Archive for: February, 2011

Get up offa that thing!

Feb 24 2011 Published by under Uncategorized

I was just thinking that it's been almost three months since I got diagnosed after a trip to fucking New Jersey, and while I'm not quite where I was hoping to be in terms of treatment, I've made some progress. While the first round of chemo did a good job in destroying a good chunk of my lymphoma, it also really wiped out my immune system and made me very anemic for weeks. My immune system seems to be finally recovering but I'm still waiting for my red blood cells to wake up. As a result I've been spending a lot of time at the outpatient clinic having all sorts of exotic drugs and blood infused and transfused into me, with variable results. Also as a result I've started to run into the same people coming in for treatment over and over again, to the point that I feel that I know them. We all sit in our easy chairs in little three-sided rooms, with I/V drips next to us. Volunteers come by offering us drinks, snacks and foot massages. We're even visited by "therapy dogs". Almost nobody watches the little TVs in each of the rooms. Some people read or take advantage of the wireless connection. Some are older, some younger, some come alone, some bring their whole family, some sleep the whole time. Some feel better than others, some look like they're going right back to work when they're done. Some are really dressed-up, others are in more comfy clothes. Yet nobody talks to each other. I usually nod knowingly if I cross paths with someone I recognize, knowing that I would like to ask them a million questions, but never say anything. After all we are all in a similar boat and would have so much to say to each other. I feel that especially keenly with people that seem to be about my own age. I'd like to know how they are coping and what they've learned, and I'd like to share some of my insights with them. I know, there are web forums and support groups and shit like that, but it's not the same, those things are too public.

Often, well-meaning people will tell me to "keep up the good fight" or "stay positive". But they have no idea. If this is a fight, then who do I punch? NYT columnist Dana Jennings put it more eloquently when he points out that, how can this be a battle when the patient is the actual battleground? I'm not fighting anyone, if anything it is frustrating to feel so passive during this whole thing, taking in the collateral damage. I also agree with him that this is more like a long, dark journey through the heart of Mordor, than an actual fight. People also tell you to stay positive. But this is sometimes hard to do, and while I see the benefit of this (sanity), sometimes I feel like if I want to feel negative, that's my fucking way of coping with all of this. There's even no evidence that feeling positive improves one's outcome in disease. I think there's a place and time for feeling both ways, and when and where that happens is my prerogative. And I know that most, if not all, of those people sitting in that room know this well.

But we don't talk to each other. Maybe out of not wanting to be inappropriate, or saying the wrong thing. I mean, how do you start a conversation about this? Maybe the other person is not feeling well and you don't want to bother them. Maybe standing there with a fucking I-V pole is just too awkward a way to introduce yourselves. Maybe we are all just sick and tired of the whole thing. I don't know, maybe just that knowing glance is enough.

Or maybe... we should just follow James Brown's advice and "Get up offa that thing, and dance 'till you feel better!"  I'll try that next. Haaah!!! :

9 responses so far

Mix-ups

Feb 14 2011 Published by under Uncategorized

My daughter returns, tired and sugared up, from celebrating her seventh birthday party. Bags full of birthday presents in hand. Before I can get a pad and pencil, a flurry of ribbons, wrapping paper, presents and birthday cards are flying through the living room. Now we don't know who we should be thanking for the Barbie and who for the science kit...

7 responses so far

The Portal

Feb 10 2011 Published by under Uncategorized

I've been starting to get a lot more work done from home as I've started to feel a little better. However communicating via email and phone with lab peeps started to make me feel a little disengaged. One of my postdocs suggested using Skype to talk to people, but I had resisted since my previous experience with Skype was a few years ago when I was using it to video chat with my mom in Mexico or for the kids to see their cousins in other cites. The problem was that the video was always choppy so you got to see updates about once every two seconds, the sound echoed, was disembodied-like, and it would often crash. Plus the kids would always fight to get in front of the camera leading to screaming, punching and crying. It was never a pleasant experience. A perfect example of technology getting in the way. So I said fuck it.

But my postdoc insisted, so I updated my version and asked the lab folks to install it in one of the centrally located computers in the lab. I have to say that the software is much improved. Whenever I need to talk to someone in the lab, I just call in (apparently the ringtone is set to some very loud Arabic pop music) and whoever is nearby answers. The people in the lab call it "The Portal". And it's nice, because I can really have a regular conversation with people in the lab. Normally I used to drop by the lab to see what's everyone was doing, and I can do that now with people lining up to chat about their projects or whatever. I also stay logged in when I'm online so if anyone needs to "drop by" to talk they can. I can also have regular meetings to share and discuss data. Lab folks have started to make fun of my different locations, since I'm always sitting in a different sofa or easy chair at home working on my laptop, and I'm beginning to feel a little bit like the Bond villain Blofeld, transmitting orders sitting in his leather chair from some hidden volcano hideout. All I need is to have a white Persian cat on my lap to gently stroke while I plot my world domination. It's definitely nice to be to some degree part of the daily banter and life of the lab again, even if it's just through the portal. Plus I can pop in at random times to see who's working and who's goofing off.

Does anybody use similar software to teleconference? Maybe something where you can share a slide presentation or a computer screen while retaining the video chat. Skype I think works great, but I'm curious what else is out there. Maybe a 3D superportal?

Oh, can I borrow someone's cat?

Supervising my lab from my secret hideaway...

10 responses so far

Choose your own adventure #478: Lab Fraud!

Feb 09 2011 Published by under Uncategorized

The NIH's Office of Research Integrity has recently released what can only be described as a "choose your own adventure" interactive tutorial dealing with research misconduct. In the interactive video, scientific fraud is committed in a new PI's lab. Who's fault is it? The grad student? The stressed-out postdoc, the distant-from-the-lab PI or the research integrity officer? You can play any of the characters and maybe... save the lab! Sounds hokey at first, but its a good way to explore these issues with your lab.

Check it out here!

3 responses so far