So I talked this morning about my trip to Ann Arbor. I mentioned the long day, and the bowel sucking of the paracentesis. What I did not mention is how a paracentesis makes you feel. The first thing I should note, is that yes, it does make me feel lots better, but there is always a price. When I get done, the first thing I notice is the weight loss. 4 liters is roughly 10 pounds of fluid. When I stand up, my abdominal and back muscles aren't used to the extra weight being gone. It's sort of like when you get done roller skating, and your feet still feel like they're being weighed down. I can't help but sort of stoop for the first hour or so, until my muscles can readjust to the new weight and dimensions of my body cavity.
Another thing of note, is that draining that much fluid from your body is not necessarily good for it. It freaks your kidneys out to lose that much water from your body. In some cases, they need to put you on an IV of albumen to replace the proteins in your blood stream. I've never had to have this. What I can say is that when I stand up I feel like I just woke up from a long nap, but I didn't get any sleep. I'm a bit light-headed and definitely weaker than I was before I had the fluid removed. When they suck up your bowels, it causes them to cramp for the rest of the day.
Well, all of this was just to prep you for my trip to Walmart today. On top of still being really crampy from the bowel sucking, I had 2 shots, one in each butt cheek. The octreotide injections are a bit like tetanus shots, in that they make the affected area sore for a few days. Today, I was really sore. I could walk, but I was slow, and I was also pretty fatigued. I need some staple groceries, but I knew that the things I needed were pretty spread out around the store. I was pretty embarrassed, but I asked the greeter if I could use a motorized cart. You should all know that I have a pretty good stubborn streak, but I also know my limits. Maybe the prideful solution would have been to wait another day to go to the store. The greeter kind of scoffed at me, like I was some punk kid who just wanted to screw around with the cart. Reluctantly, he led me to the nearest cart, and unplugged it for me.
I proceeded to do the most embarrassing shopping of my life. I got dirty looks from everyone. I don't look that sick, and really I'm not, I was just having an exceptionally bad day. People cut me off like crazy, little kids stared, and couples muttered to themselves as I passed by. I made my way back to the checkout with some milk, cream, frozen fruit, dried milk, and olive oil. When I got to the check out, the clerk scoffed, and flashed a skeptical look to the patron in front of me. I unloaded my goods onto the conveyor belt. The clerk began to scan my items without even saying hello. I asked how she was doing and she replied, "Good". That's the only exchange of words we had. I began to make my way outside, following behind a woman in another chair. She was allowed to leave the store in her motorized cart to unload her items, I was not. The greeter informed me that chairs were not allowed outside of the store. Just a side note, this was not the same greeter who gave me the chair, however, she did check the receipt of the motorized chair lady that just scootered her way out the store.
I braced myself, and grabbed my items, which feel a lot heavier than they really are on days like today, and trudged my way out to my car, cursing the rudeness that I'd just experienced. Also of note, this is not my attempt to bash any Walmart, or even this particular Walmart, as I feel I probably would have had a similar experience at any store. I guess my point is, just because someone doesn't look like they need something, doesn't mean that they aren't actually in need. The more you know, I guess.
Wednesday, March 16, 2011
Pretty Long Day
HB and I left for the hospital at 9 yesterday morning. I should back up, at 7:30 or 8:00, HB actually made eggs on the stove, and they turned out great. I'm really proud of her. She can make scrambled eggs for me any time now. My first appointment was with the nutritionist at 11. Luckily, we could park in the cancer center parking. That garage is far smaller, and you can only park there if you have an appointment in the cancer center, so you can usually find a decent spot without driving around for 20 minutes.
The nutritionist gave me a lot of helpful advice, and some products to try. One of them was Carnation Instant Breakfast VHC (very high calorie). These little guys pack an awesome 540 calories into 8 oz. I'm excited to try them, and I can get them at cost from the pharmacy there. My normal ensures are only 250 or 350 calories per 8 oz. She also gave me a clinical strength ensure to try, these are the standard 350 calories, but include some specific ingredients to help restore muscle mass, which I could definitely use.
The nutritionist also told me that I should be eating between 2700 and 3000 calories a day, and around 87 grams of protein. That seems like so much food to me, but she gave me some helpful hints on how I can boost the calorie and protein count of things. One suggestion is to get some dry milk and mix it in with my whole milk. I'm going to try it. It practically doubles the calories and protein. She also gave me a cookbook called Eating Through Cancer which I'm going to look through for some ideas.
After nutrition, it was off to get some blood drawn. HB wisely suggested that we attempt to get my paracentesis time bumped up, because it was scheduled unrealistically tight between two other appointments that are always running pretty behind. I talked to the scheduler, and she was like, of course we'll squeeze you in, we love you down here. That makes me feel pretty good. I like to be the ideal patient, the one that doctors and nurses want to work with.
The paracentesis went ok. Dr. Dillman, who is awesome, and someone I would probably hang out with if I knew him differently, and has done this for me a few times before, was training a student in the procedure. They had a hard time getting any fluid to come out at first, because he kept sucking up my bowel. A little more about this procedure: They look at my abdomen with an ultrasound to find the biggest pocket of fluid. On the ultrasound, you see the layer of skin, a big black void area (that's the fluid), and some stuff that kind of looks like brains near the bottom of the screen. The brain-looking-stuff is your bowels. As the fluid is removed, the bowels will float towards the skin layer, because you're laying on your back, and your bowels have air in them. The suction from the vacuum bottle can sometimes suck the floating bowel into the tube doing the draining. It's not exactly painful, but it isn't the most pleasant thing either. Imagine someone pinching a tiny part of your intestines, and you've got pretty much how it feels. The biggest issue with this, is not the pain when it is happening, but the cramping that this causes down the road. Believe it or not, your bowels don't like to get sucked up into a tiny straw.
Off to oncology, where HB and I met with Dr. Khan's PA, Bridgitte. She's as awesome as Dr. Khan, which is great. We did find out that Dr. Khan will be leaving in May, so I will get shuffled to another GI Oncologist in the clinic. I hope that I get as lucky as I did with Dr. Khan. The results of my CT scan show no changes. NO CHANGES! That's amazing news as far as I'm concerned. In the 3 months, without much in the was of treatment, I had no changes. My liver is functioning well within the normal range, surprisingly so, and there's only one enzyme that was elevated. I am ecstatic. I'm hopeful that continued treatments will start shrinking some of the masses, but only time will tell. I don't actually see my oncologist again for another few months, so that is encouraging as well.
We met with the social worker, Chris, after oncology. She's helping me get some funding to pay for the sutent, the one that costs $8500 a month. Hopefully something comes through. She also will be doing some counseling with me, which we started yesterday. We'll see how it goes, as yesterday I was not in great shape to sit in more uncomfortable chairs. At this point in the day, HB and I had eaten breakfast (the awesome eggs she made at 8), and we're sitting in the social worker's office as the clock is hitting 4 pm. We were both famished, and luckily I had an ensure in my bag. I need to pay attention to my appointment schedules better and make sure I give myself breaks.
The only thing left in the day was getting my octreotide injections, which are always my favorite. We waited for nearly an hour to be seen, and then I was taken back to the injection room (which sounds like something you'd find in a dungeon) where I was greeted by the grumpiest looking nurse you can imagine. Unfortunately for her, she only looks grumpy, and was a sweetheart. She gave me my injections, and much to my surprise, they didn't really hurt. I made sure to tell her how appreciative I was, and that I thought she was the best nurse at giving shots, which made her grin a lot. Before I went into the room I was feeling pretty crappy, and I think a lot of it was because I was dreading these injections. After getting them done so well, I came out feeling a lot better. It's amazing what our brains can do to our bodies when we get all worked up about things.
HB drove me home, and we stopped at a KFC/Taco Bell for some much needed sustenance. I've been craving fried chicken for a while, and she loves rice and beans and tortillas, so it worked out well. It was a quick trip home in the rain, and when we got back, we had "Annie!" waiting for us from Netflix. Overall, it was a long, but pretty good day.
The nutritionist gave me a lot of helpful advice, and some products to try. One of them was Carnation Instant Breakfast VHC (very high calorie). These little guys pack an awesome 540 calories into 8 oz. I'm excited to try them, and I can get them at cost from the pharmacy there. My normal ensures are only 250 or 350 calories per 8 oz. She also gave me a clinical strength ensure to try, these are the standard 350 calories, but include some specific ingredients to help restore muscle mass, which I could definitely use.
The nutritionist also told me that I should be eating between 2700 and 3000 calories a day, and around 87 grams of protein. That seems like so much food to me, but she gave me some helpful hints on how I can boost the calorie and protein count of things. One suggestion is to get some dry milk and mix it in with my whole milk. I'm going to try it. It practically doubles the calories and protein. She also gave me a cookbook called Eating Through Cancer which I'm going to look through for some ideas.
After nutrition, it was off to get some blood drawn. HB wisely suggested that we attempt to get my paracentesis time bumped up, because it was scheduled unrealistically tight between two other appointments that are always running pretty behind. I talked to the scheduler, and she was like, of course we'll squeeze you in, we love you down here. That makes me feel pretty good. I like to be the ideal patient, the one that doctors and nurses want to work with.
The paracentesis went ok. Dr. Dillman, who is awesome, and someone I would probably hang out with if I knew him differently, and has done this for me a few times before, was training a student in the procedure. They had a hard time getting any fluid to come out at first, because he kept sucking up my bowel. A little more about this procedure: They look at my abdomen with an ultrasound to find the biggest pocket of fluid. On the ultrasound, you see the layer of skin, a big black void area (that's the fluid), and some stuff that kind of looks like brains near the bottom of the screen. The brain-looking-stuff is your bowels. As the fluid is removed, the bowels will float towards the skin layer, because you're laying on your back, and your bowels have air in them. The suction from the vacuum bottle can sometimes suck the floating bowel into the tube doing the draining. It's not exactly painful, but it isn't the most pleasant thing either. Imagine someone pinching a tiny part of your intestines, and you've got pretty much how it feels. The biggest issue with this, is not the pain when it is happening, but the cramping that this causes down the road. Believe it or not, your bowels don't like to get sucked up into a tiny straw.
Off to oncology, where HB and I met with Dr. Khan's PA, Bridgitte. She's as awesome as Dr. Khan, which is great. We did find out that Dr. Khan will be leaving in May, so I will get shuffled to another GI Oncologist in the clinic. I hope that I get as lucky as I did with Dr. Khan. The results of my CT scan show no changes. NO CHANGES! That's amazing news as far as I'm concerned. In the 3 months, without much in the was of treatment, I had no changes. My liver is functioning well within the normal range, surprisingly so, and there's only one enzyme that was elevated. I am ecstatic. I'm hopeful that continued treatments will start shrinking some of the masses, but only time will tell. I don't actually see my oncologist again for another few months, so that is encouraging as well.
We met with the social worker, Chris, after oncology. She's helping me get some funding to pay for the sutent, the one that costs $8500 a month. Hopefully something comes through. She also will be doing some counseling with me, which we started yesterday. We'll see how it goes, as yesterday I was not in great shape to sit in more uncomfortable chairs. At this point in the day, HB and I had eaten breakfast (the awesome eggs she made at 8), and we're sitting in the social worker's office as the clock is hitting 4 pm. We were both famished, and luckily I had an ensure in my bag. I need to pay attention to my appointment schedules better and make sure I give myself breaks.
The only thing left in the day was getting my octreotide injections, which are always my favorite. We waited for nearly an hour to be seen, and then I was taken back to the injection room (which sounds like something you'd find in a dungeon) where I was greeted by the grumpiest looking nurse you can imagine. Unfortunately for her, she only looks grumpy, and was a sweetheart. She gave me my injections, and much to my surprise, they didn't really hurt. I made sure to tell her how appreciative I was, and that I thought she was the best nurse at giving shots, which made her grin a lot. Before I went into the room I was feeling pretty crappy, and I think a lot of it was because I was dreading these injections. After getting them done so well, I came out feeling a lot better. It's amazing what our brains can do to our bodies when we get all worked up about things.
HB drove me home, and we stopped at a KFC/Taco Bell for some much needed sustenance. I've been craving fried chicken for a while, and she loves rice and beans and tortillas, so it worked out well. It was a quick trip home in the rain, and when we got back, we had "Annie!" waiting for us from Netflix. Overall, it was a long, but pretty good day.
Tuesday, March 15, 2011
Some things
I woke up to one of the prettiest sunrises I've ever seen this morning. Some days, I wonder if I think they are so beautiful just because I get to see another one, but this one was spectacular. Pink and purple like the sky was on fire. It was amazing. HB and I are going to the hospital today for a long day. I should get some results from the CT scan that I had on Friday. I get some blood work, I get my injections, I get drained, and I finally get to meet with the dietitian.
My family is throwing me a benefit chili dinner in May to help with some of the costs of everything. I really appreciate all of the hard work they are putting into this. It's also overwhelming to see everyone who has confirmed that they are coming and those wanting to help out. I thought I couldn't get more humbled, but again, was proven wrong. Here's a link to the Facebook event, if you'd like to come, or want to share the event with others: http://www.facebook.com/event.php?eid=172215012828718
Maybe that's the lesson in this. I think that about a lot of stuff. What am I supposed to learn from this? I don't think God does things without a purpose. Maybe the purpose is to teach me to accept help from others, something else that I'm not very good at. Whatever it is, I sure am learning a lot. Sorry to get so philosophical in the morning.
I'll update things probably tomorrow, with any news of today's visit. Thanks again for the outpouring of love and support and hugs and prayers. I don't think I'll ever be able to express just how grateful I really am.
My family is throwing me a benefit chili dinner in May to help with some of the costs of everything. I really appreciate all of the hard work they are putting into this. It's also overwhelming to see everyone who has confirmed that they are coming and those wanting to help out. I thought I couldn't get more humbled, but again, was proven wrong. Here's a link to the Facebook event, if you'd like to come, or want to share the event with others: http://www.facebook.com/event.php?eid=172215012828718
Maybe that's the lesson in this. I think that about a lot of stuff. What am I supposed to learn from this? I don't think God does things without a purpose. Maybe the purpose is to teach me to accept help from others, something else that I'm not very good at. Whatever it is, I sure am learning a lot. Sorry to get so philosophical in the morning.
I'll update things probably tomorrow, with any news of today's visit. Thanks again for the outpouring of love and support and hugs and prayers. I don't think I'll ever be able to express just how grateful I really am.
Tuesday, March 8, 2011
Humbled
Hey Gang,
Thanks for your words, and thoughts, and prayers, and encouragement, and tears, and hugs over the last few days. You have made one of the hardest times in my life substantially easier to deal with. Sorry that it's taken me this long to get something up, but this weekend was a whirlwind. Not only did I post the blog, but on Saturday I had to break the news to my family. It was a rough weekend.
We got back from Alma Sunday night, and I was up at 5 am Monday morning to head to Ann Arbor for some more appointments. I had my first meeting with PsychOncology, which went ok. They are going to have me see a therapist and have some medicine for me to try to help with the anxiety and depression. I then got to get drained, which is awesome as always. The last few times I've been lucky enough to get drained in the radiology department, rather than the medical procedures unit. The people in radiology are amazing, and some of them remember me from when I was an inpatient. In the medical procedures unit, I feel like I'm getting treated by an emergency room doctor who doesn't care who you are. In fact, one doctor asked my what my interests were, and while I was explaining that I loved to cook, walked out of the room, never to be seen again. Anyway, long story short, radiology is awesome, and I will continue to get drained there from now on.
On my way home, I found that it was awesome to barrel down the freeway in my junky car while listening to the "Scott Pilgrim vs. The World' soundtrack on as loud as I could stand it. It was a great sunny day, one that warms up the car without the heater being on. Other than the cramping that comes with getting drained sometimes, it was a nice drive home, with the combined sound of Beck and my broken muffler drowning out all of the stupid stuff for just a little while.
Oh, I also listened to James Brown, mostly while walking out of the hospital, but it gave me an idea for a blog post, so be ready for that soon. Thanks again, to all of you. All of your support makes me feel as strong as Superman. Much love to all of you.
Thanks for your words, and thoughts, and prayers, and encouragement, and tears, and hugs over the last few days. You have made one of the hardest times in my life substantially easier to deal with. Sorry that it's taken me this long to get something up, but this weekend was a whirlwind. Not only did I post the blog, but on Saturday I had to break the news to my family. It was a rough weekend.
We got back from Alma Sunday night, and I was up at 5 am Monday morning to head to Ann Arbor for some more appointments. I had my first meeting with PsychOncology, which went ok. They are going to have me see a therapist and have some medicine for me to try to help with the anxiety and depression. I then got to get drained, which is awesome as always. The last few times I've been lucky enough to get drained in the radiology department, rather than the medical procedures unit. The people in radiology are amazing, and some of them remember me from when I was an inpatient. In the medical procedures unit, I feel like I'm getting treated by an emergency room doctor who doesn't care who you are. In fact, one doctor asked my what my interests were, and while I was explaining that I loved to cook, walked out of the room, never to be seen again. Anyway, long story short, radiology is awesome, and I will continue to get drained there from now on.
On my way home, I found that it was awesome to barrel down the freeway in my junky car while listening to the "Scott Pilgrim vs. The World' soundtrack on as loud as I could stand it. It was a great sunny day, one that warms up the car without the heater being on. Other than the cramping that comes with getting drained sometimes, it was a nice drive home, with the combined sound of Beck and my broken muffler drowning out all of the stupid stuff for just a little while.
Oh, I also listened to James Brown, mostly while walking out of the hospital, but it gave me an idea for a blog post, so be ready for that soon. Thanks again, to all of you. All of your support makes me feel as strong as Superman. Much love to all of you.
Sunday, March 6, 2011
The deepest blues are black
Hey All,
I want to apologize up front for those of you getting this information this way- I really wanted to tell each and every one of you in person. That is not really feasible for a lot of situations, and it would have been something that would be very hard for me to do. I'm very sorry that I couldn't.
My prognosis is grim. Very grim. My prognosis is terminal. I don't know what kind of time line my oncologist has for me, and I frankly don't want to know. What I do know is that if it were too close she would have just referred me to hospice, instead of treating me.
I've known, or at least had a good idea, since the last day of the first trip to the hospital back in December. I did the stupid thing of researching neuroendocrine tumors of the pancreas on the last day of my stay. Heather had gone back home to be with the dogs and go back to work, since we didn't know how long I would be there, and it was just sporadic tests. I read that once the cancer metastasizes to the liver, there is no longer a cure. Since my liver was what everyone was worried about, I put two and two together. The oncology team that was assigned to me at that time came in while I was reading this. I asked a few questions, such as them not considering me for a liver transplant. It was a hard night. I found myself in the chapel at the hospital.
I'm sorry that I didn't share all of this with you up front. It's been super hard to process, and with the holidays coming up, I figured it would be best to wait. The holidays came and went, and it was just easier to ignore sharing heavy news and to just sit with it a bit longer. Unfortunately, this also means that it was really hard to be completely honest in my blog, and it was even harder to find things to write about without letting the cat out of the proverbial bag. I also kept the news from Heather, but she is super smart, and finally pieced things together about a month ago. Please don't be upset with her, either. It was my decision to keep this under wraps until I was ready to let people know.
I don't know how long I will live. All I know is that now I wake up every day thankful that I get to see the sunrise, spend the day with HB and her dogs, and talk to the people I love. I ask for another day when I go to bed at night. Dr. Khan, my oncologist, told me wisely that we should all live today for today, because we never really know what will happen. I can honestly say that life is a hell of a lot better when you can just live in the moment, and live in the moment every day.
Now I'm starting to get preachy, so I will leave it there. Again, I'm sorry that I held this back from all of you - your support has meant the world to me, and really has made carrying this news a lot easier to handle. I'm also sorry if you're finding out over the internet. I should be posting a little more often, now, and with more content than just news from appointments (although that will still be there, too).
Thursday, February 17, 2011
9 Liters or: How I learned to stop worrying and love the Khan.
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.
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 10, 2011
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