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.
 

Time

May, 2010 -
You just can't beat springtime in Minnesota - the snow is finally gone, the days are getting longer and the temperatures are mild and comfortable.

My sweetie was still feeling good from his recent chemo and radiation and he was spending a lot of time outside customizing his new motorcycle. He painted it flat black and installed his saddle bags he'd had on the Harley. He sold his Harley earlier in the spring because it was too hard for him to ride it anymore. It was a big heavy bike and the vibration from the motor caused him pain in his shoulder and chest. Although he'd regained some of the dexterity in his hand, his arm was still weak and he feared he might dump it while riding. I was against the idea of selling it - I had said to him that he'd regret it once springtime arrived and he was feeling better. And now spring was here, he was feeling better and the sound of motorcycles was in the air. He was itching to ride again.

The 'new' bike was a used Kawasaki. It was much lighter and easier for him to ride. His mother ponied up the dough for it. She bought him a lot of stuff in 2010 - more stuff than usual. T-shirts, hats, watches - if she thought he'd like it or she saw him looking at it, she'd buy it. It was as though she thought he wouldn't know she loved him if she wasn't showering him with gifts.

For my part, I was still avoiding her when and where I could. Her behavior had been completely over the top since January - really facepalm worthy stuff. One day, she gave him a ride to the cancer center because we were having car trouble. She arrived wearing a faux leather jacket with a faux leopard fur collar - and she was wearing a cancer headscarf with a wine bottle print all over it. For some reason she thought she looked like a biker - but why she was trying to look like a biker was and still is beyond me. We knew what it was as soon as we saw it, we had just spent every day for the last month or so at the cancer center and we had seen hundreds of them. She tried to say it was a bikers do-rag but it was quite obviously a cancer cap like the ones they had in the baskets at the cancer center, made by volunteers and available for free to cancer patients. It was ridiculous and embarrassing. He told her that it wasn't necessary to dress like a cancer patient to go to the cancer center, and it came off as a bit disrespectful to the actual cancer patients as well. Fortunately we never saw that hat again. I still have no idea what she was thinking.

He had a follow up scan in the middle of the month and the results were still good. It appeared that the tumors in his lung were continuing to shrink and we were ecstatic. The fear and anxiety I had been feeling was beginning to abate. The irises he planted in the yard were starting to flower and we were spending a lot of our time out in the sunshine enjoying the weather and watching the birds.

We had the occasional visit from his dad and his sister - both far more tolerable to me than his mom. His cousins dropped by too. They were all far more pragmatic and it only accentuated how extremely nutty his moms behavior had been. Deep down, I felt guilty for the vitriol I felt toward his mom - but I couldn't make myself feel sorry for her and I couldn't stop the bile from rising in my throat whenever I had to interact with her. Sure, she was losing her son, but so was his father. And his sister was losing her brother, and I was losing my spouse. The big difference though, was that she kept acting as if every breath was his last and was mourning as though he was already gone - and this was at a time when he was feeling good. The rest of us refused to begin mourning until he was actually gone. Or at least we were acting that way outwardly.