Interstice

Today I finally got around to deleting my Facebook account entirely. I had previously removed as much personal information as I could from the site and taken the friends lists down from 300 to 50. It had been a great tool for keeping in touch with a core group of friends. It was convenient.

It was also scary. The site has been prompting me at least once a day in various clever ways for personal information. Where I worked. What my family members’ names were. Who my friends were and could I pretty please just upload my gmail contact list. The last straw was conflating my accounts security with relinquishing my cell phone number. When they didn’t get that, they guessed at it (and frighteningly enough, they guessed right).

I had to decide between the convenience of Facebook and being sold as some marketing profile. Between knowing an intimate level of detail about my friends without a lot of emailing and going to a site I’ve never been to before and having a chat window pop up saying, “Hello Christopher, how may we help you?” (1). In spite of guarantees of some sort of privacy, there’s just no way I can trust them. There’s so many ways my information was leaking from there and so many ephemeral knobs to adjust it, that the effort finally crossed the “is it worth it threshold”.

So, if you’d like to keep in touch, here I am. I’m also on G+ for now, twitter as cwallbass, and there’s email. My first name is Chris. I own the domain this site is hosted on. You can figure the rest out

Update 5/21/2013: Not proud of this, but the account has been reactivated to get some information out, and I’ve been largely treating it as “read only”. I’m not updating my status nearly as much, and only have one device paired with it.  I don’t like it, and I want to throw the whole thing out, but losing touch with my friends is a crappy deal – I’m sure that’s what FB is betting on.

(1) Before you think I am being tin foil hat here, I blew away my cookies and browser data, and went to the site from a different computer – no customization. Same clean up again, only with one log into Facebook: bingo! “Hello Christopher”.

For the last 25 years there has been a running “joke” between my old friends – I’d never live to see my 40th birthday. Part based on luck, part how I lived my life. Hearing it repeated this long added a sense of prophecy. Two unrelated cancers and losing two of my friends this year didn’t supress my fears. But, knock on wood, we’re 7 days from my 40th birthday. Every day feels like living on borrowed time.

That’s not glum. I’m going to embrace that idea. The theme for my 40th is things have survived and even thrived past their time. Past glory might be diminished, but what remains soldiers on. Here’s a quick run down of things I’m holding onto to remind myself of where I am now, where I was, the good memories and how lucky I am.

1. MiniDiscs. I found my minidisc player and have bought a couple more on ebay (in case my current one fails). The format was declared dead a long time ago, and Sony officially stopped making home decks last month. I know a few of those in the InterAccess crowd will fondly remember minidisc fever sweeping the tech pit around 1999-2001. I currently have a MZ-N600D which I’ve been using the heck out of, and discovering the music I was listening to nearly a decade ago. Coincidentally, this song is playing now. I listened to it over and over when my friend Paul passed away. It fits.
2. Fountain Pens. It’s almost been a decade since one of my best friends bought me a Rotring 600. My heart was broken when it got destroyed, but since then I have had several Lamy Safari pens. I love doodling and writing with them. They give me the pauses I need to slow down and think when I create, just like the minidisc makes me appreciate music instead of slamming it into ephemeral device.
3. Moleskine Paper Journals. See above. I love these things and have filled several with doodles and gibbering.
4. Alpha Juno 1. My first synth. I recently bought one on accident in ebay (I really didn’t think I’d win).  This week I’ll be writing music on it for fun and to throw into my birthday party playlist. True analog synthesis on the thing, rather than modeling like my other synths do.
5. Sega Dreamcast. They still kick ass. I am hoping to save up and get one. I especially loved playing games like Evolution, and Phantasy Star Online. I have a lot of good memories tied into mine, and remember selling my collection to my friend Myron, who passed away from cancer recently too.
6. Vintage/Old Toys/Figures. Zipper was awesome and got me a TRON lightcycle reissue. Mine is still in the box, and is one of the blue ones. I also got a great deal on a Zentradi mech. I remember the thing that got me excited to come home at the end of a school day being the hours they played Robotech and Voltron back to back.
7. Classical music. Or at least music that doesn’t require a computer or pitch correct. I’ve really been into a lot of the 60′s/70′s wall of sound / power pop stuff, as well as really old stuff like Tallis’ Spem in Alium. There’s always a place in my heart for music that requires live artillery. And yes mom, Rachmaninov has been in high rotation.

I’ve had a good 40 years. I have some regrets, to be honest. I look back and cringe at parts, but I won’t dwell. I’m glad to have things to look forward to, but, like the artifacts above it’s good to remember that I’ve been given a second chance. I should never throw away what makes me unique even if it is diminished, like my abilities as a musician (half deaf, can hardly play bass or sing etc.). I’m enjoying the reprise.

Now if you’ll excuse me I’m going to try and find some scratch-n-sniff stickers.

A month into 2013, and I’m getting my you-know-what together. 2013 is a big year for me – I beat cancer in 2012 (that was enough, thank you) – but this year I turn 40 and there was a lot more that I thought I would have done. This is my year to accomplish those things, because when you have an in-your-face reminder that you’re a meat bucket that breaks and will ultimately go back to being dirt, you get some motivation. Read the rest of this entry »

I finally decided to call it quits with Apple products. It’s been a long time coming. Out of some strange deference to Steve Jobs I waited until he’d been gone for a while to see if it wasn’t just disillusionment with post-Steve-ness. I’ve used Mac products since System 5, and grew up with Oregon Trail on a IIe. I’ve owned 21 Apple devices over the last 20 years. I used to be amazed by the quality of their product and their service.  It’s been on the edge of my mind I can’t ignore it – Apple is now just another crappy big corporation.

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I am, without question, pleased by my progress. I want to make sure that isn’t lost here. My symptoms continue to grow worse, but they are from the treatments not the cancer. What is mind bendingly awful about cancer is that it is so silent and insidious – worse than any horrid thing dreamed up in 50′s political sci-fi or the paranoid rantings of McCarthy. It just grows and screws you up and you don’t know until things fall off the rails.

Now there are days when it feels like the cure is akin to shooting yourself in the foot repeatedly until you’re healthy. I’ve lost hair. Food has no taste. Brushing my teeth is not pain free, and I have enough drugs and supplies required to navigate my day that I have two messenger bags full of crap. To reiterate: This isn’t complaining – this is just how things are. This is just what I do now, me and my shitty cancer, punching at each other in perpetuity until one of us wins.

By the way. I’m winning. I’m hot-diggity-dog-it-fuck-you-Frank winning. And today I found out that Frank was many.

First the nasopharynx  is such a weird place to get cancer in the first place. Difficult to see, feel or touch, the only time you probably really notice it is if you’re eating a Triscuit and sneeze. That spot that you can’t get the Triscuit out from in the between nose-throat limbo? Frank’s home town. There was a primary mass of about 3cm (1.5″ for us yanks) in addition to the lymph node we saw clocking in at 2cm once you discounted all the fluid buildup. But that wasn’t all. There were also lymph nodes behind the muscles on either side of my spine facing front that took a shine to cancer as well as one on the back of my septum. So, not counting mystery meat in my mediastinum (who we leave, for now) there were 5 sites in my head. Well, just under it anatomically. But let’s go back… there were 5 sites.

Based on today’s camera view, if you discounted the swelling, odd blood vessels,  and other radiation flotsam and jetsam, my doctor said he would have said that there was nothing there. Frank and his legion are not visible using gross anatomy (as in large – the view was still pretty gross). We are on track. And – there is an end date: my last radiation appointment is scheduled 7/11/2012. You can believe I have that marked on the calendar. Then – four more rounds of chemo to smash whatever else remains.

I am ecstatic.

I am sitting in the R building, waiting for my second appointment of the day. The results are… drumroll… they don’t know what kind of lymphoma Jack is.

That right. I have WTF cancer. That’s the crappy news.

The good news is, Jack is a slow bastard. He’s the Droopy of cancer. This is enough to get us back on track with treatment. Tomorrow I am on for chemotherapy and radiation. I have (!) six prescriptions to keep me from making the technicolor yawn (i.e. vomiting, aka worshiping the porcelain god).

Actually – fun contest: email me your favorite euphemism for vomiting, or put it in the Facebook comments.

Anyhow, the nasopharyngeal dealio (Frank) is the primary target. We deal with the rest later.

Breaking news of the f**k yeah variety: There are still question marks regarding the mass in the chest, and while there were a high number of lymphocytes found, no cancer was found. This is, as far as we know at this point, not a lymphoma. This may be what they are calling a reactive condition, in which my lymphatic system is busting ass to fight the cancer behind my nose. On the chance this is a lymphoma, it will react to the cisplatin. We will find out how the mass looks after chemo and follow it. If it is a lymphoma it will decrease in size or at least be held at bay by chemo.

Just one cancer. Chemo and radiation tomorrow.

I’m pretty blessed – I have at least four women to thank for being my mom. It’s not science fiction, but I think I have a pretty unique view of moms. I was adopted when I was three days old. My biological mom faced difficult decisions in a time when there were a lot of harsh and unwarranted assumptions about a woman in per position. She decided I should have a family who could provide me the best care. I admire that. My adoptive mom has similarly made difficult decisions about my care, and has been a rock for me. We talk all the time now and I still seek her out for guidance and comfort.

In the years between I’ve been “adopted” a couple of other times. In Ann Arbor, Nisi became my legal guardian for a brief time. I was living “alone” part of my senior year of high school pursuing an independent study. She expanded my mind in so many ways – exposing me to Dukes of Stratosphere, Robert Anton Wilson, Discordianism, and a chance to meet the author Robert Asprin at one of her house parties. Most recently it seems the Guzowski family has taken me on and Justine’s kindness and compassion has been overwhelming. Today I had dinner at their house, played with their grandson, had cake and coffee… I also fell asleep on the couch a few times. She snuck a kiss on my head in while I was out.

Nobody disputes that moms are awesome. What is really awesome is their infinite capability of compassion and selflessness. Anyone can be a mom, if they so choose, and when they do – look out

Thanks to all my moms, for making my life special.

Tonight I had to put Mercury to bed, and I am strangely upset by this. After seven years of continuous service, one of my favorite computers has finally failed and cannot be recovered. While I know there might be a dry eye left at this point (and if you’ve the heart to read on) I’ll try and explain why this means so much to me. Context is what gives meaning, and this little guy and I have been through a lot together.

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A phone call from a doctor on a Sunday morning, no matter how pleasant the doctor, is not typically the sort of thing you want. Today I found that although we don’t know much about Jack, there’s enough to be concerned.

Last week I had an interesting needle biopsy. There is a mass behind my breastbone whose apperance on an early cat scan caused this whole circus. We had thought it was benign – a thyroid, goiter, whatever. But after threading a needle into my neck around bone and pulling out a few cells we know a little bit more. That is, what we know is, “not clinically conclusive, but indicative of Lymphoma”. All cells found from the sample taken were lymph cells, and they do not belong.

This changes things.

The plan had been radiation and chemo, the first targeting Frank and the second any systemic outliers. I understand this may still be the ultimate plan, but the drugs and progression may change. To resolve that niggling inconclusively I get a surgical biopsy of whatever’s at my throat. While they’re at it, they may take a hack at Frank as well, just to get some cells and make sure he’s really who he’s said he is.

So, hello Jack. Now fuck off.

Tonight’s homework: Make a playlist of songs that I want to listen to before the treatment. There’s a chance permanent hearing loss of varying levels, and of all the news so far this is the worst. I knew it was a reality, but now I know it’s a reality.

I can’t understate this. Music has been my life. It brought my parents together. It’s what kept me alive in high school. It took me places I never dreamed of and has made able to experience beauty and feeling that I cannot understand without it. It is me.

The thought of losing one shred of it makes my blood boil. I refuse to let any of it go. “Arriving Somewhere, But Not Here”

Edit: Thank you, Beethoven, for this: “Concerto No. 3 in C Minor for Piano and Orchestra, Op. 37: II. Largo”  Lord knows, you had worse to deal with.