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.

Kickin’ it with J.B.

I’m in the kitchen and the fireplace in here is blazing.  I know it’s not the nicest thing in the world, but I’ve come in here as a little hideout from my visiting relatives.  They are great people and I love them and I’m glad they came, but they are really loud and I can’t take that for very long.  I’ve waited until things quieted down even more to start writing.  I found some Jim Beam in the cabinet and there’s ice in the freezer so I’ve poured myself a drink, gotten comfortable, and here we go.

If you’ve got to do dialysis, then you might as well embrace your fate and get on with it.  I’ve always said that my dream dialysis treatment is to have my machine set up on some gorgeous cabana deck overlooking the water as it rides up and down the beach.  The time would be late afternoon, so that I was in the shade but still warm.  I think three hours like that five days a week and I wouldn’t complain about dialysis at all.

As far as reality goes, and me living in it, I came pretty freakin close to having the best treatment a patient could imagine.  Admittedly, there was no unbelievably attractive female tending to my every single want and desire, but like I said, I’m writing with a realistic perspective.  The treatment started sometime soon after nine o’clock, following a great waffle breakfast cooked by mom.  My room at our place in Maine is at the back of the house, so it doesn’t have a great view, but there are thick woods about fifteen feet removed from the windows, which were open.  Fresh air was constantly circulating, which you, if you’ve ever been in any dialysis unit, would know, is one of many things never allowed to patients or their visitors.  For some reason, my access pressure was good enough to allow me to get up to 500 ml/min within the first ten minutes or so of starting.  This accomplishment usually takes thirty to forty minutes of slowly creeping up the speed.  I comfortably lied in bed, feeling neither too hot or too cold, and watched The Wire, Season 5.  It’s a great show that is extremely captivating as long as you’re not trying to watch it tired.  Despite the fact that putting in my arterial needle hurt like a bitch, the actual treatment proceeded with remarkable ease and comfort.

I’d like to take this chance to respond to reader K-Monay’s inquiries following my post “Maine at Last.”  I appreciate all my readers and would certainly encourage anyone to submit any feedback or questions they may have.

First, the gossip.  Rose has begun a brief summer fling with an island boy I will kindly refer to as “Chimp.”  While he seems to have a couple redeeming qualities, I can’t help but feel that his excessive banana consumption, tree swinging and poo throwing will emerge as significant issues in their relationship.  We will have to see how this love develops come the fall, but I have my doubts.

I strongly object to the suggestion that Razzle is anything short of a fine and honorable lady.  Yes, she has slept around, particularly on the right side of the far couch, but I find no reason to fault her for this.  Further innuendo at her expense will not be tolerated.

Finally, the arrival of the “Quadpod.”  I am already here, so only ¾ of the quadpod are necessary to complete the group.   Much like Captain Planet’s team, all members of the pod must assemble for full force to be realized.  Each individual brings different talents to the group.  Mike – an insatiable appetite capable of emptying fridges, drawers and cabinets on command or otherwise.  He has largely learned to control this beast within him, but much like the Incredible Hulk’s anger it can sometimes appear without notice and create devastating effects.  Alex – a willingness to say anything at any moment, most often choosing words and times that lead to intense discomfort for anyone present.  His personal sidekick, Chronsus maximus, can also single-handedly render a variety of rooms inhabitable for great lengths of time. Kousha’s powers can best be described as this – an ability to act in a manner that benefits himself, despite whatever obstacles may be in his way.  Imagine an unwillingness to part with money that rivals that of my ancestors, a swarm of laborers of questionable ethnicities materializing out of thin air or a pyramid of Krispy Kreme donuts.  These are all feats that Kousha can accomplish under circumstances that make them necessary for his own perceived happiness, success or progress.  What prevents Kousha from having an extremely dangerous amount of power is his permanent failure to say “yes” or “no” when put in a socially awkward situation and he desires the opposite of what is nice.  Kousha, Mike and Alex will be here soon.  Maybe this year, with our powers combined, we can slay without casualty, be it human, toilet or other, our greatest villain yet – twin lobster dinners.

weed whacking mania

Yard work is nobody’s favorite thing to do, well, unless you are Kousha’s distant relatives on the farm.  I am in no way related to Kousha and thus do not claim weed whacking, lawn mowing or brush removal as cherished pastimes.  Like log carrying, however, I found that as soon as I accepted weed whacking as my fate for the morning I got quite into it.  The tank was full when I began and empty when I stopped, which took a full hour or more of swinging around my spinning twine of death to accomplish.  I brought down wimpy looking flowers, ugly shrubs – even happy families of grass were viciously torn apart right down to the dirt.  It was a massacre out there and the front of the house has rarely looked better.

swinging in the rain

This was actually written the night of August 19th, 2008, but wasn’t posted until today because of internet availability and general non-computer related business.

At this point my blog is just an amusing idea that I expand upon every time I feel like writing about my life.  I have no readers except possibly my closest friends, brother and sister.  I’m okay with this because I realize I have no idea if I would even want tons of strangers reading about my life.  I’m treating it like a journal, and like I would in a journal, I want to rant about girls and other things about which I wouldn’t necessarily want the whole world to know my specific thoughts.  I’ll have to sort this comfort level out as I go forward.

Today was amazing.  I had a day off from dialysis, which automatically makes a day better than it would be with dialysis. The weather was pretty cruddy early on, so I just sat around and read.  The tide was high in the afternoon so there was little to be done early anyway.  At some point in the morning my father chainsawed some logs for firewood and Scott, Jackie, Rose and I agreed to carry them up to the house.  I was outside a few minutes ahead of the rest of the carrying crew and I found myself drawn toward the homemade swings made of rope, 2×4s and a length of wood bolted between two trees.  Installed over a dozen years earlier, these swings have been a solid part of my youth.  Sitting on them now, finding them to be so much easier to mount than I remembered, I quickly gained speed, coming closer to hitting the overhanging tree branches with my feet every repetition.  Suddenly, it began to rain and I knew that we would not be heading through the woods to retrieve the wood any time soon.  I was curiously uninterested in running inside, so I just kept swinging away under the cover of the trees as the rain gained intensity.  I waited out the shower swinging under the trees for what seemed like a very comfortable eternity.

Maine at last

Yet again I have failed you, my readers, and myself, as a supposed competent human being in the performance of the task known as blogging.  This post is over twelve hours in the making, with minor updates added to the bunch over the course of the day.  However, you will never read the words that I am referring to because I somehow managed to highlight two paragraphs worth of text and magically turn them into an “e” with the pressing of two buttons and the passing of maybe one second.  I have since deleted the “e” and started over with this nonsense.  There must be a fucking undo command of some sort in this blogging layout, but I gave up on finding it.

Anyways, I am in Maine and things are going great.  Great, that is, except for the fact that I forgot something absolutely important and necessary.  What, you may ask, would that be?  It would not be my brand new Jason Statham movie, bag of starburst, running shoes, ipod cord or skittles, these were all remembered.  No, I forgot only the heater, power cords and other attachments to my life preserving, blood cleaning, sweet ass dialysis machine.  You may wonder, how is it possible to forget these things, shouldn’t they be just about the only things you don’t forget?  What you would not know is that they were even packaged and ready to go in two relatively large, clearly visible boxes.  The logical answer is that things were really hectic leaving the house, the car was full so it seemed like everything must have been in there, Rose and I carried the 70 pound part of the machine so the small stuff seemed less demanding, but in reality I am just a fucking idiot.  Everyone is sometimes.

What kept me from having to either a) drive back down to Boston the next day or b) feel like absolute shit for 36 hours while I waited for the pieces to arrive was the arrival of my cousin Jackie and her boyfriend Scott the next day.  I had to plead with them to drive by my family’s house to pick up the stuff and join us a day earlier than they planned, requests to which they graciously agreed.  This will only cost me constant deriding, some of which I have deservedly experienced already, and perhaps the cleaning of a load of Jackie’s laundry.  She’s nice enough that she may not make me do her laundry in reality, but if she asks, I do owe her.

It’s tough to get internet up here in the middle of nowhere so I’ve been writing this outside in the pitch dark in the porch room closest to the barn where the wireless is based.  The wind is cold and strong and I’m getting myself kind of freaked out by thinking of serial killers and monsters and other horror movie things that could easily sneak up on me from any direction.

I moved inside to the kitchen.  Sam and Kelly were up here with Dad when Mom, Rose and I arrived on Saturday.  They left Sunday afternoon.  It was great to see them and it’s too bad they had to go so soon.

I’ve volunteered to help with a research project based on exploring the incidence of arterial stenosis in aterio-venous fistulas and grafts.  I’m excited about the opportunity because I really like the idea that I am directly contributing to something that could help others in my medical position now and in the future.  The doctor in charge seems like a fantastic person motivated by his feeling of obligation to share his knowledge.  I can’t help but like the idea that I may also be able to get my name on some papers as the data is deciphered.  When reading some background info, however, I experienced some bizarre feelings as I tried to digest some of the information I’ve voluntarily exposed myself to – mortality rates, mean ages of dialysis patients, success rates for fistulas, groups of patients represented by numbers and tables.  I doubt there’s a single person who has read these papers that better understands the direct consequences of fistula malfunction than myself, an individual who considers his fistula as a lifeline and has honest fear about what would happen if it were to fail.  Life on hemo dialysis with a catheter is passable and fine, but I remember those times and I know that everything just feels different, a bit darker and more difficult to be excited about, when there’s a large tube stuck through your chest and two others sticking out of it.  This is enormously unpleasant to think about and I’m really not sure why I force myself to by doing this work.  I guess I hope that I can improve the treatment for others in the future, and that by doing so it brings a difficult yet meaningful positive out of an inherently pain in the ass negative situation.

Hmmm… that wasn’t about Maine at all.  We went sailing today, which was fantastic.  The wind was howling and we were flying in Allegro, our 28 foot cape dory sailboat.  She’s old and smelly, but we’ve had her for fourteen years and there have been too many good times aboard not to lover her.  Bonza and Razzle are great boat dogs, with Bonza as far front on the bow as possible and Razzle enthusiastically stuck to the cockpit area.  Whaler’s busted, which sucks.  Dad tried to fix it today by adding and cleaning filters to remove water from the gasoline.  Sadly, the repairs didn’t do the trick and we’ll have to try something new tomorrow.

I’ve run out of green skittles, so I guess

The view from Allegro

it’s as good a time as any to head to bed.

Thanks to Rose, Kousha and Mike

After dinner on Wednesday I felt inexplicable pain in my stomach that did not subside until this morning.  Highlights of this illness included being unable to move, eat or sleep.  Never before have I been compelled to take a nap on my bathroom floor from fear of fainting.  I’ve actually never napped on my bathroom floor before, and this includes all drunken episodes, thus making this bout with the devil a.k.a. unbearable nausea and dizziness a remarkable new experience.  Sometime Wednesday I decided to forego sleeping entirely and began watching Ghostbusters.  This choice further worsened my night, as instead of simply drifting in and out of conciousness at the whim of the poltergeist inside my stomach, I was also repeatedly jostled awake by Bill Murray’s attempts to tame ghosts such as ecto and zuul, whatever the fuck that is.

Anyways, life got back to normal today when I gave myself two and a half liters of saline in dialysis, which raised my blood pressure from the measley 70ish over 40ish of the last 48 hours to a whopping 85ish over 50ish.  Yay.

Rose was of course a huge help through this ordeal, but Kousha and Mike also played great roles by visiting and spending time with me.  Without their insisting, and mac and cheese making, I wouldn’t have eaten or drank anything all of yesterday.  So thanks to the three of them.