Hey all. I had another appointment on the 25th, this one being my first appointment in the Medical Oncology Clinic. I met with Dr. Khan and her fellow Dr. Parkin. Things appear to be going pretty well. Dr. Khan wanted me to try and find a trial being run by the National Institutes of Health, but the only study currently being done for neuroendocrine tumors from VHL was being done in France. Unfortunately, you have to be a French citizen, because I totally would have gone.
We're starting to get some direction in where the treatment will finally be heading. There are two possibilities right now. The first is called a Y-90 procedure. Dr. Khan will be taking my case before the tumor board at U of M on the 1st of February to determine if I'm a good candidate for this procedure. Basically, the liver doesn't handle radiation therapies very well, so they can't just bombard the area with traditional chemotherapy or radiation. This procedure would involve them placing little polymer balls that have been irradiated with the Yttrium-90 isotope directly into the blood vessels supporting the tumors. This would minimize radiation to the healthy liver cells, and target just the tumors. The problem with this procedure, is that my liver is a bit like bubble wrap. The tumors are spread throughout the entire liver. This could pose problems because there's just a lot to deal with, and they don't want to put too much radiation into the area.
The next option, is to give me the drug that they are using in the trials right now, but in an un-protocoled manor. The drug is called Sunitinib. Here's a link to the information on the drug. From what I am told, they are having pretty great success treating and killing neuroendocrine tumors with this drug, in combination with the current injection I am receiving (Octreotide). The drug works by blocking the protein the causes the tumors to grow out of control. This protein is not normally created by regular folks, but the gene associated with VHL is corrupted, and allows my body to make plenty of it. Apparently the side effects aren't very bad at all; some occasional diarrhea, fatigue, and dizziness appear to be the most commonly complained about side effects.
I'll know more on the 2nd, most likely. It will definitely be good to have a plan in place. While in the clinic, Dr. Parkin answered a litany of questions. I should start a small exercise regimen. I should be eating normally. It's ok to have a beer every once in a while. The Doctors weren't too happy with the effectiveness of the diuretics. They gave me a standing order to get a paracentesis done whenever I need one. I can just call them up the day before, and go get this stuff drained. This is awesome because I won't have to have a few weeks of agony before letting some pressure off. Dr. Khan is also going to bring this problem up with the tumor board, and talk about possibly putting in a catheter so that I can drain things myself.
I've been having a lot of nights where I toss and turn, and wake up every few hours. I asked about this, and they prescribed me some trazadone to help with sleep. I took one Tuesday night, and felt like I was in a fog all day on Wednesday. I'm going to try taking a half pill tonight and see if that does any better. They also set me up with a referral to psychological oncology. I'm excited, because as Dr. Parkin said, "Really, everyone ought to just have someone to talk to". They might be able to help me with the sleep thing a little bit better, as well.
Having all of this happen has really changed how I live on a day-to-day basis. Really, that's just it. I just take things on a day-to-day basis now. Every morning I wake up, and I thank God that He gave me another day. Every night I ask Him if I could have another. I find it really hard to dwell on long-term things, with the exception of getting better. It really is a lot easier to manage things like this. I mean, realistically, I could get hit by a car and die tomorrow, anyway. God gave me another day, another day to have with Heather, to have with my friends and family. I'm finding it hard to be anything but grateful for that.
Alright, enough of that. I have more appointments on the 15th, but I may see if I can get my paracentesis bumped up a week, because things are starting to get to the uncomfortable stage. I'm excited to find out what the plan of attack is really going to be, and start beating the crap out of this thing.
Thursday, January 27, 2011
Saturday, January 15, 2011
Hail to the Victors!
Sorry for the delay in posting lately. Everything has been pretty calm lately, but I have appointments to go to now, and things should start picking up in the news department. But first:
Hail! to the Victors valiant,
Hail! to the conquering heroes,
Hail! Hail! to Michigan
the leaders and the best!
Hail! to the Victors valiant,
Hail! to the conquering heroes,
Hail! Hail! to Michigan
the Champions of the West!
Say what you want about University of Michigan athletics, their hospital systems can't be touched. They have been so fantastic throughout this journey.
I went for my first Urological Oncology appointment on Friday. I actually left on Thursday, and Rocky and Keegan were kind enough to put me up for the night, so that I didn't have to leave at 5:30 Friday morning. Keegan made me one of the best casseroles I've ever had. It was comfort food on a whole other level.
I made it to my appointment, and as some of you may have seen, I spent 2 hours in the exam room before I was seen by the doctor. Dr. Hafez is a really cool Urologist, very matter of fact, but in an encouraging way. He wants to do a partial resection of my right kidney, but wants to wait and see what happens with my liver first.
The last week or so, I've been considerably uncomfortable due to fluid building up in my abdomen again. I explained this to him and he consulted with my Medical Oncologist, Dr. Khan. They share a clinic together, and Dr. Khan is on the floor that I was on when I was diagnosed. She was en route to be at the floor, and together with Dr. Hafez, decided that the best course of action was to admit me, so that she could see me right away, and I could get tapped again.
What's one more night at the Hospital? So, they admitted me again, on the same floor that I was on previously. I was seen in radiology right away to get tapped, which was awesome. 3.5 Liters this time! Holy crap. No wonder I was a grumpy and miserable bastard last week. I was done with this around 4:30, and spent the rest of my night confined to my bed with an audio book.
I woke up this morning at 5:30, and had some more blood drawn around 6. These were labs looking at my liver function, to make sure that nothing had gone south. The residents came in around 9:30 to check me over, and let me know that the team would be in around 11 to fill me in on the results, and start the paperwork to let me go home.
Dr. Khan came in and let me know that my liver functions were better! Holy Chuck Mangione. I'm definitely not out of the woods yet, but after just one injection, my liver is getting better! With this knowledge, Dr. Khan wants to start treating things a bit more aggressively, and wants me to start by trying to get involved with a trial at the National Institute of Health in Bethesda, MD. She said that there is one drug, that's shown to stop tumor growth, and in around 15% of cases actually shrink the tumors, but she doesn't want to start me on that right now because it could potentially disqualify me from a trial. Hail to the conquering heroes, indeed.
She wrote me a prescription for a diuretic, to try and reduce the fluid build up in a more conservative manner. She's worried that each time they tap my abdomen, there's always a slight risk of infection, and thinks that it might be managed better with a pill. Some more good news, is that I can take over the counter pain relievers again! I was told to avoid all of them before, because they're either processed via your liver or your kidneys, but with the functions improving, I'm OK to take any of them.
I have another appointment on the afternoon of the 25th, which will evaluate how the diuretics are doing, and to reassess my liver functions. I have another CT scan scheduled for March, which will be the first look at how the tumors are responding to the octreotide injections. I'm excited for that. Oh, I got my second injection today as well, so if you see me in the next few days, you'll know why I'm limping. Man, that hurts.
I think that's all I've got for now. Thanks everyone for your prayers, and thoughts, and good vibes, and notes, and hugs. You are all my inspiration for fighting this thing, and those types of things help me to fight harder.
Hail! to the Victors valiant,
Hail! to the conquering heroes,
Hail! Hail! to Michigan
the leaders and the best!
Hail! to the Victors valiant,
Hail! to the conquering heroes,
Hail! Hail! to Michigan
the Champions of the West!
Say what you want about University of Michigan athletics, their hospital systems can't be touched. They have been so fantastic throughout this journey.
I went for my first Urological Oncology appointment on Friday. I actually left on Thursday, and Rocky and Keegan were kind enough to put me up for the night, so that I didn't have to leave at 5:30 Friday morning. Keegan made me one of the best casseroles I've ever had. It was comfort food on a whole other level.
I made it to my appointment, and as some of you may have seen, I spent 2 hours in the exam room before I was seen by the doctor. Dr. Hafez is a really cool Urologist, very matter of fact, but in an encouraging way. He wants to do a partial resection of my right kidney, but wants to wait and see what happens with my liver first.
The last week or so, I've been considerably uncomfortable due to fluid building up in my abdomen again. I explained this to him and he consulted with my Medical Oncologist, Dr. Khan. They share a clinic together, and Dr. Khan is on the floor that I was on when I was diagnosed. She was en route to be at the floor, and together with Dr. Hafez, decided that the best course of action was to admit me, so that she could see me right away, and I could get tapped again.
What's one more night at the Hospital? So, they admitted me again, on the same floor that I was on previously. I was seen in radiology right away to get tapped, which was awesome. 3.5 Liters this time! Holy crap. No wonder I was a grumpy and miserable bastard last week. I was done with this around 4:30, and spent the rest of my night confined to my bed with an audio book.
I woke up this morning at 5:30, and had some more blood drawn around 6. These were labs looking at my liver function, to make sure that nothing had gone south. The residents came in around 9:30 to check me over, and let me know that the team would be in around 11 to fill me in on the results, and start the paperwork to let me go home.
Dr. Khan came in and let me know that my liver functions were better! Holy Chuck Mangione. I'm definitely not out of the woods yet, but after just one injection, my liver is getting better! With this knowledge, Dr. Khan wants to start treating things a bit more aggressively, and wants me to start by trying to get involved with a trial at the National Institute of Health in Bethesda, MD. She said that there is one drug, that's shown to stop tumor growth, and in around 15% of cases actually shrink the tumors, but she doesn't want to start me on that right now because it could potentially disqualify me from a trial. Hail to the conquering heroes, indeed.
She wrote me a prescription for a diuretic, to try and reduce the fluid build up in a more conservative manner. She's worried that each time they tap my abdomen, there's always a slight risk of infection, and thinks that it might be managed better with a pill. Some more good news, is that I can take over the counter pain relievers again! I was told to avoid all of them before, because they're either processed via your liver or your kidneys, but with the functions improving, I'm OK to take any of them.
I have another appointment on the afternoon of the 25th, which will evaluate how the diuretics are doing, and to reassess my liver functions. I have another CT scan scheduled for March, which will be the first look at how the tumors are responding to the octreotide injections. I'm excited for that. Oh, I got my second injection today as well, so if you see me in the next few days, you'll know why I'm limping. Man, that hurts.
I think that's all I've got for now. Thanks everyone for your prayers, and thoughts, and good vibes, and notes, and hugs. You are all my inspiration for fighting this thing, and those types of things help me to fight harder.
Thursday, December 30, 2010
Home for the Holidays
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.
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.
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.
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