Tuesday was a pretty crazy day. Heather and I left for the hospital at around 5:30 in the morning. I had an appointment to get the ascites drained at 8 am. They pulled 9 liters out of my abdomen. 9 liters. That's almost 2 and a half gallons of fluid. In a matter of an hour and a half, I lost 20 pounds. It felt amazing to have that much fluid removed, but I paid for it the rest of the day. The analogy the doctor gave me was that my organs were suspended in the fluid, much like a baby is suspended in the embryonic fluid in the womb. When the fluid is gone, my organs are then much heavier, and sag. I felt like I had been punched in the stomach a few hundred times. I feel much better now.
I then had some blood work done, and we moved on to my oncology appointment, with Dr. Khan. Dr. Khan has always been a little cold. She's always been very direct and honest, but to the point, and not very empathetic. This appointment was much different. She was warm and caring. She answered my questions, and made me believe that she really does care about what is going on with me. Dr. Khan told me that I shouldn't worry about my diagnosis, that it's her job to worry about the cancer, and I should just worry about getting the most out of each and every day. She said that no one knows how much time they really have left, and that we should all live like today is our last day. I can't say that I can fully put all of that worry on her, but, the burden was definitely lessened. I'm very, very lucky to have Dr. Khan on my case.
The fluid build up is being caused by a few things. First, my portal vein, (which isn't really a vein in the traditional sense) is being hampered a bit by a tumor. The portal vein brings blood from the intestines and spleen and dumps it into the liver to be cleaned. When the portal vein is stressed, it causes ascites to build up. Another issue is that my salt intake is way too high. I need to be consuming less than 2000 mg of salt per day. A quick study of things around the house shows that a lot of the pre-packaged food that I've been eating is really high in sodium. For instance, the pop tarts that I sometimes eat for breakfast or a snack, are around 1/4 of my sodium intake for the day. A can of tomato soup that I have in the cupboard is nearly 3/4 of my sodium allowance. I'm going to have an interesting time coming up with affordable, high calorie meals that are within my sodium budget.
Dr. Khan also prescribed me another diuretic to take on top of the one I'm currently on. I have noticed the difference already- I definitely use the restroom a lot more, and I produce more when I do. Sorry, that's pretty gross.
My treatment plan is currently in place, which is definitely the most exciting news of all. The tumor board doesn't think that I'm a good candidate for the radiation therapy Y-90 procedure that I mentioned in a previous post. They placed me on a drug called "Sutent". As far as drugs go, this is fairly cutting edge, as I understand it. The drug blocks the protein that allows new blood vessels to grow inside tumors. Most people have this in their genetic code, but the disease I have, von Hippel-Lindau disease, has a mutation in that gene. This tells my body to allow blood vessels to grow inside tumors as much as it wants. They hope that this will both stop the growth of tumors, and also shrink the current tumors.
The side effects of this drug are pretty much the same that you'd expect with chemotherapy. Nausea, vomiting, diarrhea, dizziness, fatigue, and hair loss. They say the side effects are pretty rare though. Dr. Khan also increased my dosage of the injection I have been getting. Now, instead of one shot that feels like a tetanus shot, I get two, in both butt cheeks. This makes walking a bit uncomfortable, but already, the stiffness is starting to subside. So Sutent also costs $8500 per month. Luckily, they hooked me up with an application to get the drug for free from the drug company, and gave me my first month on good faith that I'll get the grant. That's $102,000 per year. Holy shit. Hopefully the grant goes through.
My blood work came back great! I had one liver enzyme that was a little elevated, but still not outside of the normal range. Since this hasn't been elevated before, they seem to think that it was due to the fluid pressing on my liver and causing a bit of stress.
It was definitely a long day, but a good day overall. I'm so glad that Heather was able to come with me, and meet Dr. Khan. I'm glad that she was able to drive, because there was no way I was in any shape to make the two hour trek back to Kalamazoo. Thanks to Dustin and Carrie for allowing us to crash at their house, and for watching the dogs for us. You two have been an amazing ally for Heather and I.
That's all I've got for now. I'll post a picture of the receipt for the sutent a little later.
Thursday, February 17, 2011
Thursday, February 10, 2011
Thursday, January 27, 2011
First Medical Oncology Appointment
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.
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.
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.
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