Submitted by TLHines on Mon, 06/11/2007 - 00:37.
Amazingly, I sleep pretty well my first night with lymphoma. Or what they think is lymphoma. Or what they tell me may not be lymphoma, but is more likely to be lymphoma than not.
Yes, these are the kinds of things that get thrown around in my first appointment with a hematologist/oncologist. But we'll get to that in a minute.
Before that visit, it's important to note that I do anything a red-blooded American with a PowerBook and a broadband connection would do in my case: I go to Google and type in "lymphoma survival rates." This is something I know I should not do--the internet (or Internet, if you want to give it that much credit) isn't exactly a repository of trustworthy information--and yet, something I innately know I must do, as well.
In an odd way, it makes me identify with Eve, who knows she should not eat fruit from the forbidden tree, but at the same time knows tht she must.
And so I bite into my poison apple.
One of the first hits tells me the overall survival rate for Hodgkins Lymphoma is about 86%. Okay. Well, not quite in the 99.99% range I'd want, but 86% isn't too bad. The same source also tells me the five-year survival rate for Non-Hodgkins Lymphomas is about 59%.
Please, God, I say at my computer, let me have Hodgkins Lymphoma. Then, in an odd moment of clarity, I realize what I'm doing. A mere 48 hours ago, I never would have believed I'd be sitting at my computer, praying I have Hodgkins Lymphoma. And yet, here I am. In the meantime, I'm constantly thinking about the blood tests and chest CT scan I was rushed into the previous day; I'm scared, very scared, that some quick-growing, incurable form of lymphoma has spread throughout my whole boday. I picture sitting down with the oncologist in a few hours and getting the "I'm sorry, there's nothing we can do" spiel.
So, when my oncologist appointment rolls around, I'm forced to take a roughly 100-question test gauging everything from my sleeping habits to my social habits. (Have you been coughing a lot in the last week? Have you cried a lot in the last week? Have you wished you were dead in the past week?) After finishing this test, my wife and I are whisked away to meet with a patient care coordinator, for some reason I still don't fully understand. I remember she says she can help research ways to get financial support for drugs and treatments, if that's needed. It's not needed, but it's nice to know. I guess.
Overall, by the time I actually walk into my meeting with the oncologist, I have to be honest: they've done a pretty good job of making me feel miserable. And I don't even know, for sure, that I have lymphoma yet.
The oncologist is pleasant enough, but not overly helpful. He says my chest scan and blood work both look normal. That lets me breathe my first sigh of relief since walking into this place. (Did I mention the person who I could hear hacking up a lung while I was sitting in the lobby taking the "Have you felt like you'd rather be dead?" test? It was a nice added touch. Someday soon, I told myself, you'll be the one in the back coughing up blood, scaring some first-time patient out in the lobby area. I've an active and fertile imagination, I freely admit, but this place has given me very good ground in which to plant thoughts.)
The oncologist allows that it might not be lymphoma. But then he goes through the list of other things it might be, and tells me why it probably isn't any of those. So in the end, it probably is lymphoma. I ask about Hodgkins and Non-Hodgkins, and he says it's most likely Non-Hodgkins. Hodgkins would usually show up in the chest rather than the mesentary region. (See? I'm already learning. I know the "mesentary region" is one of the main lymph node regions in my body. This particular region is the one that has betrayed me.)
Okay. Non-Hodgkins. That 59% survival figure for five years flashes through my mind again. That means, to my mind, I have a 41% chance I won't see my daughter hit her 14th birthday. This thought hurts more than anything else has so far.
Of course, at this point, I haven't really sat down to think about statistics--I haven't really processed the differences between mean and median yet--but it's early. It's only my second day with lymphoma. Maybe.
As the oncologist says when he's on the phone with the surgeon who will perform my biopsy next week, "The matrix for this is: lymphoma, lymphoma, lymphoma, lymphoma, something else." These are his exact words. I'm not sure what they mean, but I note he says "lymphoma" four times and "something else" once.
This is a Friday, so I'll have to live with the thought of having lymphoma-lymphoma-lymphoma-lymphoma-something else all weekend..
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