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.