Adventures in the Cancer Infusion Center: Real Live Support Group

Many of us are fortunate enough to have loved ones of all types who recognize our limitations and support our ventures in overcoming them.  H.K. is one such phenomenal human being.  But in the end, there is nothing like talking to the MS patient in the infusion chair beside you for two hours; he with his Tysabri and you with your Remicade.

Mr. Jones was a happily married father of two kids in college.  He was, without question, the most talkative person I have ever met in the infusion center -- and although creepily Michael Keaton-looking, the youngest besides myself.

He was diagnosed with MS when his children were 9 and 11 years old, and took advantage of every feasible route to being able to keep his job and contribute to supporting his young family.  Last year, with his kids finally moved out of the house, Mr. Jones had to retire (there is no way the guy was over 45) due to the cognitive irregularities and physical strain he suffered from MS-induced lesions.  He started Tysabri treatment, and I met him today during his 14th infusion.

Interestingly, Mr. Jones brought me into a conversation with his nurse about recent numbness in his limbs (a side effect of Tysabri).  He was elated to inform me that he has never fallen, because when he notices he is walking funny, wherever he is, he sits.

I was regaled with stories of other MS patients in his support group who are confined to wheel chairs and whose spouses left them because they could not take the demand.  Who fell out of their wheel chairs trying to get out of their houses because their adult sons (yes, plural) could not build them a plywood ramp... or help them cross the threshold, evidently.  I was brought to the verge of tears several times.

He was visibly perplexed at my being in graduate school.  "Dude, aren't you totally exhausted all the time?" he entreated, "how to you think clearly enough?"  We addressed each other as "dude", which I thoroughly enjoyed.

"Well -- hah -- I am, and I don't really.  Especially during exams," was my reply.  And it could not be more true.

Being surrounded by other graduate students is amazing in many ways, one of which is that I feel completely normal in their company.  The caveat, of course, is that I begin to wonder why I am not acting so normal.  Why am I not up for a study group until 2am?  Why am I not up for going out to dinner on a Wednesday night?  I tell them that I need to spend time with H.K., which could not be more true.  But I don't tell them that I am impossibly wiped out from the day and I can't think of anything but eating and sleeping.  Omitting the latter excuse from my responses makes me forget that I'm not just being the troglodyte homebody out of lack of interest... I'm being a troglodyte homebody because I'm not healthy.

This is not to say that I'm not doing incredibly well.  Sans the blepharitis, nausea and exhaustion I am healthier than I have been since I was 10 years old.  Mr. Jones reminded me that I am legit.  He also reminded me how fortunate I am to be doing so well on Remicade.  And he reminded me how phenomenal is my spouse.  I couldn't feel more honored to have met him.  Thank you, Mr. Jones.

Perspective

I just watched the documentary "Under Our Skin", which is about Lyme disease and the disgusting politics surrounding the insurance companies and medical boards (surprise) that prevent it from being properly treated.  One of my most favorite people in the universe has Lyme, and her perseverance has always been inspirational to me.  It's an important message about how biomedical research is just as susceptible to being stunted by corruption as any other major enterprise.

Consequently, watching these types of documentaries is incredibly depressing to me.  Though there is always a ray of hope at the end, I can't help but sink into guilt.  I am not earning my health, there are people so much worse off than I am that I must be faking it, I should be in toxicology or immunology or infectious disease instead of neuroscience, etc, etc...

H.K. is kind enough to remind me of what pitiful condition I am in without the right medication -- how dysfunctional I was before Remicade started to work a year and a half ago, the concern for what will happen when I can't take Remicade anymore, and that even though the pain is now benign and infrequent I have acquired all kinds of side effects.  One of them is being in grad school.  For which, though I complain (because that's where camaraderie comes from), I am so incredibly grateful...

Bring it on, 2012.

Remicade... I've lost count.

This morning, on a clear 70 degree day in December (no biggie), I sauntered into the Cancer Treatment Center on the beach [sort of] no earlier than 10am.  Within forty minutes I was in my corral, neck deep in stem cell litricha and racing along at 140 mL/min.  This was a smaller corral than last time, with only three stations.  And.  Guys.  There was a huge window.

My baller nurse convinced me to let her do an inner forearm I.V., at which I cringed in reflection of the last time I agreed to this (it was ouchy enough to require a warm pad for the full 3.5 hours, and this is coming from someone who likes needles).

 

              Isn't that an insane spot?  I thought it was an insane spot.  Although I did end up requiring a "warm pad", it was only briefly.

Two.five hours later with my brain and veins saturated, I headed back out into the sun to find groceries and prescriptions.

Things I've learned in graduate school

1.  forgetting to eat is a bad habit

2.  forgetting to eat and washing down your day with three beers is a worse habit

3.  spending the evening vomiting bile because you are a Crohn and shouldn't be drinking beer in the first place is not ideal midterm preparation

4.  taking the most convoluted and poorly phrased midterm in the history of academia while hungover (from three beers) and exhausted from vomiting all night (from three beers) is even less ideal

5.   medical offices everywhere fail miserably at communication -- it wasn't just Kaiser.  no sooner did i escape the awful affliction of Mid-term-dom  than i received this call...

"Oh hai, btw: your Remicade appt tomorrow morning [Saturday] that you made with us 2 weeks ago?  Yeah, I'm gonna go ahead and cancel it because we don't know whether you have authorization through your insurance lolz!"

First of all, why did you wait until Friday afternoon before my Saturday a.m. appt to tell me that?  And secondly, my doctor's office was supposed to convey that information to you two weeks ago.  Who dropped the ball, them or you?  So two hours of my life were lost trying to figure that out (still dying of 12-hour-bilemania).  Ten minutes later:

"Oh haai!  Btw: you don't have authorization for your Remicade tomorrow so we have to cancel your appt."

Are you fucking kidding me?  I just spent two hours clearing this up.  You have the information in your system now.  Go ahead and turn your computer on.  Do it now while I'm on the phone so I can guide you through the process.  She's been checking that detail for the last 45 min... apparently their computers are made of bark.  Meanwhile...

"Oh hai there! Btw: your insurance wont be covering your Remicade appt because you were referred by your GI's office and not be the university health center!"

.................. is a referral by the doctor to whom I was referred by the university health center not by proxy a fucking referral?   I'm looking into it.  Because apparently their phones to other offices are also made of bark.  I'm sure I'll find out right after I get the bill.

6.  your PI and lab manager being in disagreement on the critical details of your new rotation project and failing to let you in on their decision 2hrs before your scheduled surgeries to use your mice for some other thing that came up... is just not cool.  serious demerits, y'all.

7.  TGI-take-home-midterm-F!

Neurobeer: an orientation week finale

As it turns out, I do in fact have a small amount of terminal ileum inflammation, but not enough to stop me from eating salads on a near-daily basis.  Or biking after boozing on Friday afternoon...

After an agonizing week of general grad and departmental orientation, I am pumped to actually start in with courses and a regular class/research schedule.  The little that I've gleaned of my incoming classmates has been stellar; we are all from different backgrounds and excited to share our expertise and learn from that of our peers.

It also turns out that 3 of the 5 of us (and one other incoming in another department) want to rotate with a particular assistant professor who was just given a lab just this summer and who I just learned about last week (more on his situation after our meeting next week), so my rotation schedule has been jostled into upset and I am just shy of frantically lunching and coffeeing with PIs and grad students in order to re-prioritize.  My 3 comforts are as follows:

1) schedule upset is a defining characteristic of academia, and this compulsive organizationalist naively invites the challenge as if she might actually conquer it;
2) I am confident enough in my enthusiasm for finding a rockin' project and publishing/collaborating through it that I don't feel reliant on a PI having an established and renowned publishing record;
3) I have a NSF grant, ergo, I'm a free-be, ergo, I'm not in the same kind of competition with other graduate students for space in a lab of my choice.

After four days of mind-numbing introductions, patronizing trainings (and I was prepared for this process, but having your entire breadth of background disregarded and being made to start back at zero is frustrating no matter how prepared you are), stressful reconfigurations of research rotation fates, and a Remicade infusion, there was Neurobeer.

Yes,  I am part of a neurobiology program that treats its family to beer and free cuisine each month.  And by cuisine, I don't mean wraps and cookies -- I mean Mexican, Indian, Asian cuisine.  And by family, I don't just mean the grad students -- I mean us, recruits, post docs and PIs.  All chillin' in our courtyard with a beer (or wine, or soda, as you prefer).  I lubs it.

Remicade and identity theft

H.K. has finally experienced colonoscopy prep Raga.  Something about not being nauseous or half conscious (as I have been in my previous three) makes a liquid diet and 4 liters of electrolyte concentrate so much more irritating.  I survived only for the promise of a teriyaki chicken burger.  Which was devine.  And for his part, H.K. was utterly delighted when he was handed picture copies of my lower guts.  All of his suffering from the last 36 hours vanished.

As dreadful as the prep was, the results may have been worse. 

At my follow-up appt the next day, it was concluded that my Crohn's -- at least the lower bowel Crohn's -- looked fantastic.  Scars smaller than ever, inflammation gone, no ulcers, no abscesses.  So where is all the pain coming from?  IBS, says Dr. New GI.

Nuh uh.  IBS?  In my 13 years of Crohn's, no one has ever mentioned that some of my pain may be coming from IBS.  I feel almost slighted.  Remicade is doing beautiful work in my lower tummeh, and in doing so stealing my identity as a Crohn.  I don't know how I feel about this.

You're thinking, "you should be cheering, wtf is the problem?", am I right?  And I am.  Yay.  It's like this, though.  When you have a creature inside you for 13 years and you're told that that creature may now either be hibernating or dead, there is a feeling that you've lost a part of yourself.  Not quite like when a Trill's symbiont dies, but similar.  Especially when the loss of your creature doesn't actually change anything about your life(style).

First of all, for those who have been following the journey, it was decided that despite all the side effects of Remicade that I've been accumulating over the last 2 years, we're going to keep me on it.  Because, well, my inflammation is gone and my scars are no big deal atm.  So we're redirecting the energy of the mission into full mobilization against the psoriasis, the dermatitis, the hives, the fatigue, the rotting teeth and the chronic infections.

That said, Dr. New GI has not ruled out any activity in my upper tract.  So we're checking my sedimentation rate and I may be doing the camera pill in the near(ish) future.  Rock on.

Is this it?  Am I still a Crohn if I'm just battling the Remicade?  I had a small identity crisis last night before realizing... if I still feel like shit, and my immune system is still functioning like shit, nothing has really changed, has it?

the traveling Crohn: displacement

Oh, hai.  Just checking in.  Not dead.  Still kickin'.

After a pleasant and leisurely road trip from the PNW, stopping pretty much everywhere in the Bay Area (BA) to see the in-laws and such delightful people as Kara from Sempre and some of H.K.'s childhood friends, and a quick stop in the BA ER for some I.V. and CT scan action (because who could resist?), we did eventually make it to our southern destination last week.  We dragged little bro-in-law down from the BA and unloaded in 1.3 days, and were completely unpacked and settled in after 5.  Relocation machines.

 Good bye PNW.

 

 BA R&R.

Apart from the disaster that was transferring my medical ID and records from PNW Kaiser to So. Cal Kaiser (now 1 week late for Remicade and nowhere near being ready to change treatments as planned, thank you), I am floating head above water in the sea of graduate school entrance paperwork.  No department can seem to agree on what I need to do and in which order... so I just kind of dowhatIwant, and lo' and behold, it's all getting done.  The nice thing about So. Cal is that none of the hassle is really too much of a bother, because, well, the sun is out.

Hullo desert.

H.K. and I bike somewhere new (or new-ish) every day, which is great for my mind and all-too-out-of-shape corpus.  And I fear we are in a never-ending feud as to whether I should drop my PNW roots and start wearing up-the-crack shorts (hoochy mama shorts, I believe they're called) like the rest of the New Home Base community.

Today is the first time I've sat down and really taken a breath.  And by taking a breath I mean worked on my conference poster and discussed experiments [in which I no longer have a hand] with Boss Man, naturally.

Best of all?  The ants know their place here.  They stay outside.  And.  The squirrels that run rampant in the PNW?  They're bunny rabbits here.  Everywhere.  As being displaced from the land and people you love goes, it's glorious.  Bring on the science.

in which Remicade is a Mercedes Convertible, and I decipher Russo-English science

It has finally happened.  I -- organizational and scheduling fanatic -- have missed an infusion.  By two weeks.  How did this happen?, you may ask.  I'll tell you.

I rescheduled my infusion to be two days after I met with Dr. GI, so that if we decided to scrap the Remicade and move on to "sexier cars" (his words), I would have drug-free buffer room to start immediately.  In fact, what happened was that when the nurse rescheduled me, she in fact neglected to reschedule me.  So my appointment came and went, as did my alleged infusion date, and I called the clinic to see why they had no appointment for me.  "You were a no-show on the 14th," is what I was told.  "But I rescheduled for the 27th of May, I just did not receive a reminder from Epic as I typically do and so I have not yet been infused -- I must not have been rescheduled" I retorted.  "Oops," the nurse replied, not at all withdrawing the reprimand from her previous remark, mind you.

Not all that exciting a story, really, but I wanted to get your hopes up.  The recent increase in Throughput over the past two weeks may be in part because I am overdue for my drugging.  Dr. GI was firm in his conclusion that it is not because I've increased my veggie intake.  My miniature experiment wherein I ate only crackers/rice/broth for a day and produced a 50% decrease in Throughput the following 24 hr period was noted.  The 50% reduction did not convince him.  And since I've been buffering all my veggies with fluffy carby foods over the last week with no Throughput let-up, I am beginning to side with him.  It is possible that my notably increased nausea and dependence on Percocet to survive the evenings are weighing in.

So... I'm taking my Remi from the 8- to the 6-week interval -- perhaps the 4 -- and if in the coming two months I do not see improvement, I will concede to move on to "sexier cars".  For now, I will deliberate between Humira (the Benz), Imuran (the Lexus) or LDN (the Prius).  I refrained from challenging Dr. GI as to whether Imuran was a Lexus or, in fact, an Astin Martin.

Meanwhile, in my small corner of the world of science, I am reviewing my first manuscript as a Peer.  It has been translated from Russian, and while the findings are very exciting, the syntax, run-on sentences and hugely neglected Methodology section have been problematic for my novice brain.  I spent 6 hours on Sunday trying to get through this thing (during this same period, my boss pummeled through a 140 pg dissertation... pwned).

Something I am gleaning from my meager experience in reviewing and being reviewed is that reviewers tend to hope that you cite them in your work.  Often, when we (my lab) produce(s) manuscripts, we request reviewers whose work we cite in the present work.  The Russian paper from this weekend didn't cite any of our work anywhere, which was not really offensive so much as remarkable because their findings were so intertwined with ours, and supported by some of our previous publications.  They did not defend discrepancies between their data and that of other studies which they did cite (which was a weird door to leave open), nor did they speculate on the correlations within their own data set (also odd).  It is a very different experience to read a submitted manuscript than a published article.  I think I like it...

Just another serenader

What am I going to do in three months when I can't cure my ails with days like this?  I do love to be in the ocean, truly, but nothing revives like a PNW river.

 

We had a heart to heart last night, H.K. and I.  He's scared, which puts the situation in a startling new light for me.  The process of decay is not easy to hide, nor do I consistently give it my best effort in front of H.K., poor thing.  It was necessary for him to express his worry, I think, for me to remove myself from brooding and take initiative (read: wait more optimistically for my GI appt. at the end of May).  This is not an unbeatable foe; it requires only the cooperation of my physicians and a plan of attack that can be undertaken successfully within three months, because hell if I'm going to be thrown back into the darkness of 2009 before the move south... and hell if it's going to make me put off school for another year.  It's hard to keep in mind that I'm not a unique scenario, just another serenader... on lots of antibiotics.

Crohn's, Parkinson's and hypochondriasis

Typically, I post research reviews in HWAH, but today's report involves a degree of hypochondriasis which I deem too personal for the "professional" demeanor of HWAH.

The first article that I read this morning was a report on two case studies of young women who developed Parkinsonism (PD) after adalimumab (Humira) treatments (there was, of course, mention of a similar case associated with Infliximab (Remicade)).  Wouldn't it be funny, I thought, if my Crohn's treatments lead me to develop the disease whose study launched my research career?  I decided that it would be ironic, but not funny.

Naturally, only MRI scans and Unified Parkinson's Disease Rating Scale (UPDRS) scores were reported.  No biomarkers, no longitudinal coverage.  I do appreciate case studies and understand their valuable contribution to biomedical science, but it always bothers me that they feel so incomplete.

The causal relationship was primarily based on motor symptoms developing after 7 mos. (Case 1) or 11 mos. (Case 2) of Humira therapy.  The cited Remicade case showed symptoms only 1 week following a first treatment.  And though Parkinson's cannot be ruled out in the first two cases, many studies of early-onset PD are associated with the Parkin gene mutation, good response to levodopa therapy, and slower progression compared to late-onset PD.  This suggests to me that since no biomarkers were reported in the current study, it is equally possible that early-onset PD was already en route to phenotype and possibly exacerbated by the TNFalpha blockers.  In defense of this hypothesis, both case studies responded well to Carbidopa/levodopa.

Who says that only medical students get Medical Student Disease?  With all the allergy symptoms that I've developed over the last six months, why not add potential PD to the list?  Granted, I've been on Remicade for 18 mos. now with no perceivable motor impairments, but what's to say that it wont manifest later on?  After all, my allergy symptoms were comparatively delayed.  If I weren't moving and beginning graduate school in the next few months, I would drop Remicade and experiment with supplement and diet maintenance.  The reason that this is a bad idea is that I will likely relapse as I have so often done on supplement and diet plans, make miserable the 22 hr. drive down to Southern Cal, and cause me to fail out of school within my first term.  So plz, PD, stay away until I'm at least 60.  Thx.


Ha AD, & Jankovic J (2011). Parkinsonism and dystonia associated with adalimumab. Movement disorders : official journal of the Movement Disorder Society PMID: 21495070

Remicade, and other stories

In a striking turn of events, I feel like a bag of bones today.  A very nauseous, very tired, ever so slightly irritable bag of bones.

My umpteenth Remicade infusion was Saturday, and I left the hospital feeling ill, which typically does not happen.  Full disclosure; I did enter the infusion clinic preemptively concerned about having developed Remicadibodies and having an allergic reaction.  This manifestation stemmed from my sort-of-recent hyper-allergenic condition (read: psoriasis, dermatitis, new mouse allergies, hives).  While there was no immediate reaction to be seen -- bummer -- I did not feel well for hours afterward.  In fact, I did not feel well for any part of Sunday either.  And, in case reiteration is necessary, I do not feel well today.

It is highly unlikely that this is more attributable to Remicade than to the gluttonous amounts of [cooked] leafy greens I've been eating of late.  I would even stretch to suggest it might be a result of the increased carb-heavy (read: salty, sugary, processed) foods whose ingestion I have defended on the basis of not being able to chew anything with much of a texture (potentially making the leafy greens an even more obvious culprit).  Thanks to Remicade, I'm not in very much pain, but those manifold side effects are aggregating.

And yet, this bag of bones was here at work promptly at 7am processing tissue samples and simultaneously probing nitrocellulose membranes.  This means I have what it takes to survive six years of this work load ten fold in graduate school, yes?..

wherein Crohn's disease meets dental work

I do have good news forthcoming.  It is being delayed by my promise to withhold such commentary here until my guest post is published on the esteemed BenchFly blog.

In the meantime, I have been to the dentist.  Admittedly, it has been two years since my last visit.  Part of the reason for this is because I've been so overwhelmed with directly Crohn's-related medical appointments/maintenance.  I emphasize directly, here, because my new dentist was kind enough to give me the gritty details (te he) of how the current condition of my teeth and jaw is indebted to my Crohn's treatments.

Just to brag, I have six new cavities, one previously filled cavity that has deepened and threatens to warrant a root canal, and jaw misalignment which threatens to evolve into a serious TMJ problem.  My wallet is thrilled.

For a brief history, I had no dental problems until the age of 20.  No cavities, no alignment problem, no braces.  Then, after my second Prednisone stint, I suddenly had three cavities.  Two years later, one of those cavities became root canal-worthy -- over the Atlantic on a flight to Israel, no less.  Now, at 25 and following my third and longest acute Prednisone treatment and my first year of Remicade, I am blessed with an onslaught of six new cavities, a potential second root canal and likely TMJ.

When I was younger, my dentist gave me the same spiel every six months: "Your gums are bleeding so clearly you're not flossing.  You need to floss more."  As an avid every-other-day flosser up until college, I was prompted to give up the habit when my dental health declined despite my scrupulous efforts and I decided the flossing mantra was bullshit.

My new dentist told me that it was very apparent that I was taking care of my teeth (the flossing habit returned when my husband entered the picture), and that my medications were sure doing a number on my bones.  Say, what?

My renowned gastro was very convinced each time I asked (before each of my three Prednisone treatments to date), that my treatments were so short-lived that my bones were not a concern [repeat: not a concern].  So I wasn't adamant about calcium supplements [read: there were no calcium supplements involved during the first ten years of my treatments].  Nor fluoride treatments.  Oops.  Your gastro hardly ever cautions you to take care of your teeth on Prednisone or Remicade, but the above developments in decay are not specific to me.  Google it.

My new dentist's explanations included citing the bone density loss associated with prolonged Prednisone, or multiple short acute treatments.  Remicade's role seems to be more subtle, in terms of causing dry mouth which, by decreasing salivary flow, decreases the washing-over of gums and teeth with salivary disinfectants such as lysozymes and peroxidases which help fight cavity-forming bacteria.  This example is in addition to Remicade's suppression of the immune response, in itself making the mouth more susceptible to bacterial invasion.

As a scientist, I am embarrassed at not having assumed these conditions of my own accord and treated them despite a lack of concern on my physician's part.  As a human being, I feel bummed and duped.

I am currently brushing twice a day, flossing once a day, using anti-cavity fluoride rinse twice a day, having each cavity filled over several appointments, chewing xylitol gum daily, fitting a mouth guard in attempt to ward off TMJ, and taking calcium supplements religiously.

Wouldn't it have been nice if a gastroenterologist could have helped me prepare to fight these potential side-effects at any of the three times that I've been put on Prednisone, or when I started Remicade treatments?  In fairness, they're not dentists.  But also in fairness, "bone density loss" implies inclusion of teeth as components of one's physiology.  In yet even more fairness, I have not been to the dentist in two years, and perhaps a good dentists like my new one would have mentioned something earlier on that would have helped me to prevent this mess.  Live and learn, eh?  Now we know what my fellowship money will be spent on.

milestone: I have officially lost count of Remicade treatments

Yesterday, I realized that I have now lost track of how many Remicade infusions I've had.  In celebration of this milestone, and just to spice up the morning since I needed the next four hours to write, I opted to place the I.V. in a very new spot.  On a recommendation from Sempre, I had my last I.V. on the back of my wrist -- ideal for motility and/or mobility.  This time, my nurse honed in on the tiny vein halfway up my medial forearm.  Yeah, it's sensitive there.  Though my nurse is a ninja with a needle, this particular vein had not yet been broken in, and elicited a breath-holding type of pain.  It did do the trick, for I was fully awakened, and with a heating pack the spasms died down in half an hour.  Three essays later, it was time to head home with not even the smallest bruise.  Needle Ninja.

I will probably not use this vessel next infusion because I like to give each vein a fair chance to show off its docking capacity, but I will use it again.  Certainly on days when I need to get work done...

in which i grow tired

Well, I am broke.  Thus far in October, I have had eight separate doctors appointments spanning five doctors.  I have three more -- count 'em, three -- this coming Wednesday before I head south to Willamette U. to be on a career panel for up-and-commer scientists and then get infused with Remicade before flying to San Diego for my first major conference.  With all due gratitude to my government bosses for providing excellent coverage for their employees, never underestimate the paycheck-dissolving power of copays and prescription fees.  I can no longer afford to eat sushi twice a week.  Woe is me!  My bedside table is officially over flowing with all my vials of drug, and I'm not entirely sure that my body is tolerating them either.

However, our home is thoroughly draped in Halloween splendor and this Saturday's party -- whether or not my guests decide to appear in costume, ahem -- will be well-worth the cooking frenzy (let's not kid ourselves -- I am not above a last-minute run to Costco to make sure the meal is edible).  And Sunday... Sunday is reserved for horror flicks and football.  Hell.  Yes.

The cycle has snowballed, and I am, as yet, uncertain whether it is calming down.  Despite all the more tangible symptoms, the fatigue is what is most getting in my way.  Because of the fatigue, I don't run in the mornings.  When I don't run in the mornings, the depression comes on all the more easily.  When the depression sets in, I don't sleep because I spend the evening terrorizing and bloating my sinuses.  When my sinuses are bloated, not all the sinus irrigation/flonase/sudaffed/fexofenadine or promethazine in the world can help me sleep.  And when I don't fall asleep, it doesn't matter how many times my bladder forces me to get up through the night.

Where is my colon in all this, you ask?  It's fidgeting on the sidelines trying so valliantly to get onto the field.  "Lookit me! I'm giving you car sickness every morning and every afternoon!" it wails, "I'm giving you the most delightful smorgasbord of Throughput and you're not even paying attention to me!"  Alas, my loyal companion, you have taken a back seat to other -- dare I say, more pressing -- issues.  Never fear; your time in the lime light will come again soon.

on reclaimng life

Having gotten through the most terrifying aspect of this season (the GRE), and having experienced the worst case scenario (not only unimproved, but slightly lower scores than last year... when I was high, nauseous and in pain), I am successfully emerged on the other side of doom.

Oddly, I am less bothered by average scores than I expected to be.  The relief of its being over with is much more potent than the disappointment with my performance on this particular exam.  Frankly -- and I'm not alone here -- I regard that test as far more highly referred to by graduate school admissions committees than is wise.  That said, I am acutely aware of how biased, political and funding-based the admissions process is in general and, therefore, am aware that average test scores will not be my undoing.

That is, of course, unless my average scores prevent me from being invited to interviews.  The thing is that highly prestigious schools will triage applications to the discard pile if they are not at a particular level.  Here is why I think that is a complete bullshit filter for applications:

This summer, I had the privilege of teaching several intern students.  Two of them were at he high school level, and were very fun to teach because they were fledgling scientists with lots of interesting questions and a flare for the work.  At least by the end of the summer, when the results of their month-long project started trickling in, their enthusiasm was wonderful.  This is why I love teaching.

In another vein, however, I had the privilege of teaching some biochemical techniques to one of our veteran students who has been doing analysis in another part of our lab for three years, and whom we had come to regard as a genius.  This student happened to be entering his senior year as a Biochemistry major, was applying to graduate programs, and was using his last summer month with us to buffer his resume by learning some new techniques.  He was, for all intents and purposes, my peer.

He was also a complete dolt in the lab -- more clumsy, less interested and with the worst memory I had ever seen in a person, scientist or otherwise.  I was completely taken aback by his lack of apt for deduction (read: common sense).  Please understand that this is not an exaggeration; I was shocked and befuddled that teaching my peer was like teaching a kindergartner.  I had to cut in half what I had planned on teaching him in that month because he could barely handle what he was initially tasked with.

How this boy could possibly be an academic genius became more and more puzzling.  Yet, his GRE scores trumped mine.  And he will be invited to interview at Stanford (yes, he is applying to the exact same programs that I am), and I will not, because his scores are higher than mine.  He will bomb his interview, because he knows almost nothing about what he's been doing for the last three years, and has very poor social skills (for which I do feel bad for him), but he will get them, and a small part of me dies whenever I think about that.  Despite this, he may actually be admitted to programs that I am rejected from because the more prestigious the school, the more weight is put on his exam scores.  I have effectively buffered the resume of a boy who, for all his pompous yet oblivious innocence, will never be a decent research scientist much less a Stanford-grade one.  What's more, he has no idea why he wants a PhD; it's just another step in the academic achievement track.  And this, as I studied for my own second-go at the GRE, was infuriating. 

However!, having faced my worst fear and come out the other side, I am happy with whatever school I am accepted to because I know what I want and what I'm doing, and will be a huge asset wherever I end up.  Whatever I want to make happen with what I'm given will happen, because that is something I've consistently been good at.  Getting into an amazing school instead of an average one, however, would be much welcomed reassurance that I belong in this field.

I could write volumes on how to best approach finding a graduate school, preparing yourself, exploring options, what the GRE actually says about your scientific potential, and negotiating the politics of science, but this data dump is dry enough as it is.

To end on a pleasant note -- and I must, because I feel better now than I have felt in two months -- this weekend was beautiful!  I worked on my grant while being infused for four hours on Saturday, stopped at New Seasons to pick up special sandwiches on the way home, and took the bikes and Frisbee out for some exercise at the park for the afternoon.  It was freeing, and wonderful to be able to throw myself back into real life. 

 

Today, I will finish my next manuscript and make some progress on applications having filled my tummeh with my new favorite Lisa-inspired breakfast: waffled eggs with chive Tofutti and onion bagel.

I feel good.

Of nasal exoskeletons and forcible exhaustion

It may be surprising to my viewers that I am awake at 3am.  The typing kind of awake.  Shed your marvel, my friends, for this has been my habit for a month, now.

In June, when the allergy bug settled in my sinuses, this was just a regular infection, and I treated it as such with saline, my trusted Nasal Crom, and even hopped on the Neti Pot wagon.  By mid-July, when none of these therapies worked, I threw up my hands and called it in.  By this time, I have developed inner nasal scabs which made mucous expulsion quite the bother.  A prescription of Flonase was bestowed without even an appointment.  Beautiful.

Fifteen dollars and three glorious weeks of regular breathing later, it was time to abandon the steroids and hope that their effect would be sustainable.  Fat chance.  So I called it in again, asking my doctor what the next step might be.  "Try saline washes and using the Neti Pot," says my doctor's replacement.

"Are... are you serious?" I wanted to respond, but refrained in the interest of actually getting some help on the stagnant-green-pool-harboring nasal exoskeleton front.  So I actually tried these saline treatments again, hoping that with the steroids having brought me back to stage one, they might work.  Negative.  A month later, the scabbing and green mucous flow are worse than ever, so I call it in again.

"Hi, I've been having some problems with my nose and may need antibotics."

"Well, why don't you give me an idea of what's been going on, sweetheart," says the Southern Bell on the other end of the line, who I must trust to translate my story to my doctor.

"Well, three months ago I just had what appeared to be a regular sinus infection.  I treated with all the different saline washes for a month, was prescribed Flonase for a month, and the infection got worse when the steroid treatment ended.  So now I'm concerned that I might have a more serious infection and be in need of antibiotics.  This is my first allergy season being on Remicade, so I'm susceptible to infection.  This is the first time in my life I've had a sinus problem nearly this severe and that may have something to do with it."

"Well bless your heart, you poor thing.  Let me send this message to the doctor and call you right back!"  I've spoken to this woman many a time. She is, if not effective, very sweet.

[Time lapse of three hours, Southern Bell calls me back]

"The doctor says she'd like you to continue using saline washes and wait until the peak season is over in October."

"Excuse me?"

"Yes, she said continue with the saline.  You're doing the right thing."

"Alright, look.  I know this isn't your fault, and I apologize for getting upset, but I'm at my wit's end, here.  Saline has not been anything resembling helpful during this whole situation.  I have gotten progressively worse with the exception of the fast-acting and fast-disappearing effects of Flonase.  I have been expelling green mucous out of my mouth at least ten times a day because my nasal passage has developed an exoskeleton so strong that I can't blow my nose because the mucous has no way to push through.  I bleed every time I sneeze, I now have scabs on the outside of my nostrils, I wake up at 3am every night, and frankly, I can't breathe at all unless I flush my nose with hot water every morning and try to peel away some of the blockage, and to exacerbate this I am in the crux of the most stressful time of my entire life.  Saline nor steroids have been helpful in this matter and have, in fact, allowed things to get much worse, and the doctor doesn't think that I might have an infection that my immune-suppressed body just can't fight on its own?"

"Well honey, I'm sorry.  Let me send a more explicit message to the doctor and get back to you soon."

That was a week ago.  I think I may have scared off poor Bell.

My exoskeleton needs a hot shower.  I'm effing tired.  I'm effing stressed.  Please give me some effing antibiotics.  I am working 50-hour weeks, writing grants, writing graduate school applications and studying for the GRE (something which I can't quite support logically).  I haven't run in two weeks because, well, it makes my sinuses swell.

Anyone have thoughts on just chopping the thing off, going Tycho Brahe style?

Summary

I've always appreciated the opportunity to be a big fish in a small pond.  My undergraduate studies were formative because in a liberal arts environment I was able to build what I wanted to exist if it was not already at my disposal.  I am able to flourish in my work environment because I work in a small lab, and am proficient in almost all of the many techniques we employ -- an opportunity devoid in most research technician experiences in major labs.  Why in the world I thought I wanted to become a water strider in a small pond, I... well, I was naively drunk on ambition and high on painkillers at the time.  It happens.

It has taken me longer than I expected to come to terms with what I am finally admitting was, in fact, not a major failure or condemnation of my prospective life.  Explaining this requires an extrapolation of the last two years.

In 2008 when I graduated, my plan was to stay in Portland working in my newly salaried lab position, get a grant funded, get a paper published, and apply to medical school.  However, having met H.B. and had a heart to heart with my boss, I relented to the reality that medical school would probably be my physiological undoing.  That was June of 2009.

So mid-June, I put away my MCAT books and invested in the GRE (which is much cheaper, much simpler, and much much less inspiring).  That was a Friday.

On Saturday, I was writhing on the bathroom floor unnerving H.B. with labor pains such as I hadn't felt in ten years.

In August, I finally met with Dr GI who was content to see me after staving me off with oxycodone for two weeks.  Glossing over the finest details, I took the GRE at the end of the month on painkillers, nausea medication and having eaten only fake broth, baby food and crackers for several weeks.  Not one of my best performances.

Nonetheless, I applied in November to four of the most prestigious PhD programs in Neuroscience that I could find.  In my defense, it's not my fault that the only places who offered my ideal program-PI combo were the hardest to get into in the country.  It is my fault, however, that I was so fool-heartedly naive as to think I might be competitive in those programs (as a non-resident), and to discard any opportunity that wasn't up to par with my quixotic dreams.

Since November, the condition of my guts has improved astronomically.  That being said, I am not yet what I would call "physically well".    But it's getting there.

And here, my dear readers, is the kicker: I'm not crushed by this failure.

I am nothing if not obdurately and nonsensically ambitious.  Making the drastic changes of heart and career direction that I did in June should have been, of themselves, enough to convince me to take another year to get it all put together the right way.  A healthy me might have been sufficiently adjusted and prepared applications by November.  Having been in pain, starved and on drugs, however, I am willing to make the concession that I was hasty and would have fared better from having given myself a year to stabilize.  That wise thought did not occur to me at the time.  The things a deadline can do to one's soul...

I now have another year to make myself invaluable, to heal and to get it right the next time around.  And I can survive this set-back.  Things may actually get accomplished this year, too; I have three papers and two conferences in the works, and will be moving toward disability accommodation so as to avoid another tragic event as that which usurped my intentions last August.

Needless to say, I'll be looking into smaller ponds next year.

Currently, I have had six Remicade infusions, have dropped 6MP, and have finally tapered successfully (or so it seems) off of Prednisone after six turbulent months.  I am eating 4-6 small snack/meals a day and avoiding pain 70% of the time by having eliminated quite a few foods entirely.  Nausea is usually quelled by the late afternoons, and fatigue has been mild and tolerable.

Another year to spend in my beloved lab, in my beloved Portland, near my beloved family and with my beloved H.B..  Things could be worse.

Remicade Round V, and other stories

1) Since I have been doing well without Benadryl or Tylenol, I went to my fifth infusion alone.  I discovered two things: a]  there is orange juice if you ask for it, and b]  four hours is far beyond the tolerable duration of headphones, and I will be bringing a book/laptop next time.

2) The step backward into more Prednisone in attempt to avoid severe fatigue and nausea in the second taper is proving questionable.  Just as my moon face was fading away, its return was stimulated immediately.  The fatigue disappeared for a week -- likely due to the initial P.M. -- and now I am exhausted again although not to such an extreme degree.  Although I have cut my hair it continues to fall by multiple handfuls each day (thank you mom and dad, for affording me such thick locks to begin with that this hasn't yet been devastating).  And lastly, the chronic nausea and cramps in my legs have returned.  Killer week, for sure, but all this aside, life is good.

3) And the cold sweats -- the cold sweats are awesome.

4) Rejection letters and interview invitations begin arriving this week, and as such, panic mode has settled into the forefront of my conscious.  Let the trauma begin!

happy new year part II

There are two reasons I stay with my current GI:

1) he is the supposed "best", and

2) when he actually has time to meet or speak with me (as opposed to sending messages through his sweet, "bless-your-heart", but less privy nurses), the conversation is valuable if only in that he agrees with my speculations enough to write me prescripts.

He called me himself last night -- likely because it was late and the nurses had already gone home -- and together we re-hashed the mish mosh of notes from his nurses and came to some unpleasant but necessary conclusions:

1) the fatigue and chronic nausea are probably due to Prednisone withdrawal, even though I've never experienced them in the past.  Therefore, back on Prednisone I go, ready and enthused for re-enhanced chipmunk cheeks and P.M. (which is actually highly welcome considering the sluggish through-put I've had at work lately)!!  A week of 10mg/d, a week of 5mg/d... a week of 4 mg/d... a week of 3mg/d... etc.  I'm so thrilled.

2) nausea is never a poignant sign of anything in particular, is just comes along with whatever, so we'll hope it subsides with the Prednisone, and if it persists after this second taper we'll "reach into his bag of other tricks."

3)  the folks at the infusion center with whom I scheduled my next few rounds of Remicade are apparently not in charge of the 6-8 week rule, I am.  If I'm not feeling well, it's every 6 weeks, and they do not get to tell me otherwise.  I like when my doctor gives me power over other medical staff.

Any type of moving forward is welcome, for I need to teach surgeries tomorrow and must be, well, functional. 

The New Year has taken a more pleasant turn since the dreadful whining of last week's post.  Thanks, in no small part to H.B..  For whatever reason, as draining as it is, teaching brings out a kind of aplomb that allows me to breathe through the melancholy pudding that is chronic fatigue -- which, for the record, should really be called Chronic Deadweight Syndrome.  Tonight, my first social excursion of the year (and in several months, excluding my parents)!

Remicade Round IV

Why Round IV was grand:

1.  They started me on a fancy new protocol last night for the super cool patients who have gone three infusions with no "problems".  Instead of coming in every 15 minutes to increase my rate, they're starting me off at full throttle and letting me run the 2.5 hours.  Apparently, this makes almost no difference to me in terms of time consumption, but saves the nurses the hassle of coming into my room every 15 minutes.  I am an awesome patient.

2.  No Benadryl or Tylenol.  This is also the first time I've appeared for my appointment without being high on painkillers or in raging pain.  Awesome.  Next time I'll be able to drive myself and spare H.B. the wasted four hours of his life (which he insists he does not consider as such, but who wants to spend Saturday evening sitting in a hospital bed entertaining their girlfriend?).

3.  Seinfeld was on for a bit.

4.  There was leftover stuffing for supper when we got home.