I am sure I am only one of millions of people who live with pain. I mean everyone has basic pains in life - when was the last time you stubbed your toe, pinched your finger, had a headache? But those go away. The people who live with pain basically don't have pain free times. Right now for example, my back is aching all up through the upper half... I just got up so my ankle is doing okay but I am sure it will kick in later (like when I start my balancing exercises as I cook breakfast). Other people I am sure are in much worse shape than I. I just get to whine about it here (and to my husband and anyone else near by).
This article from the New York Times puts another perspective on the issue of pain. We want to just survive it...And I think it puts other things a little more in perspective. How bad is a stubbed toe compared to something that doesn't go away? Suck it up and deal with it. That's all I have to say at this point. So your knee aches from too much running? Too bad, it will get better. I am running out of sympathy for the little stuff.
Here's the deal with my back. It hurts almost all the time. Every so often there is a nano-second of pain free and I enjoy it but then it quickly goes away. There is no surgery to cure what is going on with my back. It is not an option. I have lower back problems which cause hip and sacroliac joint pain. I also have pain that radiates through my upper back and into my neck (and is kind of a mystery - lower back pain goes down, not up). Sometimes its a dull ache and sometimes its an ice pick sticking into me and sometimes its in between. I am stuck in limbo.
I go back to the doctor in mid-November for a few more discussions and questions about what to do next, are these stupid drugs that I have been on for months helping, and where do we go from here but there is no secret answer. I have had basically all the back pain options there are other than more cortisone injections and they only help specific areas - like a single joint. So I don't know. I hate pain.
On my sympathy and cheerfulness levels, they are way down these days. Be forewarned, I maybe crabby for no reason. Otherwise, life goes on. I take my pills and go off on my next adventure.
Now I reread this post and boy am I negative this morning. perhaps I need coffee. Perhaps I need a vacation (but wait I just got back from one). But I am going to my many-year (too many to say) college reunion tomorrow where I will pretend I am still in my relatively healthy 22 year old body wearing a size 8...
Wednesday, September 30, 2009
Tuesday, September 29, 2009
A'Wonder' Drug
So now I have been on Lyrica, a 'wonder' drug I believe, since early August, for my back pain. I was warned initially about side effects - some people get dizzy etc and to call the office after a few days to make sure I was handling it well. I did and thought I was having some progress here. That was then. I do think it helped. It certainly helps me sleep at night - which the doctor said it would do. But I was thinking it was also helping the pain.
Now I am not so sure. As I sit here with the same pain levels I had before I started taking it, I wonder if it is really done any good. If it is doing good, maybe my pain levels are increasing which is why I still am in pain. I don't know. But to be proactive, I decided to use that useful medical tool called the internet to look up side effects. (Go check out your prescription at www.rxlist.com - you get the professional and consumer information and lots of reviews.)
First I have found out lots of people hate Lyrica. But then I take that as only the people who have problems complain. People who are happy with it don't comment, unless they are really bored or something or want to put their two cents in. Anyway, I thought that I can just ignore those.
Then I read the side effects (direct quote from rxlist.com):
"* muscle problems, muscle pain, soreness, or weakness. If you have these symptoms, especially if you feel sick and have a fever, tell your healthcare provider right away.
* problems with your eyesight, including blurry vision. Call your healthcare provider if you have any changes in your eyesight.
* weight gain. If you have diabetes, weight gain may affect the management of your diabetes. Weight gain can also be a serious problem for people with heart problems.
* feeling “high” "
I haven't had muscle problems really. Or problems with my eyes. Weight gain - a friend told me they call it the 'fat drug' as some people gain tons of weight on it - a chief complaint in the user reviews. I will report that to date I have not experienced the 'high' feeling from Lyrica (or any other causes in quite a large number of years). They also talk about allergic reactions and don't drink alcohol with Lyrica or it can cause dizziness or sleepiness.
I have gone back and forth with myself about should I continue or not. Basically I was told take it for three months and come back and see the doctor to see what's next and how I am doing. Sometimes I think I want to ask for something different because I am not sure it is helping me. Some people in user reviews mentioned it only worked for a few weeks and stopped. Maybe this happened to me as well. Its hard to tell. Also, its relatively expensive ($40/month after insurance pays a large sum) and the weight gain issue is just a general aggravation. If I was pain free and gaining weight, I might not mind as much.
Now its not that I feel like I am turning into a total pig while on Lyrica but I have gained a total of 2 lbs but was also hoping that the change in my thyroid medication a few months ago would help me lose some weight. But I do have to say we ate our way through vacation and I haven't been able to go for walks for more than a month because of my ankle.
I think for now (or my current thought) is to continue Lyrica for now until my appointment in November and then see what he says and maybe find out what my other options are. In the meantime, I am going for my morning walk...
Now I am not so sure. As I sit here with the same pain levels I had before I started taking it, I wonder if it is really done any good. If it is doing good, maybe my pain levels are increasing which is why I still am in pain. I don't know. But to be proactive, I decided to use that useful medical tool called the internet to look up side effects. (Go check out your prescription at www.rxlist.com - you get the professional and consumer information and lots of reviews.)
First I have found out lots of people hate Lyrica. But then I take that as only the people who have problems complain. People who are happy with it don't comment, unless they are really bored or something or want to put their two cents in. Anyway, I thought that I can just ignore those.
Then I read the side effects (direct quote from rxlist.com):
"* muscle problems, muscle pain, soreness, or weakness. If you have these symptoms, especially if you feel sick and have a fever, tell your healthcare provider right away.
* problems with your eyesight, including blurry vision. Call your healthcare provider if you have any changes in your eyesight.
* weight gain. If you have diabetes, weight gain may affect the management of your diabetes. Weight gain can also be a serious problem for people with heart problems.
* feeling “high” "
I haven't had muscle problems really. Or problems with my eyes. Weight gain - a friend told me they call it the 'fat drug' as some people gain tons of weight on it - a chief complaint in the user reviews. I will report that to date I have not experienced the 'high' feeling from Lyrica (or any other causes in quite a large number of years). They also talk about allergic reactions and don't drink alcohol with Lyrica or it can cause dizziness or sleepiness.
I have gone back and forth with myself about should I continue or not. Basically I was told take it for three months and come back and see the doctor to see what's next and how I am doing. Sometimes I think I want to ask for something different because I am not sure it is helping me. Some people in user reviews mentioned it only worked for a few weeks and stopped. Maybe this happened to me as well. Its hard to tell. Also, its relatively expensive ($40/month after insurance pays a large sum) and the weight gain issue is just a general aggravation. If I was pain free and gaining weight, I might not mind as much.
Now its not that I feel like I am turning into a total pig while on Lyrica but I have gained a total of 2 lbs but was also hoping that the change in my thyroid medication a few months ago would help me lose some weight. But I do have to say we ate our way through vacation and I haven't been able to go for walks for more than a month because of my ankle.
I think for now (or my current thought) is to continue Lyrica for now until my appointment in November and then see what he says and maybe find out what my other options are. In the meantime, I am going for my morning walk...
Monday, September 28, 2009
I feel so rejected
Yesterday I was rejected by a gym. I saw their booth at the festival on Saturday and stopped by yesterday to get a tour. I expected to get the hard sell. I mean when was the last time you could walk into a gym and ask for a tour and not get a hard sell. (Its worse than going into a used car dealership and taking a test drive.) I didn't. They told me to come back after I get a green light from the physical therapist on my ankle. Maybe they are scared of my list of medical ailments. I mean I only told them about my back, ankle, partially torn ACL (result of a bad day of skiing), and shoulder (potential lymphedema) issues.
This is actually a fairly unique (read expensive) gym. It is owned and operated by physical therapists. When you join you get a full check out by a physical therapist and then a work out plan is custom designed for you by an exercise physiologist (now that's a fancy term). There is always someone around to help you or a mental boost if you need it. Also, every three months, they revamp your exercise program to where you are at that point.
With my back, ankle, knee, and shoulder, I have problems exercising. My ankle hurts when I bend it and I am trying to get it to heal. I can't lift anything over 20 lbs and my back also likes to complain about many different exercises. And my back has complicated issues for my hips as well. My knee doesn't like some cardio equipment. And I have to be careful about shoulder stuff because of potential lymphedema from my lymph node removal. (But that's it. I don't think I have other issues relative to exercise.)
I usually walk most days but had to give it up for a while. I can't lift at the gym because it makes my back hurt. And I also don't know how to use a lot of the different equipment and am chicken that I might hurt myself if I try. So I was rejected. But I will wait and see what the physical therapist says and maybe I'll join in a month or two.
Yesterday also my back was not nice at all. It was very painful. So evidently I have learned not to expect to do something on my feet for 3.5 hours and not be in pain for days after. Actually I should say not be in more pain for days after. My ice pack is my friend.
In the meantime, I am off to work for the day. Walter is leaving on a business trip this afternoon. By the time he returns, I will be off at my college reunion so we won't see each other for a week. This never happens. But kitty and I will deal (meaning we will develop bad eating habits and feel neglected).
This is actually a fairly unique (read expensive) gym. It is owned and operated by physical therapists. When you join you get a full check out by a physical therapist and then a work out plan is custom designed for you by an exercise physiologist (now that's a fancy term). There is always someone around to help you or a mental boost if you need it. Also, every three months, they revamp your exercise program to where you are at that point.
With my back, ankle, knee, and shoulder, I have problems exercising. My ankle hurts when I bend it and I am trying to get it to heal. I can't lift anything over 20 lbs and my back also likes to complain about many different exercises. And my back has complicated issues for my hips as well. My knee doesn't like some cardio equipment. And I have to be careful about shoulder stuff because of potential lymphedema from my lymph node removal. (But that's it. I don't think I have other issues relative to exercise.)
I usually walk most days but had to give it up for a while. I can't lift at the gym because it makes my back hurt. And I also don't know how to use a lot of the different equipment and am chicken that I might hurt myself if I try. So I was rejected. But I will wait and see what the physical therapist says and maybe I'll join in a month or two.
Yesterday also my back was not nice at all. It was very painful. So evidently I have learned not to expect to do something on my feet for 3.5 hours and not be in pain for days after. Actually I should say not be in more pain for days after. My ice pack is my friend.
In the meantime, I am off to work for the day. Walter is leaving on a business trip this afternoon. By the time he returns, I will be off at my college reunion so we won't see each other for a week. This never happens. But kitty and I will deal (meaning we will develop bad eating habits and feel neglected).
Sunday, September 27, 2009
Well, that was a fun day
But what was I thinking? I had a great time yesterday. I volunteered at our town's annual street fair for the American Cancer Society Relay For Life booth. I went early when it started with my husband and we hit the library's book sale and a bunch of booths and then had an early lunch. Originally I said I would be there from 1130 to 130 or long if my back held out. I was there until it ended at 3. To be fair it was crowded right up until the end because we had perfect weather. Well, unfortunately my back thinks I should have left at 12 or so because it is VERY unhappy today even though I iced it for an hour after I got home. I may need to call the doctor before my 3 month follow up if this keeps up.
Anyway, I had a great time talking to people. Its amazing, you stand in front of a sign that says American Cancer Society and people come out of the woodwork to tell you one of two things: 1. How great an organization the ACS is and what wonderful things it does. Or, 2. their medical history including the details of their cancer diagnoses or who they know who died from cancer. I was pretty astounded. But we got a lot of people signed up and informed a lot of people about Relay and how they can help.
In the middle of all the hoohah (and there was lots of that as we were almost straight across from the band), the local cable access station came over and asked if they could film a commercial and interview me. Now let me tell you how much time I spent on my hair yesterday. I took a shower and washed my hair, brushed it once and left the house. Three hours later with no hair brush anywhere near by, I was filmed to be on TV. I am sure I looked like I'm not sure what. And then I was told by the other volunteers that they show the clips from the interviews over and over again on the cable access. So there will be lots of opportunities to see me with bad hair. (But at least I have hair. Actually this might be one of my first possible bad hair days in a couple of years.) You can only see me on TV if you live in the same town as me and watch cable access TV.
The crowds were great and there was face painting and hair painting for the kids (and adults if they wanted). We gave out lollipops and stickers as well as info packets. It was a nice day outside. Today to recover I am going to do lots of nothing - which includes laundry and cooking and probably also cooking shows. My back hurts and that's my story and I'm sticking to it.
Anyway, I had a great time talking to people. Its amazing, you stand in front of a sign that says American Cancer Society and people come out of the woodwork to tell you one of two things: 1. How great an organization the ACS is and what wonderful things it does. Or, 2. their medical history including the details of their cancer diagnoses or who they know who died from cancer. I was pretty astounded. But we got a lot of people signed up and informed a lot of people about Relay and how they can help.
In the middle of all the hoohah (and there was lots of that as we were almost straight across from the band), the local cable access station came over and asked if they could film a commercial and interview me. Now let me tell you how much time I spent on my hair yesterday. I took a shower and washed my hair, brushed it once and left the house. Three hours later with no hair brush anywhere near by, I was filmed to be on TV. I am sure I looked like I'm not sure what. And then I was told by the other volunteers that they show the clips from the interviews over and over again on the cable access. So there will be lots of opportunities to see me with bad hair. (But at least I have hair. Actually this might be one of my first possible bad hair days in a couple of years.) You can only see me on TV if you live in the same town as me and watch cable access TV.
The crowds were great and there was face painting and hair painting for the kids (and adults if they wanted). We gave out lollipops and stickers as well as info packets. It was a nice day outside. Today to recover I am going to do lots of nothing - which includes laundry and cooking and probably also cooking shows. My back hurts and that's my story and I'm sticking to it.
Saturday, September 26, 2009
How long can you balance on one foot?
This is for real. I went back to the ankle doctor yesterday. She was supposed to say everything was fine and I'm all set. But she didn't. (I wish they would get their script right.) First she gave me balance exercises. If you don't know what these are this is stand on your bad ankle (and pretend it doesn't hurt) and balance for a minute at a time (not kidding about the minute part), five times in a row in a ten minute period. Twice a day. How long can you stand on one foot and balance? One minute is a really long time. Especially when your ankle hurts. Apparently this is supposed to reteach your body about your ankle and using it. I used to ice skate a million years ago so I am pretty good about balance. Just tell my ankle to stop hurting. And stopping swelling up.
She also wants me to go to physical therapy. Two or three times a week for six to eight weeks. And then go back and see her. Why can't I have a doctor say 'you are fine, go away'? They don't even need to be that nice. I can handle it. But here's the funny part, she said 'we'll fax your order to PT today and they'll call you Monday'. Last time I had PT (for my back), they didn't call for two weeks and then they said it would take another two weeks to get me in and another week or ten days to start regular sessions. Now maybe they've changed their policies or ankles and backs are different (I know they are different body parts but maybe PT-wise its different) or something else. But I will be pleasantly surprised to get a call anytime in the next week. In the meantime, I'll work on my balancing.
Speaking of scheduling, in addition to setting up PT, the doctor wanted me back in six to eight weeks for a follow up. So the appointment setter said 'hows October 23?' I said 'do you have anything later?' She said 'how's October 26?' (Isn't that four weeks from yesterday?) I said, deciding to be more specific 'do you have anything in November? The doctor wanted a follow up in six to eight weeks.' She said 'The next thing I have is November 23rd.' I said 'that would be just fine' and on my calendar that is eight weeks from now, not four. Maybe it will be better by then.
Actually I'm not surprised that I have PT. And in a way I would prefer it so my ankle really heals correctly and I run less of a risk of not healing right and having a long term problem ankle. And PT is relatively convenient - its 5 minutes from home and I can smush (technical term) it into my schedule. But I have already had 39 doctor appointments this year and wouldn't mind a break.
Otherwise, another long day yesterday. My back decided it doesn't like going out to dinner and protested. How does it protest? Just say 'little ice picks stabbing into my back'. Well, only in selected areas (otherwise, I wouldn't think of ice picks, I would have something else in mind). Today, I am volunteering at a local community event for the American Cancer Society. This means I will go sit at a table for 2-3 hours (depending on my back) and try to get volunteers and donations. But I also get to eat various yummy things from all the local restaurants which will also be at the fair.
She also wants me to go to physical therapy. Two or three times a week for six to eight weeks. And then go back and see her. Why can't I have a doctor say 'you are fine, go away'? They don't even need to be that nice. I can handle it. But here's the funny part, she said 'we'll fax your order to PT today and they'll call you Monday'. Last time I had PT (for my back), they didn't call for two weeks and then they said it would take another two weeks to get me in and another week or ten days to start regular sessions. Now maybe they've changed their policies or ankles and backs are different (I know they are different body parts but maybe PT-wise its different) or something else. But I will be pleasantly surprised to get a call anytime in the next week. In the meantime, I'll work on my balancing.
Speaking of scheduling, in addition to setting up PT, the doctor wanted me back in six to eight weeks for a follow up. So the appointment setter said 'hows October 23?' I said 'do you have anything later?' She said 'how's October 26?' (Isn't that four weeks from yesterday?) I said, deciding to be more specific 'do you have anything in November? The doctor wanted a follow up in six to eight weeks.' She said 'The next thing I have is November 23rd.' I said 'that would be just fine' and on my calendar that is eight weeks from now, not four. Maybe it will be better by then.
Actually I'm not surprised that I have PT. And in a way I would prefer it so my ankle really heals correctly and I run less of a risk of not healing right and having a long term problem ankle. And PT is relatively convenient - its 5 minutes from home and I can smush (technical term) it into my schedule. But I have already had 39 doctor appointments this year and wouldn't mind a break.
Otherwise, another long day yesterday. My back decided it doesn't like going out to dinner and protested. How does it protest? Just say 'little ice picks stabbing into my back'. Well, only in selected areas (otherwise, I wouldn't think of ice picks, I would have something else in mind). Today, I am volunteering at a local community event for the American Cancer Society. This means I will go sit at a table for 2-3 hours (depending on my back) and try to get volunteers and donations. But I also get to eat various yummy things from all the local restaurants which will also be at the fair.
Friday, September 25, 2009
Drawing the line
There is a fine line of living with 'cancer'. Once you have cancer, you get put in the special group of 'people living with cancer' and you can't get out. Ever. Sorry. That's the bummer part of it. But anyway, sometimes you get to pretend you aren't in the group. For example, you go out in public and unless you tell people, no one knows you have cancer. Unless you tell them.
Why tell people? Well, if its a medical professional who needs to know, its probably wise. If its a new person you just met, its probably not wise (and don't be surprised to see tail lights in the distance if you do). If you can't do something because of medical issues, you probably should. But you don't need to. I was talking to someone I work with yesterday about flu shots because we work in a school system. He said 'will you get a flu shot?'. I said 'yes, but not because I work in a school but because of other health issues.' He didn't need to know. I didn't tell him. No big deal. It could be any number of health issues that would make me more inclined to get a flu shot, not just cancer.
Then last night I was watching one of my secret addiction cooking competition shows. There is one contestant who keeps saying she had lymphoma four years ago. I didn't mind when the show started and don't really think its a big deal. Then last night's episode contained sections where some of the other contestants were saying basically just because she had lymphoma doesn't mean she can cook. She is clearly not the strongest contestant and I wouldn't be surprised if she is axed in the next few weeks. I think the other contestants don't appreciate her skills and feel she falls back on the 'I had lymphoma' thing too often. So my question is did she cross the line of trying to justify why she is on the show - that she had lymphoma not because of cooking skills? I don't know her personally and think her cooking skills are probably pretty good if she made it that far. And chances are the quotes are skewed and taken out of context because they make great sound bites and the network can play up the antagonism between the contestants.
If I was on a cooking show (and I will never be because I don't cook THAT well and I will never be in front of cameras), I don't think I would walk around saying, 'I'm here because I have cancer, not because I can cook'. I don't think this contestant means to be that way either.
But my point is, isn't there a line basically that goes from being someone living with cancer to being someone who is letting cancer define them? A cancer diagnosis can be a life changing moment for people but it doesn't need to define them for the rest of their life. Part of learning to live with it is NOT letting it define you.
Wow! That was a mouthful this morning. I think I need breakfast and more coffee to recover.
Why tell people? Well, if its a medical professional who needs to know, its probably wise. If its a new person you just met, its probably not wise (and don't be surprised to see tail lights in the distance if you do). If you can't do something because of medical issues, you probably should. But you don't need to. I was talking to someone I work with yesterday about flu shots because we work in a school system. He said 'will you get a flu shot?'. I said 'yes, but not because I work in a school but because of other health issues.' He didn't need to know. I didn't tell him. No big deal. It could be any number of health issues that would make me more inclined to get a flu shot, not just cancer.
Then last night I was watching one of my secret addiction cooking competition shows. There is one contestant who keeps saying she had lymphoma four years ago. I didn't mind when the show started and don't really think its a big deal. Then last night's episode contained sections where some of the other contestants were saying basically just because she had lymphoma doesn't mean she can cook. She is clearly not the strongest contestant and I wouldn't be surprised if she is axed in the next few weeks. I think the other contestants don't appreciate her skills and feel she falls back on the 'I had lymphoma' thing too often. So my question is did she cross the line of trying to justify why she is on the show - that she had lymphoma not because of cooking skills? I don't know her personally and think her cooking skills are probably pretty good if she made it that far. And chances are the quotes are skewed and taken out of context because they make great sound bites and the network can play up the antagonism between the contestants.
If I was on a cooking show (and I will never be because I don't cook THAT well and I will never be in front of cameras), I don't think I would walk around saying, 'I'm here because I have cancer, not because I can cook'. I don't think this contestant means to be that way either.
But my point is, isn't there a line basically that goes from being someone living with cancer to being someone who is letting cancer define them? A cancer diagnosis can be a life changing moment for people but it doesn't need to define them for the rest of their life. Part of learning to live with it is NOT letting it define you.
Wow! That was a mouthful this morning. I think I need breakfast and more coffee to recover.
Thursday, September 24, 2009
Morning statistics
First, go read this comic to get a smile on your face. Then go get a caffeinated substance and come back (or wait until your brain is functioning for the day) and check this link for statistics on what Americans think about health care reform and if they are able to pay for insurance, medical care, etc and what they think about the troops Afghanistan and the president - all very 'light' topics to start the day.
First I found it interesting that the local TV station focused on a very small number of points from the report - I think they call this skimming the highlights. I read the damn thing. Its 22 pages. I got a second cup of the coffee while halfway through (not that is boring but I ran out of coffee). What does the report tell me:
- There are lots of confused Americans about health care reform and no one really knows how we will figure out a new plan.
- Most Americans do go to the doctor regularly and have insurance.
- The targets of health care reform are going to be insurance companies and hospitals. (What about medical companies who see their products expensively here to pay for 'research' but are available much cheaper out of the US?)
- All the sin taxes are going up - cigarettes, alcohol, etc. - to pay for these changes.
- Finally, most people like the president, what he is doing, and the economy's direction. I am not sure how this fits into a survey on medical issues and health care reform, but they snuck it in.
How does this report help us? I am not sure. It does allow us to be confused in places and overwhelmed with data in others but it also gives us a snapshot of where we are. Perhaps it will be more significant if they can go back in six months and show us what people think on the health care issues (not the political crap) as compared to now. Then we mght be able to better judge it.
But now that you are all bored to death. I am working from home, making broccoli soup, and going for a walk with a friend this morning. She got pneumonia about the same time I sprained my ankle so we have resorted to the more fattening coffee options for quite a while. Today is our first walk since sometime in early July. We will go slow and stay on flat ground - along the lakes where it is pretty - and not go too far. But I really have to work first. None of this internet stuff this morning for me... Well, maybe a little.
First I found it interesting that the local TV station focused on a very small number of points from the report - I think they call this skimming the highlights. I read the damn thing. Its 22 pages. I got a second cup of the coffee while halfway through (not that is boring but I ran out of coffee). What does the report tell me:
- There are lots of confused Americans about health care reform and no one really knows how we will figure out a new plan.
- Most Americans do go to the doctor regularly and have insurance.
- The targets of health care reform are going to be insurance companies and hospitals. (What about medical companies who see their products expensively here to pay for 'research' but are available much cheaper out of the US?)
- All the sin taxes are going up - cigarettes, alcohol, etc. - to pay for these changes.
- Finally, most people like the president, what he is doing, and the economy's direction. I am not sure how this fits into a survey on medical issues and health care reform, but they snuck it in.
How does this report help us? I am not sure. It does allow us to be confused in places and overwhelmed with data in others but it also gives us a snapshot of where we are. Perhaps it will be more significant if they can go back in six months and show us what people think on the health care issues (not the political crap) as compared to now. Then we mght be able to better judge it.
But now that you are all bored to death. I am working from home, making broccoli soup, and going for a walk with a friend this morning. She got pneumonia about the same time I sprained my ankle so we have resorted to the more fattening coffee options for quite a while. Today is our first walk since sometime in early July. We will go slow and stay on flat ground - along the lakes where it is pretty - and not go too far. But I really have to work first. None of this internet stuff this morning for me... Well, maybe a little.
Wednesday, September 23, 2009
An offer to consider
I was asked yesterday by a local organization if I would like to be featured in an article in the paper on breast cancer people. They are doing a series of five articles in October and would want to include me as one of the people they feature. Well, at first glance, an article about me? Cool, neat. No, I think.
I mean if I do it it would help provide a nice human interest story about cancer and what it does to people's lives. But then my name would be forever googled and come up with cancer. And, do I really want people to know my medical history? Thanks to the internet, what ever is out there is out there for good. You can't get rid of it. Professionally, if I ever want to apply for a job or something and they looked me up on line, it would probably come up. I was in a tv show last year where my name was included once in print on line. But a whole article?
Then there is the whole privacy issue. I don't want to be known as the person who had cancer twice (poor thing, did you know she had cancer twice? whispers around me). Yes, that does happen. The whispering thing. People who walk away when you say cancer. Or look at you like you are a freak because of cancer. Or want to tell you their medical history. I have a friend who said that when people look at him strangely because of his cancer, he coughs in their direction, which I think is actually a brilliant idea. Let me cough some cancer cooties on to you.
Also, then there is the labeling issue. I am not a cancer survivor. I am a person living with cancer. Can they do a story without calling me a survivor? I would want to know that up front.
I mentioned this to my husband and his first response was 'well you write in your blog all the time". But my blog is different. If you know me, you know my name and about me already. If you don't know me, you don't have the two pieces of information to connect (and aren't living in the same town). You might have found my blog through googling 'breast cancer blogs' or a message board. But its different. In some ways, while the internet opens up the world, it allows people to remain relatively anonymous (unless you post your information).
I have to think about this. I was asked yesterday and have gone back and forth in my mind on it several times. I don't know. I think I only have a few days before they need a decision.
I mean if I do it it would help provide a nice human interest story about cancer and what it does to people's lives. But then my name would be forever googled and come up with cancer. And, do I really want people to know my medical history? Thanks to the internet, what ever is out there is out there for good. You can't get rid of it. Professionally, if I ever want to apply for a job or something and they looked me up on line, it would probably come up. I was in a tv show last year where my name was included once in print on line. But a whole article?
Then there is the whole privacy issue. I don't want to be known as the person who had cancer twice (poor thing, did you know she had cancer twice? whispers around me). Yes, that does happen. The whispering thing. People who walk away when you say cancer. Or look at you like you are a freak because of cancer. Or want to tell you their medical history. I have a friend who said that when people look at him strangely because of his cancer, he coughs in their direction, which I think is actually a brilliant idea. Let me cough some cancer cooties on to you.
Also, then there is the labeling issue. I am not a cancer survivor. I am a person living with cancer. Can they do a story without calling me a survivor? I would want to know that up front.
I mentioned this to my husband and his first response was 'well you write in your blog all the time". But my blog is different. If you know me, you know my name and about me already. If you don't know me, you don't have the two pieces of information to connect (and aren't living in the same town). You might have found my blog through googling 'breast cancer blogs' or a message board. But its different. In some ways, while the internet opens up the world, it allows people to remain relatively anonymous (unless you post your information).
I have to think about this. I was asked yesterday and have gone back and forth in my mind on it several times. I don't know. I think I only have a few days before they need a decision.
Tuesday, September 22, 2009
I can't think of a title
Maybe its too early but I can't think of a title. I was going to write about what I want in health care reform but I think the answer is I'm not sure. I know I do want to pay less. I do think more Americans need health insurance. I do think people shouldn't stay at jobs so their insurance doesn't change and they aren't covered for a pre-existing condition (especially since I have had one of those for so long). However I am comforted by reading this post on an informal poll that was done to learn what people know about health care reform. I think we are a country of confused people right now.
But I am sure it will all sort out in the coming months and years and be endlessly tweaked and changed as it turns out that what they put on paper, doesn't really work in real life. Because it is real life and its never the same as what they put on paper.
I am all discombobulated this morning because when I went downstairs to get a second cup of coffee, I found the dead mouse in the mouse trap. My husband 'forgot to look' It was on the stove because that's where the mouse was hanging out. How do you not look on the stove when you turn the light on over the stove? Needless to say, both my husband and cat are in the dog house so to speak over this. I should not have to find dead mousies. That is their job. I don't care which one but I seem to see far too many of them and am totally grossed out at this point. Yuck!
Yesterday was back to reality and work. Work was busy. They missed me (its nice to be missed - makes you feel like you actually are accomplishing things when you are there). But by the time I got home, my back hurt. And then, after moving stuff around last night before the electrician comes today, my back really hurt. Evidently my back pain vacation is over. I am blaming the cat for this. Its his fault. He cannot be picked up any more (except when he looks really cute and pitiful because his back legs don't work right and he can't jump up on things any more).
Today, I am working from home until I go to the dentist. There will be an electrician here to repair the disaster of our downstairs bathroom. We removed the old medicine cabinet to find a buried light plate (switched in the on position, evidently powering the old light) which is rather scary and is being removed. I have lots of work. I am also rambling today so I will go get more coffee and do something else besides babble.
But I am sure it will all sort out in the coming months and years and be endlessly tweaked and changed as it turns out that what they put on paper, doesn't really work in real life. Because it is real life and its never the same as what they put on paper.
I am all discombobulated this morning because when I went downstairs to get a second cup of coffee, I found the dead mouse in the mouse trap. My husband 'forgot to look' It was on the stove because that's where the mouse was hanging out. How do you not look on the stove when you turn the light on over the stove? Needless to say, both my husband and cat are in the dog house so to speak over this. I should not have to find dead mousies. That is their job. I don't care which one but I seem to see far too many of them and am totally grossed out at this point. Yuck!
Yesterday was back to reality and work. Work was busy. They missed me (its nice to be missed - makes you feel like you actually are accomplishing things when you are there). But by the time I got home, my back hurt. And then, after moving stuff around last night before the electrician comes today, my back really hurt. Evidently my back pain vacation is over. I am blaming the cat for this. Its his fault. He cannot be picked up any more (except when he looks really cute and pitiful because his back legs don't work right and he can't jump up on things any more).
Today, I am working from home until I go to the dentist. There will be an electrician here to repair the disaster of our downstairs bathroom. We removed the old medicine cabinet to find a buried light plate (switched in the on position, evidently powering the old light) which is rather scary and is being removed. I have lots of work. I am also rambling today so I will go get more coffee and do something else besides babble.
Monday, September 21, 2009
I admit I made a mistake
But first before I admit, here is my annual reminder - October is coming up and its all about support breast cancer but before you buy a single thing, go check this website and find out what's really going on: www.thinkbeforeyoupink.org.
So, I admit I made a mistake. I did something yesterday I shouldn't have. If I can just figure out what it was, I promise I won't do it again. But I have no idea what it was. I do know it was something that made my back hurt. It was being so good. But not any more. Yesterday, I did laundry, went for a walk, dealt with the cat, gardened, pretended I was a domestic goddess (and vacuumed a tiny bit), cooked a ton of food, and went food shopping.
All of these things are things I have not done for a week and my back felt much better. So one of them must be the culprit that caused back pain. None of them violated the rule of 20 lbs. I would happily give up laundry and being a domestic goddess. But I would prefer not to give up walking (helpful for getting from point A to point B), gardening, the cat, cooking or shopping. The cat weighs a paltry 16 lbs so I am sure its not him. The only vacuuming I did was because of the construction in our downstairs bathroom. (Walter took out the old ceiling fan and you wouldn't believe the icky stuff that came out with it - hence the vacuuming.) It could just be a combination of standing around that my back didn't like. Anyway, I will make a note of it and see if I can narrow it down. In the meantime, I have pain meds to take.
We are back from vacation and back to reality. The cat is also back from vacation. He had quite a nice time. He was very spoiled. But he still missed us. I can tell because he insisted on walking around on top of us while we were sleeping last night (with his delicate 16 lbs). I have a ton of errands to run and work to do this morning before going to work. But at least I can take a walk first to take the edge off returning to work.
So, I admit I made a mistake. I did something yesterday I shouldn't have. If I can just figure out what it was, I promise I won't do it again. But I have no idea what it was. I do know it was something that made my back hurt. It was being so good. But not any more. Yesterday, I did laundry, went for a walk, dealt with the cat, gardened, pretended I was a domestic goddess (and vacuumed a tiny bit), cooked a ton of food, and went food shopping.
All of these things are things I have not done for a week and my back felt much better. So one of them must be the culprit that caused back pain. None of them violated the rule of 20 lbs. I would happily give up laundry and being a domestic goddess. But I would prefer not to give up walking (helpful for getting from point A to point B), gardening, the cat, cooking or shopping. The cat weighs a paltry 16 lbs so I am sure its not him. The only vacuuming I did was because of the construction in our downstairs bathroom. (Walter took out the old ceiling fan and you wouldn't believe the icky stuff that came out with it - hence the vacuuming.) It could just be a combination of standing around that my back didn't like. Anyway, I will make a note of it and see if I can narrow it down. In the meantime, I have pain meds to take.
We are back from vacation and back to reality. The cat is also back from vacation. He had quite a nice time. He was very spoiled. But he still missed us. I can tell because he insisted on walking around on top of us while we were sleeping last night (with his delicate 16 lbs). I have a ton of errands to run and work to do this morning before going to work. But at least I can take a walk first to take the edge off returning to work.
Sunday, September 20, 2009
On with life
Now we are back from vacation - but still have not retrieved the cat. However we have many loads of laundry to do and a giant list of things to be done before returning to work. One thing not to do - DO NOT WEIGH YOURSELF UPON RETURN FROM VACATION. But it is too late. I did. Its disappointing but not unexpected. Weight loss does not occur when one eats lots of yummy (a/k/a fat filled) food, the opposite does. I can't blame it all on vacation, because I haven't been going on my daily walks because of my stupid ankle. But I don't have a doctor appointment with a weigh in until November so I can do something positive between now and then. Its nice when the scale at the doctors office reflects good news - so even if the doctor doesn't have good news, you can still leave with something to feel good about.
I went through our multitudinous mail yesterday and did receive some nice doctor news. My thyroid levels have returned to normal (something to complicate weight issues). Two years ago, my oncologist lowered my thyroid medication but evidently my body was saying it was too low. So my doctor raised it last spring and I had a follow up blood test before vacation and now it is where it should be. For now. It has a way of needing adjustment... And they tell you 'thyroid medication is not for weight loss' but if your medicine is off, its really easy to gain weight. Never really easy to lose weight. Sigh. I guess I have to work on the nutrition and exercise route.
Actually its been nice that it will be almost 30 days between doctor appointments again. This hasn't happened since last fall (before back issues). And actually only the second time since my diagnosis. I should get frequent doctor visit discounts, instead of bills. That would be fair.
Anyway, off for my morning walk. And lots of laundry. I'll post vacation pictures later.
I went through our multitudinous mail yesterday and did receive some nice doctor news. My thyroid levels have returned to normal (something to complicate weight issues). Two years ago, my oncologist lowered my thyroid medication but evidently my body was saying it was too low. So my doctor raised it last spring and I had a follow up blood test before vacation and now it is where it should be. For now. It has a way of needing adjustment... And they tell you 'thyroid medication is not for weight loss' but if your medicine is off, its really easy to gain weight. Never really easy to lose weight. Sigh. I guess I have to work on the nutrition and exercise route.
Actually its been nice that it will be almost 30 days between doctor appointments again. This hasn't happened since last fall (before back issues). And actually only the second time since my diagnosis. I should get frequent doctor visit discounts, instead of bills. That would be fair.
Anyway, off for my morning walk. And lots of laundry. I'll post vacation pictures later.
Friday, September 18, 2009
Another year has passed
Another year has passed. I am a year older. Because I have my blog (and chemo brain so I need my blog) I can look up and see where I was a year ago. I was coming back from vacation and going to have gall bladder surgery. My gall bladder is all healed but I still can't eat fatty foods - probably will never. And now I have back issues. I guess I have to have a stern discussion with my body: this year is for getting healthy and not having more issues. I want a healthy year. Why not? I deserve one. Finally. For once.
Anyway, we are on vacation and I am having a good day. My back is not having a good day. It doesn't like kayaking, walking around, or riding in cars but otherwise is okay. We are going home tomorrow but I refuse to pack on my birthday. I'll do it all tomorrow. Procrastination can be a good thing.
Anyway, we are on vacation and I am having a good day. My back is not having a good day. It doesn't like kayaking, walking around, or riding in cars but otherwise is okay. We are going home tomorrow but I refuse to pack on my birthday. I'll do it all tomorrow. Procrastination can be a good thing.
Thursday, September 17, 2009
Cancer is hitting the big time these days - all the headlines
Every time I turn around someone else has died from cancer. Yes its a horrible thing, but we are all going to die sometime. One theory on why so many die from cancer now is that before antibiotics and other drugs, most people died from infections or some other cause. Now modern medicine allows us to live long enough to die from cancer - what is that proverb about being careful of what you ask for?
Anyway, one range of commentary that I keep hearing on the fringes is that 'if so-and-so had opted for another form of treatment, they wouldn't have died'. Excuse me but you should never judge someone for the course of treatment for any disease. Its their body and their choices. And they made the decision. You can inform people of their options but you can't judge them for their choices.
Mary Travers, Patrick Swayze, Ted Kennedy, Peter Jennings and the list goes on and on. They made their choices and did what they could. There is no cure. They can only treat cancer and at best put you into remission or with No Evidence of Disease. If there was a cure, it would be known world wide by now.
Enough ranting, I am on vacation. We are going to the beach. It is not hot, but a beach with tide pools, etc keeps me happy no matter what the weather.
Anyway, one range of commentary that I keep hearing on the fringes is that 'if so-and-so had opted for another form of treatment, they wouldn't have died'. Excuse me but you should never judge someone for the course of treatment for any disease. Its their body and their choices. And they made the decision. You can inform people of their options but you can't judge them for their choices.
Mary Travers, Patrick Swayze, Ted Kennedy, Peter Jennings and the list goes on and on. They made their choices and did what they could. There is no cure. They can only treat cancer and at best put you into remission or with No Evidence of Disease. If there was a cure, it would be known world wide by now.
Enough ranting, I am on vacation. We are going to the beach. It is not hot, but a beach with tide pools, etc keeps me happy no matter what the weather.
Wednesday, September 16, 2009
Here we go again
Another news flash - Breast Cancer drugs carry cautions. Well, thanks for the warm fuzzy. Cancer is a caution itself. Coffee cups carry cautions - thanks to insurance companies, lawyers, and stupid people. Aspirin carries cautions. Food carries cautions - if you eat too much you get fat. Now I feel very comforted to know the medications I am on carry cautions - something else to worry about besides cancer.
Tuesday, September 15, 2009
So do you ask?
We were off on our adventures today - lighthouse, museum, old fort, beach, and dinner later on - and I saw a woman with short hair and wearing a t-shirt for a Komen breast cancer walk some place far away, like Alabama. Now is she a volunteer, did she participate, or is she a person living with cancer? This isn't really something you can walk up and ask someone you dont know. I mean there are things you can say to a total stranger like 'do you have the time?' or 'do you know where route 20 is?'. But it is not really considered good form to say to someone 'excuse me, did you/do you have cancer?'.
The world is littered with the debris and detritus of all these fund-raising/networking/world saving/cancer curing events such as t-shirts, bracelets, jewelry, tote bags, water bottles, and any other thing you can possibly think of with the cutesy little 'cancer' tag. But just because someone is wearing it doesn't mean you can ask them. Basically its just rude. So I didn't ask if she was someone just out of treatment with a haircut by chemo, but I was a little curious and wouldn't have been surprised.
But as I think about it, as a cancer person, I don't usually let anyone know my medical history unless they know me. Its not their business. And there is nothing worse than some absolute idiot coming up to you and saying all sorts of platitudes like 'you poor thing', 'you are too young for cancer', 'you are such a fighter to be dealing with this'. I need a wise guy retort for those - but usually I am too blindsided by the morons to come up with anything...
Monday, September 14, 2009
Changing vacation plans
We used to plan all sorts of energetic vacations where we would climb mountains and hike all day and do all sorts of energetic things. We didn't do that this time. We were driving here and my husband mentioned something about bringing hiking boots... It hadn't even crossed my mind to bring hiking boots. I was more concerned with bringing matching pairs of shoes. Hiking boots weren't on my radar. This have changed.
We have been having fun but not really hiking.I mean today we walked around Monhegan Island but my back hurt. And then the boat ride back, made my back hurt more. I think my choices of fun things in life will have to change. Which is moderately depressing. More than moderately. Every time I turn around, something else becomes something I can't/shouldn't do.
I am not sure what we will do on the rest of our vacation but it will include sedentary activities. We will go to the beach.
PS I just went back and read this. I don't mean to sound whiney. I mean to sound frustrated and pissed off and what I cant do. And yes there is a difference. But I am still going to the beach.
We have been having fun but not really hiking.I mean today we walked around Monhegan Island but my back hurt. And then the boat ride back, made my back hurt more. I think my choices of fun things in life will have to change. Which is moderately depressing. More than moderately. Every time I turn around, something else becomes something I can't/shouldn't do.
I am not sure what we will do on the rest of our vacation but it will include sedentary activities. We will go to the beach.
PS I just went back and read this. I don't mean to sound whiney. I mean to sound frustrated and pissed off and what I cant do. And yes there is a difference. But I am still going to the beach.
Saturday, September 12, 2009
Living on the edge
I am living on the edge. I find it hard to remain cheerful and perky and not let me inner evil twin come through. I find that often I am ready to snap at people for no reason - or at a minor thing. I think it is related to living in pain. Ya, think? Maybe that is why I am quickly turning into a 'get the hell out of my way evil b*tch' at the drop of a hat. I can go from nice to 'stick her in a padded cell for 20 years' in no time.
So I tried to do some research on this. Did you know chronic back pain can cause depression? What a good start. But I did find this on pain management techniques:
There are three areas:
1. Non invasive, non-drug pain management - this covers massage, heat/ice, exercise, chiropractic care, PT, and electrortherapy. I have tried all but chiropractic care because I was told to avoid that due to the causes of my pain. The rest didn't work or only provide short term work. I am back to an almost daily walk and do my exercises from PT daily.
2. Non invasive pharmacologic pain management - or in normal English, 'the give me the drugs option'. I got them all. I tried OTC anti inflammatories but they didn't work so I have prescription ones. I also have prescription pain meds for neuropathic pain. In addition I have muscle relaxants and prescription pain meds for the really bad days. Finally, I get to take tylenol (yes, really) for the other regular normal pains that dont get covered by the rest of my personal pharmacy.
3. Invasive pain management techniques - this is the big needles section. I have had two cortisone injections and will probably have a radiofrequency ablation (denervation) at some point. You will note the results of this are mixed - meaning it doesn't work for everyone. The other three things listed that I haven't had are not yet 'tried and true'. They are controversial, inconclusive findings, or not known to be effective.
Well, now I am overjoyed and perky as all hell. This leaves me with the 'give me the drugs' and 'stick more needles in me' options. I have had injections in my lower back and my doctor I think will move on to other areas of my back and hips for more big needles - gee can't wait.
And these are the advances in medical techniques that have provided breakthroughs for those with chronic pain. I think I need more breakthroughs. I'll settle for coffee this morning. And search for my perky side.
So I tried to do some research on this. Did you know chronic back pain can cause depression? What a good start. But I did find this on pain management techniques:
There are three areas:
1. Non invasive, non-drug pain management - this covers massage, heat/ice, exercise, chiropractic care, PT, and electrortherapy. I have tried all but chiropractic care because I was told to avoid that due to the causes of my pain. The rest didn't work or only provide short term work. I am back to an almost daily walk and do my exercises from PT daily.
2. Non invasive pharmacologic pain management - or in normal English, 'the give me the drugs option'. I got them all. I tried OTC anti inflammatories but they didn't work so I have prescription ones. I also have prescription pain meds for neuropathic pain. In addition I have muscle relaxants and prescription pain meds for the really bad days. Finally, I get to take tylenol (yes, really) for the other regular normal pains that dont get covered by the rest of my personal pharmacy.
3. Invasive pain management techniques - this is the big needles section. I have had two cortisone injections and will probably have a radiofrequency ablation (denervation) at some point. You will note the results of this are mixed - meaning it doesn't work for everyone. The other three things listed that I haven't had are not yet 'tried and true'. They are controversial, inconclusive findings, or not known to be effective.
Well, now I am overjoyed and perky as all hell. This leaves me with the 'give me the drugs' and 'stick more needles in me' options. I have had injections in my lower back and my doctor I think will move on to other areas of my back and hips for more big needles - gee can't wait.
And these are the advances in medical techniques that have provided breakthroughs for those with chronic pain. I think I need more breakthroughs. I'll settle for coffee this morning. And search for my perky side.
Friday, September 11, 2009
A most exciting day
Why is it so exciting??? Because we are on vacation for eight days. We leave this morning (not not quite packed but I have until 9) and won't return until next Saturday. Very, very exciting. I was trying to think when our last vacation was but chemo brain did not allow me to remember. My husband had to fill in the blanks.
Last May we did not vacation, we took a long weekend and went to the Stowe Weekend of Hope. It was only a weekend and not a vacation. Last December, we went to visit relatives in California which technically was a vacation but it involved traveling in a blizzard (or two)... And was very busy. It was not as restful. Holiday travel is never relaxing - always complicated. It was nice to see relatives that we never see but its not the same as a check your brain at the door vacation. Then last September (a year ago) we went away for five days. As soon as we came home, I had my gall bladder out and that negated all of the relaxation aspects. Before that was all that chemo and radiation and surgery crap that goes along with cancer...
So we are off to enjoy, bad back and all. Actually a real question is how will my back deal with car travel and hotel beds... This is a real question. But I am mostly packed and have packed the pills I need for every day life and the pills I need in case. And the vitamins I need - calcium for my osteoporosis. I need a separate bag for pills.
But in the meantime, its time to get organized.
Last May we did not vacation, we took a long weekend and went to the Stowe Weekend of Hope. It was only a weekend and not a vacation. Last December, we went to visit relatives in California which technically was a vacation but it involved traveling in a blizzard (or two)... And was very busy. It was not as restful. Holiday travel is never relaxing - always complicated. It was nice to see relatives that we never see but its not the same as a check your brain at the door vacation. Then last September (a year ago) we went away for five days. As soon as we came home, I had my gall bladder out and that negated all of the relaxation aspects. Before that was all that chemo and radiation and surgery crap that goes along with cancer...
So we are off to enjoy, bad back and all. Actually a real question is how will my back deal with car travel and hotel beds... This is a real question. But I am mostly packed and have packed the pills I need for every day life and the pills I need in case. And the vitamins I need - calcium for my osteoporosis. I need a separate bag for pills.
But in the meantime, its time to get organized.
Thursday, September 10, 2009
I volunteer
I volunteer a lot. One of the big advantages of working a couple of part time jobs is that I can do volunteer work. I know in certain circles being a volunteer can be considered to being a sucker for more work. But if it is for a cause yuo believe in, I don't think you are a sucker for more work.
Last night started my volunteer season - it seems to dry up over the summer. I haven't done much for a few months. I had a meeting to start planning our local Relay For Life (www.relayforlife.org to find one near you.) If you have had cancer, go find one, and participate as a survivor. If you haven't had cancer, they all need help with volunteers, donations, etc. Its a worthy cause. The American Cancer Society raises millions of dollars through these events held world wide throughout each year. Ours is probably next June but we are starting early this year. I will handle PR again.
Then in a few weeks, is the Thyroid Cancer Survivors Association's annual conference (www.thyca.org) which is being held near here for once. I am volunteer for that as well. I will do some PR and will help before and during the event. I take my marketing skills and try to get the word out.
I keep on getting emails from other local organizations who want my help with stuff next week. Well, I maybe a volunteer but I need a vacation so unfortunately I won't help with those. But I do need to make sure I am on the list for the marketing conference in the spring.
Why volunteer? Its a chance to give back, help a cause you believe in, and its amazing what you get in return - appreciation and satisfaction. You also get to meet amazing people doing amazing things.
Anyway, today I have to get moving. I wanted to leave for work in 25 minutes but since I haven't done anything to get ready, that wont happen. I'll get to work a little later... But I will be with out an air cast which makes me happy. Three days out of the stupid air cast and my back is having fewer issues. I won't say its better, because that's not really an option, but it is less painful. We'll just leave it at that.
Last night started my volunteer season - it seems to dry up over the summer. I haven't done much for a few months. I had a meeting to start planning our local Relay For Life (www.relayforlife.org to find one near you.) If you have had cancer, go find one, and participate as a survivor. If you haven't had cancer, they all need help with volunteers, donations, etc. Its a worthy cause. The American Cancer Society raises millions of dollars through these events held world wide throughout each year. Ours is probably next June but we are starting early this year. I will handle PR again.
Then in a few weeks, is the Thyroid Cancer Survivors Association's annual conference (www.thyca.org) which is being held near here for once. I am volunteer for that as well. I will do some PR and will help before and during the event. I take my marketing skills and try to get the word out.
I keep on getting emails from other local organizations who want my help with stuff next week. Well, I maybe a volunteer but I need a vacation so unfortunately I won't help with those. But I do need to make sure I am on the list for the marketing conference in the spring.
Why volunteer? Its a chance to give back, help a cause you believe in, and its amazing what you get in return - appreciation and satisfaction. You also get to meet amazing people doing amazing things.
Anyway, today I have to get moving. I wanted to leave for work in 25 minutes but since I haven't done anything to get ready, that wont happen. I'll get to work a little later... But I will be with out an air cast which makes me happy. Three days out of the stupid air cast and my back is having fewer issues. I won't say its better, because that's not really an option, but it is less painful. We'll just leave it at that.
Wednesday, September 9, 2009
End of an (air cast) era
Yes its the end of the air cast era. However I am kind of sort of paying the price for not wearing it at all yesterday. My ankle is a tiny bit sore this morning. And I am sure that is enhanced by the 16 lb furball who walked on my ankle while 'patiently' waiting for breakfast this morning (it was 5 am - go away). So I am wearing my air cast while I wait for it to finish getting light out and go for my morning walk. Yesterday I had a VERY long day - worked 8-5 and was gone basically from 715am - 615pm. Which is a very long day for me. Today I will go for a walk, do some work from home and work about 930-345... And then go to a meeting. And pack. I have to do that sometime. I am not ready for vacation.
Now the biggest transition from the air cast era is to find all my left shoes. I have been wearing my right shoes only for over a month. So normally, you wear a pair of shoes and put them away together neatly in the closet (or, if you are a normal person, under your desk, next to the bed, in the living room, etc) but the point is they are together because you wore them together. Well I have two closets I can put shoes in (because I have two 10' clothes closets - yes really and they are mine and I am not sharing) and so some of the shoes are in one closet and some in the other - the rights and lefts are all separated now. So I have to find the matching shoes. Its hard enough to get out of the house in the morning with shoes that match the outfit much less find two matching shoes that match the outfit. It would probably be helpful if I matched up my shoes BEFORE vacation.)
But since I was out of my air cast for a whole day (and I wore matching shoes), my back is somewhat better. Well partially better. I have about two months until I go back to the back doctor so perhaps the new pain meds will now kick in now that I am walking evenly and my back will continue to improve. It is better since I started my new meds but since I started them the same day I got my air cast and have been walking funny, my back has been stressed and painful. So I will go back to being the patient patient (something I excel at these days) and wait and see how my back does.
Now the biggest transition from the air cast era is to find all my left shoes. I have been wearing my right shoes only for over a month. So normally, you wear a pair of shoes and put them away together neatly in the closet (or, if you are a normal person, under your desk, next to the bed, in the living room, etc) but the point is they are together because you wore them together. Well I have two closets I can put shoes in (because I have two 10' clothes closets - yes really and they are mine and I am not sharing) and so some of the shoes are in one closet and some in the other - the rights and lefts are all separated now. So I have to find the matching shoes. Its hard enough to get out of the house in the morning with shoes that match the outfit much less find two matching shoes that match the outfit. It would probably be helpful if I matched up my shoes BEFORE vacation.)
But since I was out of my air cast for a whole day (and I wore matching shoes), my back is somewhat better. Well partially better. I have about two months until I go back to the back doctor so perhaps the new pain meds will now kick in now that I am walking evenly and my back will continue to improve. It is better since I started my new meds but since I started them the same day I got my air cast and have been walking funny, my back has been stressed and painful. So I will go back to being the patient patient (something I excel at these days) and wait and see how my back does.
Tuesday, September 8, 2009
Blogging and opinions
My blog is my opinion. Its that way because I write it. And yesterday I wrote about the rude jerk (who we saw again in the local diner where my husband and I went for breakfast yesterday). He sort of tried to get my attention again but I ignored him. Anyway, I am allowed to have my own opinion. Someone left a comment yesterday about how these things happen for a reason and maybe I should keep an open mind. What? Me, an open mind? I think I do have a relatively open mind. I don't have time for rude people who butt into conversations but in general I am pretty flexible and open to new ideas. But if they could cure cancer through energy healing and brass gongs, cancer would have gone away a long time ago. So buddy, get back to me when you have a real cure and not just snake oil. Me I'm leaving the solution to the research scientists who know what they are doing.
In the meantime, this week is a three day work week for us. Yesterday was Labor Day (well, doh, you knew that) and Friday we go off on vacation. This means I need to fit five days worth of work into three. And it means I need to leave for work in the next twenty minutes and not get home until around 6... A long day. Sigh. Maybe Walter will cook dinner. But tomorrow I work from home for a few hours and then go to work from 10-4. Thursday I'll work 8-3 or 4 and then do all kinds of fun things like take my computer off to rehab (a/k/a a computer tune up while we are out of town) and the cat off to his vacation (at my parents). Some how I am also supposed to pack and get organized.
I could have been more productive this weekend. Saturday was sailing. Sunday was I can't remember (chemo brain). Monday was gardening, work from home, run a bunch of errands. Now I remember Sunday - we ran errands and bought a living room sofa which will be delivered in October.
I was an air head yesterday and messed up my pills. I have two that I take the second I wake up because one of them needs to be taken on an empty stomach - 1 hour before or 2-3 hours after eating and not in combination with my calcium or prilosec. Then an hour later I take my back pills with food. Then a couple of hours later or sometime before dinner I take my vitamins. With dinner I take more back pills. Well, somehow, yesterday I took the wrong pills in the morning and skipped the empty stomach one. Well I figured this out about 6 pm as I was cooking dinner. So I took it not on an empty stomach and figure it might be a little less effective since it wasn't in optimal conditions but at least I took it. Today I paid more attention and got it right.
Yesterday I barely wore my stupid air cast. I am quite sick of it. Today I am not going to wear it but I will take it with me in case my ankle starts to act up. I went on a big walk yesterday which felt good but made my back hurt and made me tired. Wait, my back hurt from gardening with my stupid air cast on. Work involves lots of sitting with very short walks to the printer and the bathroom (both about 10' - in opposite directions of course).
But now I need to get moving so I can get out the door in the next 15 minutes - after I eat breakfast and get dressed.
In the meantime, this week is a three day work week for us. Yesterday was Labor Day (well, doh, you knew that) and Friday we go off on vacation. This means I need to fit five days worth of work into three. And it means I need to leave for work in the next twenty minutes and not get home until around 6... A long day. Sigh. Maybe Walter will cook dinner. But tomorrow I work from home for a few hours and then go to work from 10-4. Thursday I'll work 8-3 or 4 and then do all kinds of fun things like take my computer off to rehab (a/k/a a computer tune up while we are out of town) and the cat off to his vacation (at my parents). Some how I am also supposed to pack and get organized.
I could have been more productive this weekend. Saturday was sailing. Sunday was I can't remember (chemo brain). Monday was gardening, work from home, run a bunch of errands. Now I remember Sunday - we ran errands and bought a living room sofa which will be delivered in October.
I was an air head yesterday and messed up my pills. I have two that I take the second I wake up because one of them needs to be taken on an empty stomach - 1 hour before or 2-3 hours after eating and not in combination with my calcium or prilosec. Then an hour later I take my back pills with food. Then a couple of hours later or sometime before dinner I take my vitamins. With dinner I take more back pills. Well, somehow, yesterday I took the wrong pills in the morning and skipped the empty stomach one. Well I figured this out about 6 pm as I was cooking dinner. So I took it not on an empty stomach and figure it might be a little less effective since it wasn't in optimal conditions but at least I took it. Today I paid more attention and got it right.
Yesterday I barely wore my stupid air cast. I am quite sick of it. Today I am not going to wear it but I will take it with me in case my ankle starts to act up. I went on a big walk yesterday which felt good but made my back hurt and made me tired. Wait, my back hurt from gardening with my stupid air cast on. Work involves lots of sitting with very short walks to the printer and the bathroom (both about 10' - in opposite directions of course).
But now I need to get moving so I can get out the door in the next 15 minutes - after I eat breakfast and get dressed.
Monday, September 7, 2009
Politeness, eavesdropping, and rudeness
Yesterday I met a friend for coffee (and breakfast). We were sitting there minding our own business discussing cancer, recurrences, surgery, metastases, doctor's opinions and all sorts of other warm fuzzy things cancer people discuss. The man at the next table interrupted us to tell us about his method (which isn't really his and he wasn't selling it but here's a website and the guy's name who started here in Boston and he has about 100 centers and there's a place on the south shore where they have weekly meetings at 11 on Saturday mornings where you can go and learn more) that uses people's energy and a brass doll or something as a chime to heal people. Now he perturbed me on several levels.
- He butted into a private conversation. Its one thing if the people at the next table have an overly adorable child you want to comment on or you really want to find out where the person got their clothing so you can go buy your own or they are having a medical emergency and you are a trained EMT, then its probably okay to interrupt. But a private conversation on something that is kind of personal? No, go away. Aren't you supposed to politely ignore what is going on around you (unless its a two year old in a temper tantrum)?
- He interrupted I think a total of THREE TIMES. Clearly clueless and he forgot what his mother taught him. But he wasn't selling anything (but he has been in holistic healing for nearly 20 years and a few years ago a friend who is an acupuncturist told him about this and how he now has included it in his repertoire and we can go to a meeting on Saturday mornings at 11).
- He wouldn't take the hint and shut up. My friend was better at getting rid of him than I. I wrote down the damn website to get him off our back (but have since lost the piece of paper - damn (NOT)). She managed the polite 'thank you' and turned away.
Its unfortunate that some people want to take advantage of other's misfortunes to make money. Cancer is not going to be cured through energy healing and a brass gong. Sorry. Go bug someone else. Unfortunately he did tell us he goes to the same coffee shop every day which means I will have check whenever I go in and that he lives near by.
After I got over that idiot, I managed to enjoy my day. I went for a walk and then we ran a bunch of errands. But I got a tiny bit tired and my back protested so I hung out with my ice pack for an hour (and watched a cooking show - my secret addiction). Today, we have all sorts of things to do and my back hurts. (Now there's a surprise.) But my ankle is feeling okay. I might attempt a slightly longer walk than yesterday.
- He butted into a private conversation. Its one thing if the people at the next table have an overly adorable child you want to comment on or you really want to find out where the person got their clothing so you can go buy your own or they are having a medical emergency and you are a trained EMT, then its probably okay to interrupt. But a private conversation on something that is kind of personal? No, go away. Aren't you supposed to politely ignore what is going on around you (unless its a two year old in a temper tantrum)?
- He interrupted I think a total of THREE TIMES. Clearly clueless and he forgot what his mother taught him. But he wasn't selling anything (but he has been in holistic healing for nearly 20 years and a few years ago a friend who is an acupuncturist told him about this and how he now has included it in his repertoire and we can go to a meeting on Saturday mornings at 11).
- He wouldn't take the hint and shut up. My friend was better at getting rid of him than I. I wrote down the damn website to get him off our back (but have since lost the piece of paper - damn (NOT)). She managed the polite 'thank you' and turned away.
Its unfortunate that some people want to take advantage of other's misfortunes to make money. Cancer is not going to be cured through energy healing and a brass gong. Sorry. Go bug someone else. Unfortunately he did tell us he goes to the same coffee shop every day which means I will have check whenever I go in and that he lives near by.
After I got over that idiot, I managed to enjoy my day. I went for a walk and then we ran a bunch of errands. But I got a tiny bit tired and my back protested so I hung out with my ice pack for an hour (and watched a cooking show - my secret addiction). Today, we have all sorts of things to do and my back hurts. (Now there's a surprise.) But my ankle is feeling okay. I might attempt a slightly longer walk than yesterday.
Sunday, September 6, 2009
on sailing and backs
Evidently no one informed my back that the constant wiggling of a sail boat can cause pain. My back does not like waves, swells, and wakes from other boats and other kinds of motion. It hurts. But it was really nice to be out on the ocean again. We haven't been out since last year. My husband had some short term ailment (not seasickness) that caused him to be miserable out at sea as well. But he has since recovered and is doing all sorts of productive things around the house - like dishes and laundry - and I am going out for coffee with a friend. Then we have all sorts of productive things to do such as get ready for vacation. But in the meantime I'll waste time on line.
I did manage to sneak in another short walk yesterday morning but as a result then my ankle started to swell up. I want my damn ankle to get better so I can walk more normally and my back will hurt less. Am I too demanding? Wanting to be healthy? And wanting a cure for cancer? I hope not!
Anyway, today is get ready for vacation day. We have a list of things to do. Tomorrow will be finish up the list of getting ready for vacation... And some gardening. And plant watering. And admiring my rose bush which is still putting out big yellow long stemmed roses (which I find most exciting).
So I should go be productive and brush my teeth so I can meet my friend in 10 minutes (yikes!).
I did manage to sneak in another short walk yesterday morning but as a result then my ankle started to swell up. I want my damn ankle to get better so I can walk more normally and my back will hurt less. Am I too demanding? Wanting to be healthy? And wanting a cure for cancer? I hope not!
Anyway, today is get ready for vacation day. We have a list of things to do. Tomorrow will be finish up the list of getting ready for vacation... And some gardening. And plant watering. And admiring my rose bush which is still putting out big yellow long stemmed roses (which I find most exciting).
So I should go be productive and brush my teeth so I can meet my friend in 10 minutes (yikes!).
Saturday, September 5, 2009
But I followed the Directions!
See what do they know? They know crap. They know nothing. They tell you, eat right, exercise, blah, blah, blah, blah, blah. And you can reduce risk of getting breast cancer. Well, I did and then I got it anyway. Just another damn example of how they don't know squat about it. I can tell you about more women who will say the same thing.
Basically what these articles tell me is that the amount of things they don't know about cancer are huge. They can provide some advice on how to avoid it which are based on statistics that show in a probability in a group of people studied who did or didn't do some things showed to be more or less likely for a specific outcome. This is like saying of the people who were sneezed on by someone with the flu, they were 20 times more likely to get the flu themselves. Well, lah, di, dah, I say. Call me demanding but I am sick of advice like this. I want a cure. That's what will make me happy.
Okay, so I am starting today on a slightly crabby note. Well, yesterday I wore my air cast to work and took it off as soon as I got out to my car. Why? Because I have a mosquito bite on my leg which is inside my cast and it is DRIVING ME CRAZY! I also couldn't find the damn cortisone ointment yesterday morning. (I will find it today.) Then I went for a short walk - my first walk since the 'incident'. It was great to be out for a walk. I went slowly. I did not go by myself - I got Walter to come with me. But I had to ice my back last night and this morning both my back and ankle are less than happy - but I have drugs, ice and an air cast so I'll get throw the day with a perkiness seldom seen.
Today, we are going sailing. This means I will go to the boat and sit there and let everyone else do stuff. Hobbling is not good on a boat. It would be slippery if I wear my cast and and if you slide off, the North Atlantic is not that warm, even though its the end of the summer. But it should be a good day of sailing. This weekend is the schooner race out of Gloucester which happens tomorrow but there should be all kinds of boats out today.
Our only problem with going off for the day is to make sure the cat gets his insulin in a timely manner. He normally gets his shots at 6 and 6, 12 hours a part. (We define 12 as being between 11 and 13.) Yesterday we moved him to 7 and 7. Today he will be 8 and 8 or so and we can go out to dinner on the way home. But now I need to motivate. I'll take pictures I am sure.
Basically what these articles tell me is that the amount of things they don't know about cancer are huge. They can provide some advice on how to avoid it which are based on statistics that show in a probability in a group of people studied who did or didn't do some things showed to be more or less likely for a specific outcome. This is like saying of the people who were sneezed on by someone with the flu, they were 20 times more likely to get the flu themselves. Well, lah, di, dah, I say. Call me demanding but I am sick of advice like this. I want a cure. That's what will make me happy.
Okay, so I am starting today on a slightly crabby note. Well, yesterday I wore my air cast to work and took it off as soon as I got out to my car. Why? Because I have a mosquito bite on my leg which is inside my cast and it is DRIVING ME CRAZY! I also couldn't find the damn cortisone ointment yesterday morning. (I will find it today.) Then I went for a short walk - my first walk since the 'incident'. It was great to be out for a walk. I went slowly. I did not go by myself - I got Walter to come with me. But I had to ice my back last night and this morning both my back and ankle are less than happy - but I have drugs, ice and an air cast so I'll get throw the day with a perkiness seldom seen.
Today, we are going sailing. This means I will go to the boat and sit there and let everyone else do stuff. Hobbling is not good on a boat. It would be slippery if I wear my cast and and if you slide off, the North Atlantic is not that warm, even though its the end of the summer. But it should be a good day of sailing. This weekend is the schooner race out of Gloucester which happens tomorrow but there should be all kinds of boats out today.
Our only problem with going off for the day is to make sure the cat gets his insulin in a timely manner. He normally gets his shots at 6 and 6, 12 hours a part. (We define 12 as being between 11 and 13.) Yesterday we moved him to 7 and 7. Today he will be 8 and 8 or so and we can go out to dinner on the way home. But now I need to motivate. I'll take pictures I am sure.
Friday, September 4, 2009
The hand off...
You know when you go from one doctor to the next and assume that behind you is a long trail of medical records, tests, procedures, and all sorts of fun events. I make a point of trying to bring notes to doctor appointments - what did they do last time, what did they tell me last time, what did they tell me they would do this time, and anything else I can think of. So I bounce around between my primary care physician, surgeon, radiation oncologist, medical oncologist, therapist, the doctor's physician assistants as needed, orthopedic surgeon, and then I am sure there are few others plus all the nurses on staff who I deal with and technicians who run the 'procedures'. Who else? I'm not sure but I know there are more including the gastroenterologist I haven't seen since last year, the dermatologist I see rarely and the general surgeon who took out my gall bladder.
Do you remember the game of post office, or whispers or whatever you called it in your neighborhood growing up? You would sit in a circle and the first person would whisper something to the person sitting next to them who would whisper it to the next and then to the next and finally as it got back to the original person, they would say it out loud and everyone would laugh at how far off it was. Pretend that was your medical records? How warm and comfy do you feel now?
Well thankfully doctors and the medical profession have worked very hard on improving communication and do all sorts of things - computerized records are now coming into play, team care, etc. But, mistakes still happen. And what if your new doctor is at a different medical facility - you need to make sure your medical history and test results get there - the Pony Express isn't going to show up and do it for you. Also, just because everything is computerized doesn't mean everything is right.
Our medical co-pay changed in January to $20/visit. I am still correcting it every time I go. I have been told dozens of times by the staff, 'I'll put it in the system, sometimes it just doesn't take. But I am sure it will be in there now.' Well its September... My list of medications (which were all prescribed by doctors at the hospital, still don't seem to have made it into the computer. Nor have my medical allergies. I just carry around a list of allergies and medications for each visit.
Go read this article from the New York Times yesterday about medical hand offs. It doesn't seem so silly any more when they ask you your name and date of birth so many times or reconfirm for the 8th time in 20 minutes what exactly is being done, does it?
Well I am now running late and have a mosquito bite on my leg INSIDE my air cast. This will be a FUN day...
Do you remember the game of post office, or whispers or whatever you called it in your neighborhood growing up? You would sit in a circle and the first person would whisper something to the person sitting next to them who would whisper it to the next and then to the next and finally as it got back to the original person, they would say it out loud and everyone would laugh at how far off it was. Pretend that was your medical records? How warm and comfy do you feel now?
Well thankfully doctors and the medical profession have worked very hard on improving communication and do all sorts of things - computerized records are now coming into play, team care, etc. But, mistakes still happen. And what if your new doctor is at a different medical facility - you need to make sure your medical history and test results get there - the Pony Express isn't going to show up and do it for you. Also, just because everything is computerized doesn't mean everything is right.
Our medical co-pay changed in January to $20/visit. I am still correcting it every time I go. I have been told dozens of times by the staff, 'I'll put it in the system, sometimes it just doesn't take. But I am sure it will be in there now.' Well its September... My list of medications (which were all prescribed by doctors at the hospital, still don't seem to have made it into the computer. Nor have my medical allergies. I just carry around a list of allergies and medications for each visit.
Go read this article from the New York Times yesterday about medical hand offs. It doesn't seem so silly any more when they ask you your name and date of birth so many times or reconfirm for the 8th time in 20 minutes what exactly is being done, does it?
Well I am now running late and have a mosquito bite on my leg INSIDE my air cast. This will be a FUN day...
Thursday, September 3, 2009
News Flash: Cancer chips away at the enjoyable things in life
This is the latest news flash discovered in the on going effort to have a real (insert the word 'enjoyable' here) life. I went to the monthly support group that I try to go to yesterday (actually, it was my second visit and the first one was nearly a year ago- but I really mean to go more often. Its very different than my weekly support group that I went to for two years as it is structured with speakers, etc.) Last night a massage therapist came to discuss massage (and give demonstrations on all of us) for sick people. She usually does a lot of hospice massage (meaning end of life care). She talked about a lot of things and how you have to be careful not to get a very deep massage if you have any issues.
But here's the earth shattering news. If you have had any lymph nodes removed - and every breast cancer patient has at least one, most 15-20-30, you should never, ever get a massage on that quadrant of your body. This means that if you have lymph nodes removed under your left arm, you should never get a massage, other than a very light one done by someone who knows what they are doing, in that quadrant of your body. Your lymph system is divided basically into four quadrants (again a non-medical, technical explanation). You can draw a line up the middle of your rib cage and then I think across the bottom of your ribs to get the four quadrants. No massage in that quadrant for you! And if you have had lymph nodes removed and the masseuse doesn't consider it to be a big deal, skip that massage.
What's a massage if you say, okay, you have to stay away from that upper quarter of my back and shoulder and arm. I think it would be uneven. Its that the stupid pesky lymph system is under the skin and the theory is that a massage could induce lymphedema which is that pesky incurable, hard to treat symptom where you arm swells up pretty much permanently.
Other things that can cause lymphedema include sitting in hot tubs, any cuts or scratches, overly dry skin, burns or rashes on the quadrant where you had lymph nodes removed. Also, carrying heavy things, weight gain, and long plane flights are thought to contribute to lymphedema. (But you get weight gain as a result of treatment and from the medications they put you on after breast cancer.) Just another example of how cancer chips away at the enjoyable things in life.
So between my back and my lymph nodes, I got a five minute neck massage yesterday... Everyone else got a chair massage. Grr.
This is clearly in the case of be careful what you ask for. Yesterday I went to the hospital to get my blood test out of the way that needed to be done this month, pick up a print out of the results of my PET scan and my liver MRI last year. (I was curious what is in the results of a PET scan.) And if I combined these with my trip to the support group, I wouldn't have to go back to the hospital for four weeks. That may not sound like much but I like to maximize any break I can from going there.
I got my PET and MRI results and the over all conclusions at the bottom basically say I am fine. But its the gobbledegook in the middle that has me confused. I know know to read to much into it because I don't really know where the 'dome of the diaphragm through the iliac crests' are in my body (other than to say somewhere inside me) and that these tests pick up all sorts of things that are normal and not to be worried about. For example, lots of things were 'Patent' in my MRI. I was concerned and looked up 'patent' in a medical dictionary and this is what I got: 1. open, unobstructed, or not closed. 2. apparent, evident. So in other words, patent things are good things and not to be worried about. But there are some other terms I might ask my doctor to decipher.
Also, at my support group, I found out all about my new oncologist (at support groups we don't just talk about cancer, we talk about our doctors and nurses and tests - a great little rating system). I was very concerned about the switch and wanted to avoid one doctor because I had heard not so nice things about her. I ended up with this new doctor who I go see in November. Two women were there who have seen her already and she apparently is nice, reads your chart, asks questions, and is ready to try all sorts of things. They couldn't say enough nice things about her. I am much happier now. And don't see her for another two months.
Anyway, another over scheduled day for me. Coffee, work, feed a friend's cats who is out of town and make something creative for dinner. But I have all day to ponder that one.
But here's the earth shattering news. If you have had any lymph nodes removed - and every breast cancer patient has at least one, most 15-20-30, you should never, ever get a massage on that quadrant of your body. This means that if you have lymph nodes removed under your left arm, you should never get a massage, other than a very light one done by someone who knows what they are doing, in that quadrant of your body. Your lymph system is divided basically into four quadrants (again a non-medical, technical explanation). You can draw a line up the middle of your rib cage and then I think across the bottom of your ribs to get the four quadrants. No massage in that quadrant for you! And if you have had lymph nodes removed and the masseuse doesn't consider it to be a big deal, skip that massage.
What's a massage if you say, okay, you have to stay away from that upper quarter of my back and shoulder and arm. I think it would be uneven. Its that the stupid pesky lymph system is under the skin and the theory is that a massage could induce lymphedema which is that pesky incurable, hard to treat symptom where you arm swells up pretty much permanently.
Other things that can cause lymphedema include sitting in hot tubs, any cuts or scratches, overly dry skin, burns or rashes on the quadrant where you had lymph nodes removed. Also, carrying heavy things, weight gain, and long plane flights are thought to contribute to lymphedema. (But you get weight gain as a result of treatment and from the medications they put you on after breast cancer.) Just another example of how cancer chips away at the enjoyable things in life.
So between my back and my lymph nodes, I got a five minute neck massage yesterday... Everyone else got a chair massage. Grr.
This is clearly in the case of be careful what you ask for. Yesterday I went to the hospital to get my blood test out of the way that needed to be done this month, pick up a print out of the results of my PET scan and my liver MRI last year. (I was curious what is in the results of a PET scan.) And if I combined these with my trip to the support group, I wouldn't have to go back to the hospital for four weeks. That may not sound like much but I like to maximize any break I can from going there.
I got my PET and MRI results and the over all conclusions at the bottom basically say I am fine. But its the gobbledegook in the middle that has me confused. I know know to read to much into it because I don't really know where the 'dome of the diaphragm through the iliac crests' are in my body (other than to say somewhere inside me) and that these tests pick up all sorts of things that are normal and not to be worried about. For example, lots of things were 'Patent' in my MRI. I was concerned and looked up 'patent' in a medical dictionary and this is what I got: 1. open, unobstructed, or not closed. 2. apparent, evident. So in other words, patent things are good things and not to be worried about. But there are some other terms I might ask my doctor to decipher.
Also, at my support group, I found out all about my new oncologist (at support groups we don't just talk about cancer, we talk about our doctors and nurses and tests - a great little rating system). I was very concerned about the switch and wanted to avoid one doctor because I had heard not so nice things about her. I ended up with this new doctor who I go see in November. Two women were there who have seen her already and she apparently is nice, reads your chart, asks questions, and is ready to try all sorts of things. They couldn't say enough nice things about her. I am much happier now. And don't see her for another two months.
Anyway, another over scheduled day for me. Coffee, work, feed a friend's cats who is out of town and make something creative for dinner. But I have all day to ponder that one.
Wednesday, September 2, 2009
More Reassuring News
In case you missed it, the Old Farmer's Almanac has announced their winter forecast. Winter will be here in a few months and it will be very cold in the midwest. We can also expect a Valentine's day blizzard in New England - well they said from February 12-15. I hope its not a 3 day blizzard. That would really be a bummer. I don't mind a one day blizzard, but a three day blizzard? That's when you start to look at your spouse as some sort of alien - why I am trapped in here with you? Can't you go shovel more snow or something?
The down side of my life, is that 20 years ago (or even five years ago) I would say a blizzard=skiing (and shoveling). Now a blizzard equals a tiny bit of snow showing, followed by frustrating because I can't go skiing (but happiness because I can't really shovel although I should be able to run the little electric snow blower we have). I might sneak in a little cross country skiing this winter but I don't think I am up for down hill any more. But I'm still having on to my relatively new skis that I spent a lot of money on and then never really got to use. I'm not sure why I am thinking about skiing and show shoeing yet, but maybe because there are already holiday displays in stores - which is just wrong if you ask me.
A few friends and I were commenting on when do you really start feeling normal again after chemo. The overwhelming answer is no one knows. But there seems to be some consensus that 2 years out is the right time. So how much of my never having energy, feeling tired, being in pain, will start to go away after December when I am two years out and how much is related to my damn back and will never go away? And they lied. When you are diagnosed with cancer, they say 'its a year out of your life'. Well its been a lot more than that thank you. Now, I'm really overwhelmed with cheery thoughts. Time to change the subject.
New topic: Today I am working from home. This means I have many social appointments. I am meeting a friend for coffee at 8 and another at 2. In between, I have a tiny bit of work to do, and will also go to the gym, the library, and run some errands. I will go get some blood work done, stop by hospital records, and go to a monthly support group that I never make it to. I have lots to do and I made a list but there is a possibility I lost it (the list and not my mind) already - need more coffee. (Found the list after five minutes of looking.)
I was hoping to avoid going to the hospital at all for the next month. I had a whole entire month with no appointments - don't know how that little miracle occurred. My last appointment was August 25 and my next appointment is September 25. But I also need to get in to get some blood work done in September. If I wait until the end of the month and then forget, I'll have to call the doctor back and get it reordered, blah, blah, blah. Its better to get it done while I am thinking about it. I also really have been meaning to attend this support gruop - its a monthly one and has a completely different focus than the others.
Lastly, I want to go to hospital records to get my PET scan and liver MRI results simply because I have never had a PET scan and I am curious to what it will tell me. I know the results were clean but I want to see it. New sensitive tests like MRIs, PETs, CTs, etc pick up all sorts of bad things but they are also sensitive enoyugh to pick up good things. They might give you the size of organs or any normal abnormalities in them. For instance, I know I have three hemangiomas in my liver (they are normal thingies to have, benign, you can keep them) but how big are they, what else is there? Inquiring minds want to know and its my body so I figure I should stay on top of what they say.
So today I am off and running. Running late already. But that's to be expected.
The down side of my life, is that 20 years ago (or even five years ago) I would say a blizzard=skiing (and shoveling). Now a blizzard equals a tiny bit of snow showing, followed by frustrating because I can't go skiing (but happiness because I can't really shovel although I should be able to run the little electric snow blower we have). I might sneak in a little cross country skiing this winter but I don't think I am up for down hill any more. But I'm still having on to my relatively new skis that I spent a lot of money on and then never really got to use. I'm not sure why I am thinking about skiing and show shoeing yet, but maybe because there are already holiday displays in stores - which is just wrong if you ask me.
A few friends and I were commenting on when do you really start feeling normal again after chemo. The overwhelming answer is no one knows. But there seems to be some consensus that 2 years out is the right time. So how much of my never having energy, feeling tired, being in pain, will start to go away after December when I am two years out and how much is related to my damn back and will never go away? And they lied. When you are diagnosed with cancer, they say 'its a year out of your life'. Well its been a lot more than that thank you. Now, I'm really overwhelmed with cheery thoughts. Time to change the subject.
New topic: Today I am working from home. This means I have many social appointments. I am meeting a friend for coffee at 8 and another at 2. In between, I have a tiny bit of work to do, and will also go to the gym, the library, and run some errands. I will go get some blood work done, stop by hospital records, and go to a monthly support group that I never make it to. I have lots to do and I made a list but there is a possibility I lost it (the list and not my mind) already - need more coffee. (Found the list after five minutes of looking.)
I was hoping to avoid going to the hospital at all for the next month. I had a whole entire month with no appointments - don't know how that little miracle occurred. My last appointment was August 25 and my next appointment is September 25. But I also need to get in to get some blood work done in September. If I wait until the end of the month and then forget, I'll have to call the doctor back and get it reordered, blah, blah, blah. Its better to get it done while I am thinking about it. I also really have been meaning to attend this support gruop - its a monthly one and has a completely different focus than the others.
Lastly, I want to go to hospital records to get my PET scan and liver MRI results simply because I have never had a PET scan and I am curious to what it will tell me. I know the results were clean but I want to see it. New sensitive tests like MRIs, PETs, CTs, etc pick up all sorts of bad things but they are also sensitive enoyugh to pick up good things. They might give you the size of organs or any normal abnormalities in them. For instance, I know I have three hemangiomas in my liver (they are normal thingies to have, benign, you can keep them) but how big are they, what else is there? Inquiring minds want to know and its my body so I figure I should stay on top of what they say.
So today I am off and running. Running late already. But that's to be expected.
Tuesday, September 1, 2009
I was supposed to say 'wake up there's a mouse in the kitchen'
Last night my back was oh so cooperative and I didn't get much sleep even though I took one of my heavy duty pain pills. After our mouse issues, we updated our traps to two from one in hopes of nabbing the felon - guilty of leaving a mess on the counters and eating the crumbs in the bottom of the toaster oven (which has been scrubbed within inches of its life). Around midnight, between snores (of the cat and the husband - cat is louder), I heard little noises from the kitchen. I thought I could get up and see what it is, but what if its a mouse in the trap. I listened and decided that it probably was a mouse in the trap and decided not to get up and deal with something that would make my stomach turn in the middle of the night. I also chose NOT to wake up Walter - he wouldn't want to deal with a mouse in a trap at midnight. I didn't think he would appreciate being told 'wake up there's a mouse in the kitchen'. He needed to get some rest too.
Around 4 am, I woke back up (thank you to my back and ankle) and heard a loud noise in the kitchen, which was substantially louder than a mouse. I considered getting up but Walter woke up and 'suggested' that I go check the mouse traps. I 'suggested' in return that he should go because he doesn't want me to be the one to find mice in traps. And if it wasn't a mouse, it was a burglar so he should deal.
He came back upstairs to report that the mouse trap that had previously been on the kitchen counter was across the floor of the kitchen, sprung, mouseless, and the cat was supervising. He was also a bit peeved he didn't get to see/catch the mouse. Evidently, I was supposed to say 'wake up there's a mouse in the kitchen'. Even though we have not seen the mouse, I think the cat has. The noise was probably the cat 'helping' the mouse out of the trap. Shortly afterward the cat came back upstairs to tell us about his food dish. I turned the light back on to make sure that he wasn't bringing us any kind of mousy present as he has done in the past.
So today I feel very well rested (NOT) and there is a traffic accident that will make my commute a nightmare. My back and ankle are not happy. I think its because yesterday at the school I work at there was a giant meeting and I had to walk from the farthest corner of the parking lot with my lovely, handy, dandy, back pain causing air cast. If I had known and come 15 minutes earlier I could have parked much closer. (As it was teachers were walking at least 1/4 mile to get to the school so I am lucky I parked so close - but I snuck into the student parking.)
So my ankle is clearly telling me it is not ready to start taking walks which is quite the bummer. I was hoping to start walking soon. But I will go ride the stationary bike tomorrow and again this weekend. But today I really have to get moving so I can go sit in traffic.
Around 4 am, I woke back up (thank you to my back and ankle) and heard a loud noise in the kitchen, which was substantially louder than a mouse. I considered getting up but Walter woke up and 'suggested' that I go check the mouse traps. I 'suggested' in return that he should go because he doesn't want me to be the one to find mice in traps. And if it wasn't a mouse, it was a burglar so he should deal.
He came back upstairs to report that the mouse trap that had previously been on the kitchen counter was across the floor of the kitchen, sprung, mouseless, and the cat was supervising. He was also a bit peeved he didn't get to see/catch the mouse. Evidently, I was supposed to say 'wake up there's a mouse in the kitchen'. Even though we have not seen the mouse, I think the cat has. The noise was probably the cat 'helping' the mouse out of the trap. Shortly afterward the cat came back upstairs to tell us about his food dish. I turned the light back on to make sure that he wasn't bringing us any kind of mousy present as he has done in the past.
So today I feel very well rested (NOT) and there is a traffic accident that will make my commute a nightmare. My back and ankle are not happy. I think its because yesterday at the school I work at there was a giant meeting and I had to walk from the farthest corner of the parking lot with my lovely, handy, dandy, back pain causing air cast. If I had known and come 15 minutes earlier I could have parked much closer. (As it was teachers were walking at least 1/4 mile to get to the school so I am lucky I parked so close - but I snuck into the student parking.)
So my ankle is clearly telling me it is not ready to start taking walks which is quite the bummer. I was hoping to start walking soon. But I will go ride the stationary bike tomorrow and again this weekend. But today I really have to get moving so I can go sit in traffic.
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