Living: A User Experience

There is something abrupt about

A lack of loading dots prim-

ing the screen.
You, as the user, don't know if 

it will take seconds, minutes, 

months
to receive a meaningful 
response.
You don't know if things are processing, you
don't know if things have crashed.

You don't know if things are moving forward.

We live our lives through 

touchpoints.
The follow up, the interaction, any 

snippet of priming that brings the 

object or person back to the top of 

mind.
To remind you they exist.

We build experiences as seamless yet 

we live our lives abrupt.
We pause, we shift, we
jump from one thought to another --
One life stage to the next and we
don't know what to expect,
And we live in this state of 

uncomfortable uncertainty and
haven't we solved for that?

Haven't we created
loading dots?

Snapshots

Last year, I celebrated New Year's Eve in the fetal position. 

I could count pain in milligrams of drug sufficient enough to tranquilize a giant, but not enough to alleviate the pain of sitting upright or putting on pants. 

My neighbors helped me safely navigate the 50-ft trek between our houses and strip off the leggings unable to accommodate a distended belly and overwhelmed stumps for legs.

In January I bought oversized clothes and met my at-home nurse who thought my 30-pound tumor lump was a baby. 

In February I relived the fetal position on the floor of a Port Authority bathroom stall. My best friend came, found me an ambulance, and stayed with me while the morphine dripped over my first encounter with a lymphoma-related bowel obstruction. 

In March I did extensive research on the topics of:

 "what foods will make me vomit," 

"how to eat: sort of,"

"why won't you stay down, you are liquid, what"

and finally,

"chemo and the case of the tummy tumors: I would laugh but I'm so hungry"

In April I had my first (+ hopefully last) experience with the NG tube, TPN, and "abdominal cut-and-paste." However, I did get to share my hospital bed and apple juice with my best friends and some service puppies.

The morning after I got out of the hospital, I took myself to my first appointment for BMS-936558, now Nivolumab.

In May, newly treated, I went back to Philly as a skeleton in a wig and relearned how to eat. 

In June I began the process of reorienting myself as a semi-independent person who eats and walks and talks and commutes every morning.

In July I was living.

In August I was living.

In September I was living.

In October, still living, I had a lung biopsy that resulted in a pause of treatment. Somehow, hearing the drug worked so well it caused inflammation made it OK. 

In November, living, I started a big kid job that involves Nerf gun fights and field trips to Medieval Times.

In December I'm alive, well, sunkissed from a trip away from home not involving an IV, blood test, or inpatient stay.

What a year.

Progress

I decided to geek out a little over the lab results MSKCC handily provides on my patient portal. Here is a little snapshot of my progress over the past year(s). (The numbers from the past three years have a lot of variance, shown below.)

For hemoglobin n00bs, check out wikipedia.

Past 3 years:

Hemoglobin levels from diagnosis (August 2010) - to now (October 2013) Hemoglobin indicates your blood's oxygen-carrying capacity. (Mayo Clinic) 

Past year:

My Hemoglobin levels over the past year (Oct 2012-Oct 2013) . 11.5 (g/dl) - 16(g/dl) is "normal", highlighted in red. (g/dl is grams per deciliter)

As you can see, there was a fairly steady drop from Nov 2012-Dec 2012 of last year, when I was "most sick" (comparatively). A non-bleeding ulcer discovery and several units of blood later, I was all shiny (ruddy) and new(ly treated).

You'll notice another big drop from March 2013-April 2013, when I had a major bowel obstruction resulting in an intestinal "cut-and-paste". I was then hospitalized for two weeks, learning how to eat and digest (again).

I began consistently hitting Hemoglobin levels in the "normal" range (highlighted in red) from May 2013 onward and have been vacillating between 12 (g/dl) - 13 (g/dl) since then.

This is a picture of wellness. This is improvement. This is living.

Death, Sex, and You: The Cancer Edition

"Not Today."

There may be times in life when you find yourself interacting with someone with a scary, perhaps even life-threatening illness. Maybe you meet them at work. In class. At a bar. Making small talk with tact can be difficult amongst all that is icky and emotional. How does one discuss awkward topics like cancer without being awkward? How does one discuss all that is depressing and debilitating? 

Some initial tips:

- Don't insinuate fault. Don't mention karma, "life teaches us lessons", or any other potentially blame-laying notions. 

-  There is a fine line between being light-hearted and being facetious. It is best to assume you are 1. not funny and 2. any inferences you make regarding life expectancy will be wrong and/or insulting. It is also best to refrain from trying to parlay an anticipated life expectancy into a one night stand because "life is short as you know, lolz, yolo".

Or how about we just avoid the topic of death altogether? No dead relatives, no asking about how long I have left, or how I think I would be as a ghost (though I will credit the individual who came up with that particularly precious bit of pillow talk with the most creative take to date on discussions of impending mortality). I know it is super tempting to dive straight into anticipated funeral arrangements when a person you encounter reveals (s)he has been stamped with the "Big C" (or other life-threateningly fun diseases), but how about we all collectively decide to hold back on the er, charm until at least the 3rd date. Or 10th date. Or never.

Re: the dead relative comment. Yes, it can be brought up with a certain level of finesse. Let us assume you, and any of your friends, coworkers, drinking buddies, etc do not have that level of finesse and therefore should avoid mentioning someone who died from the same disease/disease family the person you are speaking with has recently revealed they have. Some of you may find this a bit silly, or unnecessary to address but you would be surprised by how quickly an acquaintance can turn around and say "Hodgkin's Lymphoma? My aunt/grandmother/aging rock star had that. She's dead though..." when you make the mistake of mentioning you are ill.

And on the topic of illness, how does one indicate interest without being intrusive? Follow their lead. 

For many of those recently diagnosed, they are completely terrified and haven't the faintest idea what to expect. They may not be the best resource for specific disease-related information, as they are likely overwhelmed by all the new medical jargon they have yet to become fluent in. Ask lightly and let them tell you what they feel like telling you. This is not the time to be pedantic or preachy. If you have suggestions, provide them gently. Everyone has an anecdote about some treatment x or some supplement y that cured z disease. Try prefacing each suggestion with "I'm not sure if you've heard of this, but..." or  "I'm not sure this is something you'd be into but..." If you want to share something, make it accessible. Or better, send them the bottle/box/book with the understanding they may never use said product at their doctor's request or simply because they forgot.

Comments on changes in appearance or hair style should be entertained with caution. Really, all opinions except those of the unwaveringly positive or life-affirming sort should be kept to yourself.  Chemo (among other treatments and medications) does funky things to all things hair, skin, and body and your sick friend is most likely fully, if not hyper-aware of any/all minute changes their treatment has caused. Whenever you feel compelled to make facial or verbal expressions of disgust towards your friend's deteriorating physical state you can instead choose to not be a completely selfish, emotionally destructive human being and keep it to yourself.

As a friend, it is not your responsibility to enumerate all the ways getting sick can inhibit social, academic, or professional success. Hours of waiting room visits provide plenty of time for sick kids to examine every possible angle, every missed opportunity, every friend who no longer calls, every trip that requires too much energy, every scenario that could end in rejection simply because it has been revealed one has a less-than-stellar immune system. Refrain from asking leading questions such as:

"Who will want you if you're infertile?" 

"Why won't you work/exercise/go out/drink?" 

"Shouldn't you be married/promoted/back in school by now?" 

This may be difficult for the Type A among us to grasp, but you don't get to decide what your friend's limitations are. Or what is an acceptable career, life path, or timeline. Even if it may seem that control over circumstances no longer falls with your sick friend, it most certainly does not fall with you.

But the least welcome comment (in my opinion) is a prediction of failure. Perhaps you feel you the sick friend needs to be "brought back down to earth" with some friendly statistics, risk profiles, or mortality rates. They don't. And they especially don't need it from you, defeatist-masquerading-as-realist, non-medical-expert. Unless you have the spy capacity of the NSA or are a mind reader (in which case I'm impressed), it is safe to say you do not know what your sick friend knows or doesn't know about their treatment or potential quality of life.

"But what if I'm the god of death?"
All you need to know is:
not today.

(How to Grow) In-patient

"If the biopsy gets moved from Monday, someone is getting punched in the face."
"Well I'll be on my guard then."
He thinks I am kidding. I should be kidding.
I don't think I am kidding anymore.

I think it stems from a loss of patience. I had done well with patience; cultivated it, nurtured it, watered it enough to shelter me during the period of relative statis when I was shoving whatever scraps I could squeeze down my gullet without vomiting, melting down into the weakling with knobby knees that would ultimately suffer one blow too many and end up hospitalized. The tumors had come back. War had been waged and although I had home turf advance they had made the first strike: another bowel obstruction. Worse this time. 3 inch purple incision in my midsection worse. Iv nutrition worse.

But I had been improving. I became ravenous for the minor bits of praise tossed my way by the surgery team -- reminders of the normalcy of a linear progression, rewards for improvement, improvement stemming from following the rules. The sort of things that tend to fall far outside the bounds of oncology. I was doing well they said, each progress report marked with a diet upgrade, a reduction in pain meds, increased mobility, and the promise of a release.

But then they struck again, in the form of tiny lesions on my liver that had not been present the week before. Sort of terrifying, really. I did not think they had it in them. Fevers began, as they always do when shit hits the fan; soul-sucking harbingers of a worsening condition.
As I joked with my oncologist, at least with the surgery I should be able to drink enough to fend off dehydration from the fevers!
The little things, we always say. The little things.

I often feel like a log adrift at sea. Bobbing to and fro, knocked around by the occasional wave, consigned to suffer in the purgatory of watching everyone else powering their own course. I have but the strength to keep head above water: just buoyant enough to keep afloat. I worry for the day I become saturated enough to sink.

Generation "Y (Are You Here?)"

You can wrap up my idea of happiness and sprinkle it with powdered sugar.

(...and then give my future self diabetes? Candy-coat me, baby.)

It is fortunate my baseline for happiness is the ability to stuff my face with fried dough without the worry I will involuntarily throw it up. I'd like to thank San Sebastiano for having a feast day so perfectly timed, rolling every unhealthy Italian food I could want into my (almost) backyard during this period of able-to-chew-and-swallow. I'd also like to thank my potassium levels again, for their cooperation in getting me temporarily kicked off the trial long enough to be able to sneak away from the house for a few hours without (physical or mental) collapse. This must be what the kids who cut 8th period in high school felt like: some bliss, some adrenaline, slight touch of guilt.

Eating. What a joy! Being able to take large bites, knowing the digestion thing will just sort of "happen"...magic.

Anti-nausea medication -- what a whirl. Big ups to you too, my man.

I'm in a good mood. Mind is a-buzzing. Living it up while I can.

By living it up I mean my day-to-day included the casual blood test, because they forgot to check if I was pregnant during Monday's. 

The conversation went a little like this:
Me: Dude. I have one vein left. And it is still bruised from the past 3 blood tests.
Clinical Trial Nurse: LOL, fuck your veins!

During said blood test, the nurse gave my mother the low-down on her 22-year-old daughter who lies around all day and the stampede of 15-year-olds on welfare coming in with children and expensive shoes and all I could think was "Oh god this woman thinks I am some vicious combination of her hack daughter and every pregnant adolescent she's ever encountered." It is at such times I wish I had some sort of membership card, stamp, tattoo that signals to the world that I am not living in my parent's house by choice, omission, lack of job offer. Do they offer these things? And can I get it with the Penn crest? Something that implies "This person accomplishes shit occasionally. Also, she is totally not pregnant." (...as of last week's blood test.) 

But le sigh, there was no time for me to "accio" my degree, as indignant nurse was busy going off on the laziness of Gen Y (which she made sure to  clarify as "Why are you here?") I was fuming, which happens to look a lot like smiling and nodding.

Sometimes I wonder if this thing is just one big joke.

Drug Vacation

I've missed my brain.

I know, what a strange thing to miss. Surely it is always present, except during the occasional romantic fling in which it flees? For most yes, but mine had officially "left the building", as they say. I am uncloudy-ish for the first time in weeks. The strange thing is, I'm still on pain killers. Just (temporarily) off the study drug. Who knew how nice a drug vacation could be? Especially when it's potentially life-saving cancer treatment... but I'm happy, I am. I think I needed this. To reminded that I can in fact, compose sentences without drooling (it was getting weird) and stare at words for extended periods and have them make sense to me. So thank you, shoddy potassium levels, for giving me this required break from the clinical trial to pop candy-looking (not candy-tasting, sadly) potassium supplements. Compared to the study drug-oxy-vicodin combo, oxy-vicodin is a walk in the park. Like wow. You don't appreciate what you have until you're given the equivalent of an ACME mallet to the head in the form of a pill. yeesh.

So I suppose I should inform you that yes, I made it into the clinical trial. (that I was then "temporarily" taken off of. See Above.) I went to Ohio alone for 6 days and, with newfound nausea and poor appetite, (what a stellar combination!) force-fed myself whatever it is Midwesterners refer to as "food". Day 1 I attempted the cafeteria, only to discover it was in fact a Wendy's. It was at this point (and many others) I had to ask myself: is this real life? 

Dear god, it is. 

Anyway, so I go off my coffee/caffeine kick (suck it, doubters!) while in Ohio and developed a taste for apple juice. Yes, I traded in coffee for apple juice. 

...I was on drugs, okay?! Sheesh. 

I haven't fully recovered from the transition, that is, haven't been having much of any coffee mostly because there's no point in even pretending I'm going to be productive on the toxic combination of study drug-painkiller. I basically spend the days sleeping or counting the hours until I get to sleep. Or watching shitty TV. 

Also, I really like juice.

So I really just wanted to get in this tiny bit of writing before study drug starts back up again (potentially later today if EKG goes well) and makes me an actual dope. (Is panobinostat-lenalidomide dope? Meh.) If I can squeeze anything else out before the mallet falls, I'll send out another update.