Chairs Missing by Joe, resident at the New England College of Optometry

15Aug/12Off

Intermission/Transition

The meds robot malfunctioned and got stuck in the elevator today. You could hear its error messages in the hall for a half hour, telling people to stay clear until help came.  Pretty quickly the repairmen were able to get into the elevator shaft and fix the problem.  Within an hour, the robot was back to making its rounds, as if nothing happened.  I’ve seen the future, and apparently it does work, albeit with a few kinks to workout.

Since it is my last week at the VA, I figured I’d delay the final part of my cancer series to briefly say goodbye and reflect on my time at the VA.   Overall, it’s been both a surprising and positive experience, and it’s gone by so fast.  As I’ve mentioned in past posts, the VA today is not the VA of 30 years ago.  They are well staffed, and both patients and worker alike are happy to be here and always willing to help.  I’ve really loved all the people I’ve met and worked with, and I’m really going to miss it.

I also need to mention how much I’ve learned.  My preceptors, all three of them, are great people who were fun to work with.  They were fair and willing to go the extra mile to make sure I understood any hard concept or difficult to perform technique.  In three months (with their help), I was able to see over 300 patients, and I’m finally beginning to feel like I could do this whole optometrist thing on my own.  But really that was pretty much expected.  The most surprising part was in actuality the technology, including but not limited to robots!

The modernization of the VA means that they have had technology at the same time or sooner than most private practices.  For example, the VA had electronic medical records for at least 10 years before anywhere else had it.  This means that medical records are integrated and we have all of the patients past problems, blood work and so forth right at our finger tips.  Need to know if a diabetic patient has recently had an exam, or what their blood sugar numbers were? No problem, just click a tab.  And if we needed to run scans of the back of the eye, we have brand new imaging devices and visual field machines, newer even than ones we ran in labs at NECO.

The meds robots, though not really related to what we do in the eye clinic, are most amazing of all.  They are like little R2D2 style robots that self-navigate and go from floor to floor to drop off medication to various nurses stations.  They use robot arms to pick up and drop off, and they usually seamlessly get on and off elevators.  It’s been really interesting to see how the patients respond to seeing the robots run the halls.  Many guys give the little R2 a friendly pat on the back as its goes by, which usually triggers the warning signal to go off, telling them not to touch the robot.  It’s pretty funny!  Frankly, robot delivery “people” is about the last thing I expected to see here.  Soon the pharmacy will get automated robots to actually fill the bottles.  Who knows how many more things robots will be used for in the day to hospital operations of 20 years in the future?

And so I leave the VA a little bit wistful; I don’t want to go.  It’s weird to think of some other student moving around all the things in my room and seeing patients in my place.  But with that thought, I have a good sense of how I may want to shape my career.  A VA residency might just be in my near future, or at least an application into one.  In a future post, maybe I’ll talk about that.

My next rotation is special populations, where I’ll be seeing kids and patients with special needs.  I’m pretty excited.  My next post will be as promised, about my friend’s child with cancer and I’ll tie that into a talk about my new assignments and kids with blindness.

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7Aug/12Off

Part 2: Cancer for Cure

I’m more than two thirds of the way done with my rotation here at the VA.  I’ve been very happy with the experience, especially with the patients, who are some of the nicest, and frankly, most patient population of people I’ve worked with.  It’s also made me feel unusually wistful as well.  Much of this is because at our particular VA, there are several large “wards” which serve as nursing home-style, end of life hospice for vets who are dying of various illnesses.  As a result I’ve examined quite a few a patients who live here and have late stage or terminal cancer.

As cancer can metastasize from practically any tissue to invade the eyes and the brain (and by extension, affect control over eye moments, pupil reaction, and so forth), each patient requires a very thorough exam.  Beyond this, the patients need glasses in order to make life more enjoyable for however long they may have left, whether it’s months or years.  One patient told me his oncologist had gone from telling him he had only a few months to possibly a year or more.  He seemed uncertain if this was good or bad.

Unexpectedly, a large part of seeing these patients is simply taking the time to talk to them and giving them a chance to let someone listen to their stories.  They seem to appreciate having a new person to interact with, even if just for an hour.  Some have had relatives visiting and can accompany them to appointments, but many don’t.  The unfortunate truth is that for many, they simply don’t have any family members left; their wives, brothers, sons, daughters may all have passed on before them.  Others have living relatives, but they live far away and can no longer take care of them, for whatever reasons.  Some are okay with life in the wards, but other admit openly to being lonely and are scared to live out their remaining days in an unfamiliar place.

Every time I see a patient with terminal cancer, I wonder about what it’s like for them and what the story is for their families, how it’s changed all of their lives.  It makes me quite sad, especially those who have had trouble adjusting to the diagnosis or the place itself.  I can only somewhat relate.  You see eleven years ago, my cousin, Jason, fought his own battle with cancer.  So for every hospice patient that comes in, I am reminded of him.

Rags

When I was really young, I felt like a middle child, despite being the oldest, thanks in part to the relative chaos of my home life.  Back then, I always wished I had a wiser, protective older brother.  Luckily, Jason was able to fill some of that role from time to time.  Jason was in most ways everything that I was not.  A year older than me, he was tall and athletic, and self-assured. He loved basketball, and pretty much played all the time at the court just across the street from his house.  He had a thick skin, too; he never really knew his dad and was raised by a single mother during a time where this was uncommon out in the ‘burbs.  Out of necessity, he developed a razor wit and was pretty much the funniest guy I knew; he had a joke for any situation and never took things very seriously.  And on top of that, he was cool and had style; he had even heard of this music called “rap” way before anyone else I knew.

Jason’s mom worked several jobs and so he would have to stay over at my great aunt’s house almost every day after school so his mom could go to work.  My grandparents’ house was right next door and I, too, was often dumped off there after school and on weekends.  Hanging out with Jason in those formative elementary school years changed my life.  From him, I learned to be more confident and to stand up for myself.  He got me into basketball and music.  Basically, I bit his style and personality in every way possible, right down to his sense of humor.  I don’t know if he ever realized the influence.

As years passed and we went into high school, we hung out less frequently.  But Jason was always there if I need help or advice, looking over me if I got into trouble.  If I strayed too far into doing something really stupid, he would let me know.  And when my dad left home, he was there to talk about it, having grown up without a dad.  It helped a lot.

The Hard Part

Sometime around the summer of 2000, Jason began to get mysteriously clumsy.  He lost his coordination slowly; first he would inexplicably fumble and drop things.   Eventually he began to just trip over his own feet walking around.  Things like this went on for a while, but nobody thought much of it.  During this time, Jason and I drifted further apart.  I was doing the college thing, but we still saw each other from time to time at rare family functions and the occasional game of basketball.  One of the last times I played with him, I noticed he was a little clumsy handling the ball.  “Yo man, you’ve been slacking, you’re rusty!”

“I know!  I gotta play more, but it’s hard when you’ve got bills to pay,” he said.  This was one of the last times I saw Jason while he was healthy.

A few months passed and one day I got a call from my grandmother.  “Jason had a fall at work yesterday; he had to go to the doctor.”  She didn’t seem too concerned, so I thought nothing of it.

“That sucks, hope he’s okay,” I said.  More weeks passed.

“Jason’s been feeling lousy again.  His mom said he still feels weak and has been missing work.”

“He probably just got mono… when I got it, it knocked me out for a long time too.”

Weeks later at her house:  “Jason is in the hospital you know.  He can’t really move much on one side anymore.  I don’t understand why. They’re saying it’s some kind of brain cancer, I wrote it down…”  She pulled out a scrap of paper usually reserved for writing down the lottery numbers. The words were like gibberish to me at the time, like it was written in Polish.  “Tumor of the brain stem?... Well, you should go visit him; he could be there a while.”  I felt my heart sink.

“Sure thing, I will.”  As I left the house and got in my car, a wave of fear rushed over me.  To myself I thought, “I can’t go.  I’m too afraid.  I just can’t face it.”  I waited weeks to even think about it at all.

Eventually my friend, Ed, also a mutual friend of Jason, confronted me and talked me into facing my fear of seeing him so sick.  Jason had been transferred from the ICU to a rehabilitation floor.  As we drove over to the rehab center, I remember thinking to myself, “That must be a good sign, he’s rehabbing.”  I didn’t realize this place also served as hospice.

We got to the room and Jason’s mom was reading a book near the doorway.  She had never left the hospital this whole time, going back to months prior when he was first diagnosed.  She looked really tired.  “Hi Joey, how’s your grandmother?   Dana just left, you just missed him.”  Dana was Jason’s best friend and was probably there every day, too.  I felt a terrible sense of embarrassment.  They must all hate and resent me for not visiting.  I looked down at her and said, “I’m sorry.  I should have been here more.  I am a total coward.”  She looked up and smiled.

“That doesn’t matter.  All Jason cares about is seeing you.  Go in.  He’s waiting.”

We walked into the room and there was Jason, lying in the bed.  He looked frail and skinny.  He had an IV and tubes every which way and his hair was shaved short with bandages barely concealing surgical wounds.  His nurse was there, tending to something near the bed.  She smiled at me and asked, “Oh haven’t seen you before. Who are you?  Relative or friend?”

“I’m his cousin, Joe. This is our friend, Ed.”

“Nice to meet you.”  She whispered into Jason’s ear, “You have visitors.”  She turned to us, saying, “You have to get close, he can’t see or hear very well unless you go in.  I’ll leave you guys.”  On the way out she laughed, “He’s so funny, you know. All the nurses here want to go on a date with him.”

At his bedside, he grabbed my hand instantly, with a grip that was surprisingly strong.  “Hey Jason.  It’s Joe and Ed.”  He struggled to move his head up to look at us and his whole body tremored as he did.  As we made eye contact, his eyes looked crossed and twitched as they moved.

With a half-smile, the other side of his face paralyzed, he said, “Of course I know it’s you.  How are you?”  He spoke slowly and with a gravelly voice, but I could understand.  Time seemed to stand still in that moment.  I can’t remember exactly what I said next or what we talked about, but we stayed there for hours, talking about random things.

The nurse came back in and said it was time to go.  As I got up, I felt frozen to the spot.  After a few seconds, Jason moved slowly over again and looked at me.  In a hoarse voice, he said, “I love you, Joey.”  We had never said those words to each other.

“I love you, too, man.”  He grabbed my hand tightly again and then released.  Ed and I walked stone faced out of the room, said goodbye to Jason’s mom, and walked down the hall.  Ed was probably one of the toughest guys I have ever known; once he even pierced his own nasal septum with a nail.  But that day, as we got into the elevator, we both looked at each other and began to cry uncontrollably.

The Long Way Back

Jason held on for many more weeks, but his symptoms got much worse. He stopped breathing on his own and lost the ability to communicate all together.  I went back to see him with my grandparents and he was pretty much unresponsive.  Later that year, in late June, I was on a road trip, helping a friend move to the West Coast.  We were stopped over in Salt Lake City for the night and I called home to check in.  My then girlfriend (now wife) broke the terrible news that Jason had died earlier that day.  I took an early flight home.  At his funeral, I felt like I was out of my body, like I was watching someone else’s life on a TV.  It seemed like the whole high school class was there and there were lines out the door.  They buried him with a basketball under his arm.  That image is still burned into my memory.

Eleven years ago, I had absolutely no understanding of cancer or the brain.  What happened to Jason was scary and, in my mind, inexplicable. I avoided science and math in high school and I had no inclination towards pursuing a career in a health profession.  Now, years later, through my time at optometry school (and a biology degree before that), I have a completely different perspective and a fuller understanding of how cancer affects the brain.  I never would have predicted this is where I would end up.  Although optometrists do not manage the treatment of a brain tumor, they can serve to help initially diagnose its presence and are also involved in the long-term monitoring of progression via assessment of visual fields and the retina.  Perhaps most importantly of all, optometrists can help in the management of day-to-day activities through low vision aids and rehabilitation and also provide understanding and empathy.  I feel fortunate that one day I will be able to, in some small way, help those affected by all of this.

As the days wind down at the VA, I wonder more about the details of how Jason’s healthcare providers handled his case, from diagnosis to treatment.  But I’m not much closer to understanding fully what sort of toll it took on Jason and his mom and his close friends, or any of the patients I’ve seen for that matter.  In time maybe, maybe not.  But so it goes.

On and On

And that’s that.  In my final blog of the summer, I’ll close my three part post by talking about children with disabilities, Perkins School for the Blind, and about a friend with a child who has an inoperable optic glioma.  Should be a good one.  I’ll see you then.

 

 

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