Sunday, January 1, 2012

January 1, 2012 - Day 92



6 months, 3 weeks, 6 days since diagnosis

We brought our cats to my parents :) I knew I missed them but I had no idea just how much they missed us. I also didn't know how good it would feel to have them back with me.

I have had Elliot for over 10 years. I've been with him longer than I've been with my husband. Jon's always called him my "therapy cat." He's more like a baby to me than just a cat. We cuddle and sleep together and he's usually close by whenever I'm around. We got Emma shortly after Jon and I got together and the two are a bonded pair. Emma definitely favors her daddy but she loves the rest of us, too.

Jon and I argued quite a bit about whether or not we should bring them. My parents already have a cat. Would it be too stressful on our cats? Would it be too stressful on their cat? Would it be too stressful on an already stressed out household. But I wanted them here. Every time I would stop by the house to say hi, they would snub me and run away. I missed them sooo much.

So, we stuffed the 15 lb cats together into the worlds tiniest cat carrier and brought them here.

It was amazing how they instantly adjusted. To me, it was obvious that they missed the babies. They both wanted to be close to Valentine and Riker. How it must have felt to them.... 6 months ago, Riker left and never came back. I only spent occasional over nights. Then, 3 months ago, we disappeared altogether. Finally, a month ago, Valentine disappears. Jon's only home long enough to feed them or give them medicine.

They seem at peace here and I feel like I've found a small piece of my sanity. They still haven't really gone downstairs since there's another cat down there... and my parents' cat still hasn't dared come up here since their arrival... but I think they'll all adjust very quickly... already have.

December 30 & 31, 2011 - Day 90 & 91

6 months, 3 weeks, 5 days since diagnosis

2011 is finally over. This has been the longest and most incredible year of my life. I welcomed new life into this world and nearly lost it. I am not sure that I can even begin to articulate the profound lessons that I have learned this year. I can say, though, no matter what your current circumstances, you could always always always have it worse.

One of the things I have learned is to make today count. Learn from your past and plan for the future but live for today. So, instead of thinking and dwelling on the lessons of 2011, I am trying to look forward to 2012. In 2012, I will try to live every day for today. I will appreciate every one of the 366 in the up coming year as a gift. Because, they are.

And today, that gift includes my family under one roof. Everyone is "healthy." And the biggest gift of all.... we have all have a 2012 and beyond to look forward to :)

December 29, 2011 - Day 89


6 months, 3 weeks, 3 days since diagnosis

My poor baby has been having Ativan withdrawals. After the suggestion of a friend, I did a little research on the internet last night about benzodiazepine weans. Typically, you don't want to reduce the dose by anymore than 10%. Riker's was reduction from .13 ccs to .1 ccs was closer to 25%. I am so glad that I was encouraged to read up on this - the list of side effects is long and painful. They are also nothing like what was casually described to me by the doctors. benzo withdrawals are nothing like narcotic withdrawals! I had no idea what I was looking for!

At clinic today, Riker was given an IV dose of Ativan and she was almost instantly back to her normal self. She's exhausted and moody but I am confident that she'll be happy after she can get some sleep. We've upped her dose significantly to confirm it is the issue. She'll be on .2 ccs 4 times a day and her original dose was .13 ccs 3 times a day. We're making one change at a time so that we can slowly troubleshoot her issues.

I have to say, I didn't realize how much I love Riker's primary oncologist here in Maine. Her team in Boston is fantastic and I love them, too. However, Stanley and Leslie are VERY different and I appreciate the careful, deliberate nature that Stanley has. They both make me feel heard and now that most of our appointments will be in Maine, I'm grateful that Stanley will be working hard to figure out what is going on with Riker so that we can come out of this as normal and whole as possible when it is all over.

Last week, we'd talked in Boston about getting early intervention in to help Riker with meeting her milestones. Today, Stanley mentioned he wanted to see her with physical therapy, occupational therapy, and speech therapy. He was more concerned about her eating and not relying on the g-tube. We've got a lot of work ahead of us.

Riker's weight continues to be great and he agreed to let me cut out one of her 5 feeds daily. If she starts losing, we can always add it back in. This way, at least she'll have the opportunity to get hungry. Really, the only "normal" thing that Riker does for her age is sit up. She's making no attempt at moving around and rarely even bares weight on her legs. She's not babbling much, either. She did so well through her chemo but the transplant has really set her back. She'll be a year old in less than 2 months!

It's nice to be worrying about these things, though. We're finally able to look to a future and try to plan for it. One day at a time, Riker will progress. Getting her to consistently feel better is the first step. When she spends less time crying, she can spend more time learning :)