Hey Everyone,
I added a gadget to the main page so that you can follow the blog by email. If it works as it says it will, you should get notified by email whenever I update. Let me know if it doesn't seem to be working.
HB gave me a great idea to put a needs/wants list on my blog. I feel weird asking for help with things, but I've always been that way. I'll add that to the front page as well. I'm going to do some more editing of the layout in the next few days as well, to spice things up and get things a little bit more organized.
I'm heading to Ann Arbor today to get drained again. I called Dr. Khan's clinic the other day to try and get the draining moved to somewhere a little more local. They weren't very helpful, and told me that I'd need to get that done through my primary care physician. Well, I don't have one. I haven't been in Kalamazoo that long, and I haven't had insurance either, hence, no treatment before all of this started, and no primary care doctor. Grrrr... At least they're hooking me up with the paperwork for a handicap permit. I kind of hate asking for it, and I probably won't use it much, but on days when I just don't have the energy to do things, it will come in handy. I've got a call out to the West Michigan Cancer Center here in Kalamazoo to hopefully get all of my treatments moved here. They've run trials on the same cancer and drug combo I'm on currently, and since Dr. Khan is leaving in a month, I think this change makes the most sense. Sorry Ann Arbor friends, I'll probably be over there less frequently. I think my Urology stuff will still be over there though, so maybe I'll be around a little bit.
Spring is springing (finally) and it's getting me really excited to grow some of my own food. My brother is coming in a few weeks to help me put in a couple of raised beds. If any of you have any experience in this, I would appreciate any advice you could give me. The soil out here isn't very good with all of the walnut trees making the soil acidic, and I don't have a tiller, so I think this makes the most sense. I haven't done anything with a garden since I was a kid, but I remember how awesome it was to have fresh vegetables on hand all the time.
I've been reading a ton on cooking, especially charcuterie, and it's got me excited to do that as well. I don't know how HB will feel about random hunks of meat hanging for a few weeks at a time in the house though. That may be a tricky one to explain. :) I think all of this is just a tremendous case of spring fever. I've been feeling good because I've been off the cancer drug for a few weeks to let my body catch up. Today is the last day of that. Tomorrow I start the Sutent again, both with encouragement and discouragement. I'm hopeful that the drug will continue working, and maybe even start to shrink things, but it does sap my energy level a lot. I get pretty fatigued while I'm on it. When I started it, it took a week or two to start feeling that way, so with some luck, I'll have a few more weeks of good energy levels. The other thing that may (read most likely) have contributed to this increase in energy is finally figuring out what my body needs in the way of protein and calories. I do kind of feel like I'm just cramming food in my face all day. It's not all bad, but does feel like a chore sometimes. I'm eating 6 or 7 times a day. I kind of feel like the kid who gets caught smoking and the parents make him smoke the entire pack.
Oh, in great news, I finally (I've been waiting for a month now) got an appointment for the consultation for the shunt, which will hopefully help stop or limit the fluid build up in my abdomen. I go for that on Tuesday. Hooray.
Ok, now that this quick post is a becoming a novella, I'll leave it here. I'll post again when I get the changes to the blog the way I want them. Thanks for reading!
Thursday, March 31, 2011
Tuesday, March 22, 2011
When it rains...
Today started off great! I woke up feeling pretty fantastic after getting drained yesterday, and I made an amazing smoothie with yogurt, whole milk, frozen berries, cream, and a strawberry instant breakfast packet. It was full of both calories and protein, and I really felt great after eating it, not to mention that it was delicious. I was excited about feeling so good, because I really needed to go to the grocery store to get stocked back up on things, and it's always easier to tackle a Meijer trip when I'm not feeling fatigued.
Last night I noticed that I had a belt in my car that was pretty squeaky, so I figured on my way home I'd pick up the belt and replace it in the next day or two. I had a car full of pop bottles to take back, which is probably my least favorite thing ever, but even that didn't get me down. I get to Meijer, and pop my headphones in, which makes wandering around the store a lot easier. For some reason, listening to music while I'm walking around doesn't seem to wear me out as much. I found this out while at some recent appointments in Ann Arbor. I did my shopping and just as I was checking out I was finishing the album, pretty great timing. I was listening to Soul Coughing's "El Oso" for anyone wondering. I get out to my car and unload, starting to feel a little tired, as I had just spent about an hour wandering around Meijer. I start my car to let it start warming up while I'm loading, and the squeaking gets worse. Usually it goes away after a minute or two of warming up, but it kept going. I go to pull out of my parking spot, and I notice that the wheel is incredibly difficult to steer. Great, the power steering belt is what's slipping, and this will make the drive home pretty laborious. Just as I'm backing out I hear a snap, the squeaking stops, and there's smoke coming out of my hood. I pull back into the spot, turn off my car, and pop the hood. The belt melted through. Not having any tools with me, I call up Jim at Muffler Man and see if they can fit me in. I've had them work on my car a few times before, and they do really great work, at a really great price. He said it wouldn't be a problem, but it would take about an hour to get my car in. I ask him to reserve me a spot, and luckily, it's not too far from where I am.
I make my way down the road, with no power steering, and pull in to Muffler Man. Jim remembers me, and I show him the belt I had plucked out. I sit down and wait. They finally get to my car. The guy working on my car, Jake, runs in and says, "You'd better come check this out". I come out to the garage with him, and he shows me that my water pump has seized up completely. In fact, an hour and a half after pulling in, the bearing is still smoking. I know that water pumps are fairly inexpensive, I helped a buddy change his on his Saturn. The problem with mine, is that you have to take out an engine mount to get to the pump. To compound this, in 1989 Toyota made 8 different models of Corolla. Each one is the same basic design, but there are two different water pumps for the 8 different models, as well as 4 different belts. Each car has two belts, but again, there are different belt sizes. Ugh. So, they have to order both pumps, and all 4 belts, as they don't want to tear the car apart, and then order the parts. Don't worry, they'll return what they don't use. Not what I needed to hear, especially when I've got groceries that have been sitting in the car for the last hour and a half. Luckily, it was Dustin and Carrie to the rescue again. Dustin came and got me and the food, and let me use some space in their freezer/fridge until HB got out of work. The worst part, is that I left at 9:30 am, and we didn't get home until almost 6. The dogs were stuck inside that entire time. Luckily, no messes.
Ugh, what a day. I had planned on surprising HB and getting a bunch of chores done before she got home from work with all this extra energy I had. Hopefully they get the car done tomorrow, so I can go get drained again before the weekend. Stupid cars. If this car hadn't been so good to me for the last couple of years I may have just lit it on fire, while laughing maniacally as it disintegrated in the Meijer parking lot.
But hey, here's to a day of feeling really darned good. Those don't come as often as I'd like, but hopefully they continue.
Last night I noticed that I had a belt in my car that was pretty squeaky, so I figured on my way home I'd pick up the belt and replace it in the next day or two. I had a car full of pop bottles to take back, which is probably my least favorite thing ever, but even that didn't get me down. I get to Meijer, and pop my headphones in, which makes wandering around the store a lot easier. For some reason, listening to music while I'm walking around doesn't seem to wear me out as much. I found this out while at some recent appointments in Ann Arbor. I did my shopping and just as I was checking out I was finishing the album, pretty great timing. I was listening to Soul Coughing's "El Oso" for anyone wondering. I get out to my car and unload, starting to feel a little tired, as I had just spent about an hour wandering around Meijer. I start my car to let it start warming up while I'm loading, and the squeaking gets worse. Usually it goes away after a minute or two of warming up, but it kept going. I go to pull out of my parking spot, and I notice that the wheel is incredibly difficult to steer. Great, the power steering belt is what's slipping, and this will make the drive home pretty laborious. Just as I'm backing out I hear a snap, the squeaking stops, and there's smoke coming out of my hood. I pull back into the spot, turn off my car, and pop the hood. The belt melted through. Not having any tools with me, I call up Jim at Muffler Man and see if they can fit me in. I've had them work on my car a few times before, and they do really great work, at a really great price. He said it wouldn't be a problem, but it would take about an hour to get my car in. I ask him to reserve me a spot, and luckily, it's not too far from where I am.
I make my way down the road, with no power steering, and pull in to Muffler Man. Jim remembers me, and I show him the belt I had plucked out. I sit down and wait. They finally get to my car. The guy working on my car, Jake, runs in and says, "You'd better come check this out". I come out to the garage with him, and he shows me that my water pump has seized up completely. In fact, an hour and a half after pulling in, the bearing is still smoking. I know that water pumps are fairly inexpensive, I helped a buddy change his on his Saturn. The problem with mine, is that you have to take out an engine mount to get to the pump. To compound this, in 1989 Toyota made 8 different models of Corolla. Each one is the same basic design, but there are two different water pumps for the 8 different models, as well as 4 different belts. Each car has two belts, but again, there are different belt sizes. Ugh. So, they have to order both pumps, and all 4 belts, as they don't want to tear the car apart, and then order the parts. Don't worry, they'll return what they don't use. Not what I needed to hear, especially when I've got groceries that have been sitting in the car for the last hour and a half. Luckily, it was Dustin and Carrie to the rescue again. Dustin came and got me and the food, and let me use some space in their freezer/fridge until HB got out of work. The worst part, is that I left at 9:30 am, and we didn't get home until almost 6. The dogs were stuck inside that entire time. Luckily, no messes.
Ugh, what a day. I had planned on surprising HB and getting a bunch of chores done before she got home from work with all this extra energy I had. Hopefully they get the car done tomorrow, so I can go get drained again before the weekend. Stupid cars. If this car hadn't been so good to me for the last couple of years I may have just lit it on fire, while laughing maniacally as it disintegrated in the Meijer parking lot.
But hey, here's to a day of feeling really darned good. Those don't come as often as I'd like, but hopefully they continue.
Thursday, March 17, 2011
A breakthrough!
So one thing that I don't think I've mentioned so far is my struggle to obtain medicaid coverage to pay for all of these treatments. I knew something not good was going on late last fall, and wanted to get some sort of coverage in place before I actually went to the hospital. There was an opening in Michigan's Adult Benefit Waiver program, which is a medicaid assistance program for the unemployed. I also found out about a grant that the University of Michigan offers called "M-Support", which will cover costs at the hospital for the uninsured. I applied for both and waited to hear back.
I heard back from M-Support first, and since my medicaid application was pending, they were held up on a decision until that came back as denied. Medicaid, however, has been giving me the run around the whole time. HB and I decided in December that we couldn't wait any longer, and if Medicaid didn't come through, M-Support should, and really, my health is way too important to mess around with it any longer.
While we were in the hospital, I re-applied for medicaid through a company that the hospital contracts to help out with medicaid. The company, Independent Medical Network, will determine if you seem to be a good candidate for medicaid, and will take care of the filing and any necessary paperwork needed afterwards. They will also help you fight for an appeal in case you get denied the first time. I went into the hospital on December 11th, and it was probably the 14th or 15th when I met with my worker from IMN. Skip ahead the next 3 months to last week and me still calling waiting for an update. My medicaid application has been pending for a month or so. This has been a constant weight. U of M has been really great about everything, not demanding any money before I can be seen in their clinics again, which is extremely generous on their part.
The other half of this equation is drug costs. Most of the drugs I'm on are $4 generics, so it's relatively inexpensive, but not working, and having to drive 4 hours round trip every week adds up really fast. However, the problem comes with the actual cancer drug. Sutent is $8500 per month. Luckily the hospital pharmacy filled my first prescription with the understanding that this was a one time deal, and if something didn't come through to pick it up, it would be added to the bill, and I wouldn't be able to receive more medicine until something came through. We're in the process of filling out forms from the drug manufacturer to pay or at least defer some of the cost, but nothing involving paperwork is ever fast. I actually took my last dose of Sutent today. I have to take 2 weeks off to let my body recover, but 2 weeks is rarely enough time for paperwork to get pushed through anywhere, let alone a large drug conglomerate like Pfizer. Panic was definitely starting to kick in.
I finally got a call back from my DHS worker today. I have been approved for ongoing Medicaid, retroacted back to October 1st! That means all of my hospital bills should be covered, and I shouldn't have to worry about any future treatments, and hopefully they cover the Sutent bill as well. She told me this on the phone, and I just started crying. I can't describe how much of a weight off from my shoulders this is. I told her that she had just made my year. I still get choked up recalling the story. Jimmy Valvano was right, you need to do three things every day to really live. You need to laugh, you need to think, and you need to let your emotions overtake you. I posted the video a little while back, if you skipped over it, make sure you watch it. That's it for today, I think. Have a happy St. Patrick's day, and drink some green beer for me to celebrate my good news, since I can't drink anymore.
I heard back from M-Support first, and since my medicaid application was pending, they were held up on a decision until that came back as denied. Medicaid, however, has been giving me the run around the whole time. HB and I decided in December that we couldn't wait any longer, and if Medicaid didn't come through, M-Support should, and really, my health is way too important to mess around with it any longer.
While we were in the hospital, I re-applied for medicaid through a company that the hospital contracts to help out with medicaid. The company, Independent Medical Network, will determine if you seem to be a good candidate for medicaid, and will take care of the filing and any necessary paperwork needed afterwards. They will also help you fight for an appeal in case you get denied the first time. I went into the hospital on December 11th, and it was probably the 14th or 15th when I met with my worker from IMN. Skip ahead the next 3 months to last week and me still calling waiting for an update. My medicaid application has been pending for a month or so. This has been a constant weight. U of M has been really great about everything, not demanding any money before I can be seen in their clinics again, which is extremely generous on their part.
The other half of this equation is drug costs. Most of the drugs I'm on are $4 generics, so it's relatively inexpensive, but not working, and having to drive 4 hours round trip every week adds up really fast. However, the problem comes with the actual cancer drug. Sutent is $8500 per month. Luckily the hospital pharmacy filled my first prescription with the understanding that this was a one time deal, and if something didn't come through to pick it up, it would be added to the bill, and I wouldn't be able to receive more medicine until something came through. We're in the process of filling out forms from the drug manufacturer to pay or at least defer some of the cost, but nothing involving paperwork is ever fast. I actually took my last dose of Sutent today. I have to take 2 weeks off to let my body recover, but 2 weeks is rarely enough time for paperwork to get pushed through anywhere, let alone a large drug conglomerate like Pfizer. Panic was definitely starting to kick in.
I finally got a call back from my DHS worker today. I have been approved for ongoing Medicaid, retroacted back to October 1st! That means all of my hospital bills should be covered, and I shouldn't have to worry about any future treatments, and hopefully they cover the Sutent bill as well. She told me this on the phone, and I just started crying. I can't describe how much of a weight off from my shoulders this is. I told her that she had just made my year. I still get choked up recalling the story. Jimmy Valvano was right, you need to do three things every day to really live. You need to laugh, you need to think, and you need to let your emotions overtake you. I posted the video a little while back, if you skipped over it, make sure you watch it. That's it for today, I think. Have a happy St. Patrick's day, and drink some green beer for me to celebrate my good news, since I can't drink anymore.
Wednesday, March 16, 2011
A look into life with cancer
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.
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.
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).
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