Things have been rather hectic around here and I've been working a lot of overtime. But I have managed to think a little about things and I've done some research into kidney transplants. It's a little less scary now. And while transplantation is a long way off (at least 2 years) before I'll be actually seriously dealing with it, I was compelled to read about it. Here are couple of links, if you're interested, that aren't technical or too in-depth. One is about transplantation and the other is about effects on donors.
The dance class is going well. Lots of fun. And who knew I could actually learn this stuff? Not me.
Now I'm off to peruse Hawaii vacations on the net. I'm saving my pennies and trying to decide on a really cool vacation Luke and I can take next year for about two weeks. We haven't had a real vacation in a while so we want to make it a big one.
Sunday, September 21, 2008
Saturday, September 13, 2008
It's a new day (it's me!)
I've decided to start a new blog, because I have some new issues. Since there are no longer "cancer events" I didn't want to continue in the old blog. I don't know if I'll keep this one up or if I'll ever have anything interesting to say here. Or even when or if I'll post after today. But I do have a lot to say today. And again, I thought this would be a good way to inform family and friends.
I'm sitting watching the wind from Ike whip through the trees. Occasionally a spurt of rain with slash against the window as if there were a sprinkler rotating back and forth across the lawn. I wonder if this one will be like Gustav. That one made the sky glow a weird gray orange and though it was pouring rain and wind there was no thunder or lightening. When the violence stopped there was this misting for about 24 hours.
Anyway, back to it. To start with, it's been three years since the surgery (August 2005) and nearly three since the end of chemo (November 2005). Radiation went on into March of 2006, but the cancer free clock starts, depending on who you talk to, with the surgery date or the end of chemo. Three years is the magic number or the goal in my type of aggressive cancer. For most breast cancers the goal is 5 years. What that means is at this point the chance of the cancer returning is greatly reduced from what it was during those first three years.
Of course, cancer is evil, so you don't just develop cancer, go through treatment, and then go on your merry way, back to normal life. Cancer treatment leaves scars. (At this point you are saying to yourself, I thought this wasn't going to be about cancer. Please bear with me. This is the introduction leading up to what I have to say today and the reason I started a new blog.)
One of these scars is the daily nuisance of the "the big hand" from the lymph edema, which is much better these days, but still interferes with fine motor skills in my right hand (the important one). For example, I prefer fat pens (like a preschooler with fat pencils and crayons) because they are easier for me and my big hand to grip. You can imagine what an aggravation this is considering most of my hobbies involve fine motor skills.
I won't outline all the left over effects of cancer treatment, but I'd like to mention that my heart was also damaged by the chemo. When I saw the cardiologist the first time he did an echo cardiogram and discovered my heart had weakened (I knew this already, because I could feel it. I had to insist on the echo, because he wanted to stop at the stress test, which appeared to be fine). The left ventricular ejection fraction was 45 percent(normal is 55 to 75).
Fast forward six months - I had started exercising 4 to 5 days a week and lost 12 lbs. Yes, only twelve, explicative. I was riding my bike or on the stationary bike mostly. When I went back to the cardiologist and had another echo my EF was 50 to 60 percent, "a significant improvement" and I no longer have to go back to the cardiologist unless something happens. That's the good news.
So that brings us to today. I'm going along, exercising, feeling strong and healthy, mostly. The only issue has been my creatinine levels. The chemo did "speed up" my kidney disease and my creatinine has been rising since the third or so chemo. It's now at about 2.7. My nephrologist had told me some time ago that when it reaches 10 that's when dialysis enters the picture. Well, I found out that's not the clear cut situation.
First let me back up. I've been a bit tired the last few weeks. I didn't think much of it because in the last few weeks I haven't been exercising due to one thing or another (hurricanes, company, other various situations). I'm always more tired when I'm not regularly exercising. Also, I've been promoted to Medicaid Area Manager and I went from being a worker bee to supervising 12 people. I had no training and have no supervisory experience. Also, the office wasn't well managed before I took over (read - almost a disaster). Oh, and half of the people don't particularly like me and never have. And 4 people have more seniority, two of them by about 15 years, and weren't even considered for the position. I took over a crew with at least three major factions. All, but one, of my workers are women. Need I say more? What all that amounts to is that I've had more than normal stress lately. I wasn't surprised that I've been tired lately.
Okay, now to the point of starting this entire blog in the first place. Went to the nephrologist for a regular checkup. I usually go every six months, but somehow it turned into eight between this one and the last. Here's what she said. My phosphorus is way up and combined with the creatinine, click click click on the calculator and ... "your kidneys are only functioning at 23%." This wouldn't be too terrible, I mean they work, except that last year they were at 26%. They have declined considerably more than expected in one year. When function gets to 20% they normally start the process of arranging a kidney transplant. Unfortunately, I won't be able to have a transplant until I'm 5 years cancer free. Regardless of the type of cancer I had. If function gets close to 15% I'll have to go on dialysis. She's afraid this may happen before I can get a transplant. Once on dialysis life sucks and death comes within a few years.
What can I do, you ask? Good question. Sad answer, not much. One thing is I have to reduce my phosphorus intake as much as possible and take an expensive pill twice a day. How do I reduce phosphorus? All food contains phosphorus, but some have a lot more than others. I have to avoid all dairy products, beans (kidney beans, red beans, baked beans, etc - I can eat green beans), organ meats and processed meat products (hotdogs and sausage) nuts and seeds (peanut butter!!), whole grains, biscuits, pancakes, colas, pizza, chocolate. Basically, most everything. She gave me a list and I swear, except for the cream soup I had eaten every one of the foods on the list that week. Some of them several times.
Basically, the diet I have to follow is almost counter intuitive. For example, because I've been trying to eat better I've been eating smaller meals and have mid morning snacks of fruit and a piece of cheese or a spoonful of peanut butter, or yogurt. I've been making smoothies, also with yogurt or milk. Or I'll have some nuts, like cashews. And I've been buying whole wheat bread instead of white. All this has been poisoning me by provided too much phosphorus for my kidneys to process. I think the best thing is for me to eat broccoli and call it a day.
There you have it folks. I'm going to need a kidney transplant in a few years if I can make it that long or I'll be on dialysis in a few years. I don't know how the kidney transplant thing works yet, but the last nephrologist told me the kidney doesn't have to "match" so much anymore like they used to. In other words, it doesn't have to be a close family member or that rare matching stranger. The important thing is blood type. I have some research to do. The thought of dialysis terrifies me. I remember all too well the pain my mother and sister went through. I don't want to go there.
I'm saving all my spare change to take a really cool vacation next year. Just in case I have to go on dialysis. I'm hoping for time so that I can have a transplant instead. As scary as that is, I'd much prefer it to dialysis. I've met a few people who have had kidney transplants and they all say how strong and healthy they feel, like they haven't felt in many years. I want that.
That's that. Health update 2008. How did I manage to get such a lemon for a body? I remember how strong I was as a kid. I used to run everywhere. I had to be doing something physical all the time. I've tried to get that back with the healthy eating, bike riding and other exercise. Now I know why it's not been working as well as I'd like.
On a happy note ... What, there's a happy note? Kinda. For fun I'm taking a West Coast Swing dance class. You know, like the jitterbug. Pretty funny, huh? I know, rhythm less me! But I've always secretly wished I could jitterbug. It's a lot of fun. Only bad thing is that Luke had other obligations and can't take it with me. I have a girl friend who wanted to take it too. There are three of us without male partners, but it doesn't matter because we rotate around and everyone dances with everyone.
I'm sitting watching the wind from Ike whip through the trees. Occasionally a spurt of rain with slash against the window as if there were a sprinkler rotating back and forth across the lawn. I wonder if this one will be like Gustav. That one made the sky glow a weird gray orange and though it was pouring rain and wind there was no thunder or lightening. When the violence stopped there was this misting for about 24 hours.
Anyway, back to it. To start with, it's been three years since the surgery (August 2005) and nearly three since the end of chemo (November 2005). Radiation went on into March of 2006, but the cancer free clock starts, depending on who you talk to, with the surgery date or the end of chemo. Three years is the magic number or the goal in my type of aggressive cancer. For most breast cancers the goal is 5 years. What that means is at this point the chance of the cancer returning is greatly reduced from what it was during those first three years.
Of course, cancer is evil, so you don't just develop cancer, go through treatment, and then go on your merry way, back to normal life. Cancer treatment leaves scars. (At this point you are saying to yourself, I thought this wasn't going to be about cancer. Please bear with me. This is the introduction leading up to what I have to say today and the reason I started a new blog.)
One of these scars is the daily nuisance of the "the big hand" from the lymph edema, which is much better these days, but still interferes with fine motor skills in my right hand (the important one). For example, I prefer fat pens (like a preschooler with fat pencils and crayons) because they are easier for me and my big hand to grip. You can imagine what an aggravation this is considering most of my hobbies involve fine motor skills.
I won't outline all the left over effects of cancer treatment, but I'd like to mention that my heart was also damaged by the chemo. When I saw the cardiologist the first time he did an echo cardiogram and discovered my heart had weakened (I knew this already, because I could feel it. I had to insist on the echo, because he wanted to stop at the stress test, which appeared to be fine). The left ventricular ejection fraction was 45 percent(normal is 55 to 75).
Fast forward six months - I had started exercising 4 to 5 days a week and lost 12 lbs. Yes, only twelve, explicative. I was riding my bike or on the stationary bike mostly. When I went back to the cardiologist and had another echo my EF was 50 to 60 percent, "a significant improvement" and I no longer have to go back to the cardiologist unless something happens. That's the good news.
So that brings us to today. I'm going along, exercising, feeling strong and healthy, mostly. The only issue has been my creatinine levels. The chemo did "speed up" my kidney disease and my creatinine has been rising since the third or so chemo. It's now at about 2.7. My nephrologist had told me some time ago that when it reaches 10 that's when dialysis enters the picture. Well, I found out that's not the clear cut situation.
First let me back up. I've been a bit tired the last few weeks. I didn't think much of it because in the last few weeks I haven't been exercising due to one thing or another (hurricanes, company, other various situations). I'm always more tired when I'm not regularly exercising. Also, I've been promoted to Medicaid Area Manager and I went from being a worker bee to supervising 12 people. I had no training and have no supervisory experience. Also, the office wasn't well managed before I took over (read - almost a disaster). Oh, and half of the people don't particularly like me and never have. And 4 people have more seniority, two of them by about 15 years, and weren't even considered for the position. I took over a crew with at least three major factions. All, but one, of my workers are women. Need I say more? What all that amounts to is that I've had more than normal stress lately. I wasn't surprised that I've been tired lately.
Okay, now to the point of starting this entire blog in the first place. Went to the nephrologist for a regular checkup. I usually go every six months, but somehow it turned into eight between this one and the last. Here's what she said. My phosphorus is way up and combined with the creatinine, click click click on the calculator and ... "your kidneys are only functioning at 23%." This wouldn't be too terrible, I mean they work, except that last year they were at 26%. They have declined considerably more than expected in one year. When function gets to 20% they normally start the process of arranging a kidney transplant. Unfortunately, I won't be able to have a transplant until I'm 5 years cancer free. Regardless of the type of cancer I had. If function gets close to 15% I'll have to go on dialysis. She's afraid this may happen before I can get a transplant. Once on dialysis life sucks and death comes within a few years.
What can I do, you ask? Good question. Sad answer, not much. One thing is I have to reduce my phosphorus intake as much as possible and take an expensive pill twice a day. How do I reduce phosphorus? All food contains phosphorus, but some have a lot more than others. I have to avoid all dairy products, beans (kidney beans, red beans, baked beans, etc - I can eat green beans), organ meats and processed meat products (hotdogs and sausage) nuts and seeds (peanut butter!!), whole grains, biscuits, pancakes, colas, pizza, chocolate. Basically, most everything. She gave me a list and I swear, except for the cream soup I had eaten every one of the foods on the list that week. Some of them several times.
Basically, the diet I have to follow is almost counter intuitive. For example, because I've been trying to eat better I've been eating smaller meals and have mid morning snacks of fruit and a piece of cheese or a spoonful of peanut butter, or yogurt. I've been making smoothies, also with yogurt or milk. Or I'll have some nuts, like cashews. And I've been buying whole wheat bread instead of white. All this has been poisoning me by provided too much phosphorus for my kidneys to process. I think the best thing is for me to eat broccoli and call it a day.
There you have it folks. I'm going to need a kidney transplant in a few years if I can make it that long or I'll be on dialysis in a few years. I don't know how the kidney transplant thing works yet, but the last nephrologist told me the kidney doesn't have to "match" so much anymore like they used to. In other words, it doesn't have to be a close family member or that rare matching stranger. The important thing is blood type. I have some research to do. The thought of dialysis terrifies me. I remember all too well the pain my mother and sister went through. I don't want to go there.
I'm saving all my spare change to take a really cool vacation next year. Just in case I have to go on dialysis. I'm hoping for time so that I can have a transplant instead. As scary as that is, I'd much prefer it to dialysis. I've met a few people who have had kidney transplants and they all say how strong and healthy they feel, like they haven't felt in many years. I want that.
That's that. Health update 2008. How did I manage to get such a lemon for a body? I remember how strong I was as a kid. I used to run everywhere. I had to be doing something physical all the time. I've tried to get that back with the healthy eating, bike riding and other exercise. Now I know why it's not been working as well as I'd like.
On a happy note ... What, there's a happy note? Kinda. For fun I'm taking a West Coast Swing dance class. You know, like the jitterbug. Pretty funny, huh? I know, rhythm less me! But I've always secretly wished I could jitterbug. It's a lot of fun. Only bad thing is that Luke had other obligations and can't take it with me. I have a girl friend who wanted to take it too. There are three of us without male partners, but it doesn't matter because we rotate around and everyone dances with everyone.
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