It's the first 80 degree day of the year, there's not a cloud in the sky. The flowers are out, the birds are chirping, and there's a really great breeze coming in through our open windows. Everything around me feels vibrant and alive. Personally, I feel like I've been run over by a steam roller.
I haven't really gone into what a bad day is like for me, and I don't think most people understand what I mean when I say I'm having a bad day. So here it goes. I have absolutely no energy. Standing up requires a concentrated effort, and about 15 seconds of me psyching myself up for it. Walking feels like I'm moving my legs through drying concrete, and my pace is really slow. Stairs are almost out of the question. Going upstairs in our house (which is like 10 stairs up) requires a break about half way up. If I'm laying down, I almost need help sitting up. For those of you who've seen "The Princess Bride", I feel like I've been strapped to the machine that Wesley is tortured in that takes years of his life away.
There are a few reasons, I think for a bad day like today. I'm full of fluid, and won't be drained again until Tuesday. Being full of fluid means that I don't have much of an appetite. I've found that it's important for me to get a good 20-30 grams of protein early in start of my day. If I don't get that, I feel much like I do now. I couldn't eat that much this morning, making this the most likely culprit. The other problem, is the injection that stops the diarrhea is wearing off, and I've been cursed with that for the last few days. The diarrhea means that the little food I am able to get in, passes through too quickly to really make a huge difference. Hopefully by Wednesday or Thursday, this will all be in the past, and I'll be feeling relatively normal again.
Meanwhile, HB has been working her butt off today. I'm so thankful to have her, and her being willing to pick up all of the slack when I don't feel good. She let me nap in the hammock, which was wonderful while she was busy with some outside chores. I did start to get nervous with the turkey vulture zooming around overhead. Hopefully he was after something dead in the field behind me.
What a terrible day to be down and out. I was looking forward to today, and being outside with HB doing chores and having fun. It's days like today that really hit my optimism about this illness the hardest. I hope that this post doesn't scare you, or gross you out, it totally has the potential for that. I just wanted to share what my difficult days are like, because most of my posts seem to be cheerful and optimistic. Tomorrow is a new day, and hopefully it will be a bit better, that's how I look at it. Tuesday will be a long day, but will make things a lot better. Thanks for reading, and I hope to see you this next weekend at Rubbles. Here's some info if you don't know about it: http://www.facebook.com/event.php?eid=117339808343493
Sunday, April 10, 2011
Thursday, April 7, 2011
A full day already
What a morning. I woke up and had some coffee with the dogs before HB woke up. I watched some "No Reservations", the Montana episode to be exact. How beautiful that place is. I learned about the artist Russell Chatham and the writer Jim Harrison on the episode, and I instantly became fans of both. While HB was showering I spent some time looking at some of Chatham's paintings. I'm a big fan of his landscape work. I don't normally get art, but his speaks to me.
I spent some time with HB while she was getting ready, and made her lunch. This is really the best way to start any day, and I'm thankful for each and every one that I get with her. After she left, I made some cappuccino in the cappuccino maker that my parents gave me for my birthday (thanks mom and dad!), and took the dogs outside. What a gorgeous morning! It's hazy and foggy out, and the spring birds are chirping up a storm. The irises and crocuses are starting to come out, a sure sign that winter's grasp is finally starting to lose hold, and we'll soon see warmer days ahead. I love foggy, soggy mornings like this (it must be my Scottish heritage).
It's only 9:30 am, and I feel like I've had a full day of wonder and beauty and learning and closeness with loved ones. To make the day even better, I get to spend the rest of it with my sister who is visiting (when she finally decides to wake up). I have plans to make some bacon and eggs and hang out with her, which hasn't happened in far too long.
In medical news, I finally had my consultation for the shunt that will hopefully alleviate the fluid build-up. There are two options they are looking at. The first option, would be to re-route the vein that is blocked into another artery in my neck, thereby recycling the fluid back into my body. The second option is to place a spigot into my abdomen, that I can use to drain the fluid off myself. The doctors are going to discuss at the tumor board meeting, and decide which option would be best for me. Either is good in my book, although the first is more enticing. I think recycling would be better than having a spigot hanging out of my side.
I was in Alma briefly for a funeral yesterday. That was pretty tough. Randy donated a bunch of money in my name to Relay for Life. I liked Randy a lot, even though I didn't know him all that well. He was a kind guy, far more kind than most I meet, and he will surely be missed. Some day I'll see him again, and I'll get to thank him for his kindness.
Here's one of Chatham's paintings, called "Summer on the Clark Fork".
I spent some time with HB while she was getting ready, and made her lunch. This is really the best way to start any day, and I'm thankful for each and every one that I get with her. After she left, I made some cappuccino in the cappuccino maker that my parents gave me for my birthday (thanks mom and dad!), and took the dogs outside. What a gorgeous morning! It's hazy and foggy out, and the spring birds are chirping up a storm. The irises and crocuses are starting to come out, a sure sign that winter's grasp is finally starting to lose hold, and we'll soon see warmer days ahead. I love foggy, soggy mornings like this (it must be my Scottish heritage).
It's only 9:30 am, and I feel like I've had a full day of wonder and beauty and learning and closeness with loved ones. To make the day even better, I get to spend the rest of it with my sister who is visiting (when she finally decides to wake up). I have plans to make some bacon and eggs and hang out with her, which hasn't happened in far too long.
In medical news, I finally had my consultation for the shunt that will hopefully alleviate the fluid build-up. There are two options they are looking at. The first option, would be to re-route the vein that is blocked into another artery in my neck, thereby recycling the fluid back into my body. The second option is to place a spigot into my abdomen, that I can use to drain the fluid off myself. The doctors are going to discuss at the tumor board meeting, and decide which option would be best for me. Either is good in my book, although the first is more enticing. I think recycling would be better than having a spigot hanging out of my side.
I was in Alma briefly for a funeral yesterday. That was pretty tough. Randy donated a bunch of money in my name to Relay for Life. I liked Randy a lot, even though I didn't know him all that well. He was a kind guy, far more kind than most I meet, and he will surely be missed. Some day I'll see him again, and I'll get to thank him for his kindness.
Here's one of Chatham's paintings, called "Summer on the Clark Fork".
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