The Crying Machine

Sorry for the delay, I've been feeling pretty raw lately...

2007 - We really loved our new apartment. The old apartment windows faced west and north, so we didn't get any sun until late afternoon. The new one had windows facing south and west, so we had full on sunshine all day long. It was quite a difference let me tell you! I could have lived there happily for several more years were it not for the management.

Our landlord co-owned the building with his sister - the lawyer, and early in the year she forced him out and took sole ownership of the building. She had a low opinion of her tenants (she thought we were all stupid for renting instead of buying houses) and the management had proved themselves to be slumlords. When all this went down, we had four vacant apartments. Normally my phone would be ringing off the hook with people wanting to come look at them but this time it wasn't. I didn't get it. I had cleaned and painted them, except for replacing the carpet in two of the units they were ready to go. At first I thought the management was fielding the calls, but no, that wasn't it. Every day I saw a truck arrive from the company and a woman would enter the building and be there for hours, but I didn't see or hear anyone coming to look at any of the units. One day I saw her going into one of the vacant units and after she left I peaked inside and saw a bunch of cleaning stuff. What the hell? The apartment was already clean, painted and I knew for a fact the carpet had been steam cleaned, so what was she doing in there? This went on for weeks. She'd arrive, enter the same apartment and after several hours she'd leave. Just on a hunch, I entered after she left one day and 'moved' some of her supplies. I hung one of her rubber gloves over the edge of the bucket they were sitting in and placed a can of cleaning spray on the back of the toilet...then I waited for her to come back. When she came and went the next day I peaked in there again and saw everything was just as I had left it. When she showed up again the day after that, I peaked in the window of the apartment she was supposedly cleaning (it was the ground floor and the blinds were open) and saw her stretched out on the floor napping. Nice. I found out (from our old landlord) that she was the daughter of the owner of the management company. Ah nepotism. At this point I decided I didn't care if the vacant units were rented and I started doing the minimum amount of work around the building. Crappy, I know - but if they didn't care, frankly neither did I.

Normally I would have been suffering the winter blahs, but our new place was so sunny I was actually giddy. I received an mp3 player for Christmas and discovered that most of my music library was showing up on it as 'track01' 'track02' 'track03' etc. Not good. So I used my free time sitting at my computer fixing it. I had over 4000 songs on my pc, so this was going to be a chore. I found a program that claimed it could fix it automatically, but it actually made it worse and mislabeled a LOT of songs. Over a thousand of them actually. Yikes! It made a complete mess of my library and to fix it I had to sit there for hours on end wearing head phones and listening to (at least the beginning of) each and every track so I could fix it manually. I should have done that from the get go. While our friends were hanging out visiting, I was sitting there scowling at my computer and listening to the first ten seconds of every song I had. If they ever bring back "Name That Tune" I'll go on it and win big.

The purple haired girls birthday is in February and my friend the Dungeon master wanted to do something special for her. He had made reservations for them at their favorite restaurant and he bought a suit, which he had tailored to fit. I suggested that maybe he should top the night off with a romantic hotel room so they could have some privacy after dinner. He thought it was a good idea and I set about trying to find him a nice room for the night. After much searching around I found him a room near the restaurant that featured a heart shaped hot tub. The lady I spoke to on the phone said it was $250 a night for the romance package and the room came with champagne and strawberries and continental breakfast in the morning. Perfect! Expensive (I think) but perfect! So I told the Dungeon master the details and he went and reserved the room. The big night arrives and I play chauffeur for a little bit so Dungeon master can get a haircut and pick up his room key. The room looked great and I noted I could see our apartment building from the window. So with the preparations made we went back to the house to fetch the Purple haired girl. As soon as she was ready I dropped them off at the restaurant and went home. Later we conducted a test to see if our new flashlight was visible from the hotel and vice versa. It was. Big time. We had a flashlight that goes supernova. I found out the next day though that all had not gone as planned. It turned out that the water in the hot tub would not get hot and the hotel did not deliver on the strawberries or the breakfast, though they did bring up the champagne. The worst was in the morning when construction noise in the building woke them early and they found out the water was shut off. There wasn't even any coffee. And this was supposed to be a romantic room worth $250 a night. There's more but yeah you get the idea. I felt bad and suggested an angry letter and refund was in order. The Purple haired girl agreed and wrote a relatively meek letter listing all the things that weren't right. I took that and sent it to my sweetie's mom who has a legendary poison pen. She revised Purple haired girls letter and sent it back to her. Purple haired girl made few changes to the revision except to correct the timeline and mailed it off to the CEO, the hotel manager, and a few others. In the end, the manager from the hotel called and spent 15 minutes apologizing to the Dungeon master. He also gave them a full refund. Ahhh. The power of an angry letter.

Sometime that spring, my sweetie learned that Steve Vai was coming in concert. He and former roommate #2 were planning to go and he asked me if I wanted to come along. Nope. Don't get me wrong, I love - fucking LOVE - Steve Vai, but I was having some health problems and didn't want him to pony up the dough for a ticket that I might not feel well enough to use. He said 'no worries - if you don't end up going, the Grease Monkey can use the ticket' but I politely declined. I didn't want the guy to get excited about going only to find out that he couldn't because I was going, and since the concert was months in the future we couldn't be sure of his schedule or if I would be up to it. So my sweetie went to Minneapolis and spent two days camped out on the sidewalk in front of the ticket booth at the State Theater. I was afraid he was going to get mugged but he didn't. They wanted front row seats and he got them.

Meanwhile my health problem was worsening. I had endometriosis and it had been getting progressively more painful with each passing year. It was bad enough that I was completely useless when my monthly cycle rolled around. All I could do was lay in bed with a heating pad and wait for it to be over - and by that I mean I was wishing for death. Literally. No amount of pain reliever was helping anymore, I'd just lay there and cry. The treatment for this is usually birth control pills but I was over 30 and a smoker so the doctor wouldn't prescribe them. One day I just couldn't take it anymore and I decided it was finally time for surgery. The only way to end it permanently was a hysterectomy - and it's not like I was planning to have kids anyway, so I called the doctor and set it up. When the date finally arrived (one more agonizing cycle later) my sweetie accompanied me to the hospital. It was going to be Laparoscopic surgery, and since I hate hospitals I asked the doctor if I could go home after it like I did when I had my tubes tied. He said I could, but I wouldn't want to. "Don't be so sure!" I told him and asked him to make sure the nurses knew I could bail when I was done.

I remember sitting in the waiting area, hooked up to an IV and wearing these ridiculously uncomfortable compression stockings trying to chat casually with my mom and my sweetie while I waited for them to fetch me. I'd had surgery before but for some reason this time I was scared. Really scared. But I was putting on a brave front and cracking jokes with them and the nurses. When they finally walked me back to surgery and I hopped up on the table, I jokingly told them to work fast - I wanted to be home in time to watch LOST. They had a good laugh at that, and then they knocked me out.

The next thing I remember was coming to while being wheeled through the hospital on a gurney. It was all over - I was sitting up and barfing my brains out into a bag they had apparently given me as they wheeled me to my room. Through the haze I saw my sweetie looking alarmed and jumping to his feet when we rolled past. They put me in a bed and I immediately passed out again. I spent the next several hours waking up, vomiting and passing out again, and the whole time my sweetie was sitting next to my bed. I couldn't stay awake and I couldn't stay asleep. They had these weird booties on my feet that every 15 minutes or so would start humming loudly and pump full of air like a blood pressure cuff and that would wake me up. Then another wave of nausea would hit me and I'd barf some more and pass out again. I also had a nurse who was coming in every half hour or so to check my blood pressure. Finally the haze was lifting just enough that when the nurse came back in I told her I wanted to leave. She just laughed at me and shook her head "no". "Not yet" she said. She came back with food that I couldn't keep down and told my sweetie he should just go home. "Nothin' doing" he said, "She's pretty firm on wanting to leave and I'm going to be here to drive her when she gets the ok". God I love that man! The next time she came in I told her I needed to use the bathroom. She looked at the side of the bed and nonchalantly informed me I was going to the bathroom. I remember looking at her like she was insane - I had to pee so fucking bad! What was she talking about?! It was then that I discovered the catheter. UGH!!!! What the hell?! No one had said anything about that before hand and I didn't have one when I got my tubes tied - so why now? I snarled at her "Is there any reason I can't go on the toilet?" "They don't want you moving around yet" she replied and then she left again. I looked at my sweetie and said "Please. Get me out of here." He said he'd work on it and then I passed out again.

He woke me up when LOST came on - "Sweetie? LOST is on, you're missing it..." I tried to focus on the TV and managed to stay awake just long enough to see Charlie get an arrow through his neck. "Oh shiiii...." and I was out again. I woke again after the show was over - and now I was thoroughly pissed off. Between the nurse and those stupid booties I wasn't getting any sleep and I was pretty sure that had I been allowed to leave when I wanted to I would have been recovered enough to be awake for my show. I angrily managed to kick one of the booties off and my sweetie helped me out by removing the other one. I still felt like I needed to go to the bathroom. I wanted these fucking tubes out of me and I wanted to go home. NOW. When the nurse came back yet again she wanted to put the booties back on me and I gave her an earful. My sweetie backed me up. She finally decided I could have the catheter removed and allowed me to shuffle into the bathroom and then back to the bed. She wasn't going to ok me leaving though. So my sweetie went to work on her for me, convincing her that I would be more comfortable (and happier) at home. She told him I needed to walk a bit before she could release me, and they got me out of bed and walked me around the halls for a little bit. I did the walking bit quickly enough that it must have convinced her because the next I knew, she was taking out the IV and did an ultra sound on me. Then she reluctantly gave him a bunch of instructions and my bag of clothes and made me sign the release forms. They gave me a few more barf bags for the ride home and wheeled me down to the door to our car.

That poor dude had been sitting next to my bed since 9am that morning and it was now almost midnight and I was barfing into a bag the whole ride home. When we finally got there I crawled up the stairs and immediately flopped onto my bed. AHHHH! Finally! I slept for a solid 12 hours. When I woke up, he filled me in on what I'd missed on LOST (Charlie wasn't really dead), fixed me some soup and helped me take a shower. I was still groggy but finally starting to feel human again. It was well worth it though when the next month came and went without me being in pain, and then another and another. Yeah, I should have done it much sooner. Talking about it later, he said that he personally never wanted to have a catheter - it looked like it was pretty damn uncomfortable. I agreed. It was miserable and it did nothing to alleviate that 'gotta go' feeling whatsoever...

In May the St. Paul Cathedral celebrated its 100th anniversary and they lit it up at night for the occasion. This had all the photographers - amateur and professional - out in droves to take photos of it, and I was there too. I'm not Catholic, but it really is a beautiful Gothic style building. There was so many people that there was no place to park. Fortunately my sweetie had come along and I had him drop me off and circle around while I took as many pictures as I could before he came back. I got a few really nice ones - couldn't have pulled it off without him.

In August, on the day before my sweeties birthday, the I35W bridge in Minneapolis collapsed killing 13 people and injuring 145. A far cry from the 9-11 tragedy but it was awful nonetheless. I have friends who live near there and others who drove over that bridge regularly, shit I used to drive over it daily! Watching the news coverage of the wreckage I just hoped and prayed that no one I knew was on it at the time. We were fortunate in that respect, but to this day I still feel horrible for the people who were injured or lost loved ones on it. For a long time we couldn't drive over or under a bridge without cringing. I still can't...

September finally arrived and with it, Steve Vai. My sweetie had been chomping at the bit waiting for that concert date to arrive, and I was regretting not having him get me a ticket. Ah well. I told my sweetie to have fun and that I wanted to hear all about it when he got home. A few hours later he came through the door walking on air and just grinning from ear to ear! "How was it?" I asked. It turned out that Steve had decided to film that concert for a DVD, and my sweetie (and former roommate #2) being in the front row were likely going to be very visible in it. Not only that, but my sweetie got a guitar pick! During "The Crying Machine" Steve had walked up to the edge of the stage, bent down in front of my sweetie and pointed to the neck of his guitar allowing him to grab a pick off of "Flo"! Fucking sweet! Talking about 100mph he gave me the blow by blow of the whole show and we made plans to buy the DVD as soon as it came out. I'm pretty sure it was one of the greatest moments of his life - thanks for that Steve!

In October we did the usual Halloween at the Gamers house and the Purple haired girl joined the cast of characters haunting his yard which was bigger and more elaborate than the year before. By November, we were all tired of the shenanigans with our management company. Since the Dungeon master and the Purple haired girl were planning to get married and start a family, a studio apartment wasn't going to cut it. They decided to start looking for a house to buy, preferably in a nicer neighborhood, and they wanted it to be a duplex so they could bring me and my sweetie with. I helped out by going through all the reality ads to find one in our neighborhood of choice, and found four of them in their price range. They had their realtor set up the showings and we (me, sweetie and the Dungeon master) went off to have a look at them. Since the Purple haired girl had to work, I brought my camera along so she could see them when she got home. The first three that we looked at all had major flaws - weird rooms, no closets, a fire department across the street, current residents who hoped they could stay after the house was sold... but number four was beautiful and completely empty! I took pictures until my batteries went dead and showed them to the Purple haired girl when she got home. We went back for a second look at number four and they decided to make an offer which was accepted.

Now all we had to do was give our notice and move out - and the management company was not happy about that at all! Now instead of four vacancies, they were going to have eight (Punch and Judy had also bailed out) - and there was only eleven units in the building. Apparently the land lady who thought we were 'stupid' for being renters was pissed off that we were not going to be renting from her any longer. We didn't care. We got busy packing our stuff and we were moving out on New Years Eve. You'd think it would be hard to find people to help you move on New Year's but we had a small army of friends to help us move it all. It was quite a production - we emptied three apartments in two truckloads and were done just after midnight. It was exhausting and we all felt like we'd been beat to hell, but we were out of there and our friends were now our landlords. We couldn't have been happier. We were now living in a beautiful house in a decent neighborhood - things were looking up.

Medicated goo

Meanwhile back in 2010...

My sweetie had begun receiving daily radiation treatments for the tumor in his lung. Pretty quick and easy...it was not unlike getting an x-ray. Every day we'd show up at 9am and wait our turn. We'd go into the back and he'd strip off his jacket and shirt and hop up on the table. I'd hang out and watch while the techs got him lined up properly and inserted the lead shield that would direct the beam of radiation, then follow them out of the room to watch on a monitor as he received his treatment. In and out. It really only took a minute.

He was scheduled to start getting his chemo at the end of the first week of radiation, but he had to meet with his new oncologist first. Enter his mom... She decided that she wanted to meet the oncologist and was going to come to that appointment, and she did. We arrived for the appointment and discovered she was already there waiting for us, notebook at the ready. We got his radiation out of the way and then went to sit in the lobby where he had some new forms to fill out while waiting. I remember my sweetie sitting there trying to fill out the paperwork while his mom kept giving me sad looks and fussing with his hair. I was giving her the silent treatment. I did not want her to be there, she was fouling the atmosphere with her negative 'this is all hopeless' attitude.

Body language speaks volumes and my sweetie was increasingly leaning away from her and toward me as he struggled through the forms while she continued stroking his hair. Finally he had enough. "Mom! I don't think I care about my hair as much as you seem too" he said, batting her hand away. She immediately stopped her fawning and asserted that she did in fact care about more than his hair - but I didn't really believe her. I hadn't had a single conversation with her since January that didn't include her mentioning his hair and how awful it would be if it fell out. For my part I'd told him before he even started getting treated that while I also thought he had the prettiest hair ever, it really wasn't the most important thing in the world to me and I'd still love him til the end of time even if he was bald.

Shortly after that, my sweetie was called back to meet the doctor and discuss his chemotherapy treatments. He, his mom and I were now sitting in a small exam room listening to the doctor talk and she was again taking copious notes. I remember having a feeling of deja vu. She was asking questions about the treatment and...possible hair loss. *sigh* The doctor told us that the chemo they wanted to try did not typically cause hair loss. My brain was doing a boogaloo. I thought 'Ha!!! In yer face woman!'. I think I may have even cracked a smile. Soon enough the meeting was over. He would receive the chemo once a week for the next 6 or 7 weeks, each session would take about 2 and a half hours.

His mom offered to drive him to his appointments and we politely refused. I spoke up and said 'I can get him to his appointments, no problem' - and he was happy to let me. Over the next month and a half she kept offering. If not her, then maybe this friend of hers that lived near us? No? She knows so many people that want to help. I took offense at that. It felt like she was implying that I was incapable of taking care of this or she thought I didn't really want to do it. Couldn't be farther from the truth, really. I had decided to become his human shield and wanted to protect him from the many well intentioned people who wanted to 'help' him. Many of his moms friends are 'spiritual' people who wanted to take this opportunity to bring him the good word and 'raise his spirit'. (For the record my sweetie maintained that he was an atheist.) Neither of us are church going people and it would have been uncomfortable for both of us.

We met with a nutritionist who gave us a lot of helpful advice about his diet and we attended a 'class', more of a meeting really, to learn about chemo and what to expect from it. He was being prescribed a mild form of chemotherapy and we were surprised to learn that most people not only didn't lose their hair from it but they actually felt good after their treatments. Really? I'd always heard chemo left you feeling weak and sick. This was big news! We left the class actually looking forward to starting the chemo.

Even so, I was pretty nervous the day of his first chemo appointment. I was sitting in the infusion room keeping one eye on him and the other on the iv bag as it slowly dripped into his arm. After about an hour, I began to relax a bit. They'd said that if he was going to have a reaction to the drugs, it'd happen right away. But there wasn't a negative reaction, in fact he looked quite relaxed...and a little stoned. We sat there watching the big tv hanging from the ceiling by his chair and every so often a nurse would come by to change one iv bag for another. Two and a half hours later and he was done. We left and he surprised me by announcing he was hungry - he wanted some McDonalds. No problem! There's one very close to our house and I swung through the drive thru on the way home.

We got home, he ate his sandwich and then an amazing thing happened - he pulled his guitar down from the wall and started playing! Holy shit man! It wasn't until that moment that I realized he hadn't played his guitar since at least January. How the hell did I not notice that? He'd slowly stopped playing because of the pain in his arm and shoulder and amid all the drama I had somehow not noticed. He enthusiastically cranked out a few tunes - Cliffs of Dover, Purple Haze, For the love of God... My heart soared! This was a very good sign indeed! For him to have stopped playing he had to have been hurting pretty damn bad and just knowing that hurt me as well.

He was a huge lover of music and loved the guitar gods in particular being a guitarist himself. He turned me on to a lot of stuff that might have otherwise escaped my notice (thank you sweetie) and music was a constant in our house. Sometimes front and center, sometimes in the background - but always there. There were times when he was practicing or trying to learn something new that he drove me just a little bit insane, hearing the same brief bit over and over and over again. The seemingly endless repetition would get to me after a while and I'd beg him to take a break. Please, PLEASE!! For the love of every thing holy please play something else for an hour before I become homicidal! I always felt bad about that. We lived in a tiny one room apartment at the time but practicing is important and he had no place else where he could do it. I could have split for a while or found something to do outside...what if, what if. Listening to him play now, I had a hard time believing I'd ever found his playing annoying and I was acutely aware that one day it would be gone for good. I tried not to think about that and happily lapped up every note.

The chemo was helping and he was feeling better. We quickly fell into a routine; arrive in the morning, get zapped and leave, and plan to be there for a few hours on chemo day. While he was getting his chemo I'd jet across the skyway to the hospital cafeteria and grab him a sandwich and bottle of ice tea from their deli. (Hospitals have deli's now - who knew?) We'd eat our sandwiches and I'd draw while he watched tv or napped in the chair until it was time to go home. The chemo was having a noticeable effect, he was feeling better and it was lasting longer with each dose. We also got good news from the techs - one day after the daily zapping routine they asked us to stick around because the radiologist wanted to see my sweetie. They said it looked like the tumor was shrinking and they wanted to do another scan so they could fine tune the beam. The scan confirmed it - the tumor had shrunk significantly! The treatment was working! They made a new lead shield and we left in a celebratory mood.

I drove him downtown because he wanted to share the good news with his buddies at the guitar store. He loved that shop and thought the world of the dudes who own it - and they clearly liked him too. He promoted them shamelessly everywhere he went - stickers, word of mouth, he even had their store logo tattooed on his forearm. Like I said, he loved that shop. The fellas were glad to hear the news and my sweetie picked up some new strings for his guitar and a new t-shirt.

It was nearing the end of March and true to their word, the doctors were going to have my sweetie feeling better in time for summer. At least once a week they did a new scan and each time it showed more shrinkage. He had a large odd shaped sunburn from the radiation, but he still had all his hair and he was feeling more and more like his old self with each passing day. We started feeling like we might beat this thing.

Down Deep into the Pain

  It was January 7th, 2010 and my sweetie had just come from the doctors office with his biopsy results. He had been complaining of a chronic ear ache and pain in his neck and shoulder for years.
  He'd been going to the pulmonologist for the past few years complaining of shortness of breath and these aches that would not go away. The doctor said she thought he had asthma and wrote him a prescription for an inhaler. When that didn't help, she said she thought it was bronchitis and gave him a prescription for another inhaler. Then she said she thought it was copd and wrote him another prescription for yet another type of inhaler. Finally after about 2 years of this, she said walking pneumonia and prescribed some antibiotics.
  It wasn't helping though, and he still had this chronic ear ache bothering him so he went to a different doctor to have it looked at. That doctor said he couldn't see anything obviously wrong in his ear and asked if there was anything else he needed. My sweetie said 'well, I've had pain in my neck and shoulder for a long time and it really hurts when I cough' and that doctor decided to order an x-ray. It came back showing a large mass in his right lung and a biopsy was ordered.
  And now the results were in. He came home, pulled up a chair, took my hand and told me it was cancer - stage 3b. I immediately burst into tears. No...please god, please...no. Anything but that! Why?! We were supposed to grow old together! We should have had another 30 years together easy... This just can't be happening!
  But it was happening. He had been misdiagnosed by his pulmonologist for the last few years and now that we knew what it was, it was too late. I was an emotional wreck and I took to my bed and laid there crying into my pillow for a week, inconsolable.
  I could hear him on the phone in the other room talking to one of his friends, saying that he was surrounded by weeping women but the worst part for him was seeing how hard his sweetie was taking it. He had been trying to comfort me for days; spooning me in bed, stroking my hair, telling me he loved me and asking what I wanted him to get me for my birthday. My birthday? My birthday?! Fuck my birthday! It so doesn't matter in the grand scheme of things! I blubbered that I wanted a cure for cancer, I wanted him to live...and he gently told me he'd love for that birthday wish to come true but he was hoping for a more immediate idea.
  He had spoken to his dad on the phone who offered to drive down from St. Cloud with the trailer and take my sweetie and his motorcycle down south so he could go for a ride, clear his head and decide on a course of action. They left for Texas the weekend after my birthday. The house never felt so empty or me so alone.