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!!! :