Thursday, September 22, 2011

Apology; also: No Apology

I appreciate deeply all the comments I received the other day. I was at a very low point and am feeling substantially better today. I feel that there is a Minnesotan-ness (those who live here are accustomed to the stoic Swedishness that pervades the culture statewide) to pretend that it is all fine and to push it down inside, to pretend that its all fine. Some may think I'm a baby for admitting my pain and sharing it, and it is true that many have endured more with less complaining. I choose to be transparent in my feelings from day to day and I can tell that this makes some uncomfortable. As one pointed out: I am a private person and I have chosen the (perhaps unfortunate) path of living a fishbowl existence. I do make this blog public so that people who know me and care about me can follow along as they wish. I'll have bad days and good days, and it may be uncomfortable to read. I have many times decided (and undecided) to make all of this private for me only, but then I know that for many it is a source of information.

My comments last time, written as I mentioned in the space of a few minutes, made mention of the fact that I was feeling abandoned or unappreciated, and for that I do apologize. I am prone to hyperbole and I do have many who check in on me in a variety of ways. My intention, believe it or not, was *not* to make people feel guilty, but to show what I was feeling at that moment. At that precise moment I was feeling lonely and it was one of those 10 minute periods where a phone call or email would have been just the thing. I *do* get them, but I was feeling needy. So yeah: I was reacting and lashing out. I do appreciate y'all, truly.

It still does make me uncomfortable that there are people that I do not know (and people that I *do* know but am not currently on speaking terms with) who check in. I have decided that, for the benefit of those that know me, I will continue to keep this an open discussion. If you're uncomfortable with the things I say or they seem too negative, check back in in a week or two and see if my mood has improved. Best bet is to catch me on a chemo off-week for the laughs.


Anyone who has been diagnosed with depression or any sort of similar chemical imbalance will appreciate that the brain is a filter through which all is interpreted. If your arm hurts, we can step away from it. If your brain isn't working right (for whatever reason, in my case because of depression, pain and an excess of poisonous chemo drugs that affect me from head to toe) you're not aware that it isn't working right. Or, in my case, I was aware that it wasn't working right, but couldn't quite stop it.

I get chemo on Mondays, for two weeks in a row, and then have a week off. The drugs flood my system and make my skin a sickly greenish yellow color. It feels a little like food poisoning: your entire body is just... off. Not quite right. It's hard to explain. It's like your own body has been replaced with a loaner that doesn't quite fit right and all the parts are still adjusting. The immune system kicks in and fights the chemo (and the cancer), which makes a person tired and generally No Fun to Be Around. So its an odd sort of sick. It sucks, and then it gets better a few days later. As of today I have 11 days off until the next treatment so I will be feeling much better day by day.

A note about the pain

I have talked about the pain off and on, but I don't know if I've ever (or often enough) defined what I meant. Partially, it just kinda hurts all over. Like I fell down some stairs a week or two ago. Everything is a bit sore. But the specific pain (and something that I didn't experience with last year's chemo) is the damned persistent back pain, partially so annoying because no one really seems to know what is causing it. Everyone's best guess -- and this is after talking to a neurologist and 3 different types of cancer docs at the Mayo clinic -- is that the tumor in my pelvic wall is somehow pushing against a nerve. Or something. Yeah, that's what the best minds on the planet came up with. Regardless, this hypothesis seems to be confirmed at least somewhat by the flare up in pain that I experience when I get chemo. Basically, I like to think that the chemo is poking the tumor with a stick and the tumor doesn't like it. Its nice to think that there is a battle going on on my behalf that might be going my way, but not-nice that it's going on in my body. So the tumor flares up and I start downing the funtime pills, and then I get sleepy and useless and annoyed that I can't accomplish anything (like driving, or writing, or work, or school) because my head is stuffed with cotton balls and vinegar. And so I get pissed, and I blog about it. I agree that it it's no fun to hear about someone else's pain, especially when there's literally nothing that anyone can do about it. Worse yet: this is a pain that is *caused* by a $6,000 treatment two Mondays out of 3. Yep, my insurance company is paying them to make me hurt, and then paying to make me *not* hurt, via all of the prescription drugs. It is all for the greater good, and I'm sure there's some lesson to be learned about falling down a few times before you succeed, or something. I want to get the cancer to a point where it is as gone as its going to be, and that means I need to walk through a little fire, so be it. Today, I am strong enough. No guarantees that I'll feel the same positivity in a week or two, but I should come back around again.

2 down and 4 to go

This is the end of round two, and its almost unimaginable that I'll have to do 4 more of these things, or another 12 weeks. Basically, I need to find something to occupy my mind -- stat-- before it turns to jelly. I've been working on a novel and have started another long writing project, and hopefully I'll be able to focus on those. The novel is a bigger undertaking that is practical at this point (I started it before the diagnosis) with complex plotting, pacing and world-building twists and turns that I just don't have the clear head to master, right now. I do want to get back into that world, but I'd like to do it at a time when I can do it justice, and also at a time when the characters can be a little more positive. The last time I sat down to work on it, they all got in a nasty argument. So -- for me anyhow -- the writing that I produce is heavily influenced by my own mood. It's still a solitary activity, though, so I do need to find more to keep me busy.

Keeping busy and a Request

Related to the above, Jen suggested the other day (brilliantly) that I find freelance design work. Its a great idea. I did that professionally for 10 years or more before deciding to become a school teacher as my second career. I still enjoy the design, I just don't feel as fulfilled by it as I do by teaching. So, if you know of anyone who is actively looking for a freelance (piecework, offsite) print designer -- or freelance writing work, for that matter -- feel free to send their contact info my way. I have all the latest and greatest design software and hardware and I still keep my hand in for design projects for the band and for a few friends.

See: that's a positive thing that people can focus on, right? I *am* trying.


Deborah in MN said...

that's a great idea! If I hear of any opportunities I will mention you. What would you think of doing pro bono work for non-profits you believe in and want to support? It would be a networking opportunity that might lead to a paying job, but even if it didn't, it might give you something that makes you feel like you're contributing to your corner of the world.

Jen said...

No comment - just testing something. I am glad you are feeling better though - love you much - JL

lsikora said...

I'm doing a test like Jen, one 2, me as well....I'm glad you're feeling better, too, Michael!


Chris said...

Hey, Glad you're feeling better. Good luck with the writing. I've enjoyed your work since Mr B.'s class back in the day.

Eclector2 said...

I hope you do keep the blog open and painfully honest. Sometimes it is hard to read but I want to/need to know where you are at.

Bless Jen, she is such a smart lady. I like the graphic design idea. I also agree with Deb that working for non-profits could be satisfying.

I liked designing Jen's bead necklace with you and would welcome additional jewelry design ideas to include in my Fall Collection. :)

Love, Mom

TootsNYC said...

You wrote: "I feel that there is a Minnesotan-ness (those who live here are accustomed to the stoic Swedishness that pervades the culture statewide) to pretend that it is all fine and to push it down inside, to pretend that its all fine."

I think that more people than Minnesotans think this way.

Your point about the brain being a filter that processes everything, and that you can't step away from it, and that it's possible to know that the filter is "off" but not be able to do anything about that--that really resonated with me.

You've identified a pattern--capitalize on it! Plan your activities based on what your mood will be, how strong or pained you will feel, and what you need in each of those situations.

RachaelHD said...

Have I mentioned how awesome I think Jen is?


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