Wednesday, August 17, 2011

How I Am Doing & Other Thoughts

I get a lot of questions that go something like: "how are you doing?" "How are you holding up?" etc. These are always well-meant, but I believe these questions fall into 2 basic categories: rhetorical questions that don't need an answer, or polite inquiries that also are not expected to be answered. I know these are well-intended, but I am essentially holding up as as one might expect. Sometimes shitty, sometimes well. I know that polite society tells us that my response to this question should be "Good" and not to elaborate further. But, in case people are actually curious, here goes: On any given day, It is safe to assume that I am angry, scared, sad, resigned, terrified and scatterbrained.

Physically, I feel basically fine. I have some low-back pain that seems to be linked to the cancer, though the docs have determined that its nothing else worrisome. I have a painkiller prescription that covers up the pain quite nicely. And I get tired easily. This is because my immune system is trying to fight the cancer on its own. Otherwise, I feel close to 100% physically. When the Chemo starts, I will get progressively more tired. Right now there isn't any pain, other than the slight low back pain. Chemo itself won't cause any pain, though I may experience joint stiffness and won't sleep very well. My mind is as clear as its ever been, except for the fact that I am distracted. A severe illness can cause Post Traumatic Stress Disorder, and I think I probably have that going on as well.

I appreciate people calling me, I really do. One thing I will never get used to, though, is the Awkward Silence. Many will call me and then say little to nothing. I can tell that they are trying to find the Right Thing to Say, but the end result is that I feel even more alone, as searching for the Right Thing to Say frequently means that people Say Nothing At All.

If you choose to Say Something About It, it doesn't need to be finely worded, rehearsed, or worthy of historical texts. If we talk, we *don't* need to talk about the Condition at all. Not sure what to do but want to do something? Send me funny cartoons, Onion Articles, books and bands that you think I should check out, petitions that I can sign to get Minnesota to legalize medicinal marijuana, etc.

If you feel like calling me or writing to me, please do. I would of course love to hear from you. On that note, I have 2 requests, though:

a) That I not be expected to recant the entire Story So Far (I set up the blog partially to avoid having to tell the story over and over and over). Actually, I'd love to talk about almost anything *other* than the ongoing Cancer drama.

b) That you not take it personally if I don't call/write you back right away. I have easy days and hard days. If you catch me on a hard day, it may take until my next easy day before I can get back to you.

The Sickie Pariah

It seems counterintuitive, but the more serious the ailment, the less people call/write or want to talk to you. Reasons for this could be that they are trying to Find the Right Thing to Say, or that they are afraid that you will be a total buzzkill. People may believe that all I will want to talk about is my Condition. Or they may believe that it is somehow not okay to have fun. I spent this last weekend with a few friends and--despite the ominous news--many laughs were had. As often as possible, I try to find ways/excuses to amuse myself and get my mind off of this. I know that people are curious, but sometimes I want to be able to put the whole story on a shelf. This is part of the reason that I don't want to talk about it (or think about it) more than I have to.

Currently, I am experiencing a sudden loneliness, which became markedly more pronounced yesterday when I rolled out the really bad news. In an effort to Say the Right Thing, it seems that many have elected to Say Nothing At All. Believe me, the latter is worse. The only thing worse than feeling like you might not live to see your next birthday is feeling like only a small number would would notice if you weren't there.

I have already experienced the Pariah feeling, and it is fairly gut-wrenching. Ever been fired from a job? Ever met a former co-worker after the fact in a store and had an awkward conversation that basically goes: "Hey," followed by a long silence. How about when someone you meet knows a secret about you: maybe they're friends with your ex and you know that many stories have been told about you. They stand and have conversations with your friends but see you only in their peripheral vision. You can tell they're watching you, but not looking at you. Any of that sound familiar? Well, welcome to life with cancer. The difference is, these are your friends. Good friends, many of them. And it will happen overnight. Yet again, the quest to find the Right Thing to Say often results in awkward silence and even outright avoidance of the sick person. This makes the sick person feel responsible and guilty.

Perhaps--just perhaps--there are people out there that think Cancer is contagious. Sometimes this is the only conclusion I can come to to justify the sudden change in people's behavior.

If you're ever Not Sure What to Say, I welcome you to stare your frustration here. You are not alone. I have felt it myself with other people with severe illnesses.

p.s. Its always okay and call/write me and *tell me* that you Don't Know What to Say.


Nick said...

Hey Mike! Thanks for taking the time to clarify this. Yes, it is hard to know the Right Thing to Say, because we can't know how you're feeling at any given moment, and on one day gallows humor might be fine, the next it could be a crushing blow. Cancer has a gravitas that other conditions, like pneumonia, don't have - even though pneumonia can kill you too. People also don't seem to feel the need to talk about your pneumonia with you. Anyway, please keep blogging and hopefully that will reduce the awkward silent moments.

Cathy Crea said...

So, ummm.....

How 'bout them Twins, eh?

Right. Crap. Never mind.

There. I think I got the awkward bit out of my system. Though I must say, I am crap at small talk, and maybe everyone else who isn't saying anything is in the same boat. My therapist would say that it says more about them than you, blah blah blah, but that doesn't really help all that much when the depression hits, does it.


When you get a chemo schedule, would you be willing to post it? You shouldn't have to sit through any part of it alone if you don't want to. (And even if you do feel like being alone, then that might just be too bad, because it will be better for you to have company.) If nothing else, we can send extra positive thoughts your way.

nihilix said...

Hey Michael -

Good post, and thanks for laying out what's up on your side of the social interactions. I'm willing to cut through just about any long pause with some blather; my Irish coming out, I'd guess. (I took a busineses/personality trait type test and they said one of my strengths was 'blarney'. They called it something else, but that's what they said...)

So yup, this sucks. And I know it's talking about the Condition but does that change your attitude about rejoining World of Warcraft when the weather gets colder?

Hugs and shit!

Jen said...

Bravo! It's good to see some of your anger and frustration come out - I love you!!!

Deborah in MN said...

Hey, bro. I can identify with some of what you're experiencing. It does get tiring to explain your condition over and over and I sometimes just don't feel like talking about it. I know what you mean about good days and sucky days. I've just had a couple of days where the total of what I've been going thru (which includes my deep concern for you) reared up and whacked me in the face. I think I found my equilibrium again, for now, but I'm learning to listen to my body and give it the care it needs. It's hard, because I'm used to taking care of everybody else instead. I really want to be there for you, so it sucks that I have to have surgery the same day you start chemo, and I probably won't be up to keeping you company for a week or more. You have been in my prayers often and will continue to be even when I'm not up to picking up the phone or getting on the computer. I'm going to send you some tunes by way of Mom.

Anonymous said...

Sending up lots of healing energy & vibes for you. If you want to sit around and shoot the shit about books sometime on a good day, reach out. Also, if you need a chemo driving team, let us know. Remembern it takes the Village People to raise a child (or take care of a friend.) Lynn S-M

Anonymous said...

(Actually not Anonymous but Dad)

How clearly you think and how well put things into words that need to be said.

I may be the worst offender at supposing that I have to say something and not knowing what to say. Good. Now I know.

I like the idea of posting your chemo schedule.

T. said...

Nuthin' to add but a little more love.


Colleen said...

Just read the last few posts....well thats just awful news. So if I see or hear anything funny I'll send it on over. If you want a silly visual my Mom is cleaning dvds at my office and matching them up with their covers.

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