Shine On You Crazy Diamond

December 2010

Christmas was approaching and quite frankly, neither of us were feeling very festive. I wasn't planning on decorating our tree but it occurred to me that this could very well be his last Christmas and I had a change of heart. So I set it up and halfheartedly hung some ornaments on it. Every one wanted to know what I wanted for Christmas, and they'd ask me what I thought my sweetie wanted. I had no fucking clue. I mean really what do you buy a dying man for Christmas? I offered up some suggestions. Slippers? A warm fuzzy robe? Maybe an I-Tunes card so he could buy some music for his mp3 player? For my part, I decided to make him a 'bacon pillow'. I was inspired by the bacon plush toy in the Think Geek catalog - I would have just gotten that one but I honestly didn't think it would get here in time, so I just made my own from white and maroon colored fleece material. The hard part was making it without him seeing it. While he was sitting in the living room watching TV, I smuggled the materials into the bedroom and told him he couldn't come in until I said it was ok. Of course he found many excuses to have to come in anyway and every time he did I would quickly throw a blanket over my work so he wouldn't get a look at this latest project of mine. He was very curious to know what exactly I was doing in there. I sat on the bed working as fast as I could - cutting out the pieces, hand stitching them together and finally stuffing it full of polyfill. When it was done I didn't even bother wrapping it - I just went out into the living room and gave it to him. Fuck waiting for Christmas.
He sat there looking at it for a few minutes before finally asking "Is this....bacon?"
Me grinning: "Yes! It's a bacon pillow!"
Him laughing: "That's freaking awesome!"
Me: "So...do you like it then?"
Him: "Yes!"
He noted it was the perfect size for the arm of the couch and threw it behind his neck and tried it out. "It's very soft and squishy!"
Me: "I'm glad you like it! I had no idea what to get you for Christmas and this was the best idea I came up with."
Him: "I love it! I have the best sweetie ever!"
And then he gave me a kiss and snuggled up with his new pillow to take a nap with his Minion. I chalked it up as a win.

So many people dropped by to visit that month and every time someone did, sweetie would put on a smile and make an effort to sit up and chat with them. He was always a very social dude. But as soon as they left - it was time for drugs and a solid nap. I could see that the visits were starting to take it out of him, but he was happy to see them and they rarely stayed too long. I had quickly gotten used to him being bald, but I could see it was a shock for friends and family who hadn't been around as much.
Former roommate #2 came over one night with a bottle of Iron Maiden wine - Eddie's Evil Brew. He asked sweetie if he'd like a glass, and sweetie said 'no' but he'd like a little to taste. Former roommate poured a tiny bit into a glass for him so he could sample it and sweetie immediately noticed his tolerance for alcohol had gone way down - either that or it was some wickedly strong stuff because he said he'd gotten a mild buzz from that small sip.

When we didn't have visitors, I was doing the usual stuff. Messing around on my computer, running loads of laundry, daily trips up to the corner store for more ice and gatorade, hauling out the trash, fixing stuff for him to eat, sorting pills into the pillbox and making sure he got them on schedule. The steroids were still working their magic - his appetite was still good.

In between all of that I would try to get a little sleep or work on the little fairy house I started building. His family members were amazed by that little project and he liked showing them the latest tiny items I'd sculpted for it. "Isn't that cool?" he'd ask them. They seemed to understand that it was somehow helping me to cope with the shitstorm our lives had turned into. For Christmas I received several gift cards from them to buy more building materials for it at the craft store. I was able to get so much stuff that I expanded the project to include a small yard and garden. My friend Purple Haired Girl added to it by crocheting tiny things using a very small hook and embroidery thread. She made a little rug, a blanket for the bed, a little lacy tablecloth and the worlds smallest granny square afghan for the tiny sofa I'd sculpted. She also made some small 'family portraits' out of clay to hang over the little mantle.

One evening I was making some meatballs for him (thanks for the recipe Alton Brown!) and he came out to the kitchen to help like he usually did. I'd roll the meat into a ball and he'd coat them with breadcrumbs and put them on the baking sheet. Sometimes he'd just hang out while I was cooking and keep me company. One of those times he was standing by the back door as I was cooking and I suddenly caught a whiff of cigarette smoke. Startled, I turned around and there he was, leaning against the door jam puffing a cigarette. We had both quit, cold turkey, a year earlier - he in December, and me about a week later when he'd gotten his diagnosis. I found myself tearing up at the sight. I wasn't too upset about him having a smoke at this stage of the game. I just joined him by the door and asked if I could have a drag. Fuck, it tasted good. *sigh*

He had another appointment with his oncologist who gave us a bunch of new prescriptions. There wasn't one for the steroids and I told him we needed a refill on those. He said he was taking him off the steroids. I wanted to know why - they were helping with his appetite, that had to be a good thing. I don't remember the reason he gave, just that I thought it was bullshit. About a week later his appetite was declining and he was once again picking at his food. The weight he'd gained began to disappear and his energy levels dropped radically. I was pissed off and blamed the doctor for this decline. 

A few days before his next chemo appointment, the cancer center called and said they needed to reschedule him. They moved the appointment from the day before Christmas to the Monday after it. "Good" I thought, at least he won't be feeling like dog snot on Christmas. On the 27th, we went in and they did the usual blood test before his dose. A little while later they came out and said he couldn't get chemo that day - he was too dehydrated. I wondered how that could be possible with all the water and gatorade he was drinking. Instead, they put us in a back room and hooked him up to an IV and gave him some fluids for a few hours. He was rescheduled for chemo on the 29th. When we went in for that appointment, they said he was too weak to get chemo that day too. They gave him more IV fluids and rescheduled him again for January. While we were there, a nurse came in and started talking to us about 'quality vs. quantity' of life, and we went home feeling thoroughly defeated.

On New Years Eve, he crawled into bed around 10pm and stayed there for most of January.
 

Drift Away

November...
My Sweetie was home from the hospital and he still had several days of radiation to complete before they would consider another round of chemo. His favorite kitty The Minion was happy to see him return and was constantly laying on him or next to him, determined not to let him out of his sight. Our friend the Greasemonkey had gotten my car running again and I was once again making the daily drive down to the cancer center to get his head zapped. In addition to the radiation, the doctors had prescribed an assortment of new drugs for him to take. So many pills... I now had a new job, counting out pills into his pillbox and making sure he took all of them on schedule. There was both Vicodin and Oxycontin, there was an anti-seizure med and an anti-depressant, an anti-nausea med, an anti-inflammatory med, a stool softener and a steroid. He was taking upwards of 10 pills every 6 hours or so...

The radiation left him feeling tired and he spent a lot of time napping on the couch, but when he was awake he was in pretty good spirits. Then one day a few days into the radiation his hair started coming out. It was just like you see in the movies. He was sitting there and he ran his hand through his hair and it just came out in a big clump. He sat there for a moment looking at the handful of hair and then he got an idea. He got up and went out onto our deck and tossed it into the air. Then he pulled another clump, and another...he figured maybe the birds would use it to build their nests. When there wasn't anymore coming out that way, he came back inside and called his sister and asked her to come over with a hair clipper to take off the rest. He didn't want to be walking around shedding hair everywhere, might as well go all the way and just shave it off. I thought I'd be sad to see him bald, but I really wasn't that broke up about it. As far as I was concerned, he was still a good looking guy even without his hair - besides, we were expecting it to fall out anyway. We just thought it would be the chemo that did it, not the radiation. Both his sister and I took it in stride. If he wasn't upset about it, why should we be? We swept up the pile of ginger hair and put it in a bag. The news of his hair loss had his mother whipped into a hand wringing frenzy though, and she requested a few locks as a keepsake. No problem. We put some of it into a baggy and sent it off with his sister. Now that he was bald, his head was cold so he started wearing the cap that the Purple Haired Girl had crocheted for him. He requested a matching neck scarf and she obliged. Because of his bald head and goatee, I jokingly started calling him Heisenberg because of his sudden resemblance to the character in Breaking Bad.

When his radiation treatments were over the staff gave him the cancer mask they made to hold his head in place. He gave it to the Purple Haired Girl with the idea that she could use it to make a new 'monster' for our friend The Gamer's haunted yard using it and paper mache. He also gave her the bag of hair to go with it. We liked the idea that he could keep scaring people during Halloween for years to come.

After the radiation, he had another scan done along with a follow up appointment at the cancer center. We were surprised to discover that he had gained some weight, a side effect of the steroids he was on. They increased his appetite - he was eating good for the first time in a long time and the extra weight looked good on him, he was less gaunt and looking healthier. The doctor gave the green light for the chemo and he was scheduled for his first dose a few weeks later. He was looking forward to it since it was so helpful the last time.

One day when his Dad was coming over, Sweetie gave me the heads up that I'd probably want to go out for a while. It wasn't just his Dad that was coming over, but some hospice people were coming too. They were going to work out his end of life plans - what he wanted done and how he wanted to be treated when the time came that he could no longer speak for himself. He knew if I was home while this was going on I'd be a blubbering mess by the time they left, and he was probably right. So I went out and got some bubble tea, and went over to my friend RottieMama's house to wait it out. When I got home I asked him to fill me in. He said his Dad had power of attorney, that they did the paperwork for when he would go into hospice and that there would be no life extending measures taken. As far as he was concerned, when it was time to go - it was time to go. He was adamant that he did not want IV's or tubes of any kind whatsoever. He had noted my discomfort when I woke up with a catheter after surgery a few years earlier and didn't want to experience that himself. "Good call" I said, "Because that thing sucked. It was uncomfortable and I was pretty pissed off about it." "Exactly" he replied. The hospice people had tried to talk him into moving into the first bed that came available and he'd said no. He told them that at the moment he still felt fine and wanted to stay home with me as long as he could. They warned him there might not be a bed available when he needed it and he said he'd take that chance.

Then his chemo appointment came around and it was back down to the cancer center. Our Keep Calm and Carry On shirts had arrived and we decided to wear them - the cancer center staff asked about them and thought they were pretty cool. His dosage was much bigger this time - instead of the two and a half hours per appointment that we had last time, it would take six hours of sitting in the chair waiting for the stuff to drip into him. And it wasn't just that there was more of it, but this time the dose was stronger as well. When he was done, I got his next appointment set up - it would be the day before Christmas. After we got home he felt sick and just wanted to lay down, a far cry from the first time we'd done this when he came home and played his guitar for an hour. The next day he felt worse and didn't want to eat. He was thirsty though and wanted gatorade, so I ran up to the store and got him some. The Minion wanted to cuddle up with him and he felt so bad that he grumbled and shoved him away. "No dude, I hurt." So the Minion compromised by curling up on the back of the couch instead and dangled a paw down, just barely touching Sweetie with it.

At this point Sweetie wasn't up to doing much of anything, so I took over. I made frequent trips to the store for bags of ice, more gatorade, more soda, more bottled water - he was constantly thirsty, jello, soup, and these little microwave dinners that he wanted. I ran the laundry up and down from the basement every other day so he'd have clean dry clothes because he would wake up soaking wet from sweating. I ran to the pharmacy to get his prescriptions and fielded phone calls from his friends and relatives - 'No, he's really not up for company today - check back in a day or two. I'll tell him you called.' I sorted meds into the pillbox and when the mystery man came, I'd turn off the alarm and make sure he got whichever ones he was supposed to get at that time and log them in a little notebook.

A few days later he was feeling a little better and actually sitting up on the couch, snuggling his favorite cat and receiving visitors again. When we didn't have visitors, he entertained himself texting his friends and we sat around watching TV together - Top Gear, Breaking Bad, Sons of Anarchy, South Park.

To keep my sanity, I started making a little fairy cottage out of clay. Sweeties Mom was driving me somewhat insane with her emails and phone calls and apparently she was starting to get to the Purple Haired Girl too. One evening while she was sitting upstairs with us, she received a text from Sweeties Mom asking her (yet again) to sing a certain song at his wake. Purple Haired Girl read it and gave a heavy sigh - Sweetie had already said he didn't care for that song...she'd said she'd rather not, so why the hell was she pushing this? It was maddening, but I was somewhat relieved to learn that it wasn't 'just me' feeling irritated by her behavior and requests.

One evening around this time, the Purple Haired Girl came running excitedly upstairs and showed us a positive pregnancy test. We wanted to be happy for her, we really did - but with our current situation we just couldn't muster much excitement. And then a few days later, when Sweeties sister was over for a visit we committed the unpardonable sin of still not being excited when we told her about it. We did say that we were happy for Purple and wished her the best, but we also said we thought the timing felt horrible. Sweeties sister said nothing about this to us, but as soon as she got home she texted Purple and said she heard the good news - too bad the 'grumpy people' upstairs hate kids. I guess she said a few other things too, but that was the gist of it: 'We hate babies and wouldn't want to be her friend anymore.' After receiving this text, a hormonal and visibly upset Purple Haired Girl came upstairs to ask me if we were not going to be friends anymore just because she was pregnant. "Wait, what?! Where would you get that idea?" I asked. And she sobbingly told me about the text that Sweeties sister had sent. The way I heard it, 'Sis' made it sound like it was all me and that Sweetie hadn't said anything - in any case Purple addressed me about it alone. I did my best to reassure her that, yes, she would still be my friend and I didn't harbor any ill will toward her or the baby. I explained that 'Sis' had it in for me because she thought I 'hated' her (I didn't). To prove my point, I gave Purple the Christmas gift I bought for her the day before - nearly a month early. It was a glittery green fairy ornament that caused her to squeal happily. "There" I said. "Would I buy you a fairy if I hated you? Do you believe me now?" She said she did.

Later, I filled her in on all the Sister drama we'd had and said she was probably trying to stir up trouble for me. She'd been in a bit of a twist because I opted out of too many family gatherings over the years, I never made an effort to meet her kid (She's overly permissive. Sweetie had said he was allowed to run amok and if he wasn't his nephew he wouldn't want to hang out with him either) and then when her brother got sick and she wanted him to come live with her - he chose me. To this day, I suspect that she was hoping Purple would be so angry that she'd kick us out and then Sweetie would of course come live with her and "finally have a real family." (She actually said that back when he got his diagnosis! He told her he did have a 'real family' over here and me, Purple and the Dungeon master were it.) For his part, my Sweetie actually called her up and went to my defense. He pointedly told her that the only thing she should have said to Purple was "I heard the good news, congratulations!" and that she had no business repeating anything else we said - we had both had a bad day and were simply venting our frustration even if it was misdirected. Sis completely denied saying anything at all. Really?! Then why would Purple come upstairs and say she said it? And Purple still had the text to prove it. And still she denied saying a thing. Ah the drama in that family. Is it any wonder that I opted to skip their gatherings?

Fear of falling

I thought that I knew everything
Till everything changed
Now I'm standing on an island
That is sinking into the sea
And all that I can do
Is just enjoy the scenery

 - The Badlees 

October....right,

In the beginning of the month my sweetie had his follow-up appointment to get his scan results. We knew it wasn't going to be good news... the best we could hope for was no change from the last scan. I knew there'd been a change though - his appetite was diminishing and he was having trouble with his right hand. We were sitting in the exam room chatting when the doctor came in and told us that the cancer had spread further. Well of course it had! It had spread to his organs months before and we were told they weren't going to do chemo that time, so we weren't surprised at all to learn it had spread even more. Why they didn't want to try another course of chemo after the last scan was beyond me - but this time the doctor said we'd try the chemo again. It'd be the same stuff he had the last time, but a much larger dose and because of that he'd probably lose his hair this time. My sweetie complained that the current dose of pain meds was no longer as effective, and he was developing some neuropathy in his right hand - his fingers felt numb - so the doctor raised the dosage of his pain meds. We scheduled the first of his chemotherapy appointments (he would have 3 appointments, one every three weeks) and we left. On the ride home we tried to remain hopeful. Chemotherapy had made him feel much better the first time around and we hoped it'd be beneficial this time too.

A few days later, his cousin called to ask us if we wanted to go for another boat ride before they pulled it out of the water for the year and once again we jumped at the chance. The weather was considerably warmer this time - it was a bright, sunny, beautiful autumn day - a perfect day for a boat ride. The fall colors were peaking and I brought my camera along again and his cousin brought hers as well. She had complimented me before on my picture taking skills, and wanted to know if I had any tips to share. I explained that I had no secrets really - I just take an insane number of photos and get lucky a lot. "People think all my pictures are good because I don't let them see the ones that didn't turn out" I told her. The three of us had a great time together, chatting as we motored up the river, and waving at the other passing boaters who were also out enjoying the warm weather. We beached the boat next to a railroad bridge, set up some folding chairs on the shoreline and did a little recreational smoking. She and I were busily taking pictures of anything and everything, and my sweetie was poking around and digging in the sand with a stick. There was the charred remains of a fire ring - evidence that other people had beached and partied here before us - and my sweetie found a melted piece of glass in it, which he washed in the river and gave to me. I also found the words "I love my sweetie!" written in the sand - a love note he left for me to discover. His cousin spotted it too and snapped a picture of it and of us just as I was giving him a kiss. We hung around there for a while, hoping a train would come by... Unfortunately there wasn't one. A guy with fishing gear had walked out to the middle of the bridge and dropped a line in the water and we came to the conclusion that these tracks were seldom used anymore - either that or this dude was fully prepared to jump in the river if a train came. Then his cousin's cell phone rang, it was her parents reminding her it would be getting dark soon and wanting her to bring the boat back home. It had been a wonderful day, and we hoped we'd be able to do it again sometime.

Back home again, I uploaded the pictures I had taken and sweetie picked a few of them out and asked me to email them to his mom. Inwardly I cringed a little, but I honored his request and forwarded them on to her. I can't fault him for loving his mom, but she had been driving me nuts with her premature mourning.

For the next few weeks he spent a lot of his time napping on the couch with his favorite of our three cats. He also went for a few short rides over to his grandpa's and back on his motorcycle while the weather was still warm. The last time he went for a ride, grandpa had called him over to see another of his cousins while they were in town - this one was a preacher who lives out of state but he wanted to see my sweetie while he was here. He wanted to bring my sweetie "The Good Word"... oh dear... I'm sure my sweetie was polite, he was always polite when dealing with members of the clergy - but he was not a church going guy. In fact, the only times I ever saw him in a church the entire time I knew him was for funerals and weddings. When he came home from that visit, he decided it was time to put the bike in the garage for the winter. He said it was getting too cold for him to ride, and his hand wasn't working well anymore - he was afraid he'd cause an accident. But I think he really just wanted an excuse to not have to visit his out of town cousin again before he left.

Halloween was fast approaching - our favorite holiday. Every year, our friend the Gamer turned his yard into a haunted graveyard complete with tombstones, wandering ghouls and an unearthed coffin (yes a real coffin) that contained our friend the Dungeon Master with a tub of candy and the Purple Haired Girl as his undead widow wailing next to it. We (my sweetie and I) had started out as spectators for this event. I gave the Dungeon Master a ride out there one year and told my sweetie about the elaborate set-up the Gamer had - the year after that my sweetie came along to see it for himself and we practically pissed ourselves laughing at the kids approaching the yard full of teen-aged bravado only to exit screaming in terror. Lol, half the time they ran off so quickly they didn't even get their candy! The year after that, the Gamer was short a crew member and my sweetie stepped up and donned a costume to help out. As for me, I had become the 'official' photographer taking pictures of the yard and costumed crew members. This year the Gamer asked if my sweetie was going to be helping out again and I told him I wasn't sure he was going to be up to it, the weather was getting colder and he'd be getting chemo the week before.

On the 23rd it was finally time for his chemo appointment, and we were once again sitting in the sunny lobby of the cancer center waiting for his name to be called. I remember he was unusually grumpy that morning and snapping at people. They called him back to get his blood work done and he was still grumpy when he returned to the waiting area. We were sitting there waiting for him to be called back into the infusion area and he kept looking at the clock and complaining that they were late. I insisted that 'no, they weren't' and he snapped at me that 'Yes! They were!'. I quietly said to be patient - maybe they were short handed or maybe his new dose took more time to put together - "I'm sure they'll call you in soon" I said. We sat there quietly for a few minutes, holding hands and waiting. I noticed his hand was twitching lightly. Suddenly he very calmly said "Something's wrong"... I looked up form the newspaper I was reading, "What?" I asked looking around the waiting area. "Something's wrong!" he repeated and this time he sounded alarmed. I noticed his hand was now twitching a great deal more, as was his right arm. Then he said it again - "Something's wrong! Help?" Oh shit! "Wait here" I said "I'm getting help". I rushed over to the receptionist and very quickly told her he was having a problem - "I think he's having a seizure" I told her. She immediately got on the phone and within a minute some nurses were rushing out with a wheelchair to fetch him. By this time he was fully convulsing in his chair and yelling "HELP! Somebody...HELP!" They were right next to him and he didn't know they were there. They helped him into the wheelchair and whisked him back to an exam room with him convulsing and hollering the whole way. A moment later it started to subside and his doctor came in to see him. The nurse explained that he'd just had a seizure and the doctor asked him if he'd had a brain scan done. My sweetie said "Not unless you ordered one" and the doctor said he hadn't. Then he said the words I was dreading, that he suspected the cancer had spread to my sweeties brain. Oh...oh fuck. He ordered up another scan immediately. My sweetie asked them where I was and said he wasn't going anywhere without me. "I'm right here" I said. I had been standing next to him the whole time and he didn't know it.

They wheeled him down the hall to the elevator with me in tow and I had kept my composure up to that point, but now waiting for the elevator tears began to fall. I was standing behind them shaking like a leaf, silently crying and wiping my eyes with my sleeve when one of them turned around and saw me. "Oh honey! It's going to be ok!" she said and grabbed me some tissues from behind the counter. I just shook my head numbly and dabbed at my eyes. They took us to the emergency room and by the time they got to the check in desk he was feeling mostly normal again. I listened as they asked him to describe what happened. He told them that it started out as a weird tingle in his right hand which became pain that traveled up his arm, through his neck and then into his brain. His sight cut out and he said he could feel his brain tingling, "It hurt" he said. "I don't ever want to feel that again!" The poor dude had been fully conscious for the whole thing. They put us in a stall to wait for someone to take him for his brain scan and while we were waiting he apologized to me. "I'm sorry sweetie, I know you don't like hospitals" he said. Putting on a brave front I replied that he 'was just trying to jump the line because they were running late'. That made him laugh. "I love my sweetie" he said. "I love you too" I answered. When he went off for his scan I made a few phone calls to let people know what happened and then stepped into the bathroom to have a good cry in private. Then I splashed a little water on my face and went back to the ER stall to wait for him.

The scan showed the cancer had spread to his brain and they admitted him to the hospital and started him on anti-seizure meds. That night he got an MRI and an EKG done and they said he had at least 10 lesions in his brain. His doctor decided to postpone the chemo and scheduled radiation for the lesions. He'd start radiation the next morning and be dosed for the next ten days. They sent me home for the night. I was there bright and early the next morning so I could go down to radiation with him. Just as the orderly was wheeling him out, his mom showed up so I hung back a moment to fill her in on what happened. I was sitting on the edge of the hospital bed telling her and his step-dad what had happened when she suddenly sat down next to me and tried yet again to hug me. I tried to lean away and brush her off me saying "Don't" but she was being very insistent that I 'needed to be hugged' and forcefully trying to pull me toward her. Now I was angry. We'd been over this many times before but she kept pushing it. "GOD FUCKING DAMMIT! QUIT TRYING TO FUCKING HUG ME!" I barked at her feeling instantly embarrassed about my language in front of his step-dad. He was a retired Catholic priest and I've always tried to watch my language when he was around. It had the desired effect though, and it startled her enough that she let go of me immediately. I stood up, apologized to step-dad and told them I was going down to radiation and sweetie should be back in about half an hour and stormed out of the room. I don't know what route the orderly took, but mine must have been a short cut because I got there the same time they did.

I liked the folks down in the radiation center and it was nice to see them again, even if the circumstances were decidedly crappy. So I put on a happy face when they wheeled my sweetie in to get fitted for his mask. This was a form fitted plastic mold to hold his head in place while he got his radiation treatments. With that done, they wheeled him into a radiation room and he got his first treatment. Afterward they were going to call for another orderly to bring him back to his room and I told them not to bother, I could bring him back upstairs. We set a time for the next day and off we went.

His mom and step-dad were still in the room waiting when we got back, and I took a seat and kept my mouth shut while his mom fawned over him. Conversation eventually turned to the price of parking in the hospital ramp. It was ridiculously expensive during the week, but free on the weekends. I had discovered that the hospital offered discounted parking passes for long term patients and mentioned it to them. The passes allowed you to come and go 5 times a day and were a huge discount over the regular rates, not that it mattered much - sweetie and I were flat broke. I wasn't going to let that stop me though. Wild horses couldn't have kept me away from him and I would walk down there if I had to. Soon they were leaving and before they did, his mom slipped me some cash and told me to buy the passes. I was actually grateful to her for that.

Every single day I was there as soon as I was allowed. I'd show up first thing in the morning and we'd just hang out and watch tv until his radiation appointment. Then I'd wheel him down to get zapped, and back up to his room again to watch tv some more. I pushed the lounge chair next to his bed and he piled the pillows on the rail of the bed so we could put our heads together and nap.His sister stopped in to visit, and so did his 'cousin J' who wasn't really a cousin - 'J' was the divorced husband of the cousin with the boat, but the two of them had become fast friends and remained so long after the divorce. J brought him a massive book about guitars -  "The Illustrated Directory of Guitars"... it's so big and heavy he could hardly hold it up. Sweeties mom showed up frequently as well, bringing treats with her. Cookies that were left mostly uneaten, and a case of strawberry soda. He had requested Lime Crush but she'd said she couldn't find it, so I took that opportunity to run to the store and buy him some. Half an hour later I was back with several cans of it for him.

The Dungeon Master and the Purple Haired girl came to visit as well, while they were there we were talking about what we were missing on tv - at home we had the full cable package, but the hospital had limited channels. Sweetie was bummed out about missing Top Gear, and the Purple Haired girl tried unsuccessfully to get an episode on her laptop for him. When we went home, we managed to get some segments of it onto my external drive and the next night we sat around in his hospital room laughing and watching Clarkson, Hammond and May trying their hardest to destroy a Toyota Hilux. It felt like we were all sitting around watching tv at home. The Purple Haired girl sat in the other chair busily crocheting a skull cap for my sweetie for when his hair came out, and the Dungeon Master was lounging on the floor like a cat. I also managed to get the recently aired segment about them on 60 minutes since Purple Haired girl hadn't seen it yet. In that segment, James May was wearing a t-shirt that said 'Keep Calm and Carry On'. When we saw it during its original airing, my sweetie and I were curious about it so I googled it. Keep Calm and Carry On was one of a series of posters intended to raise the morale of the British public in the event of an invasion during world war 2. We'd considered it to be appropriate for our situation and adopted the slogan ourselves - we were being invaded by cancer after all - and we ordered up some t-shirts of our own. All things considered, it was probably the most pleasant evening we've ever spent in a hospital. I do humbly apologize to the BBC for our act of piracy. I hope that they (and the guys at Top Gear) will forgive me. It was for a good cause.

While he was in the hospital I kept busy taking care of him. He was a bit wobbly on his feet at this point so I helped him out of bed and to the bathroom, I helped him shower, I fetched him cups of ice for his soda and wheeled him to and from his radiation treatments. The nurses said they hardly knew he was there since he never had to hit the call button when I was around. They really only had to come in to give him his meds, which had increased from just pain medications and now included an anti seizure med, a steroid, an anti nausea and an anti depressant. These were all working well, as was his radiation. He seemed to be feeling better and they were planning to release him soon.

A few days before he was released from the hospital, he had another visitor - this time it was the hospital Chaplain. Being more or less agnostic, I try to be respectful of the clergy but I couldn't help but feel my hackles raise at this visit. Hospital chaplains usually visit those on their last legs and my sweetie was feeling better - his appetite had even improved. So I felt like the buzzards were circling prematurely and wondered if his mom was behind this visit. Even so, I kept my mouth shut and sat there doodling little pictures on my sketch pad while they chatted. The guy avoided the subject of religion though, and they chatted about my sweeties circumstances; how he'd been a pretty hard core alcoholic for many years and gave it up only to get diagnosed with cancer a few years later. He asked if that was upsetting to my sweetie and I'll never forget his answer. My sweetie told him "No, if I hadn't quit when I did I would certainly have died some other way a long time ago and my sweetie was worth it. Quite frankly I feel like these last several years have been the bonus round for me." Wow. I almost burst into tears again. Chaplain guy seemed impressed by his answer. He tentatively broached the subject of religion and my sweetie sidestepped it saying quite frankly he didn't know and wouldn't know until if or when he got there. Chaplain guy nodded and dropped the subject. He wasn't being pushy and I respected him for that. Around that time a nurse popped in and asked us to step out for a moment while she gave my sweetie an injection of something, and outside the Chaplain asked me the same question. My reply was much the same as my sweeties - I won't know until I'm dead, and until then I just try to be nice. The nurse left and we went back in, the Chaplain said it was nice talking to us and that he'd like to stop by again. My sweetie told him 'Sure' and then he left.

Sweetie was still in the hospital on Halloween, and I didn't want him to miss out on the Gamers house that year - he had expanded the into the backyard and the garage - and it was the biggest and most elaborate set up to date. I reluctantly cut my visit short to go over there and take pictures and video of all of it so my sweetie could see it. I was on my way back to the hospital to show them to him when my car broke down. Just a few miles from home. As if the universe itself was out to get me. I couldn't get the car to start, so I tried to get a cab. While I was waiting for the cab, some homeless dude decided he was going to wait with me 'so no one would mess with me'. I have nothing against the homeless, I've always had a sort of 'there but for the grace of God go I' attitude about them, but this guy was starting to freak me out and I was starting to wonder if I was going to get robbed. Then he asked me if I had any money to spare. I didn't have any cash on me, I was going to have to get the cash to pay the cab when I got home. All I could offer homeless dude was a candy bar. He decided to stick around anyway. So I waited, and waited, and waited some more, while cab after cab just shot right past me like I wasn't even there. Of course they did - every time one came by, this crazy dude would go running out in the street yelling at them and flailing his arms. After about an hour of that, I decided this guy was hurting more than helping and I went to the 24 hour diner a block away and asked them if they would call a cab for me and could I wait for it inside please. They made the call and I waited another hour - still no cab. They called again and I continued waiting. 45 minutes later and I was nearly in tears. Fortunately for me the waitress was kindhearted and her husband was there. She asked how far away I lived and had him give me a lift home. I was so grateful! I feel quite certain that if he had not given me a ride I'd still be down there waiting to this very day.

And that wasn't the end of it, oh no...not by a long shot. I was home but I still had to get my car home too. I have emergency road service in my insurance policy, but they require you to pay the tow truck up front and then they'll reimburse you with a check later. I only had five bucks cash at home. Fortunately, the Purple Haired girl was home by then and came to see me. I was on the phone tearfully explaining my predicament to my sweetie and trying to figure out what I was going to do when she offered to use her credit card to pay for a tow truck for me, then she gave me a ride down to the car to wait for him. The homeless guy was still there and came over and knocked on the window. Seriously dude?! So I gave him the $5 and he disappeared. We had to wait nearly an hour for the tow truck to come, and another half hour for him to lift my car and scribble on a clipboard before we were finally underway. It took less time to get to the house than it did for him to do the paperwork. By the time it was all over, it was nearly 3am and it was one of the longest days of my life.

The day they released my sweetie he called home and said I could stay put, his mom had shown up and was going to give him a ride home since the car was misbehaving. I had my misgivings about this, but I said ok. His mom drives a vehicle that's really too much for her to handle (in both mine and my sweeties opinion) and didn't seem to grasp the idea that hitting bumps in the road or bouncing off the curbs while parking jostled her son painfully. On top of that, apparently there was a bunch of paperwork that needed to be signed before he could leave... I was expecting him home by 1pm and for some reason he didn't get out of there until nearly 6 - by which time he was in a completely foul mood. *sigh* I knew I should have gone in... if I had been there that shit wouldn't have flown at all. I'd have had no problem telling them we were leaving within the hour whether they produced the paperwork or not. Just try and stop me. His mom was apparently content to stand around waiting though. When he finally got home all he wanted to do was take his meds and go to bed. I let him.

And that, my friends, was October.

I feel good

April 2010, my sweetie completed his round of chemo and radiation and he was feeling good. During the last couple of weeks of treatment he was tired a lot, and the burn from the radiation got pretty bad but his appetite was better than it had been in almost a year and his mood had improved greatly.

The nutritionist had said to keep his weight up - any calories were good at this point, and I was shoe-horning them in whenever and where ever I could. I made many middle of the night trips to the local fast food restaurants - if he wanted White Castles at 3am I'd hop in the car and drive across town to get them. I was just happy to see him eating again.

Toward the end of the month his fatigue was going away and he was feeling more energetic. He took advantage of this and made the rounds visiting his friends and family. He got a new motorcycle that was lighter and easier for him to handle, and as soon as the roads were dry enough he made sure to go for a ride at least once a day as well.

He was feeling so good that he began to over do it. Every year I had a container garden on our back deck and he would help me set it up, getting the pots down from the shelves in the garage and running them up the stairs. He liked to sit out there in the morning, having coffee, watching the birds and listening to the trains. I wanted him to take it easy but as long as he was feeling good he wanted to act like nothing was wrong whatsoever. He wanted to feel normal. He wanted to do laundry, he wanted to barbecue, he wanted to dig in the dirt...so I let him. We seemed to have a mutual unspoken agreement that as long as he was feeling good, we'd live in denial for a while.

So we went shopping together at the nursery to pick out the plants for the season and get dirt for the pots. We did a lot of shopping in 2010 really...if something struck his fancy, we bought it. I saw no reason to deny him any creature comforts he wanted and he saw no reason to deny me mine. I think we both just wanted the other to feel better, price tags be damned. While we were out shopping he upgraded our deck chairs and we got a patio umbrella to give us a little more shade in the afternoons.

The doctors had changed his prescriptions - instead of taking Vicodin as needed, he was now taking Oxycontin twice a day and it seemed to be managing his pain very well. I remember sitting with him on the deck last spring and being almost convinced that it had all been a bad dream.

He couldn't be dying - he looked healthier and happier than I'd seen him in ages.

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.

You can't bring me down

It was February 2010. We were on our way to the hospital to meet with the oncologist and discuss the available treatment options. Up until now, only his mom had been going with him to his appointments for moral support but her attitude was pissing me off so I decided to start going with him myself. The last time they'd been to the hospital they couldn't find the oncology department and canceled the appointment because my sweetie was tired of walking. They had rescheduled and went shopping to get stuff for his road trip instead. I suggested that they could have maybe grabbed a wheelchair or something since it was such a long walk. It was just a cop out though - his mom didn't think he should do anything but lay down and keep increasing the pain meds until he died. She seemed to have the idea that if he didn't fight it, he'd die a peaceful death and stay pretty.

We arrived at the hospital and she parked in the main ramp. It turned out that the oncology department was on the opposite side of the building - a city block away. As soon as we stepped off the elevator, a man in a blazer stepped forward, greeted us and asked if we needed directions. I wondered when hospitals got doormen, and asked him for a wheelchair and directions to the oncology department. Blazer guy produced a wheelchair and when my sweetie went to sit in it he tried to stop him assuming we wanted it for his mom. I immediately piped up - 'Yo dude, he's the patient - let him sit, eh?'. Blazer guy apologized and insisted on pushing the chair and walking us all the way to oncology.

Now we were sitting in a consultation room with an oncologist talking about treatment options. His mom was taking notes as usual - she always takes notes. I have no idea if she ever found any of her notes useful but I think maybe it made her feel like she was paying attention better. I was sitting quietly on the couch next to my sweetie, listening. The doctor was recommending a combination of chemotherapy and radiation and was telling us the possible side effects as his mom scribbled them down in her notebook.

She began asking him questions about the treatment and saying things like "Won't his hair fall out?" and "Chemo will just make him feel icky - why would he want to go through all that just to die in two months anyway?". The doctor seemed surprised by her questions - he had just told us that my sweetie could add significant time back to his life if he tried treating it. He repeated himself and said that this is what he would do if it was him or anyone in his family. He went on to say that although there's no hope of curing it completely - and she interrupted, gesturing at me. She said "See, she doesn't get that - she's still holding out hope for a cure." Ugh! The doctor finished his sentence saying 'we can seriously slow it down which can offer better pain management and add time to your life.'

I was furious with his mom, her attitude, and now she was sitting there talking about me as if I weren't there or could not speak for myself. I had heard enough and excused myself to go grab another cup of coffee. A moment later she stepped out of the room so the doctor and my sweetie could talk and came over wanting to 'comfort' me (translation - she wanted she hug me) but I was angry. She had talked about me as though she thought I was delusional or just didn't 'get' it. I knew there wasn't a cure but I also didn't think he should give up without a fight! Why would she discourage her son from getting treatment?! What kind of mother would not encourage her child to fight for his life?! I remember angrily saying to her "They said this it the way they treat it - why are you discouraging the chemo?" and stormed off after my sweetie who was being taken to an examination room. After the exam, the doctor ordered some new scans and set us up with an appointment to get them. We said goodbye and left.

I decided to push the wheelchair on the return trip. I am a deceptively fast walker and having had more than enough of his mom I quickly left her in the dust. (I'm short, my sweetie was tall - early on I learned to walk fast to keep up with him.) On the ride home my sweetie was saying he didn't really like the hospital we were just at or the doctors there. We were passing the St. Paul Cancer Center and I asked if we couldn't go there instead. They were affiliated with a different hospital, they were much closer to the house and they had better parking. He echoed the question at his mom - 'Any reason I can't get treated there instead?' and she said she'd look into it when she got home.

Later we went and got the ordered scans and she called on that same afternoon with appointment info for the new place. They said the scans he just got could be transferred over to them and they could begin treatment right away. I said I would handle driving him to his appointment so his mom didn't have to, but she said she wanted to come along anyway. She'd just meet us there.

As luck would have it, she couldn't make it to the appointment after all and I was secretly relieved. It was a sunny day, the waiting area was warm and bright and the staff was friendly. We went in with a positive attitude and met with a radiologist who matter-of-factly told us he expected to make my sweetie feel better in time for summer. He prescribed the same treatment options the other doctor had told us about and I remember noticing how much more relaxed the atmosphere was during this appointment. My sweetie asked when we could get started and the doctor said 'We can start today if you like.' What? Really? Today? Now? My sweetie said 'Right on man, let's get started!' and the next thing I knew I was sitting on a bench in a hallway waiting while he got a scan to calibrate the machine. I met the other people who would be treating him and we got appointments set. For the next six weeks he would receive daily doses of radiation to his right lung and shoulder. He would receive chemotherapy once a week after he met with his new oncologist.
We went home feeling hopeful for the first time in over a month.

The blessed hellride

Back to the future - it's the end of January 2010...

My sweeties dad had come down from St. Cloud with his trailer. The plan was to trailer my sweeties motorcycle and take him down south and southwest where it was still warm and the roads dry so he could go for a ride, clear his head and decide on a course of action. I was surprised that there was anything that needed deciding, but I guess there was... My sweetie was of the opinion that it was too late for treatment to be of any use, I believe the phrase he used was 'making beds in a burning building'. My take on it was 'Really? ...Really?! So you're just planning to go down without a fight? Dude, that's so not like you at all.'

Even more surprising to me was how his family was taking the news. Both his dad and his sister invited him to come live with them at their houses so they could take care of him. He politely declined their offers and said he didn't want to leave his sweetie. They said I could come too, but he turned them down saying he liked our house and planned to stay here as long as he could. His mom didn't want him to fight it at all. Of all the different reactions people had, hers shocked me shitless. She said chemo would just make him feel sick and his pretty hair would fall out, she didn't want him to die bald and why go through all that when there's no hope of a cure? I was angry at her for that. I spent a lot of time those early months feeling pretty pissed off at a lot of different people for things they did or said in the name of 'comforting' us. Yeah...go comfort someone else you *&^%$##@.

Before the fellas had left on their road trip, I paid a visit to one of my girlfriends and spent some time crying on her shoulder about our current state of affairs. As luck would have it, her neighbor across street stopped over and from him I received some hope and encouragement. He had been diagnosed with cancer 4 years ago and like my sweetie was given the 2 month to 2 year life expectancy. He recommended going for the chemo and any other treatment they were willing to try - he said it could help a lot in the way of pain management and slowing the tumor growth. For a guy who'd been given the same bleak diagnosis as my sweetie, he looked like he was feeling pretty good.

Armed with this information, I went home feeling a little better and had a chat with my sweetie. I told him I was in this for the long haul and that if he decided to try and fight I'd have his back and do everything I could to help him. I told him about my girlfriends neighbor and what he'd said, and asked him to please think about it.

So off they went - destination south and southwest. The plan was to head down through Texas and then over to the painted desert. Once they got to a place where the weather was nice and the roads were dry, my sweetie would ride his bike while his dad followed in the truck. My sweetie was already in pretty rough shape though and the weather just wasn't cooperating. They had to go much further south than they'd planned in Texas because of it, and the trip west was scrapped because the area was having heavy rains and flooding.

My sweetie called me in the evenings when they'd stopped for the night and gave me the days progress. The weather wasn't good, the trip was physically hard on him and he missed sleeping in his own bed. He sent me photos he took with his cell phone on the way... The next day he told me they'd finally taken the bike off the trailer in southern and he went for a ride. It only took an hour or so before his shoulder started bothering him. He decided an hour was going to have to be good enough, there was more stormy weather in the forecast and he was tired of being rattled around in the truck. Time to head back home then.

I remember feeling so happy to see him when he got back. I wanted to squeeze him for all he was worth but not wanting to hurt him I settled for a gentle hug and kiss. He'd been on the road with his dad for just under a week but it felt like an eternity to me.

He and his dad had done a great deal of talking on the trip, and it seemed the plan of action was going to be fight, but know when to quit. No life support, do not resuscitate, do not intubate. He also made plans to move to a hospice facility when he was near the end. He didn't want me to have to be his nurse, he thought it would be too hard on me.

For my part, I was thoroughly put off by his mom's defeatist attitude and I decided to start going to his doctors appointments with him.