to admit that to this day, I do not have a good grasp on what the disease does, how it works or doesn’t work.  I know this – it is an autoimmune disease that causes scarring in my glomeruli, rendering my kidneys unable to process and clean my blood appropriately,

It is very strange that I am a Harvard student going into his fourth year, majoring in biology, and I do not understand the specifics of the condition that has had such a monumental effect on my life.  This does not really concern me though, because I know that it is my ability to remain so mentally aloof to my disease that has let me move through life as well as I have.

I’m in Vinalhaven, Maine right now.  My dog Razzle just woke up and started looking for me.  She wanted to go outside.  She’s a black dog, so I clipped a funny red flashing ball to her collar that let’s me see her at night.  It’s awesome having her – she is a service dog I got through the Make-a-Wish foundation to help me with my peritoneal dialysis machine.  She was trained to wake me up as I slept through the machine’s incessant beeping.  I do not have a hearing problem – I’m just a really heavy sleeper.

Dialysis today went better than usual.  Once everything was all set and I was chugging along, I felt quite relaxed.  I used two sites in my fistula that I’ve grown quite fond of.  The arterial site I used was a little close to my wrist, but farther from my anastimosis than the spot I usually use.  The venous site I chose was close to my elbow, a surprisingly plump section of vein following a very narrow section.  For some reason, I could feel the blood returning to me through the venous site at 500 ml per minute and I was quite confident that nothing was going to be wrong with the treatment.  I slept for about an hour of the two hour fifteen minutes, which is a nice treat on the Nxstage machine.  When I was doing in-center hemo dialysis at Children’s hospital, I preferred to be in the morning schedule, because I could wake up at 6:30, get to the hospital, either by bus or taxi, and be asleep from the moment I was connected to the moment I woke up.  On this new machine I’ve been using, sleep is much harder to come by.

I’ve been doing dialysis on the NXstage system one cycler for about six months now.  Changing provided an incredible improvement to my life.  I haven’t been able to enjoy Vinalhaven this much since I’ve had to switch from peritoneal dialysis to hemo dialysis.  Before NXstage, I had to leave the island with one of my parents on the seven AM ferry and drive to Bath, Maine, where I would receive treatments for the standard three day a week schedule.  This completely changed the feeling of vacationing at Vinalhaven, where feeling isolated, mellow and connected to nature are major parts of life.  Aside from Vinalhaven, NXstage has improved my life in a wide variety of ways.  I no longer suffer through the frustration of feeling drained and tired for entire days.  I can take any class that I want, because I can schedule dialysis around my life, instead of my life around dialysis.  I have more energy.  On three day a week dialysis, patients are forced to drink as little fluid as possible because they have no way of getting rid of what they drink in between treatments.  Typically, this is important because too much fluid in one’s body can cause a person’s blood pressure to raise dramatically.  For me, however, if I drank too much fluid between treatments the removal of it would cause my blood pressure to plummet to levels where I felt extra cruddy, regardless of what I my BP was at the beginning of the treatment.

I just made myself some toast and tea.  I’m not sure why but toast with margarine and jelly has become a new favorite of mine.  The tea is decaf, which is unusual, but probably good, since it is midnight.

a day off amidst a series of days off

I haven’t done any work on my thesis or fistula project since coming to Maine two weeks ago.  That nagging feeling that makes you feel like you should be doing something productive just because you have free time is beginning to tug at me.  Hopefully I’ll be able to store up all of these thoughts so that when I do return to life post vacation I actually get things done.  Actually doing things I could do – no fuckin way.

Regardless, I have a day off from dialysis today and I really want to make the best of it.  I would be out on the water right now, but the tide is quite low and our little bay really empties out during low tide.  I went sailing with Rose earlier today, which was a blast.  We used our two 12 foot nutshell prams that we (my dad mostly) built over the course of five or six summers a while ago.  I always have this expectation of myself that whenever I have a day off from dialysis I must have as much fun or do as much as freaking possible.  I dread the idea that I’m sitting around doing nothing voluntarily when I’d be forced to sit around doing nothing during a treatment, and of course, I don’t like that.  What am I sitting here typing for anyway?

Rose is eating breakfast

I have been awake for two hours and Rose just got out of bed.  It took a lot of restraint not to barge into her room with Razzle and wake her lazy ass up long ago.  As of now, she is bagel and cream cheese eating – I do not know how the rest of her day will proceed.

I made popcorn with kernels and oil in a big pot last night for family movie time.  The movie was Michael Clayton, which I remember thinking was excellent when I saw it previously.  Last night I didn’t stay awake for the movie, but the popcorn, with salt added, was very good.

Razzle is lying on her back upside down, with her front feet in the air and her back feet against the kitchen door.  She is a different type of dog, much like Rose has just now called me a “different” type of brother.  I take no offense to her comment.

I am not a political individual, so when I read yesterday’s newspapers about how Hillary Clinton is supporting Barack and how all democrats should rally beside each other I said to myself, “yeah,” and moved on.  I do not understand how my dad, having read the same articles, can deduce large scale conclusions about how the election will proceed and how the further decline of family values is imminent.  I guess, what I hope, is that whoever becomes President doesn’t seriously screw up the country to the point that my day to day life is significantly negatively affected.

We walked down to the shore yesterday evening with the dogs to throw sticks for them.  Sadly, though, Razzle does not believe that she can swim, so she just stands at the edge of the water and barks at Bonza as she returns with retrieved sticks.  Razzle immediately chomped down on whatever Bonza brought back, and sure enough old easy going Bonza just let it go.  It is not a good feeling to suspect that I have raised a dog bully, but at least she only bullies Bonza, who doesn’t seem to mind much.

Rose is telling me that I gave her attitude last night when she suggested I move from the couch to my bed.  This conversation is pretty standard, as I often fall asleep on couches around bedtime and Rose is very nice to make sure I don’t sleep uncomfortably all night.  Last night, however, it seems I acted with as much sense as I would have if I was relatively intoxicated.

I said, “Razzle needs to go out,” and went back to sleep.  The next thing I know, Rose is re-waking me up and she asked, “Ben, how do you turn on this blinking ball?”  The ball is something small we clip on to Razzle’s collar so we can see her in the pitch dark, which would otherwise be difficult given her fur color.  Apparently, I told her to buzz off and proceeded to curl up beside Razzle, who clearly had no interest in either going outside or to bed.

So far, it has been just another pleasant morning on Vinalhaven.

my recent accomplishments

I have been very productive over the last couple days.  Oscar is my favorite.  I am concerned that my larger painting may cause seizures in individuals prone to have seizures, but hey, this is the danger and sacrifice of good art.  The Rice Krispy treats were made this morning at 7am, and they are quite delicious.