Heather and I got to go to Alma for almost a week for the holidays. It was a bit of a whirlwind. People to see, food to eat, and plenty of fun to be had. It was fantastic to spend time with loved ones. As cliche as it sounds, being presented with this diagnosis has really changed my perspective on everything.
It's crazy the things that held value to me before, and are now pretty meaningless. The seemingly meaningless things, that I took for granted, that mean a lot to me. Here's a simple list of small things that make me feel alive in a way that I've never before felt:
Good conversation
Laughter
The way onions burn your eyes when you cut them
Clothes fresh out of the drier
The way winter fog makes the trees sparkle in the morning
The sun peaking out of the clouds on a winter day
The way Pizza Sam's tastes in the restaurant
The calm in the morning when you're the first one up (this happens a lot these days, need to ask if this is a side effect of the cancer drugs)
Talking to my my mom one on one
Snuggling with HB (I've always appreciated this one)
Seeing little kids open Christmas presents
Good home cooked food
Hugs (this is also something I've always appreciated)
An ice cold glass of whole milk
This is by far, not a complete list, as every day seems to bring a whole new list.
While I was in Alma, my brother, Doug, said that he had something for me from one of his co-workers. I opened it up and found an amazing note, and this:
I almost broke down in tears in front of everyone at my Grandparent's house. This was so thoughtful, and just what I needed. It's now hanging next to my bed, so it's one of the last things I see at night, and one of the first in the morning. If you're reading this, Judy, thank you so much for the inspiring words and sharing a little bit of your hope with me.
When HB and I got home, there was a package in the mail from someone, I'm not sure who. It contained this T-Shirt:
Holy cow, this is AWESOME. I will definitely be wearing to my oncology appointment in a few weeks. Thank you secret Santa, whoever you are.
All in all, it was a great week, and thanks to everyone that I got to see, and also, and apology for those that I missed. I'll let you know when I'm in town again.
Thursday, December 30, 2010
Monday, December 27, 2010
Paracentesis
"A medical procedure involving needle drainage of fluid from a body cavity, most commonly the peritoneal cavity in the abdomen."
Here's the pictures I've been promising for a while. I'll post them as links, so that if you want to see them, you can, and if you don't, please don't click the links.
The before picture:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0147.jpg
Numbing things up:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0152.jpg
Trying to force the tube in:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0155.jpg
Wouldn't work, so out comes the scalpel:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0156.jpg
It goes in a bit easier now:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0157.jpg
Pulling some fluid off for testing:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0158.jpg
The 1 Liter bottle has suction, and things start streaming out:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0159.jpg
Well, it's in:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0160.jpg
Just lay back and relax:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0161.jpg
Another attempt at a different pocket:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0163.jpg
Losing suction:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0164.jpg
About 700 mL when all is said and done:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0165.jpg
Here's the pictures I've been promising for a while. I'll post them as links, so that if you want to see them, you can, and if you don't, please don't click the links.
The before picture:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0147.jpg
Numbing things up:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0152.jpg
Trying to force the tube in:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0155.jpg
Wouldn't work, so out comes the scalpel:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0156.jpg
It goes in a bit easier now:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0157.jpg
Pulling some fluid off for testing:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0158.jpg
The 1 Liter bottle has suction, and things start streaming out:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0159.jpg
Well, it's in:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0160.jpg
Just lay back and relax:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0161.jpg
Another attempt at a different pocket:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0163.jpg
Losing suction:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0164.jpg
About 700 mL when all is said and done:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0165.jpg
Wednesday, December 22, 2010
Alone with my thoughts
I'm going to be honest. Monday was pretty rough. It was the first day that I was alone, and it was really hard to not be up in my head all day. Luckily, I had a lot of phone calls to make and forms to fill out. This kind of helped to break up the time allowed in my head. My head can be a scary place. It seems to be filled with pitfalls and traps that slowly peck away at my optimism. I could feel all of this down-time slowly eroding away at my confidence.
I called Fran Mott, who heads up the Michigan von Hippel-Lindau Family Alliance. She's been a fantastic help with many things in the past few months. I hadn't had time to call her with my diagnosis. I filled her in, and she gave me a lot of hope, and restored much of my optimism. There are some trials going on at U of M and the National Institute of Health for my cancer. It's good to hear that, as my type of cancer is pretty damn rare. Fran has been an amazing help through all of this, and I'm so thankful to have her willingness to help me.
Tuesday was also a little rough. I had a bit if diarrhea, which is really frustrating. Things were good all through the hospital and continued to be good through the weekend. Luckily, it wasn't nearly as bad as it was before the hospital. I finished up my Christmas shopping and it sapped me. With things being normal, shopping normally kills me. I hate the crowds, I hate the traffic, I hate walking around the store not knowing where to find something. I was only gone a few hours, but I had to take a nap when I got home. Luckily that is over, and I shouldn't need to do any more shopping until after the holidays.
This post has been pretty dark, but I do have bright shining spot to report. My appetite was ravenous last night. I made some pasta with turkey sausage and red sauce for dinner, and I ate like it was my last meal. It was awesome. Heather and I watched the new documentary on Joan Rivers. If you haven't seen it, watch it, she's a fantastic comedienne. It's called "Joan Rivers: A Piece of Work".
Today is going to be getting ready to head to Alma for Christmas. I've got a busy day ahead of me, which is good for keeping optimistic. Hopefully, we'll be driving to Alma tonight. Sorry for the slightly dark post, hopefully this will be infrequent.
I called Fran Mott, who heads up the Michigan von Hippel-Lindau Family Alliance. She's been a fantastic help with many things in the past few months. I hadn't had time to call her with my diagnosis. I filled her in, and she gave me a lot of hope, and restored much of my optimism. There are some trials going on at U of M and the National Institute of Health for my cancer. It's good to hear that, as my type of cancer is pretty damn rare. Fran has been an amazing help through all of this, and I'm so thankful to have her willingness to help me.
Tuesday was also a little rough. I had a bit if diarrhea, which is really frustrating. Things were good all through the hospital and continued to be good through the weekend. Luckily, it wasn't nearly as bad as it was before the hospital. I finished up my Christmas shopping and it sapped me. With things being normal, shopping normally kills me. I hate the crowds, I hate the traffic, I hate walking around the store not knowing where to find something. I was only gone a few hours, but I had to take a nap when I got home. Luckily that is over, and I shouldn't need to do any more shopping until after the holidays.
This post has been pretty dark, but I do have bright shining spot to report. My appetite was ravenous last night. I made some pasta with turkey sausage and red sauce for dinner, and I ate like it was my last meal. It was awesome. Heather and I watched the new documentary on Joan Rivers. If you haven't seen it, watch it, she's a fantastic comedienne. It's called "Joan Rivers: A Piece of Work".
Today is going to be getting ready to head to Alma for Christmas. I've got a busy day ahead of me, which is good for keeping optimistic. Hopefully, we'll be driving to Alma tonight. Sorry for the slightly dark post, hopefully this will be infrequent.
Monday, December 20, 2010
Home
I was discharged Friday night. It's a fantastic feeling to know that you can go home. Being couped up in a hospital for a week, especially when you feel OK for the most part, is pretty rough. Heather had planned on staying at home another night, so when I got the news, I asked Dan McDonald if he wouldn't mind driving me home and hanging out with us. He said yes, which was really awesome.
Dan and I met up with Amber in Ann Arbor, but moved to Ypsilanti for dinner, as the Ann Arbor dinner crowd is pretty rough on a Friday night at 7:30. Ypsilanti was like a ghost town. We went to a place called "Smokehouse Blues". The rolls at this place are perhaps the best I've ever eaten. I ate a steak, some mac and cheese, and some garlic mashed potatoes to celebrate my discharge. Real food is hard to come by at UMHS.
We dropped Amber off at her boyfriend's gig and make the hour and a half trek back to Kalamazoo. It was a drive with great conversation and a lot of laughs. We made it home around 11:30, which is way past my bedtime. I ate some cookies, took a shower, brushed my teeth, and then slept in bed like a baby.
We woke up this morning and watched some Anthony Bourdain before we drove to Dustin and Carrie's house to rendezvous for a dog walk and some breakfast. Carrie had to work, so unfortunately, she couldn't come to breakfast with us. We made our way to a little greasy spoon place called "The Cooper Cafe". If you've never been, and are in the Kalamazoo area on a Saturday, you should go. On Saturday mornings, a local bluegrass group, "The Lonesome Moonlight Trio" plays. This, coupled with the hearty home cooking and friendly service makes for great food for your soul. It made me so happy to be there with loved ones that I nearly broke into tears.
We did some looking around at a Goodwill afterwards. The Goodwill was really busy, and the shoppers there were pretty rude. We left, with Dustin purchasing a terrible looking VHS tape that we're going to watch on New Year's Eve.
We went back to Dustin's and played some Tiger Woods on the Wii, which was a blast. We all then headed for home. Heather got a call from her realtor. She wanted to show the house on Sunday. The house was still fairly showing-ready, since we had cleaned up for one last Sunday when we went to the hospital, but due to snowy weather, they cancelled. We said yes, and Heather and I relaxed the rest of the evening.
We got up Sunday morning, made some egg, bagel, and cheese sandwiches, and watched some Reno 911. Heather and I started cleaning up the little bit, and had enough time to watch some Sarah Silverman Project before we had to leave for the showing. We walked the dogs in downtown Battle Creek, and made our way to Meijer to pick up some groceries.
When we got back home, we got a phone call from the realtor. The people loved the house. They are going to get pre-approval from the bank, and after the holidays they are going to put an offer in on the house! This is the best news we've had in a long time. We are definitely excited, especially Heather, who has had the house on the market for a few years now. We spent the rest of the night cuddling and watching stuff on Netflix, trying to recuperate from the previous week.
Today is my Dad's 60th birthday! Happy Birthday, Dad! I'm going to give him a call later. After that, today I need to finish some Christmas shopping. Going to the store always wears me out, though, even before the cancer.
I'm still feeling pretty good. My appetite is pretty ravenous now that the fluid is gone. My BM's are improving every day, and I still don't have any pain. The catfish are doing their job. They have big mouths, that stretch out into a permanent smile, and their whiskers are long and thick. They seem to be happy with their job, which is good for me, I guess.
I've got some pictures of the fluid draining, that I could post, but some may find them disturbing. Is that something you would like to see? Maybe if most say no, I could just send them to the ones that want to see them. Let me know.
Dan and I met up with Amber in Ann Arbor, but moved to Ypsilanti for dinner, as the Ann Arbor dinner crowd is pretty rough on a Friday night at 7:30. Ypsilanti was like a ghost town. We went to a place called "Smokehouse Blues". The rolls at this place are perhaps the best I've ever eaten. I ate a steak, some mac and cheese, and some garlic mashed potatoes to celebrate my discharge. Real food is hard to come by at UMHS.
We dropped Amber off at her boyfriend's gig and make the hour and a half trek back to Kalamazoo. It was a drive with great conversation and a lot of laughs. We made it home around 11:30, which is way past my bedtime. I ate some cookies, took a shower, brushed my teeth, and then slept in bed like a baby.
We woke up this morning and watched some Anthony Bourdain before we drove to Dustin and Carrie's house to rendezvous for a dog walk and some breakfast. Carrie had to work, so unfortunately, she couldn't come to breakfast with us. We made our way to a little greasy spoon place called "The Cooper Cafe". If you've never been, and are in the Kalamazoo area on a Saturday, you should go. On Saturday mornings, a local bluegrass group, "The Lonesome Moonlight Trio" plays. This, coupled with the hearty home cooking and friendly service makes for great food for your soul. It made me so happy to be there with loved ones that I nearly broke into tears.
We did some looking around at a Goodwill afterwards. The Goodwill was really busy, and the shoppers there were pretty rude. We left, with Dustin purchasing a terrible looking VHS tape that we're going to watch on New Year's Eve.
We went back to Dustin's and played some Tiger Woods on the Wii, which was a blast. We all then headed for home. Heather got a call from her realtor. She wanted to show the house on Sunday. The house was still fairly showing-ready, since we had cleaned up for one last Sunday when we went to the hospital, but due to snowy weather, they cancelled. We said yes, and Heather and I relaxed the rest of the evening.
We got up Sunday morning, made some egg, bagel, and cheese sandwiches, and watched some Reno 911. Heather and I started cleaning up the little bit, and had enough time to watch some Sarah Silverman Project before we had to leave for the showing. We walked the dogs in downtown Battle Creek, and made our way to Meijer to pick up some groceries.
When we got back home, we got a phone call from the realtor. The people loved the house. They are going to get pre-approval from the bank, and after the holidays they are going to put an offer in on the house! This is the best news we've had in a long time. We are definitely excited, especially Heather, who has had the house on the market for a few years now. We spent the rest of the night cuddling and watching stuff on Netflix, trying to recuperate from the previous week.
Today is my Dad's 60th birthday! Happy Birthday, Dad! I'm going to give him a call later. After that, today I need to finish some Christmas shopping. Going to the store always wears me out, though, even before the cancer.
I'm still feeling pretty good. My appetite is pretty ravenous now that the fluid is gone. My BM's are improving every day, and I still don't have any pain. The catfish are doing their job. They have big mouths, that stretch out into a permanent smile, and their whiskers are long and thick. They seem to be happy with their job, which is good for me, I guess.
I've got some pictures of the fluid draining, that I could post, but some may find them disturbing. Is that something you would like to see? Maybe if most say no, I could just send them to the ones that want to see them. Let me know.
Saturday, December 18, 2010
My last day at the hospital
Friday morning was pretty fantastic. I woke up with no Seymour Butts complaining, my nurse didn't forget to bring me some coffee that I'd asked for, and I didn't have to wake up to give blood for more testing. I watched some news, and poopsocked (played World of Warcraft) for a little bit before my shower. The nurses had told me that I would be going down to get some more fluid drained from my abdomen, but there wasn't a specific time for the procedure in the computer. I hung out some more, and Rocky dropped by with some cookies and to pick up his laptop. I went out to the parking garage (with the nurse's permission) to meet Rocky and walk him back to my room. While I was out, the transporters stopped by to pick me up for the paracentesis (fluid draining). Damn. Also, Uncle Tony showed up in my room.
I missed the transport, but they came back about a half hour later. I rode the gurney to the interventional radiology section and waited for the procedure to begin. While waiting, like I had done the at the previous day's testing, I visualized the catfish on my liver and kidneys, gently sucking away the bad cells. I was called in to the room where the procedure was taking place and met the physician's assistants that were doing my procedure. Like the rest of the people who did tests during the week, they asked about my tattoos, and then we got into discussions about various topics about food.
The procedure was over fast! They had pulled another 1.5 Liters of fluid from my abdomen in the amount of time that it had taken the doctor in my room to the equipment set up. I feel so much better. All-in-all, they pulled around 2.25 Liters, which they think would be about 10 pounds of fluid.
I got back to my room and hung out with Uncle Tony for a bit longer. He said that it was a marked difference in the appearance of my abdomen. I ate and ate and ate. I could finally eat more, I could finally breath better, I finally didn't feel like a balloon in the Macy's Thanksgiving Day Parade. It was awesome.
Uncle Tony left, and I watched some documentaries on netflix. Lizze stopped by my room for a little bit and we talked about a lot of stuff. We made plans to hang out with Nell on Saturday, if I were still there. Lizzie had to get back to work, so I saw her off, and continued with the documentaries.
Dr. Dawit and his attending doctor came to visit and let me know that I would be getting my first injection that night. I was really excited about that. I want to get this under way, and start fighting this abomination in my belly. They left, and the urology team came in to talk to me. They said that they want to biopsy my kidney, but they would do it outpatient and in a few weeks. They said that my right kidney appeared to have renal cell carcinoma, but they want to make sure. I guess some complex cysts can look like the cancer. If it ends up being the carcinoma, they'll want to look at removing my right kidney at some point down the line. Slightly distressing news, but one thing at a time.
I went and walked around for a bit, and somehow wound up in the chapel. I just sat there trying to take the whole week in. It's been surreal for sure. I knew that something was up, I just didn't begin to imagine how serious it all was. Luckily, they have a treatment plan in place, and I have the support of all of you and then some.
I got a call from the doctor on my floor, letting me know that I could be discharged that night if I wanted. I jumped on the opportunity to go home. I went back up to my room, where the Octreotide was waiting. I don't really flinch at needles, and very rarely do I find them to be really painful. This was different. This needle was huge, and went into my hip. It made me say "fuck" a little more loudly than I would have liked. My hip is a bit sore today, and I guess it will be like that for a few more days. A small price if it makes me better.
That's yesterday, I'll work on another post about today and post it tonight. Thanks again everyone. I love you all, and your support means the world to me.
I missed the transport, but they came back about a half hour later. I rode the gurney to the interventional radiology section and waited for the procedure to begin. While waiting, like I had done the at the previous day's testing, I visualized the catfish on my liver and kidneys, gently sucking away the bad cells. I was called in to the room where the procedure was taking place and met the physician's assistants that were doing my procedure. Like the rest of the people who did tests during the week, they asked about my tattoos, and then we got into discussions about various topics about food.
The procedure was over fast! They had pulled another 1.5 Liters of fluid from my abdomen in the amount of time that it had taken the doctor in my room to the equipment set up. I feel so much better. All-in-all, they pulled around 2.25 Liters, which they think would be about 10 pounds of fluid.
I got back to my room and hung out with Uncle Tony for a bit longer. He said that it was a marked difference in the appearance of my abdomen. I ate and ate and ate. I could finally eat more, I could finally breath better, I finally didn't feel like a balloon in the Macy's Thanksgiving Day Parade. It was awesome.
Uncle Tony left, and I watched some documentaries on netflix. Lizze stopped by my room for a little bit and we talked about a lot of stuff. We made plans to hang out with Nell on Saturday, if I were still there. Lizzie had to get back to work, so I saw her off, and continued with the documentaries.
Dr. Dawit and his attending doctor came to visit and let me know that I would be getting my first injection that night. I was really excited about that. I want to get this under way, and start fighting this abomination in my belly. They left, and the urology team came in to talk to me. They said that they want to biopsy my kidney, but they would do it outpatient and in a few weeks. They said that my right kidney appeared to have renal cell carcinoma, but they want to make sure. I guess some complex cysts can look like the cancer. If it ends up being the carcinoma, they'll want to look at removing my right kidney at some point down the line. Slightly distressing news, but one thing at a time.
I went and walked around for a bit, and somehow wound up in the chapel. I just sat there trying to take the whole week in. It's been surreal for sure. I knew that something was up, I just didn't begin to imagine how serious it all was. Luckily, they have a treatment plan in place, and I have the support of all of you and then some.
I got a call from the doctor on my floor, letting me know that I could be discharged that night if I wanted. I jumped on the opportunity to go home. I went back up to my room, where the Octreotide was waiting. I don't really flinch at needles, and very rarely do I find them to be really painful. This was different. This needle was huge, and went into my hip. It made me say "fuck" a little more loudly than I would have liked. My hip is a bit sore today, and I guess it will be like that for a few more days. A small price if it makes me better.
That's yesterday, I'll work on another post about today and post it tonight. Thanks again everyone. I love you all, and your support means the world to me.
Friday, December 17, 2010
A little update
Yesterday was crazy. I wasn't in my room for more than a half hour at any given point yesterday until after 9 pm. It was pretty exhausting. An ultrasound to find more fluid, a bone scan, an echo cardiogram, and an MRI. The worst was the MRI. I thought I was finally done for the night and was taking a little snooze after dinner. I was awakened by a strange man standing over my bed asking me if I was ready to go. I got whisked away to get the MRI, and was in the machine about 10 minutes later. If you've never had an MRI done before, it sounds like the worst techno music ever. They give you earplugs and place large foam pads over your ears to dampen sound, but it's still loud as hell. Not a good way to wake up. It's done now, and that's good.
I started another urinalysis last night, this time sans acid. They are just checking to make sure that my kidneys are functioning properly, which they seem to be. No pain, no blood where it shouldn't be, no frequent urination. I love having a forum where I can talk about gross stuff, but it's ok to talk about gross stuff.
I should be getting my first injection today. I'm really excited to get things under way and start beating this thing. I'm also getting more fluid removed from my abdomen. They expect to get another couple of liters of fluid out. I'll keep you all updated, but barring anything crazy happening, I should be out tonight or tomorrow. Hooray for a real bed and real food.
I started another urinalysis last night, this time sans acid. They are just checking to make sure that my kidneys are functioning properly, which they seem to be. No pain, no blood where it shouldn't be, no frequent urination. I love having a forum where I can talk about gross stuff, but it's ok to talk about gross stuff.
I should be getting my first injection today. I'm really excited to get things under way and start beating this thing. I'm also getting more fluid removed from my abdomen. They expect to get another couple of liters of fluid out. I'll keep you all updated, but barring anything crazy happening, I should be out tonight or tomorrow. Hooray for a real bed and real food.
Thursday, December 16, 2010
The whirlwind morning
So, it's only 9 am, and I've already had an ultrasound and been injected with a radioactive dye for the bone scan. The scan comes at 1 pm today. I spent about 20 minutes in a room by myself in the basement, waiting for the pharmacy to get the dye to me. I spent that time meditating, visualizing catfish swimming over my organs, eating the bad cells, and pooping out healing cells. This was recommended by Heather, who has a book I'm going to read about visualizing the bad cells getting destroyed. Heather told me about a guy who didn't like the visualization of sharks eating the cells, because he was afraid of sharks and thought it was too violent. He liked to visualize catfish, because the feed off the bad stuff in the bottom of lakes and rivers. That seems like a great analogy, so that's what I'm going to use. It's also really peaceful and calming to visualize the fish, sort of like staring at a fish tank.
Just had my picc line changed. Apparently they can't stay in for more than 4 days. Unfortunately, I have wiggly veins, so after being poked about 8 times, she decided to move to another spot. Human pin-cushion. Breakfast awaits. More later.
Just had my picc line changed. Apparently they can't stay in for more than 4 days. Unfortunately, I have wiggly veins, so after being poked about 8 times, she decided to move to another spot. Human pin-cushion. Breakfast awaits. More later.
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