Year of Hell

Wasn’t there a Star Trek Voyager episode titled similarly? If I remember correctly, it was quite a hellish year for them as well…although blissfully they were able to erase that long tragic year by the destruction of some ship or another and began anew. If it were only that easy? But I’m hoping that with the New Year, we too will begin anew. No exploding ships here to erase this hellish year, but I still hope to put it behind us. The rebirth of the New Year in itself gives me hope and the strength to begin again.

December 16th David was hospitalized once again. He was in pretty bad shape. The C-diff had come back for a 3rd time and basically his system hadn’t recovered from the first two bouts and it took him down completely. Although he was still on two antibiotics for it, they didn’t seem to be even touching it. I learned later that this particular chemo that David is on kills double dividing cells or some such. So, it’s quite effective against Cancer but unfortunately the colon has the highest number of double dividing cells occurring naturally as well. So basically, the chemo is doing a number on his body as well as the Cancer. But anyways the C-diff was back and we were going down the road to dehydration. I wanted to try and catch it before it became as critical as last time and he ended up in ICU with possible organ failure again.

We took him in and initially they gave him fluids in ER and then sent him home. He took a nap and when he woke up I informed him that we were going back. He looked ill. Extremely ill. We went back in and they admitting him and he ended up staying in the hospital 9 days until he was released Christmas Eve. The first day was filled the usual flurry of testing and what not. They were still concerned that he was not and has never tested positive for C-Diff and through the extensive testing, they discovered that not only did he have C-diff but also he had an extremely nasty gram negative bacteria in his blood called Klebsiella. He began a third antibiotic for that and only until a few days later once it was under control did I find out how deadly that virus was. It can take down the most healthiest of immune systems and if gone untreated is deadly. Lovely. Of course they have no clue how he contracted it, but I have a few ideas about that as well. It had to be injected directly into his blood stream, and since the only poking, prodding and injecting going on was in the hospital…you do the math. But his body responded well to the drugs and the doctors were extremely surprised but happy to see it gone so quickly. The C-diff on the other hand continued to persist. Dave had a whole bevy of doctors on his team. He had Medical doctors; GI doctors and then Infectious Disease were brought in as well. Of course, each set of doctors would insist he didn’t have C-diff and that it was the chemo and that he needed to go off of it. I would then ask if they had contacted David’s Neuro-Oncologist. Of course…none of them had and there was no way in hell he was going off of the Chemo until his oncologist concurred. And they would get a bit belligerent and then one by one they would end up proving that it was in fact NOT the Chemo. More tests were run and those pesky pseudo membranes were found once again…and not just a few. Hundreds were in his colon. That pretty much tied it up for the GI team. It’s C-diff. Infectious disease were an entirely different story though. Most of them were total pricks. I’m sure they were extremely competent in their fields, but their people skills sucked. They tried to take David off his chemo as well and at one point I got extremely irate with one of them when I found out that they pretty much had intentionally kept David’s oncologist out of the loop because he was insisting the big D wasn’t the chemo. The Infectious Disease guy said that David had only been off his chemo for 2 weeks the last hospitalization and that they felt that he needed to be off of it for a much longer period. That was it for me. They weren’t communicating with the oncologist and yet they felt it was a good idea to “test the theory” that the chemo was causing the symptoms by taking him off it for say, one month or two? I finally asked him if he had ever fully read David’s file? And that if he understood that if he took David off this particular chemo for let’s say…2 months, that the C-diff was going to be the least of our worries. He stopped talking then. And I told him we weren’t going to discuss this again until we got a call directly from our oncologist. And in the end, it wasn’t the chemo. I have no clue why, and it gals Infectious Disease to no end, but his C-diff doesn’t test positive.

Christmas Eve David was released. He is by no means healed, but he’s better and it’s more under control and his team of medical doctors felt that the same protocols he was getting in the hospital could just as easily be administered at home. And the longer he remained in the hospital, the longer he was at risk for contracting something else. I really like the medical team. They and the nurses were absolutely amazing. I bitch about the wacky shit that went on. But there were a ton of extremely good doctors and nurses on David’s case as well. And they watched out for him and went way beyond the call of duty to keep him safe, healthy, comfortable and happy.

So here we are once again. Our heads aren’t held quite as high as they once were. Honestly, we’re both having a tough time. This truly has been the year of hell for us. Ironically enough, 2006 was easier even with the coming to terms with the fact that Cancer was now an unwelcome part of our lives. This has been hell and David has said on more that one occasion that these battles with the bacteria have been harder on him than the Cancer. I know that he wouldn’t even be having these if he weren’t for the Cancer…but they have had a devastating effect on his body. One nurse told us that every day spent in the hospital, it takes your body 1 week to recover. He was in a hell of a lot this fall and it’s taken its toll. It’s affected his strength and his immune system. But worst of all it’s affected his hope and determination. Somehow we’re both trying to put all of this behind us and move forward. But we’re tired. Tired of the C-diff. Tired of all meds. Tired of it all.

Sometimes I lay in bed and watch him sleep and wish that life was more like the movies. I wish we could ram that ship into some time vortex thing just like they did in Voyager and it could all be reversed. All of this crap would just go away and we could have our life back. We could be like the people we see on the streets. Living a life without fear and sickness. But although we have and always will have a fairytale-like love…the rest can’t be wiped away. Cancer is part of our life right now. Not to say it will be forever. But it will be here for today and probably tomorrow. So, somehow we have to move beyond this year and wrap one another in our love and hope. And somehow rise above all of this like a Phoenix from the ashes and begin anew. New years are for new beginnings, right? Here’s to a new year filled with hope and good health.

Winter Wonderland?

Well, I’m not sure where to begin this post. A lot has happened in the last month. As for the fluid on David’s brain…that seems to be going well. He has been getting regular scans and they tend to show either no-change or a slow recession of the fluid. This was expected and as long as it continues to slowly go down, the surgeon is happy. And if the surgeon is happy, I’m happy. This process may take months and months. Unfortunately, until the fluid has completely dissipated, David’s lifting restrictions will be in place. No more than 5-10 lbs. Dave’s not altogether thrilled but I told him that although it sucks…it’s a minor price to pay if he doesn’t hemorrhage again and end up in the hospital.

As for other health issues, the big “D” seems to have reared its ugly head once more. It’s not as bad as before and once Dave started showing strong signs of it, we tried to be as proactive as possible. About 2 weeks ago Dave ended this really expensive, but obviously extremely effective antibiotic. Within a couple days of going off of it, he started showing the beginning signs of C-diff again. Dave hoped it was just a bug…but by Friday it was apparent it wasn’t. We called the doctor and after a lot of hoo-ha that I won’t even go into here, they prescribed the pricey meds once again. Just to give you an idea, with insurance it’s $1,200 a month and without its $3,000 a month. Insane. Seeing as he very well may be on these pricy little gems for awhile we looked into doing mail order which cuts the cost enormously. The assistant had never done this before and it ended up quite the mess. We got that straightened out, but then we didn’t realize mail order drugs through our insurance takes up to 5 days to process. So, although we were having them overnighted, we still might not see them for a week. We ended up calling back the doctor to get a 5 day prescription from a local pharmacy to get Dave through until the rest came. The insurance promptly declined this scrip because we already had a prescription pending for this medication and they don’t really care how long it takes you to get it or if there are shipping issues. I was so pissed. We’re trying to be proactive so Dave doesn’t end up in the hospital once again, which intern will save them boat loads of money. But…in the end we ended up getting a 3-day supply of the meds at full cost…which ended up being over $300. Lovely. But it will be worth it if we can keep this nasty bacteria at bay.

The mail order stuff arrived yesterday and now we’ve got a 3-month supply. Hopefully David will begin to feel better soon. He’s not severely dehydrated…but I’m sure he is a little bit. He’s exhausted all the time. He runs a low-grade fever intermittently and all and all feels like crap. He has really good moments and then really tired moments. But his body is going through a lot and he’s back at work and I’m sure that’s taking its toll as well. We’re just trying to make sure he’s rested and getting as much food as he can muster in him.

As for me? Who knows. I’m tired. I’m extremely tired.
It’s been the longest year and half of my life and some days I feel like I will never see a light at the end of all this madness. Like Dave, I try to keep my spirits up but some days it’s harder than others. I hate seeing David so sick and pale and it’s just tearing me up inside. I feel helpless a lot. I feel sad sometimes. I feel angry sometimes. But I just keep trying to move forward and keep the family going and barrel ahead towards the light at the end of this damn tunnel. All the snow and winter drearies hasn’t helped either. We invested in a snow blower this fall, and it’s the best investment we ever made. Due to David’s weight restrictions, all of the snow blowing and shoveling has fallen on me. “Bessie” is a work horse and she’s helping save my back. Yes, I’ve named the snow blower. You may laugh, but we’re bonding out there! But Bessie has been awesome and made this whole winter wonderland a bit more wonderful and a bit less messy.

As for the other stuff going on in our lives? I know, it’s hard to believe but we actually have a life beyond all this crap. At least we try. Alec’s birthday party was last weekend. He shared it with his best buddy Matthew and they had a blast. We held it at Pump It Up again this year. It’s amazing what a difference a year makes at this point. Last year they needed help getting on pretty much everything and this year they were running amok and climbing, sliding and jumping all over. Some needed help on the big slide or rock wall, but that was about it! Alec was so excited about having cake and blowing out candles…he talked about it for 3 weeks before the party. I ended up making a dinosaur volcano cake which turned out pretty cool looking. It was quite the pain in the ass though. I’m not becky-homecky by any means…and so me baking a cake was quite entertaining. Icing it was even more so. Thankfully there was red lava glaze and dinosaurs all over to mask the wacky icing underneath. I’ll try to get a picture of the cake uploaded this weekend.

The other big event in the household right now is Christmas! Alec is so excited. He seems to get the concept of Santa and talks about him all the time. The other day he informed me that Santa was going to be bringing him new dinosaurs. Really, I said? News to me! I better get on that! We also got a neat antique looking advent calendar to count down the days to Christmas. Alec is so excited about it that it’s sometimes the first thing he says when he wakes up in the morning. He wants to go check that calendar! So, although things could be going much better…we’re getting by. We’re trying to enjoy the holidays and quiet times at home. The house is all decked out and that seems to raise everyone’s spirits. The magic of Christmas! It can heal. I truly believe that. No chocolates as of yet, but I have the supplies and hope to make them later in the month. They may not be done by Christmas…but that doesn’t matter. They’ll taste just as good as New Year’s chocolates!