Last week on Monday HB and went to Ann Arbor for a follow up CT scan. This was kind of an ordeal, because the night before we had just gotten back from the Wheatland Festival. The CT scan was quick, and the staff in the Radiology unit at the hospital was great as always. They are always on time, and do quick and friendly work. I almost like going there because they treat me so good. It helps that I was there twice a week to get ascites drained. They know me by name, and remembered that I had a garden, even though I haven't been there in months.
I was supposed to have an appointment with my urological oncologist later that day to go over the results. Long story short (and this is why I hate the cancer center at u of m), they changed the appointment to Friday. They did this by letter, on the Thursday previous to the appointment. We had Thursday and Friday to try and get things rescheduled or figured out before the appointment on Monday. We didn't want HB to have to take another day off from work, and drive the 4 hours round trip, to wait in the office 2 hours past my scheduled appointment, to see the doctor for 3 minutes. Yes, this is how that clinic has been operating at all of my past appointments. They finally agreed to call me with the results on last Friday. I was supposed to call a number between 8-4, and the doctor would call me back when he had a free minute. I called at 8:15, gave them my info, and waited. At around 2, I hadn't heard anything and called back. They assured me that Dr. Hafez would call me before 4. At 5:30, I received a call from a nurse practitioner with the results. A special thanks to HB for calling and getting all of this arranged. I was ready to wash my hands of U of M, but she was persistent, and was awesome for getting this arranged for me. Anyway, the news...
No growth since March! No growth anywhere, kidneys, pancreas, or liver! Hope this news brightens your day, especially on a day like today, like it has mine.
Monday, September 19, 2011
Friday, September 16, 2011
How Medical Marijuana May Have Quite Literally Saved My Life
I'm not going to lie. July and August were pretty terrible. The side effects of the cancer drug are getting worse. There was a span of a few weeks where I couldn't keep much food down at all, and even when I could, I barely had any appetite. My sympathies go out to any woman who had to deal with morning sickness, I know what it's like, and it's not fun at all.
That's when it would mainly hit. Every morning, I would wake up, between 3:00 and 6:00, and have to make a mad dash downstairs to the bathroom. Once there, I wouldn't be able to move from that spot for another few hours. It left me completely exhausted, and I would end up sleeping most of the day to make up for it.
That's when I decided that I needed to talk to my doctor about it. I knew that marijuana could help with fending off nausea and increasing my appetite. My oncologist was all for it, but wasn't willing to sign the paperwork for Michigan’s Medical Marihuana Program. His rationale was that since it's still illegal on the federal level, and that's where his medical license is through, he wasn't willing to take that risk. Luckily, I found a doctor at a clinic in Kalamazoo who would see me.
I'll be posting again soon about the trip that I Heather and I took to the Upper Peninsula a few weeks ago. I had an idea for another upcoming blog post, and it requires your help. I want to do a question and answer post, because I feel like people have a lot of questions, and may be afraid to ask. I promise a no holds barred discussion. Any topic is fair game, and I'll do my best to answer as honestly as possible. I'll make sure that the comments section can have anonymous posting, if you'd rather ask something anonymously. I hope you all are enjoying this beautiful fall weather. Thanks for reading!
That's when it would mainly hit. Every morning, I would wake up, between 3:00 and 6:00, and have to make a mad dash downstairs to the bathroom. Once there, I wouldn't be able to move from that spot for another few hours. It left me completely exhausted, and I would end up sleeping most of the day to make up for it.
That's when I decided that I needed to talk to my doctor about it. I knew that marijuana could help with fending off nausea and increasing my appetite. My oncologist was all for it, but wasn't willing to sign the paperwork for Michigan’s Medical Marihuana Program. His rationale was that since it's still illegal on the federal level, and that's where his medical license is through, he wasn't willing to take that risk. Luckily, I found a doctor at a clinic in Kalamazoo who would see me.
I made an appointment, brought him a book off my medical records, and he promptly told me that I was one of the most "slam dunk" cases he had ever seen. His office over-nighted the paper work, along with my application fee check. I waited the 15 days to make sure I didn't get denied, and now I'm officially able to possess up to 2.5 ounces of marijuana. I can't drive while I'm on it, not that I would anyway. I can't smoke it in public. However, it does mean that I don't have to feel like a criminal when I use it to manage symptoms, even though I still feel a bit weird being able to carry it around.
During August, I lost 10 pounds because of the drug side-effects. I've been legal to use marijuana for almost 3 weeks now, and I'm happy to report that I've only been sick a few times, and I'm starting to put a little weight back on. (I was 137, today I'm 141!) I know that the marijuana debate is a pretty heated topic. But, I want you to know that when used in appropriate cases, it really does help. I have been off the sutent for few weeks now, for a short medicine holiday, which helps, but I still have some rough mornings here and there.
I owe a great big thank you to my cousin, Josh. He is acting as my caregiver, and has helped me out a lot. Thanks, Josh, life would have been a lot worse without your help.
I owe a great big thank you to my cousin, Josh. He is acting as my caregiver, and has helped me out a lot. Thanks, Josh, life would have been a lot worse without your help.
I'll be posting again soon about the trip that I Heather and I took to the Upper Peninsula a few weeks ago. I had an idea for another upcoming blog post, and it requires your help. I want to do a question and answer post, because I feel like people have a lot of questions, and may be afraid to ask. I promise a no holds barred discussion. Any topic is fair game, and I'll do my best to answer as honestly as possible. I'll make sure that the comments section can have anonymous posting, if you'd rather ask something anonymously. I hope you all are enjoying this beautiful fall weather. Thanks for reading!
Monday, August 15, 2011
Still Alive!
Today I am supposed to be dead... or at least dying. Maybe it wouldn't have been until this evening, but it didn't happen. Today is the last day of my 6 month prognosis. The doctors at U of M originally gave me 6 months to live back in February. That has since changed, but this day is a day that HB and I have been counting down for months now. Dreading, terrified of, and trying to prolong. But, as the song above suggests, I'm still alive. STILL ALIVE.
I woke up this morning with happy, sappy tears in my eyes. I saw HB off to work, and then I made myself a celebratory pork chop for breakfast. My buddy Wayne was coming down to get on the train, so I drank some coffee on the front porch with him, and then I dropped him off. I went to Meijer to get some groceries for dinner tonight, and I just beamed. I was just in a really happy mood. I never smile when I go to the store, it's one of my least favorite things to do. I got my stuff for lasagna tonight, and what I needed for a cake for desert.
By the time I was home, I had realized that my happiness couldn't overwhelm my energy level, and in the excitement I had worn myself out a bit. Woops. Tonight, I'm making lasagna for dinner (one of my favorite meals) and a baking a cake in honor of the event. It will be great.
HB and I had originally kicked around the idea of a party, but neither of us had the time or energy to plan it, and it was going to be difficult to find a place where people for all sorts of locations could come. We were going to call it the "Ron beat Death Extravaganza". So I guess that's what the cake and lasagna will be tonight. Now I'm off to go get some tomatoes from the garden to start on lasagna.
A note on the song, it's the end credits song for a video game called "Portal". The voice is the villain in the game who is a computer that is leading you through a laboratory trying to kill you (Think HAL from 2001: A Space Odyssey)
Friday, August 5, 2011
The Garden: AKA "Operation: Hobo's Beard"
After reading my friend Amber's fantastic new blog (http://staywellfed.blogspot.com/), it has inspired me to tell you all about my garden. This has been a project that has been in the planning since last summer, when I first moved in with HB. With some awesome help from Doug and Heather, and Ryan's truck, we successfully built 2 8'x4' raised beds in our side yard. The placement is quite perfect. It gets full sun all day, except for the last 3 hours or so in the afternoon, when the sun seems to be the hottest. It's close to the outside faucet, which means that watering is rather simple, which is good considering how dry this summer has been.
Doug and I got the dirt from the city of Kalamazoo's free compost pile. The material is composted leaves and yard waste from the previous fall's curbside leaf pick-up. Thanks for the great tip Kara and Dan! The compost was dark and rich, and had a great earthy smell. Some light sifting was required, as there was various debris that had accumulated. Heather and I bought 2 flats of vegetables at a sale sponsored by the local fire department, which is a great cause, and has proven to be pretty great starter plants. I made the way over-ambitious mistake of getting mostly tomatoes, one and a half flats to be exact. (Note to self: next year, we can get away with significantly less, not that having too many tomatoes is a bad thing).
The plants were put planted in the first week of June, which is probably a little late, but things are exploding now. When planted, the tomatoes took up all of one box, and 3/4 of the other, leaving little room for the cauliflower and cayenne pepper plants that we also purchased. In fact, the tomatoes have now kind of overtaken everything, and killed off the chiles and all but one of the cauliflowers. Also in my over-ambition, I bought 20 packets of seeds of various other vegetables. Heather and I did manage to make some room for 2 corn plants, which are flourishing.
Why Operation: Hobo's Beard? Well, when first planted, the plants all made neat little rows, that were quite manageable. A few weeks later, things were starting to get a bit unmanageable, as the tomato vines starting spreading out all over the place. Dustin and Carrie came over, and with Heather's help, they built some dividers out of some old lattice for the tomatoes to grow up on. A few weeks later, and the garden is now stretching out far beyond the reaches of the boxes. My two 4'x8' boxes, with 4' of clearance in between, is now one mega garden, stretching out about 4' outside of both boxes. It has the unkempt appearance of a lush Hobo's Beard.
Today, I munched on one of the cherry tomatoes that I plucked from the garden earlier this morning, and it was a near religious experience. There is something so extremely gratifying about eating a sun-warmed, fresh from the vine tomato, especially one that you've spent time and money and love and care developing. I imagine that this is sort of what it's like having kids, except I doubt kids are that delicious. I've been able to pull out about a dozen cherry tomatoes so far, and about the same of a variety called "Sol", that are a little larger than a golf ball, and have an amazing fleshy texture, and not too acidic. As soon as these start exploding (which is any day now), I think they will go into a delicious soup.
Hope you all don't mind a non-medical related post, I'm just super-excited, and super-proud, and super-thankful for this thing, like a kid showing off his new shiny toy. I'll post some pictures of the whole process soon.
Doug and I got the dirt from the city of Kalamazoo's free compost pile. The material is composted leaves and yard waste from the previous fall's curbside leaf pick-up. Thanks for the great tip Kara and Dan! The compost was dark and rich, and had a great earthy smell. Some light sifting was required, as there was various debris that had accumulated. Heather and I bought 2 flats of vegetables at a sale sponsored by the local fire department, which is a great cause, and has proven to be pretty great starter plants. I made the way over-ambitious mistake of getting mostly tomatoes, one and a half flats to be exact. (Note to self: next year, we can get away with significantly less, not that having too many tomatoes is a bad thing).
The plants were put planted in the first week of June, which is probably a little late, but things are exploding now. When planted, the tomatoes took up all of one box, and 3/4 of the other, leaving little room for the cauliflower and cayenne pepper plants that we also purchased. In fact, the tomatoes have now kind of overtaken everything, and killed off the chiles and all but one of the cauliflowers. Also in my over-ambition, I bought 20 packets of seeds of various other vegetables. Heather and I did manage to make some room for 2 corn plants, which are flourishing.
Why Operation: Hobo's Beard? Well, when first planted, the plants all made neat little rows, that were quite manageable. A few weeks later, things were starting to get a bit unmanageable, as the tomato vines starting spreading out all over the place. Dustin and Carrie came over, and with Heather's help, they built some dividers out of some old lattice for the tomatoes to grow up on. A few weeks later, and the garden is now stretching out far beyond the reaches of the boxes. My two 4'x8' boxes, with 4' of clearance in between, is now one mega garden, stretching out about 4' outside of both boxes. It has the unkempt appearance of a lush Hobo's Beard.
Today, I munched on one of the cherry tomatoes that I plucked from the garden earlier this morning, and it was a near religious experience. There is something so extremely gratifying about eating a sun-warmed, fresh from the vine tomato, especially one that you've spent time and money and love and care developing. I imagine that this is sort of what it's like having kids, except I doubt kids are that delicious. I've been able to pull out about a dozen cherry tomatoes so far, and about the same of a variety called "Sol", that are a little larger than a golf ball, and have an amazing fleshy texture, and not too acidic. As soon as these start exploding (which is any day now), I think they will go into a delicious soup.
Hope you all don't mind a non-medical related post, I'm just super-excited, and super-proud, and super-thankful for this thing, like a kid showing off his new shiny toy. I'll post some pictures of the whole process soon.
Saturday, July 30, 2011
The current state of affairs
This is a tremendously hard topic to publicly discuss for a number of reasons. First, it's hard for me to accept weakness (stupid, stupid pride). Second, I hate to dwell on the negative. Third, I hate to make people worry. It is time to put that aside, partially for my own sanity, and partially just so that everyone has a better idea of what I'm going through. For the most part, when people see me, I'm usually at a better time, or if I'm not, I get my shit together enough to pretend and pull it off. This notion is silly, and very counterproductive, as it usually wears me out even further. From now on, I'm going to try to put forth a more honest version of me. This may require some help on all of your parts. If you ask me how I'm doing, and I say that I'm ok, please ask me how I'm really doing. Ok falls on this huge grey area that can mean, I feel like I'm going to puke my guts out, to I feel like I could walk a mile.
On to the dirty bits.
This past week has been one of the roughest that I've experienced. Although, it hasn't really come out of nowhere. Things have been degrading for a while now, and each round of the drugs comes with more side effects. I'm half-way through a cycle of Sutent (4 weeks on, 2 off), and true to form, this is when things go downhill for me. HB and I got back from a trip to Alma on Monday, and from Tuesday on, I've felt like hell. I've had no appetite, liver pain, nausea, vomiting, fatigue, weakness, and diarrhea. Today is the first day since we've returned from Alma that I haven't spent the entire day on the couch, unable to move. Today is the first day that I've been able to eat some semblance of a meal. I'm still fatigued as hell, but having an appetite is a good first step.
The fatigue is the next issue, after not being able to eat/being nauseous. It feels like I've got the flu and run a 5k all at the same time. I tire really easily. Stairs are pretty difficult at best. I need to take at least one nap per day. Some days this is not enough. I can get through most chores, but I need to take frequent breaks. For instance, I can vacuum the living room floor, but I need to take a break before I move on to another room. It's really frustrating to have gone from working a line in a busy kitchen to this.
I hope you all aren't freaked out by this. It's not meant to make anyone worry more, just to let you know a little bit more about what life is like for me. I just want you all to know that I will do my best to be more honest with all of you, and myself, about how I'm actually doing.
On to the dirty bits.
This past week has been one of the roughest that I've experienced. Although, it hasn't really come out of nowhere. Things have been degrading for a while now, and each round of the drugs comes with more side effects. I'm half-way through a cycle of Sutent (4 weeks on, 2 off), and true to form, this is when things go downhill for me. HB and I got back from a trip to Alma on Monday, and from Tuesday on, I've felt like hell. I've had no appetite, liver pain, nausea, vomiting, fatigue, weakness, and diarrhea. Today is the first day since we've returned from Alma that I haven't spent the entire day on the couch, unable to move. Today is the first day that I've been able to eat some semblance of a meal. I'm still fatigued as hell, but having an appetite is a good first step.
The fatigue is the next issue, after not being able to eat/being nauseous. It feels like I've got the flu and run a 5k all at the same time. I tire really easily. Stairs are pretty difficult at best. I need to take at least one nap per day. Some days this is not enough. I can get through most chores, but I need to take frequent breaks. For instance, I can vacuum the living room floor, but I need to take a break before I move on to another room. It's really frustrating to have gone from working a line in a busy kitchen to this.
I hope you all aren't freaked out by this. It's not meant to make anyone worry more, just to let you know a little bit more about what life is like for me. I just want you all to know that I will do my best to be more honest with all of you, and myself, about how I'm actually doing.
Wednesday, July 27, 2011
Why Captain America is an important movie
Before you think that I've gone off the deep end into a pool full of my own nerd-fluid, hear me out.
A few years ago, I heard that they had given this movie the green-light. Never before had I been this excited about a movie. I started researching who the cast was going to be, found clips and previews, and even set up a section in my google news feed for the film. I'm a huge Captain America fan. Something about the wimpy nerd turned hero has always been close to my wimpy nerd heart. The fact that Captain America came to be during World War II, and was first seen clobbering Nazis, probably the closest thing to a super-villain group this world has ever seen, makes it more awesome. I also really loved Captain America in the whole Marvel Civil War run, he was great in that.
The first time I saw the official long-cut trailer was a week or two before I first got diagnosed with all of this crap. I was super excited and couldn't wait for summer to get here so I could see the movie.
It's funny the weird little thoughts that go through your head when someone has told you that you don't have long to live. Obviously the first things were, holy crap, Heather. How is she going to deal with this, and it's going to be really terrible to be gone and not have her. And the same goes for my family, and friends. I'm not going to be able to see my nephew grow up. Stuff along those lines. After a while though, the stupid things start to creep in. One of the first silly thoughts was, "Man, I'm not going to be around to see Captain America". That silly thought hit me the hardest.
Long story short, last weekend, Doug, Jake, Wayne, and I finally saw the movie. It was glorious, partially because I'm some sort of uber-nerd, and partially because it was an important milestone. I made it. I lasted longer than some thought. It's the sort of boon to my confidence that I've needed as of late. So thanks to the guys for coming along. It was a milestone I will not forget.
Oh, and just in case you were wondering, it really was a good movie, great for a comic book movie. You should all see it. I reluctantly saw it in 3D (reluctantly because I am annoyed with the "every movie is now in 3D craze we're in), and they even did a pretty decent job utilizing the 3D effects in a way that complimented the movie, rather than "Hey, get all of the 3D effects in while you can" mentality that a lot of 3D movies have. To see what I mean, wait for the shield to bounce off a tank, Wayne and I both ducked.
More soon. I'm trying to work on a way to make some video blogs (I will never call it a "Vlog", unless you give me $10,000) What do you think of that idea?
A few years ago, I heard that they had given this movie the green-light. Never before had I been this excited about a movie. I started researching who the cast was going to be, found clips and previews, and even set up a section in my google news feed for the film. I'm a huge Captain America fan. Something about the wimpy nerd turned hero has always been close to my wimpy nerd heart. The fact that Captain America came to be during World War II, and was first seen clobbering Nazis, probably the closest thing to a super-villain group this world has ever seen, makes it more awesome. I also really loved Captain America in the whole Marvel Civil War run, he was great in that.
The first time I saw the official long-cut trailer was a week or two before I first got diagnosed with all of this crap. I was super excited and couldn't wait for summer to get here so I could see the movie.
It's funny the weird little thoughts that go through your head when someone has told you that you don't have long to live. Obviously the first things were, holy crap, Heather. How is she going to deal with this, and it's going to be really terrible to be gone and not have her. And the same goes for my family, and friends. I'm not going to be able to see my nephew grow up. Stuff along those lines. After a while though, the stupid things start to creep in. One of the first silly thoughts was, "Man, I'm not going to be around to see Captain America". That silly thought hit me the hardest.
Long story short, last weekend, Doug, Jake, Wayne, and I finally saw the movie. It was glorious, partially because I'm some sort of uber-nerd, and partially because it was an important milestone. I made it. I lasted longer than some thought. It's the sort of boon to my confidence that I've needed as of late. So thanks to the guys for coming along. It was a milestone I will not forget.
Oh, and just in case you were wondering, it really was a good movie, great for a comic book movie. You should all see it. I reluctantly saw it in 3D (reluctantly because I am annoyed with the "every movie is now in 3D craze we're in), and they even did a pretty decent job utilizing the 3D effects in a way that complimented the movie, rather than "Hey, get all of the 3D effects in while you can" mentality that a lot of 3D movies have. To see what I mean, wait for the shield to bounce off a tank, Wayne and I both ducked.
More soon. I'm trying to work on a way to make some video blogs (I will never call it a "Vlog", unless you give me $10,000) What do you think of that idea?
Friday, June 10, 2011
It ain't about how hard you hit
The visualization of the catfish is starting to feel far too passive for what I'm dealing with. It is relaxing and meditative for sure, but it is starting to feel like I'm fighting a battle with the wrong weapon. Wrong for me anyway. I feel like I'm in a bit of a slump. Not that I feel like I'm getting more sick, just that it feels like I'm settling into a rut of sorts, becoming complacent. There is no time for complacency. I feel like I need to be on my guard, and doing something to push back. I've got an infinite amount of reasons to fight this thing, and I feel like I owe all of those reasons an earnest effort.
I decided today that I needed to watch some clips of Muhammad Ali. Arguably the best boxer to ever live, he was also supremely confident in everything he did. He didn't just beat his opponents in the ring, he started the fight before the boxing match even started. He got in their heads. He let them know just how great he was, and just how much he would punish them when the match did start. That's what I need, I realized today. I need to not only make this a physical fight, I need to make this a mental one too. It's one thing to be optimistic, it's another entirely different thing to be confident. I need to not only be fast, tough, and strong physically, I need to be that mentally, too. I need to have the confidence, and beat this disease with my mind, not just my body.
I stumbled upon this (admittedly very cheesy) video while watching Muhammad Ali annihilate his opponents. It's a video clip from the movie Snatch, set to some speeches that Muhammad Ali gave, as well as some quotes from one or some of the Rocky movies. Some of my favorite lines from Muhammad Ali are:
-"Only last week, I murdered a rock, injured a stone, hospitalized a brick, I'm so mean I make medicine sick"
-"Let me tell you something you already know, the world ain't all sunshine and rainbows, its a very mean and nasty place and I don't care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody, is gonna hit as hard as life; but it ain't about how hard you hit, its about how hard you can get hit and keep moving forward, how much you can take and keep moving forward. Thats how winning is done."
Here's the video: http://www.youtube.com/watch?v=lqpQzT1Kbuk&feature=player_embedded
Edit: I added the link to the video because the embedded video wasn't working on my iPod.
I decided today that I needed to watch some clips of Muhammad Ali. Arguably the best boxer to ever live, he was also supremely confident in everything he did. He didn't just beat his opponents in the ring, he started the fight before the boxing match even started. He got in their heads. He let them know just how great he was, and just how much he would punish them when the match did start. That's what I need, I realized today. I need to not only make this a physical fight, I need to make this a mental one too. It's one thing to be optimistic, it's another entirely different thing to be confident. I need to not only be fast, tough, and strong physically, I need to be that mentally, too. I need to have the confidence, and beat this disease with my mind, not just my body.
I stumbled upon this (admittedly very cheesy) video while watching Muhammad Ali annihilate his opponents. It's a video clip from the movie Snatch, set to some speeches that Muhammad Ali gave, as well as some quotes from one or some of the Rocky movies. Some of my favorite lines from Muhammad Ali are:
-"Only last week, I murdered a rock, injured a stone, hospitalized a brick, I'm so mean I make medicine sick"
-"Let me tell you something you already know, the world ain't all sunshine and rainbows, its a very mean and nasty place and I don't care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody, is gonna hit as hard as life; but it ain't about how hard you hit, its about how hard you can get hit and keep moving forward, how much you can take and keep moving forward. Thats how winning is done."
Here's the video: http://www.youtube.com/watch?v=lqpQzT1Kbuk&feature=player_embedded
Edit: I added the link to the video because the embedded video wasn't working on my iPod.
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