Or, how did my life turn in to a bad country music song? My friends dying, my back pain, the oil tank, the car, the cat's diabetes, stress from work, and I can't remember it all now because there is just too much! My goal is to get rid of the black cloud and return to happier times.
First I am going away this weekend on a Casting for Recovery retreat but this time as a volunteer which means less fishing I think but I still think it will be great. I have prepared myself with a proper pedicure to go with my fishing.
I will drive the reliable ten year old car with 135,000 miles on it and not the crappy new car with 8700 miles on it. We got it back yesterday and they couldn't find anything wrong with it.
I will not go down into the basement so I have to look at the oil tank until it is fixed on Wednesday. If I pretend its not there, I can't stress as much about it. (This is my mature attitude coming through - if I don't see it, I can't let it bother me.)
I will not take my laptop with me this weekend so I will have to relax more instead of dealing with work.
I will sit in the sun (wrinkles & cancer - who cares right now? and relax. (Sunscreen and hat). I will read a trashy novel on the beach today before the retreat starts.
I will get rid of the little black cloud that has been following me around.
Friday, July 31, 2009
Thursday, July 30, 2009
Clinical Trials
I did not participate in a clinical trial. I was offered one and was considering it (and probably going to participate) when I found out that I actually didn't qualify. This article in Parade Magazine (the medical resource not to use) this weekend on clinical trials I find to be very negative. Let's start with the title: "Are Clinical Trials Safe?" Well, gee I didn't think they were not safe until you started questioning their safety. It also talks about risk, blah, blah, blah. Why don't they discuss the importance of them more and how more people should participate in them? I found this very disturbing.
Clinical trials are very important and it is unfortunate that more patients are not offered them. They are part of the process where drug companies test their new drugs to make sure they work as expected, test doses, etc. There are four stages in clinical trials: Phase O is initial human test to see if the drug is safe, Phase I is establishing safety and tolerability of the drug among other things, Phase II is designed to assess how well the drug works, Phase III is for a definitive assessment of the drug, and Phase IV is on going testing of how well the drug works and can continue after the drugs launch. There are lots of Phase III trials around, because they involve larger groups, and people should be encouraged to participate. They were explained to me that you are always testing against the current protocol for something that might be better. So you might be getting better treatment than what is available. (Check wikipedia for a non scientific overview and clinicaltrials.gov for lots more information on current trials.)
If you participate in a clinical trial you are helping others. Think of it as a chance to give back. It also may save your life. Perhaps Parade Magazine should stick with its celebrity coverage and skip the medical information.
Clinical trials are very important and it is unfortunate that more patients are not offered them. They are part of the process where drug companies test their new drugs to make sure they work as expected, test doses, etc. There are four stages in clinical trials: Phase O is initial human test to see if the drug is safe, Phase I is establishing safety and tolerability of the drug among other things, Phase II is designed to assess how well the drug works, Phase III is for a definitive assessment of the drug, and Phase IV is on going testing of how well the drug works and can continue after the drugs launch. There are lots of Phase III trials around, because they involve larger groups, and people should be encouraged to participate. They were explained to me that you are always testing against the current protocol for something that might be better. So you might be getting better treatment than what is available. (Check wikipedia for a non scientific overview and clinicaltrials.gov for lots more information on current trials.)
If you participate in a clinical trial you are helping others. Think of it as a chance to give back. It also may save your life. Perhaps Parade Magazine should stick with its celebrity coverage and skip the medical information.
Wednesday, July 29, 2009
New Healthcare Reform
But first this is in the category of you can't make this stuff up: Why would anyone put pet baby snakes in their pockets? I think a cage would do much better.
There was an article the other day on the number of bills in front of the legislature to expand insurance health coverage. There are something like 70 bills trying to mandate coverage for a whole range of things from vitamins, aquatherapy, cleft palate repair, wigs for chemotherapy patients, etc. I am not sure I agree with all this.
You buy the amount of insurance you think you need/can afford and hope that if the worst happens you are covered fairly. The premiums we pay (here's my non technical understanding on how insurance works) go into a big pool that the insurers use to pay the medical professionals for the care we receive. If insurers become mandated to pay for more things, guess what? The pool and our premiums will need to be bigger. Or insurers will stop paying as much on other treatments.
Taking the example of wigs for chemotherapy patients (or cranial prostheses) of which I do have personal experience. My insurance did not cover them. I know people who were appalled that the insurance did not. I was told by well meaning friends I should fight this, blah, blah, blah. I didn't. I bought a relatively inexpensive wig and deducted it as a medical expense on my taxes. I have friends with insurance who bought an expensive wig and then never wore it because they hated it. I had other friends who just wore scarves and know one person who bought a bright blue wig and one who bought a bright pink wig. So should insurance cover the fact that you didn't like your first wig or never wore the damn thing? Should you be able to get a second wig on insurance if you don't like the first? I don't know.
But I do know my insurance didn't pay for my wig but they did pay for a lot of other stuff. If someone said I had a choice between full coverage for chemotherapy or partial coverage and a wig. I'll take the full coverage. My insurance bills were relatively small for the duration of my treatment.
There are also the modalities that help one in a million or one in ten million. Should there be a mandate that they are covered for all? If vitamins are covered, are we all going to start taking them and be healthier? We are trying to keep health care affordable. There also is some logic to changing the system on how the reimbursement process works but that's a whole other issue.
Okay, enough soap box for now. Today my back hurts (now there's a change). My rash is better. I think it is a reaction to one of my prescriptions (that says you may develop a rash on the warning label) so I am going to stop taking it for a day or two and see if the rash goes away. It feels better today already.
The car is not fixed. They called yesterday and said they couldn't find anything wrong but were still checking and want to keep it for another day. Hmmm... do I feel reassured by the fact that they didn't find anything wrong? No. I'm not driving it anywhere until it is fixed. We bought a new car so we had a reliable vehicle. I don't consider it reliable at all anymore. Yes, cars break down, I realize that but to have one that breaks down for no determinable reason is not acceptable. In case you are wondering its a 2009 Nissan Versa which right now I would not recommend to anyone.
There was an article the other day on the number of bills in front of the legislature to expand insurance health coverage. There are something like 70 bills trying to mandate coverage for a whole range of things from vitamins, aquatherapy, cleft palate repair, wigs for chemotherapy patients, etc. I am not sure I agree with all this.
You buy the amount of insurance you think you need/can afford and hope that if the worst happens you are covered fairly. The premiums we pay (here's my non technical understanding on how insurance works) go into a big pool that the insurers use to pay the medical professionals for the care we receive. If insurers become mandated to pay for more things, guess what? The pool and our premiums will need to be bigger. Or insurers will stop paying as much on other treatments.
Taking the example of wigs for chemotherapy patients (or cranial prostheses) of which I do have personal experience. My insurance did not cover them. I know people who were appalled that the insurance did not. I was told by well meaning friends I should fight this, blah, blah, blah. I didn't. I bought a relatively inexpensive wig and deducted it as a medical expense on my taxes. I have friends with insurance who bought an expensive wig and then never wore it because they hated it. I had other friends who just wore scarves and know one person who bought a bright blue wig and one who bought a bright pink wig. So should insurance cover the fact that you didn't like your first wig or never wore the damn thing? Should you be able to get a second wig on insurance if you don't like the first? I don't know.
But I do know my insurance didn't pay for my wig but they did pay for a lot of other stuff. If someone said I had a choice between full coverage for chemotherapy or partial coverage and a wig. I'll take the full coverage. My insurance bills were relatively small for the duration of my treatment.
There are also the modalities that help one in a million or one in ten million. Should there be a mandate that they are covered for all? If vitamins are covered, are we all going to start taking them and be healthier? We are trying to keep health care affordable. There also is some logic to changing the system on how the reimbursement process works but that's a whole other issue.
Okay, enough soap box for now. Today my back hurts (now there's a change). My rash is better. I think it is a reaction to one of my prescriptions (that says you may develop a rash on the warning label) so I am going to stop taking it for a day or two and see if the rash goes away. It feels better today already.
The car is not fixed. They called yesterday and said they couldn't find anything wrong but were still checking and want to keep it for another day. Hmmm... do I feel reassured by the fact that they didn't find anything wrong? No. I'm not driving it anywhere until it is fixed. We bought a new car so we had a reliable vehicle. I don't consider it reliable at all anymore. Yes, cars break down, I realize that but to have one that breaks down for no determinable reason is not acceptable. In case you are wondering its a 2009 Nissan Versa which right now I would not recommend to anyone.
Tuesday, July 28, 2009
Because I needed something new
These are lotus blossoms we saw in RI in a garden on the side of the road. To give some perspective, each leaf is about 18" across. They were huge. But buds were the size of a grapefruit.
I woke up in the middle of the night with a rash on my leg (and back pain). This isn't a little bitty rash, but a nice wide spread one that is actually on both legs, my chest and left arm. It does not really itch. It does not look like poison ivy. It is just irritating. My husband's theory is that it is caused by stress. I don't know but I do know I am going to Walgreens the second it opens to get some anti itch stuff... The stuff we have is all expired...
It is possible I have too much stress in my life. My brother gave me a mini-lecture on stressing too much (and suggested I be more like him who never worries about anything but admits that is the other end of the spectrum). What do I have for stress?
- Death and funeral of a friend. Death and funeral of another friend. Death of an old friend, who I haven't seen in a long time but is still sad.
- Work for one job - hurry up we have a deadline, oh did you rush? We don't have the material yet but we will tomorrow. Do you think we can get it out tomorrow? We promise to have the material for you so you can do it all tomorrow. Can you fit it in? Please?
- Work for a second job - just having to drive there and figure out their system...
- Work for a third job - can you do phone research interviews with our clients? How are they coming? Are they done yet? Did you get any good quotes?
- Work for a fourth job - can you keep me posted on everything you are doing? Did the release run? Is it on the calendar? It has to be done THIS week.
- Work for a fifth job - where is that proposal? Can we set up another meeting? Can you email me what you have and we can decide if we like what you are doing?
- Stupid car that is new and broke down and we had towed that we took to the dealer yesterday (after coming back early so we could get it to them) and then they didn't touch it at all yesterday (but did give us a rental) but will call when its ready.
- Back pain so that I don't get to sleep.
No I don't think I have stress. Do you?
So yesterday we left mid morning to return home. We stopped and played mini-golf. We'll just say I did really badly (but can I blame my back?). The car actually would start so we drove it to the dealer. I did some work - that I thought would all be waiting for me but wasn't. I also cleared out some email and started laundry and cooked dinner. Today I am going for a walk, doing some work, and going to my other job. With my rash but after I stop at Walgreens.
Monday, July 27, 2009
A Glimpse into 'how the other half lives'
We are staying at a B&B and there is another couple here as well. Last night we coincidentally decided to spend the evening eating cheese and crackers on the porch instead of going out for another meal. They are probably 15 years older than us and from the south. They are scouting retirement locations for their future in another five years. She still works. He is on disability because he injured his shoulder and had to have tendons reattached, etc. It doesn't sound like he is going back to work (but I think he's also over 65) and is permanently out of the work forced.
He was saying how he is so glad that he had health insurance to cover his surgery because without it he might lose his house to pay the medical bills. I think this was his first big medical event. Ever. I had forgotten what it would be like to not have your medical issues run your life, to not think about your next doctor appointment, to get to your sixties and first experience a major medical issue for either you or your spouse. To me that is pretty amazing.
I find their long term plan of retiring a nice optimistic way. We have talked a little bit about retirement and what we would do but, maybe because of our age as well, we haven't done much thinking about it. It was nice to see people planning another 20 years together. I think to me that is 'how the other half lives' - the worry free life with a long term plan.
In the meantime, our weekend has been nice. We wanted to go spend the day on the beach yesterday and woke up to pouring rain and a gloomy forecast (with a giant blob of green on the radar map headed our way). Instead of the beach, we headed for Newport and carried around the 'rain prevention' umbrella all day. We did a tour of Fort Adams State Park (definitely worth a visit if you are in the area) and the Museum of Yachting before heading off for lunch in town. We also stopped in the little village of Wickford (1 blinking light, two blocks long) and did a little window shopping before heading back here to be generally lazy and eat cheese and crackers on the porch.
My back will last for about two hours of standing and doing stuff before I need to sit down for a bit and possibly ice it as well. Today it is reminding me about how much standing I did yesterday. After breakfast we are heading home to deal with the car, my work deadline and the millions of emails I have piled up from various consulting jobs. I need to fit in a walk as well.
He was saying how he is so glad that he had health insurance to cover his surgery because without it he might lose his house to pay the medical bills. I think this was his first big medical event. Ever. I had forgotten what it would be like to not have your medical issues run your life, to not think about your next doctor appointment, to get to your sixties and first experience a major medical issue for either you or your spouse. To me that is pretty amazing.
I find their long term plan of retiring a nice optimistic way. We have talked a little bit about retirement and what we would do but, maybe because of our age as well, we haven't done much thinking about it. It was nice to see people planning another 20 years together. I think to me that is 'how the other half lives' - the worry free life with a long term plan.
In the meantime, our weekend has been nice. We wanted to go spend the day on the beach yesterday and woke up to pouring rain and a gloomy forecast (with a giant blob of green on the radar map headed our way). Instead of the beach, we headed for Newport and carried around the 'rain prevention' umbrella all day. We did a tour of Fort Adams State Park (definitely worth a visit if you are in the area) and the Museum of Yachting before heading off for lunch in town. We also stopped in the little village of Wickford (1 blinking light, two blocks long) and did a little window shopping before heading back here to be generally lazy and eat cheese and crackers on the porch.
My back will last for about two hours of standing and doing stuff before I need to sit down for a bit and possibly ice it as well. Today it is reminding me about how much standing I did yesterday. After breakfast we are heading home to deal with the car, my work deadline and the millions of emails I have piled up from various consulting jobs. I need to fit in a walk as well.
Sunday, July 26, 2009
One Hell of a Day
It started with some running around and packing to go away for the weekend. We were out the door shortly after 830am, stopped at the library to return overdue books and then off to the funeral. Which was very sad and depressing. 39 is too young. We left the funeral, missed our turn on to the highway but found a yummy lunch. We called the B&B to say we were on our way and would be there in a hour or so.
Then all of a sudden the car lost power and died. On the interstate. In the middle lane. Going up hill. We barely coasted to the side. Walter was driving. This was the NEW car with 8000 miles on it. Then some moron decided to pass on the right in the breakdown lane (but missed us) so we decided to wait on the other side of the guard rail. But the tow truck driver was there in about 10 minutes. (After reading teh manual and finding out the towing eye was in with the spare tire under our belongings so we unpacked the back of the car on the side of the highway and then repacked.) We were towed home where we said hi to the cat, repacked into the other car and left on our trip. We got here around 4... Went to the beach for a little bit and out to dinner. I had clams for my dinner so my day improved. (The car is going to the dealer when we get home tomorrow. I hope they have a policy for loaner cars for owners under warranty.) Then my back hurt a lot last night...
We woke up to POURING rain. The weather radar shows another giant thunderstorm headed our way for the day - so we aren't going to the beach. And my back hurts.
But the B&B is nice. They have two outdoor cats, one dog, goats and chickens. And a nice garden. Its very quiet. We like it, which is what counts.
Then all of a sudden the car lost power and died. On the interstate. In the middle lane. Going up hill. We barely coasted to the side. Walter was driving. This was the NEW car with 8000 miles on it. Then some moron decided to pass on the right in the breakdown lane (but missed us) so we decided to wait on the other side of the guard rail. But the tow truck driver was there in about 10 minutes. (After reading teh manual and finding out the towing eye was in with the spare tire under our belongings so we unpacked the back of the car on the side of the highway and then repacked.) We were towed home where we said hi to the cat, repacked into the other car and left on our trip. We got here around 4... Went to the beach for a little bit and out to dinner. I had clams for my dinner so my day improved. (The car is going to the dealer when we get home tomorrow. I hope they have a policy for loaner cars for owners under warranty.) Then my back hurt a lot last night...
We woke up to POURING rain. The weather radar shows another giant thunderstorm headed our way for the day - so we aren't going to the beach. And my back hurts.
But the B&B is nice. They have two outdoor cats, one dog, goats and chickens. And a nice garden. Its very quiet. We like it, which is what counts.
Saturday, July 25, 2009
A funeral
This morning we are going to the funeral of a 39 year old who had no significant health problems and lived a healthy life style. It will probably be pretty awful. He was so young. It was so unexpected.
I have been thinking about Shean's death and the recent death of two other friends. Jill had a life time of medical issues relating to severe asthma. She went for lots of different treatments and tried all sorts of things to help her out. But she still sang in a choir, worked, traveled, and loved life. Andy I admit I had lost touch with him for probably the last 15 years and all I know is he died after a brief illness. Three people struck down in the prime of their life but none of them endured months of suffering and pain.
I think this is where I am going to. Quality of life and palliative care are very important. If you are sick or stressed, do something about it. Doctors I think are understanding of the need to maintain quality of life. If yours doesn't, find a new doctor who does! But also do your part, speak up and tell them what's wrong, what's bothering you, what hurts. Go to follow up appointments and do what they tell you (provided its reasonable - I can tell you stories of unreasonable crazy things I have heard...).
If I had a choice of dying quickly with no advance warning or ten years in a nursing home, in diapers unable to feed myself, not knowing who was there. My choice would be a quick death without months or years of a horrible life. Okay, this maybe really morbid but we all should think about it. I have three friends who died unexpectedly. I personally don't know how well they had planned for life's unexpected events but their families now need to pick up the pieces and figure out what they wanted and what they have to do now. Maybe this is a prodding to get a living will, write a will, discuss options with spouse, etc.
After the funeral, we are going away for two days. We originally were going Friday but delayed our trip by one day so we could go to the funeral. I hope some downtime will relieve some of the stress. Work has been stressful as well.
But kitty has a babysitter - a professional pet service who comes and plays with him and gives him his injections. We will go stay at a B&B on the beach.
I have been thinking about Shean's death and the recent death of two other friends. Jill had a life time of medical issues relating to severe asthma. She went for lots of different treatments and tried all sorts of things to help her out. But she still sang in a choir, worked, traveled, and loved life. Andy I admit I had lost touch with him for probably the last 15 years and all I know is he died after a brief illness. Three people struck down in the prime of their life but none of them endured months of suffering and pain.
I think this is where I am going to. Quality of life and palliative care are very important. If you are sick or stressed, do something about it. Doctors I think are understanding of the need to maintain quality of life. If yours doesn't, find a new doctor who does! But also do your part, speak up and tell them what's wrong, what's bothering you, what hurts. Go to follow up appointments and do what they tell you (provided its reasonable - I can tell you stories of unreasonable crazy things I have heard...).
If I had a choice of dying quickly with no advance warning or ten years in a nursing home, in diapers unable to feed myself, not knowing who was there. My choice would be a quick death without months or years of a horrible life. Okay, this maybe really morbid but we all should think about it. I have three friends who died unexpectedly. I personally don't know how well they had planned for life's unexpected events but their families now need to pick up the pieces and figure out what they wanted and what they have to do now. Maybe this is a prodding to get a living will, write a will, discuss options with spouse, etc.
After the funeral, we are going away for two days. We originally were going Friday but delayed our trip by one day so we could go to the funeral. I hope some downtime will relieve some of the stress. Work has been stressful as well.
But kitty has a babysitter - a professional pet service who comes and plays with him and gives him his injections. We will go stay at a B&B on the beach.
Friday, July 24, 2009
Now I feel old
In today's paper there was an article about the famous Anthony Prince spaghetti commercial. It was filmed 40 years ago and ran for 13 years. I remember watching it as a child... It can't be 40 years old because that makes me.... never mind how old I am - if you must ask, I am 29.
Here's a new idea suggested by another blogger - create a pain chart to keep tracks of what hurts and when. This might be a wise thing to bring in to my pain doctor's appointment when I finally have it so he can see what hurts when. But then that would be planning and thinking. Perhaps not.
We have house guests today. they are sleeping in because they arrived late. We were smart and took a two hour nap in front of the TV as we were waiting for them to arrive - so we missed the movie but are relatively well rested. Its my brother and two of his children and I am astounded that the kids are not yet awake. Nick is usually up around 6 at the latest and Amy not far behind. That's okay, we can be lazy for a little bit. They are going off with my parents today and I am going to work from home. I have lots of work to do. This working from home business makes sure that I work at all hours of the day and night.
Speaking of pain, right now my back hurts. How's that for a change. It didn't hurt a few minutes ago and now my upper back and lower left side hurt. Well, I'll just take my whiny back pain out to breakfast at the local diner I think.
Here's a new idea suggested by another blogger - create a pain chart to keep tracks of what hurts and when. This might be a wise thing to bring in to my pain doctor's appointment when I finally have it so he can see what hurts when. But then that would be planning and thinking. Perhaps not.
We have house guests today. they are sleeping in because they arrived late. We were smart and took a two hour nap in front of the TV as we were waiting for them to arrive - so we missed the movie but are relatively well rested. Its my brother and two of his children and I am astounded that the kids are not yet awake. Nick is usually up around 6 at the latest and Amy not far behind. That's okay, we can be lazy for a little bit. They are going off with my parents today and I am going to work from home. I have lots of work to do. This working from home business makes sure that I work at all hours of the day and night.
Speaking of pain, right now my back hurts. How's that for a change. It didn't hurt a few minutes ago and now my upper back and lower left side hurt. Well, I'll just take my whiny back pain out to breakfast at the local diner I think.
Thursday, July 23, 2009
What am I doing?
Sometimes one needs to stop and ask the question 'what am I doing?' Today I need to do this. Its 715 am and I have already worked for 1.75 hours.... What am I doing? I woke up early so I got some work done. It will make the rest of my day easier. But what am I crazy for working at 530? The cat didn't mind - because he got breakfast early. My husband just thinks I am nuts.
Yesterday I went to see my therapist. She had canceled and appointment a few weeks ago and I was going to skip a month but then decided I am a tiny bit stressed and should see her. I find it interesting to see if I can figure out how she thinks I am doing by what she says and does. For a while she mentioned a couple of times that perhaps I was ready to stop seeing her all together. But now she is very firm in signing me up for subsequent appointments. This time I got the addition 'that if I need to see her sooner to call as she gets lots of cancellations.' Hmmm... Evidently she thinks I am stressed too. Perhaps because I have nearly constant back pain, friends are dead, I am really, really busy with work, and there are always those evil little cancer thoughts lurking in the background.
Yesterday I also had the ultimate spaceshot moment. I got to work and there was a voice mail message on my machine. I never get messages. When i first started I reset my voice mail password and have gotten one message since. So I had to go in and reset my password again... And it was a hang up call.
Today will be a better day. Since I've done my work I can go for my morning walk before going to work. That always puts me in a better mood.
Yesterday I went to see my therapist. She had canceled and appointment a few weeks ago and I was going to skip a month but then decided I am a tiny bit stressed and should see her. I find it interesting to see if I can figure out how she thinks I am doing by what she says and does. For a while she mentioned a couple of times that perhaps I was ready to stop seeing her all together. But now she is very firm in signing me up for subsequent appointments. This time I got the addition 'that if I need to see her sooner to call as she gets lots of cancellations.' Hmmm... Evidently she thinks I am stressed too. Perhaps because I have nearly constant back pain, friends are dead, I am really, really busy with work, and there are always those evil little cancer thoughts lurking in the background.
Yesterday I also had the ultimate spaceshot moment. I got to work and there was a voice mail message on my machine. I never get messages. When i first started I reset my voice mail password and have gotten one message since. So I had to go in and reset my password again... And it was a hang up call.
Today will be a better day. Since I've done my work I can go for my morning walk before going to work. That always puts me in a better mood.
Wednesday, July 22, 2009
A Sad Day
Yesterday morning while reading the paper, I stopped to read the death notices. My grandmother got me in this habit - she always wanted the fine print read to her because she wanted to find out if anyone else she knew had died - she was in her 90's. You would have to read the town names and she would tell you if she knew anyone in that town, if yes, then you had to read the names of the people, if no, you could go on to the next town. Needless to say, this started a bad habit on my part.
As I was reading, I realized that a friend from junior high school had died. He was someone I knew in junior high and high school because we were in the same classes. He also hung out with some other boys I knew. After college, a mutual friend was in a blues band. He would always sit at the bar and yell "Play Freebird" at the band. They would ignore him. Over ten years ago he moved to TX. Apparently he was living in Oregon and was married with step children and step grandchildren and died after a brief illness. That was a sad way to start my day. I thought I would have a day of remembering Andy for who he was. He was 49
Later on I got a call from a friend. Another friend's husband had died Monday night. Ric came home and found Shean dead in the kitchen. He tried to resuscitate him and called 911 but it was too late. We don't know the actual cause yet but maybe a heart attack. He was 39. This is very sad. Shean and Ric were happily married and very close. They were trying to finish redoing their bathroom but could never agree on everything so they spent more than a year with it partially done. His funeral is Saturday.
It was a very sad day for me.. Two people gone too young. I also think of my friend Jill who passed away about a month ago. Another friend my age, died last November. I think I am too young to lose so many friends so soon.
Today I will allow myself to be sad... I need it in their memory.
As I was reading, I realized that a friend from junior high school had died. He was someone I knew in junior high and high school because we were in the same classes. He also hung out with some other boys I knew. After college, a mutual friend was in a blues band. He would always sit at the bar and yell "Play Freebird" at the band. They would ignore him. Over ten years ago he moved to TX. Apparently he was living in Oregon and was married with step children and step grandchildren and died after a brief illness. That was a sad way to start my day. I thought I would have a day of remembering Andy for who he was. He was 49
Later on I got a call from a friend. Another friend's husband had died Monday night. Ric came home and found Shean dead in the kitchen. He tried to resuscitate him and called 911 but it was too late. We don't know the actual cause yet but maybe a heart attack. He was 39. This is very sad. Shean and Ric were happily married and very close. They were trying to finish redoing their bathroom but could never agree on everything so they spent more than a year with it partially done. His funeral is Saturday.
It was a very sad day for me.. Two people gone too young. I also think of my friend Jill who passed away about a month ago. Another friend my age, died last November. I think I am too young to lose so many friends so soon.
Today I will allow myself to be sad... I need it in their memory.
Tuesday, July 21, 2009
AAAARRRRRGGGGHHHHH!
That would nicely sum up my day yesterday. I am not sure why I do this to myself but sometimes I just need to get it all over and done with. Yesterday I attempted to deal with multiple people in the medical profession. I spent a lot of time on hold.
Call #1 was to the pharmacy to see if the vet had called in the prescription I needed. After lots of being on hold (they'll be right with me!), I find out no, they hadn't even received it yet, even though I had called it in two days before. So I call the vet, who puts me on hold, tell me that they have been really busy, Sunday doesn't count, and generally made me feel like I was the stupid one.
Then because I wasn't done yet. I called my back doctor to see about cancellations - after being on hold, no there are none, but keep trying. Then I needed a prescription refilled so I had to call that in as well. I was the idiot on this one, I didn't realize I am down to a one day supply at this point. I hope it is ready today but I did call it in to my back pain doctor's office as opposed to the spine surgeon who originally prescribed it back in January (have I really been on it for 6 months?) and haven't seen since.
Finally, I wasn't done yet and called my therapists office to see about scheduling a new appointment and was put on hold (but they have lots of soothing messages about they will be right with me and if its a medical emergency to call 911 or go to the emergency room - apparently when its mental health they are more concerned you might be having 'issues'). But then she said - how about Wednesday? I nearly fell off my chair and took the appointment. (So maybe there is hope for my back doctor to get a cancellation before September...)
Then to stress me out on top of the fun of being on the phone, our lovely diabetic cat, who needs to eat regularly decided he didn't want to eat. I have no idea what he wanted. He wouldn't eat any food I gave him (even when I broke the rules and gave him people food - cheese and chicken). He needs to eat regularly and I think he's losing weight again. Grrr!!!
Today will be a better day because I refuse to call anyone in the medical profession and my interactions with them will be limited to picking up my prescription (I hope). I also have a busy day. 8 am phone call, work 830-10 and 1030-4, then walk. I still have work from home to do but its not happening today.
Call #1 was to the pharmacy to see if the vet had called in the prescription I needed. After lots of being on hold (they'll be right with me!), I find out no, they hadn't even received it yet, even though I had called it in two days before. So I call the vet, who puts me on hold, tell me that they have been really busy, Sunday doesn't count, and generally made me feel like I was the stupid one.
Then because I wasn't done yet. I called my back doctor to see about cancellations - after being on hold, no there are none, but keep trying. Then I needed a prescription refilled so I had to call that in as well. I was the idiot on this one, I didn't realize I am down to a one day supply at this point. I hope it is ready today but I did call it in to my back pain doctor's office as opposed to the spine surgeon who originally prescribed it back in January (have I really been on it for 6 months?) and haven't seen since.
Finally, I wasn't done yet and called my therapists office to see about scheduling a new appointment and was put on hold (but they have lots of soothing messages about they will be right with me and if its a medical emergency to call 911 or go to the emergency room - apparently when its mental health they are more concerned you might be having 'issues'). But then she said - how about Wednesday? I nearly fell off my chair and took the appointment. (So maybe there is hope for my back doctor to get a cancellation before September...)
Then to stress me out on top of the fun of being on the phone, our lovely diabetic cat, who needs to eat regularly decided he didn't want to eat. I have no idea what he wanted. He wouldn't eat any food I gave him (even when I broke the rules and gave him people food - cheese and chicken). He needs to eat regularly and I think he's losing weight again. Grrr!!!
Today will be a better day because I refuse to call anyone in the medical profession and my interactions with them will be limited to picking up my prescription (I hope). I also have a busy day. 8 am phone call, work 830-10 and 1030-4, then walk. I still have work from home to do but its not happening today.
Monday, July 20, 2009
A U-Turn or a Positive Step in Progress
First of all, 40 years ago a significant event happened - the first moon landing. But does anyone else look at this picture by Buzz Aldrin and think 'arch support'?
This story ran a few days ago on the current perspective of Gen Y BRCA positive women regarding breast cancer. I first read it and thought it was a definite sign of how the times are changing - women are getting tested for BRCA (the breast & ovarian cancer gene) at a young age and then prophetically getting mastectomies and oopharectomies (ovary removal). They are open about it. They seem relatively comfortable with it. They are being proactive to reduce their risk of getting cancer.
The more I thought about it, I was struck by the U-turn this is from previous thought processes on cancer - its no longer the big C. People don't stop talking about cancer, their diagnosis, and treatment. People are more open about it. Last week, I was in a local store and a woman walked in and an employee asked her how a family member was doing. She openly said something about how his tumor is responding to chemotherapy.
We can thank people like Betty Ford for raising the awareness about cancer and massive steps in treatment through chemotherapy and radiation, that are leading to long term survival rates. Generations ago, people usually died of infectious diseases before living long enough to get cancer. Then antibiotics came along and life expectancies increased but then cancer rates increased (note my non-medical summary - this is my personal opinion) along with pollutants, etc. But there were fewer treatment options and cancer was usually a death sentence. A cancer diagnosis was hidden. No one talked about it. It was scary.
Now we have generations of people who have grown up knowing long term cancer survivors and people who talk about cancer instead of hiding it. I see this is a lot of progress. You can't treat something that is hidden.
Okay, enough profound thought for early on a Monday morning. I had a good weekend. My back had a bad weekend. Walter and the cat I think had a good weekend but they got to listen to me whine about my back. Today it is off to work and to whine to the doctor's office about getting in for an appointment.
This story ran a few days ago on the current perspective of Gen Y BRCA positive women regarding breast cancer. I first read it and thought it was a definite sign of how the times are changing - women are getting tested for BRCA (the breast & ovarian cancer gene) at a young age and then prophetically getting mastectomies and oopharectomies (ovary removal). They are open about it. They seem relatively comfortable with it. They are being proactive to reduce their risk of getting cancer.
The more I thought about it, I was struck by the U-turn this is from previous thought processes on cancer - its no longer the big C. People don't stop talking about cancer, their diagnosis, and treatment. People are more open about it. Last week, I was in a local store and a woman walked in and an employee asked her how a family member was doing. She openly said something about how his tumor is responding to chemotherapy.
We can thank people like Betty Ford for raising the awareness about cancer and massive steps in treatment through chemotherapy and radiation, that are leading to long term survival rates. Generations ago, people usually died of infectious diseases before living long enough to get cancer. Then antibiotics came along and life expectancies increased but then cancer rates increased (note my non-medical summary - this is my personal opinion) along with pollutants, etc. But there were fewer treatment options and cancer was usually a death sentence. A cancer diagnosis was hidden. No one talked about it. It was scary.
Now we have generations of people who have grown up knowing long term cancer survivors and people who talk about cancer instead of hiding it. I see this is a lot of progress. You can't treat something that is hidden.
Okay, enough profound thought for early on a Monday morning. I had a good weekend. My back had a bad weekend. Walter and the cat I think had a good weekend but they got to listen to me whine about my back. Today it is off to work and to whine to the doctor's office about getting in for an appointment.
Sunday, July 19, 2009
It's all about quality of life
In dealing with my gazillion medical ailments, I think one of the most important things to remember is quality of life. If it's not there, what's the point? Quality of life is important. This is why we have ice cream, pain medication, and trips to the beach. Its about the intangible things in life too - feeling good, getting enjoyment from things, etc.
When the cat was diagnosed with diabetes, Walter and I agreed that its important that his quality of life stays. He can't do a lot of thing he used to do - like his little psycho kitty routine - but he still likes to play with his catnip toys. He used to like to pretend he was an outdoor cat and escape. He can't do that any more - he can't move fast enough to get away from us. But we wanted to maintain his quality of life so when we have dinner in the back yard, he gets to come with us. Our back yard is fenced in and has a gate on one side and stairs that we block off on the other side.
Last night, we were eating dinner outside and kitty was lazing around the yard with us. Then he climbed up the stairs and started walking along the stone wall inside of the fence. Then he squished (his 15 lb body) underneath the 3" gap and headed for the front yard. We did not know he was that squishable (or that ambitious) but we retrieved him and upped the supervision level. But he was enjoying himself, which is the whole point. (I think he wanted to look for birds in the front yard.)
My quality of life in some ways is better these days. I work more from home, less pressure, and get to spend more time doing the things I like. But back pain is a major detriment. When I go to the doctor, they ask me on a scale of 1-10 what's my pain level, 10 being total agony. I usually live with about a 6-7 pain level, except the rare occasion where my back cooperates. Today is not one of those days. Its a 7... But I will suck it up, take a pill, go for a walk, and ice my back.
When the cat was diagnosed with diabetes, Walter and I agreed that its important that his quality of life stays. He can't do a lot of thing he used to do - like his little psycho kitty routine - but he still likes to play with his catnip toys. He used to like to pretend he was an outdoor cat and escape. He can't do that any more - he can't move fast enough to get away from us. But we wanted to maintain his quality of life so when we have dinner in the back yard, he gets to come with us. Our back yard is fenced in and has a gate on one side and stairs that we block off on the other side.
Last night, we were eating dinner outside and kitty was lazing around the yard with us. Then he climbed up the stairs and started walking along the stone wall inside of the fence. Then he squished (his 15 lb body) underneath the 3" gap and headed for the front yard. We did not know he was that squishable (or that ambitious) but we retrieved him and upped the supervision level. But he was enjoying himself, which is the whole point. (I think he wanted to look for birds in the front yard.)
My quality of life in some ways is better these days. I work more from home, less pressure, and get to spend more time doing the things I like. But back pain is a major detriment. When I go to the doctor, they ask me on a scale of 1-10 what's my pain level, 10 being total agony. I usually live with about a 6-7 pain level, except the rare occasion where my back cooperates. Today is not one of those days. Its a 7... But I will suck it up, take a pill, go for a walk, and ice my back.
Saturday, July 18, 2009
Its Saturday
But the important thing is Walter is now home. He got in about 9 last night, a tiny bit tired after a long day on airplanes. Today, because he's so lucky, he gets to go into work. On the other hand, I have lots of things to do - laundry, working too (just so he doesn't feel like he's the only lucky one), gardening (after it stops raining), going for a walk, dishes, and a few other things I can't remember. Its a good thing I made a list earlier because I have already forgotten what I wrote down.
But today has started off so well. First my back is not being a team player today. Its not being nice. It hurts. Yesterday when I was out walking, it decided to give me some nice spasmy pains... I think its time to call the doctor's office on Monday and whine a bit to see if I can get in sooner. I have been calling twice a week to see if they have cancellations...
In the morning, we like to read the paper and watch the news in bed. I turned on the TV and got a gray screen and the evil little "no signal" message. So I did all the high tech things. I turned it off and on a few times, checked the cables to make sure they didn't come unplugged over night, turned on the other tv (to make sure we had paid the bill), and called technical support. They asked me all the technical questions - is there a little yellow light on the cable box, is the TV on channel 3, is the.... oops! Some how the channel got changed on the TV. Problem solved, life is back to normal.
Yesterday I was actually very productive. I did lots of work and then went for a walk and out to dinner with a friend. Today I should motivate.... But maybe I'll waste more time on line first because its Saturday.
But today has started off so well. First my back is not being a team player today. Its not being nice. It hurts. Yesterday when I was out walking, it decided to give me some nice spasmy pains... I think its time to call the doctor's office on Monday and whine a bit to see if I can get in sooner. I have been calling twice a week to see if they have cancellations...
In the morning, we like to read the paper and watch the news in bed. I turned on the TV and got a gray screen and the evil little "no signal" message. So I did all the high tech things. I turned it off and on a few times, checked the cables to make sure they didn't come unplugged over night, turned on the other tv (to make sure we had paid the bill), and called technical support. They asked me all the technical questions - is there a little yellow light on the cable box, is the TV on channel 3, is the.... oops! Some how the channel got changed on the TV. Problem solved, life is back to normal.
Yesterday I was actually very productive. I did lots of work and then went for a walk and out to dinner with a friend. Today I should motivate.... But maybe I'll waste more time on line first because its Saturday.
Friday, July 17, 2009
Approaching geezerdom
I am turning into an old fart. I can compare surgical scars with anyone - got lots. I have a giant pill box that allows me to remember to take my pills as needed. My bedside table is covered in prescription bottles. I have all the aches and pains. I have a giant list of doctor appointments and doctors. And then I bought myself fit over sunglasses!! (But if you catch me wearing elastic waist polyester pants and shopping in the depends aisle, you can perform an intervention.)
Finally, it is what is known as summer in New England. There was a hint of heat yesterday so that I actually wanted to turn on the fans. (Walter turned them on in April but I thought it just made things cold.) The important signs of summer are out there. My garden is starting to flower. This includes astilbe, daylilies, cosmos, balloon flowers and and bunch of annuals. My vegetable garden is showing signs of life - lots of little green tomatoes. After the month of rain, I wasn't sure they were going to happen this year.
I survived the week without Walter. Kitty got his shots. I was very busy. He comes home tonight. My real dilemma is today is trash and recycle day. We, um, 'missed' last week's trash day because we forgot to put the barrel out. I will drag it out but its on wheels. Maybe I will deal with the trash in the house but my real concern is the stupid recycle bins. We have three and I guess i can drag them out - can't lift over 20 lbs and I am not sure they are heavy, just bulky. But I think the recycled newspapers will just sit for a few weeks.
Working mostly from home today. Then a friend is coming over for dinner. Walter should be here around 9. Not sure about the weekend plans but we hope to include the beach!
Thursday, July 16, 2009
Blogging for money?
Now there are lots of people who are paid to blog by companies who make it part of their jobs or hire them as freelancers to blog regularly. That is a completely different issue. What I mean by blogging for money is the area of people who have personal blogs and go one of two different routes: One option is to put google ads on your blog and you can actually have little checks sent to you. Fine. You are not putting your readers under any obligation to pay money for something you are getting for free. But you can actually earn some cash this way. I think the downside is you can't decide which ads are shown on your blog at any given time.
Then there are other people who blatantly ask for donations to support their blog and help pay for their medical expenses. I know of several blogs that do this. I think I have a problem with this. Someone has a blog to write about their life/medical crap, etc. Most blogs are hosted for free. (I have never paid a sent for mine.) Then you are (repeatedly) asked to click the donate button and send money to support their blog and medical bills. Hmmm....
I feel a disconnect here. I don't know these people other than the fact that I have stumbled on their blogs some how. They want me to send money to help them out? I make donations to charities that I know are legit. I am not saying their needs aren't legit but there must be another way other than asking near strangers for money. For a blog reader, it makes me uneasy. Am I not supposed to read their blog because they want donations? Should I pay to read? I don't know. I just know whenever I see another donation request, I skip reading the blog for the day.
Today is another day but I slept for eight uninterrupted hours last night. This is the first time in several weeks this has happened. I do feel better. But my back still hurts...(so I can whine about it). Today is another very busy day. Work, work, more work, and perhaps a walk at the end....
Then there are other people who blatantly ask for donations to support their blog and help pay for their medical expenses. I know of several blogs that do this. I think I have a problem with this. Someone has a blog to write about their life/medical crap, etc. Most blogs are hosted for free. (I have never paid a sent for mine.) Then you are (repeatedly) asked to click the donate button and send money to support their blog and medical bills. Hmmm....
I feel a disconnect here. I don't know these people other than the fact that I have stumbled on their blogs some how. They want me to send money to help them out? I make donations to charities that I know are legit. I am not saying their needs aren't legit but there must be another way other than asking near strangers for money. For a blog reader, it makes me uneasy. Am I not supposed to read their blog because they want donations? Should I pay to read? I don't know. I just know whenever I see another donation request, I skip reading the blog for the day.
Today is another day but I slept for eight uninterrupted hours last night. This is the first time in several weeks this has happened. I do feel better. But my back still hurts...(so I can whine about it). Today is another very busy day. Work, work, more work, and perhaps a walk at the end....
Wednesday, July 15, 2009
Combining treatments
I have finally figured out a way I can combine treatments. Cancer gives me tamoxifen which gives me hot flashes (nice in January but not so nice in July). Back pain gives me pain. Both of which are solved but nice big ice packs on my back. Five minutes later, pain is starting to lessen and I need a sweater. Two for the price of one! And it didn't require another doctor visit to figure it out.
Even though my back hurt last night, I finally got a decent night's sleep (thank you little white pills) and feel better today. Yesterday morning I thought I had a nice matching pair of bags under my eyes. Today I think will be better - which is good because I am busy. Work, followed by more work, followed by a walk, followed by a 'healthy' dinner with a friend. I put 'healthy' in quotes because although it will contain all the essential food groups - vegetables, dairy, wine, etc - nachos and pinot grigio are probably not on any nutritionist's list of acceptable meals. But we get one small order of nachos and split it. And sometimes don't eat them all.
But now I will be late if I don't get off the darn computer.
Even though my back hurt last night, I finally got a decent night's sleep (thank you little white pills) and feel better today. Yesterday morning I thought I had a nice matching pair of bags under my eyes. Today I think will be better - which is good because I am busy. Work, followed by more work, followed by a walk, followed by a 'healthy' dinner with a friend. I put 'healthy' in quotes because although it will contain all the essential food groups - vegetables, dairy, wine, etc - nachos and pinot grigio are probably not on any nutritionist's list of acceptable meals. But we get one small order of nachos and split it. And sometimes don't eat them all.
But now I will be late if I don't get off the darn computer.
Tuesday, July 14, 2009
Pain
I did some research and I am not sure it was a good idea.
First I heard about this news story that swearing makes pain more bearable. Not bad, every one start swearing away instead of saying 'ouch' and 'ow'. How polite.
Then I started following the links in the article. There is a very optimistic one that says a genetic cure for pain. But if you watch the video, it says tests on humans are YEARS away. (No I don't have advanced cancer as they cite in the video.)
Another enlightening article gives pain facts and says 'scientists don't understand pain'. Wow! Great news! They can't cure cancer either. It also has my favorite: Chronic pain shrinks people's brains. So between chemo brain and pain, am I getting dumber? If I lose the equivalent of a pea size piece of my brain every year? How long do I have before I lose my mind? (How many peas in a skull?) If I have to wait years for the genetic cure for pain, will I have a brain left?
Do I feel reassured after doing my research? Not really. I think I'll go back to reading trashy novels, watching cooking shows, and wasting time on Facebook.
First I heard about this news story that swearing makes pain more bearable. Not bad, every one start swearing away instead of saying 'ouch' and 'ow'. How polite.
Then I started following the links in the article. There is a very optimistic one that says a genetic cure for pain. But if you watch the video, it says tests on humans are YEARS away. (No I don't have advanced cancer as they cite in the video.)
Another enlightening article gives pain facts and says 'scientists don't understand pain'. Wow! Great news! They can't cure cancer either. It also has my favorite: Chronic pain shrinks people's brains. So between chemo brain and pain, am I getting dumber? If I lose the equivalent of a pea size piece of my brain every year? How long do I have before I lose my mind? (How many peas in a skull?) If I have to wait years for the genetic cure for pain, will I have a brain left?
Do I feel reassured after doing my research? Not really. I think I'll go back to reading trashy novels, watching cooking shows, and wasting time on Facebook.
Monday, July 13, 2009
Am I prepared?
The question of the day is: Am I prepared? A couple of weeks ago my boss at my new job recommended me to a friend of his to do work for his company as well. We went back and forth by phone and on email and negotiated a deal. I will do a marketing/branding plan for them. I have done some prep work but today is the big deal - go down and meet with them for two hours this afternoon so I can write the plan for them. I have never met these people. Am I biting off more than I can chew? I don't know.
I do know working for people who regularly yell at you and then dealing with medical crap which is overwhelming can be bad for self confidence. I have chemo brain (or claim to) and can I remember stuff long enough to write a marketing plan? My big fear in my new jobs is that what if I am looked at like I am an idiot because I can't remember if I asked something already. I just take lots of notes and reread them...
- Do I have everything I need for the meeting? I don't even know how many people I will be meeting with. Probably around 10-15 but I am not sure.
- What they hell will we talk about for two hours? Will I remember everything? I will take lots of notes.
- What do I wear? I have no idea. Its not an interview. We already have an agreement but I need to make a good first impression. (You only have one chance to make a first impression... blah, blah, blah)
- Can I get out of there before rush hour? The meeting is scheduled from 2-4 and is south of Boston which means lots of traffic if we run late.
In the meantime, my back hurt a lot last night but I bought a big reusable cold pack which comes with a cloth bag and stretchy straps so that I could strap it on and walk around with ice on my back. It was great. But my back still hurt. I took a pain pill and that helped. But Walter is out of town this week and I never sleep well when he is not here. And it doesn't help when the cat thinks that 5 am is the perfect time to demand food. (Just because the sun is up, doesn't mean I am awake. And you could have eaten the rest of the food in your dish before you woke me up!) We will have to renegotiate this one this week.
However I have a very busy week planned. Provided I don't over schedule myself...
I do know working for people who regularly yell at you and then dealing with medical crap which is overwhelming can be bad for self confidence. I have chemo brain (or claim to) and can I remember stuff long enough to write a marketing plan? My big fear in my new jobs is that what if I am looked at like I am an idiot because I can't remember if I asked something already. I just take lots of notes and reread them...
- Do I have everything I need for the meeting? I don't even know how many people I will be meeting with. Probably around 10-15 but I am not sure.
- What they hell will we talk about for two hours? Will I remember everything? I will take lots of notes.
- What do I wear? I have no idea. Its not an interview. We already have an agreement but I need to make a good first impression. (You only have one chance to make a first impression... blah, blah, blah)
- Can I get out of there before rush hour? The meeting is scheduled from 2-4 and is south of Boston which means lots of traffic if we run late.
In the meantime, my back hurt a lot last night but I bought a big reusable cold pack which comes with a cloth bag and stretchy straps so that I could strap it on and walk around with ice on my back. It was great. But my back still hurt. I took a pain pill and that helped. But Walter is out of town this week and I never sleep well when he is not here. And it doesn't help when the cat thinks that 5 am is the perfect time to demand food. (Just because the sun is up, doesn't mean I am awake. And you could have eaten the rest of the food in your dish before you woke me up!) We will have to renegotiate this one this week.
However I have a very busy week planned. Provided I don't over schedule myself...
Sunday, July 12, 2009
A bucket list
In case you don't know, a bucket list is the list of things that you want to do before you kick the bucket. There was a relatively good movie with the same title a couple of years ago with Morgan Freeman and Jack Nicholson by the same title - worth watching but be aware that it doesn't have a happy ending. (I actually think they show chemo quite accurately in it).
Anyway, I think the term bucket list has a connotation that you have a short period of time ahead of you. Then a Facebook friend said 'My theory is if I just keep expanding and adding to the list, then I will never complete it and have no reason to die!' I like her theory and think perhaps I need to get a little organized about what I want to do so I might actually do them. I have already traveled a lot but there are some places I want to go to:
- Iceland on my 50th birthday. Why? Why not? Its there, I have never been and I want to go.
- Costa del Sol in Spain again. I was there 30 years ago and think I will appreciate it more now as an adult. But I also want a side trip back to Madrid to see the Prado and get some more of the best paella I have ever eaten.
- Walking tour of Scotland. But in the summer. Not the winter. Ditto for the Alps.
- Skating on the canals in the Netherlands. I used to skate. I loved Hans Brinker as a child. I want to skate on the canals.
- Hiking in Hawaii. Volcanoes, snow, and a tropical paradise! I want to go.
- Learn how to make pie crust. Don't ask. I can't make pie crust. I have made lots of other things in my life including souffles, roasts, mousse, etc. But I can't make basic pie crust. I make shoe leather.
That's enough for now. Because as my friend said if you never complete it, you will have no reason to die.
I think the key thing about bucket lists is you have to compile them for yourself. Last year some well meaning person asked me if my vacation was something that was on my bucket list. This upset me - did she think I was about to drop dead or something? Since I am in control with this year, it is my decision and I will just keep adding to it.
So now off for my walk with my husband. Then breakfast and take him to the airport this afternoon for a business trip (his, not mine) and out for dinner with a friend.
Anyway, I think the term bucket list has a connotation that you have a short period of time ahead of you. Then a Facebook friend said 'My theory is if I just keep expanding and adding to the list, then I will never complete it and have no reason to die!' I like her theory and think perhaps I need to get a little organized about what I want to do so I might actually do them. I have already traveled a lot but there are some places I want to go to:
- Iceland on my 50th birthday. Why? Why not? Its there, I have never been and I want to go.
- Costa del Sol in Spain again. I was there 30 years ago and think I will appreciate it more now as an adult. But I also want a side trip back to Madrid to see the Prado and get some more of the best paella I have ever eaten.
- Walking tour of Scotland. But in the summer. Not the winter. Ditto for the Alps.
- Skating on the canals in the Netherlands. I used to skate. I loved Hans Brinker as a child. I want to skate on the canals.
- Hiking in Hawaii. Volcanoes, snow, and a tropical paradise! I want to go.
- Learn how to make pie crust. Don't ask. I can't make pie crust. I have made lots of other things in my life including souffles, roasts, mousse, etc. But I can't make basic pie crust. I make shoe leather.
That's enough for now. Because as my friend said if you never complete it, you will have no reason to die.
I think the key thing about bucket lists is you have to compile them for yourself. Last year some well meaning person asked me if my vacation was something that was on my bucket list. This upset me - did she think I was about to drop dead or something? Since I am in control with this year, it is my decision and I will just keep adding to it.
So now off for my walk with my husband. Then breakfast and take him to the airport this afternoon for a business trip (his, not mine) and out for dinner with a friend.
Saturday, July 11, 2009
This working business is driving me crazy.
I have figured out I am working too much and it is interfering with my walks, book reading, gardening, and other fun time. One job has me working 5 days a week, at lest a couple of hours, then I have my other job that I go to three days a week for five hours each, and then two contract jobs that all of a sudden are both keeping me busy. Finally, I have a new job I have to prep for a big meeting on Monday that should turn into a consistent contract job. What was I thinking? Too much work, and I don't get to have any fun.
It seems I am experiencing a lull so to speak between doctor appointments. My next appointment was to be on Tuesday for my therapist but she canceled because she has to go to a funeral. My back doctor isn't until September (unless it gets fit in) so I only have my radiation oncologist in mid-august some time. So I guess in all this spare time, I can do more work? Hmmm... My daily walks have been lacking and my garden has weeds. I will stick with them.
In examining my calendar, I decided to start color coding things. I leave all the work crap in white so it isn't overwhelming. Medical crap is in red so I can't forget it. But vacations or time away, is in green. I have lots of green planned on my calendar in the next three months: a weekend on the beach in RI, a weekend on Cape Cod, a weekend camping in New York, and week in a cottage on the ocean in Maine, and a long weekend to my college reunion in WI. All that between now and the beginning of October.
I'll just take my pain meds and travel with them. My back doesn't like travel. And I can't carry things over 20 lbs - wheeled luggage here I come! I think I'll also have to get better at the look pathetic at the luggage that needs to go into the overhead bin when I fly to WI by myself. The rest of the time Walter knows he gets to carry everything.
Speaking of travel, Walter is going to San Diego tomorrow for the week. I will be home by myself so I am planning nights out with my friends to fill my time. I'll also have to give kitty his shots. I have now done it three times and its been okay. But the needle isn't going into me so I think I can handle it.
Its a beautiful day. We are off for a walk and then to the local diner for a breakfast of grease and fat (well maybe slightly healthy, they have an awesome side of fruit...)
It seems I am experiencing a lull so to speak between doctor appointments. My next appointment was to be on Tuesday for my therapist but she canceled because she has to go to a funeral. My back doctor isn't until September (unless it gets fit in) so I only have my radiation oncologist in mid-august some time. So I guess in all this spare time, I can do more work? Hmmm... My daily walks have been lacking and my garden has weeds. I will stick with them.
In examining my calendar, I decided to start color coding things. I leave all the work crap in white so it isn't overwhelming. Medical crap is in red so I can't forget it. But vacations or time away, is in green. I have lots of green planned on my calendar in the next three months: a weekend on the beach in RI, a weekend on Cape Cod, a weekend camping in New York, and week in a cottage on the ocean in Maine, and a long weekend to my college reunion in WI. All that between now and the beginning of October.
I'll just take my pain meds and travel with them. My back doesn't like travel. And I can't carry things over 20 lbs - wheeled luggage here I come! I think I'll also have to get better at the look pathetic at the luggage that needs to go into the overhead bin when I fly to WI by myself. The rest of the time Walter knows he gets to carry everything.
Speaking of travel, Walter is going to San Diego tomorrow for the week. I will be home by myself so I am planning nights out with my friends to fill my time. I'll also have to give kitty his shots. I have now done it three times and its been okay. But the needle isn't going into me so I think I can handle it.
Its a beautiful day. We are off for a walk and then to the local diner for a breakfast of grease and fat (well maybe slightly healthy, they have an awesome side of fruit...)
Friday, July 10, 2009
My doctor needs new writers
So I went for my nasty adventure on Monday where they stuck a few 'you might feel a little pain for a second' needles in my back which, if successful, was to be followed by a nastier procedure which you get to sleep through but promises semi permanent results. I filled in my pain diary and faxed it to my doctor with a nice note on Tuesday.
They called yesterday. He doesn't want me to have the next treatment but wants me to come back and see him. His first available appointment is SEPTEMBER 4. The nurse said to me that's only six weeks (not sure where she learned to count but on my calendar that's 8 weeks) but said to call regularly to see if they have cancellations which happens all the time. The last time I wanted to see him, I had to wait a month for an appointment but someone canceled so I got in a week later so there is hope, but I am still crabby about it.
This also means that apparently he didn't like the results of the diagnostic procedure on Monday... Why? Maybe because of relieving pain, it increased my pain temporarily so I had to sit down? When I saw him before the nasty procedure, he told me that even after we deal with my lower back we still have the sacroiliac joints to deal with. I don't know. Are we skipping the lower back and moving on to the sacroiliac joints? Or are we trying something else for the lower back first? I do know I don't want to wait two months so you can be sure I will be calling regularly. Just call me the not so patient patient. Particularly when back pain makes me cranky...
They called yesterday. He doesn't want me to have the next treatment but wants me to come back and see him. His first available appointment is SEPTEMBER 4. The nurse said to me that's only six weeks (not sure where she learned to count but on my calendar that's 8 weeks) but said to call regularly to see if they have cancellations which happens all the time. The last time I wanted to see him, I had to wait a month for an appointment but someone canceled so I got in a week later so there is hope, but I am still crabby about it.
This also means that apparently he didn't like the results of the diagnostic procedure on Monday... Why? Maybe because of relieving pain, it increased my pain temporarily so I had to sit down? When I saw him before the nasty procedure, he told me that even after we deal with my lower back we still have the sacroiliac joints to deal with. I don't know. Are we skipping the lower back and moving on to the sacroiliac joints? Or are we trying something else for the lower back first? I do know I don't want to wait two months so you can be sure I will be calling regularly. Just call me the not so patient patient. Particularly when back pain makes me cranky...
Thursday, July 9, 2009
It comes with a lifetime guarantee!
I was listening to the radio as I drove to meet friends for dinner last night. There was an ad that came on for mortuary stones - with a life time guarantee! But who's life? Considering you buy them for when you die? I thought this was a well 'doh' marketing moment. But my husband did point out that they wouldn't get a lot of complaints that way if all their customers were dead. So maybe its smart marketing after all.
I had dinner with some friends who we all went through cancer treatment about the same time. We did talk about the importance of lifetime guarantees, life insurance, saving for retirement, and all that long term stuff that gets skewed with cancer. Why am I saving for money to live on in forty years if my chances are being here in 40 years are somewhat less than most others? But then we all decided that Oprah gave the best advice a few years ago: save for retirement and die broke. We decided that living the best life possible is the best way to do it. Someone's advice as 'live every day like it was Christmas'. I think there are a bunch of country music songs on the topic "Live Like You Were Dying", etc. Anyway, enough morbid talk.
Then I walked out of the restaurant and in the parking lot were four men talking. I realized I worked with three of them for several years until a layoff in 2002 and hadn't seen any of them since. I had head through mutual friends on how some of them were doing so I know two are now married, who works for whom, etc. But did I want to rush over and say hello? Not really. Too much time had passed. Too much water under the bridge. And did I really want to go through how am I doing, blah, blah, blah? The last former co-worker I had told about my health issues, I have not heard from since. I am not prepared for others to say 'oh, that's too bad, we'll do lunch sometime' and drop off the planet. So I turned with my friends and we walked to our cars and drove off.
My question for myself is if there hadn't been cancer in my life in the intervening years, would I have walked over and said hello? I am not sure. Cancer changes everything.
I had dinner with some friends who we all went through cancer treatment about the same time. We did talk about the importance of lifetime guarantees, life insurance, saving for retirement, and all that long term stuff that gets skewed with cancer. Why am I saving for money to live on in forty years if my chances are being here in 40 years are somewhat less than most others? But then we all decided that Oprah gave the best advice a few years ago: save for retirement and die broke. We decided that living the best life possible is the best way to do it. Someone's advice as 'live every day like it was Christmas'. I think there are a bunch of country music songs on the topic "Live Like You Were Dying", etc. Anyway, enough morbid talk.
Then I walked out of the restaurant and in the parking lot were four men talking. I realized I worked with three of them for several years until a layoff in 2002 and hadn't seen any of them since. I had head through mutual friends on how some of them were doing so I know two are now married, who works for whom, etc. But did I want to rush over and say hello? Not really. Too much time had passed. Too much water under the bridge. And did I really want to go through how am I doing, blah, blah, blah? The last former co-worker I had told about my health issues, I have not heard from since. I am not prepared for others to say 'oh, that's too bad, we'll do lunch sometime' and drop off the planet. So I turned with my friends and we walked to our cars and drove off.
My question for myself is if there hadn't been cancer in my life in the intervening years, would I have walked over and said hello? I am not sure. Cancer changes everything.
Wednesday, July 8, 2009
A very nice offer
Yesterday someone posted a very nice offer on my blog. I really don't think I am going to take them up on it. In fact I deleted it to preserve their privacy. Basically, this person has done all sorts of research and found a surgery free way to cure breast cancer. If I send them my email they will send me links so they can prove this to me. Then if I send them $2500, they will give me the cure. I really don't have $2500 to spare, nor do I particularly want to share my email address with someone of this caliber so I have declined. (But if there is anyone out there who wishes to reply to this person and get spammed and ripped off, feel free to let me know and I will be sure to send you their offer.)
It is very sad that there are people like this out there. A friend of mine had a recurrence and technically is now stage IV. She was talking about being approached by people like this. The woman who runs our support group says that they will now come out of the woodwork. People who prey on sick people are right up their with child molesters as far as I am concerned. If you are sick, and not likely to get better, you deserve special protections for this kind of predator - because that's exactly what they are.
Anyway, life goes on. I faxed my pain log to the doctor yesterday but didn't hear back. I'll wait until tomorrow to call to see what's next on the agenda. I am also feeling a tiny bit overscheduled. Today: 745 cat to vet, 8-10 work at community ed, 1030-315 work at new job, 330-430 walk, 430-5 farmers market, 515 pick up cat, 630 dinner with friends.... No time to do the other work I need to do from home. Grrr... Oh, and my back hurts.
It is very sad that there are people like this out there. A friend of mine had a recurrence and technically is now stage IV. She was talking about being approached by people like this. The woman who runs our support group says that they will now come out of the woodwork. People who prey on sick people are right up their with child molesters as far as I am concerned. If you are sick, and not likely to get better, you deserve special protections for this kind of predator - because that's exactly what they are.
Anyway, life goes on. I faxed my pain log to the doctor yesterday but didn't hear back. I'll wait until tomorrow to call to see what's next on the agenda. I am also feeling a tiny bit overscheduled. Today: 745 cat to vet, 8-10 work at community ed, 1030-315 work at new job, 330-430 walk, 430-5 farmers market, 515 pick up cat, 630 dinner with friends.... No time to do the other work I need to do from home. Grrr... Oh, and my back hurts.
Tuesday, July 7, 2009
Nasty
Well, that was nasty. Horrible. Painful. Awful. Probably one of the worst medical procedures I have experienced. The literature does say 'We will numb your skin first with a small needle, which will sting just a little bit.' THAT WAS A LIE. They stuck me many times and the needle burned. Then came the painful part 'which would only hurt for 2 seconds and then take effect' when they stuck the numbing stuff down by my spine. Um, what about the part where the pain radiates to my hip? They didn't mention that part. At the end the doctor said 'next time it will be better, we will sedate you.'
When we came home, they said keep a pain log for five hours and do normal activities. So after a little computer work, we went out for a walk. At the end of 15 minutes I was in so much pain in my hip and leg, I had to sit down and then walked slowly home. Then I called the on call pain doctor who said 'this isn't an abnormal reaction, ice the hell out of it and take anti-inflammatories'. He also said to call my doctor in the AM if it wasn't better. It did get better with ice and inflammatories.
Okay, it was awful. I am done whining (for now). But I think it was helpful except when I tried to go for a walk. But perhaps now I will have the other procedure (under sedation). I will see what they say.
Today, I am off on an over scheduled day. But when I go for a walk this afternoon, Walter will go with me in case of another eventful walk.
Kitty news update: he is lazing around, some days better than others. He goes back to the vet tomorrow to see if they can determine his insulin levels.
When we came home, they said keep a pain log for five hours and do normal activities. So after a little computer work, we went out for a walk. At the end of 15 minutes I was in so much pain in my hip and leg, I had to sit down and then walked slowly home. Then I called the on call pain doctor who said 'this isn't an abnormal reaction, ice the hell out of it and take anti-inflammatories'. He also said to call my doctor in the AM if it wasn't better. It did get better with ice and inflammatories.
Okay, it was awful. I am done whining (for now). But I think it was helpful except when I tried to go for a walk. But perhaps now I will have the other procedure (under sedation). I will see what they say.
Today, I am off on an over scheduled day. But when I go for a walk this afternoon, Walter will go with me in case of another eventful walk.
Kitty news update: he is lazing around, some days better than others. He goes back to the vet tomorrow to see if they can determine his insulin levels.
Monday, July 6, 2009
Book report: ChemoBrain by Eileen Clegg
But first a little side note on this story of a mother who refused treatment for her then six year old autistic son who was diagnosed with non-Hodgkins lymphoma with a very high survival rate. She never took him to the doctor. Finally, she lost custody of him and he went to live with his father but by then it was too late and he had leukemia and died at age nine. She has been arrested on all sorts of charges and will face some jail time.
I am all for people getting the treatment they want to cure them. I view a doctors recommendations as suggestions and before I accept them I make sure I understand them and their impact on my body. Its my body, my choices. But if you are caring for a six year old who is autistic and not capable of making the decisions you must make the right decisions for him. If he is too young to make the decisions about his body, shouldn't you follow advice that will allow him to grow up and be able to make those decisions? Is that too much to ask?
No on to my book report.I had heard of Eileen Clegg's book on chemobrain some months ago. But then my chemo brain prevented me from remembering to purchase it, then once purchased, I kept forgetting to read it. Finally this weekend, I made it through it. Its not that the book is badly written, I found it a little technical but fairly easy to follow.
I have no medical training (merely am a professional patient) and this is what I take from it: Chemotherapy destroys fast growing cells. Brain cells are also fast growing so during chemo, new cells don't grow to replace older ones which are dying off. Those missing cells are never replaced. Hence, memory gaps, chemobrain, or cognitive deficit.
The next point is that cognitive deficit can occur as the result of stress (such as cancer diagnosis and treatment), natural aging (such as menopause - including chemo induced menopause), and other natural causes. So if a woman is diagnosed with breast cancer (stress), receives treatment (brain cells die off and menopause is induced), which factor causes the cognitive deficit? No one is rushing to call it chemo brain because it apparently occur for other reasons.
Finally, there have been small and inconclusive studies on this. The problem is a patient can have stress, chemo and menopause simultaneously so how do you separate which one is which? I am not sure that I do. I think I just claim chemo brain.
But if you want to read it for your self, please do. She also has sections on the affect of chemo brain on children and young adults. I do recommend the book.
One side note, when I purchased this book in the store, the cashier looked at the title and said something like 'hmmm Chemo brain, sounds like some weird science fiction thing.' I replied 'I only wish it was'.
So now I am through with that I am off for my nasty procedure today that I will just not think about all day. I was given the option at work to take the morning off or to work. I said 'sit around at home and stress about it or go into work and be distracted?' Thanks but I'll take distracted. See you at 8.
I am all for people getting the treatment they want to cure them. I view a doctors recommendations as suggestions and before I accept them I make sure I understand them and their impact on my body. Its my body, my choices. But if you are caring for a six year old who is autistic and not capable of making the decisions you must make the right decisions for him. If he is too young to make the decisions about his body, shouldn't you follow advice that will allow him to grow up and be able to make those decisions? Is that too much to ask?
No on to my book report.I had heard of Eileen Clegg's book on chemobrain some months ago. But then my chemo brain prevented me from remembering to purchase it, then once purchased, I kept forgetting to read it. Finally this weekend, I made it through it. Its not that the book is badly written, I found it a little technical but fairly easy to follow.
I have no medical training (merely am a professional patient) and this is what I take from it: Chemotherapy destroys fast growing cells. Brain cells are also fast growing so during chemo, new cells don't grow to replace older ones which are dying off. Those missing cells are never replaced. Hence, memory gaps, chemobrain, or cognitive deficit.
The next point is that cognitive deficit can occur as the result of stress (such as cancer diagnosis and treatment), natural aging (such as menopause - including chemo induced menopause), and other natural causes. So if a woman is diagnosed with breast cancer (stress), receives treatment (brain cells die off and menopause is induced), which factor causes the cognitive deficit? No one is rushing to call it chemo brain because it apparently occur for other reasons.
Finally, there have been small and inconclusive studies on this. The problem is a patient can have stress, chemo and menopause simultaneously so how do you separate which one is which? I am not sure that I do. I think I just claim chemo brain.
But if you want to read it for your self, please do. She also has sections on the affect of chemo brain on children and young adults. I do recommend the book.
One side note, when I purchased this book in the store, the cashier looked at the title and said something like 'hmmm Chemo brain, sounds like some weird science fiction thing.' I replied 'I only wish it was'.
So now I am through with that I am off for my nasty procedure today that I will just not think about all day. I was given the option at work to take the morning off or to work. I said 'sit around at home and stress about it or go into work and be distracted?' Thanks but I'll take distracted. See you at 8.
Sunday, July 5, 2009
I Should Never Read This Stuff
When they tell you you need a procedure, they give you a little sheet of paper with questions and answers to take home and read. I most prudently do this the day before. Tomorrow, I am going to have a diagnostic facet block which means they will stick six needles in my back using an x-ray machine to guide them. 'This is a diagnostic block because you will either feel better, meaning these joints are responsible for your pain, or you won't feel better, meaning that these joints are not generating your pain and we must look elsewhere for causes. You will be sent home with a pain diary to record how you are feeling after the block. Remember this is only TEMPORARY relief that may last a few hours to a few days. If it appears as if you obtained adequate relief from this block, we will consider the next step, which is radiofrequency ablation of the same nerves.'
They next discuss the icky parts - what are the risks and what they actually do during the procedure. Then after the procedure: "you will be taken to the recovery room in a wheelchair and discharged home shortly thereafter. It is very important for you to fill out the pain diary as accurately as you can. We want to know how your USUAL pains responded to the blocks. You are encouraged to be as active as you can be, really 'test' the back. Remember, we are not really masking anything so you will not hurt yourself. You may have some local tenderness from the needles, which ice may help relieve. Also, take your normal pain medicines.'
Hmmm... so they stick six needles in my back and then I need to go home and see if my back hurts more or less. I'm not sure I like the wheelchair part either. The other injections did not involve wheelchairs (why am I thinking of "Curious George Goes to the Hospital" all of a sudden - where he gets involved in wheelchairs on ramps?)Anyway, now I am sufficiently grossed out and stressed out.
Today my back hurts. Yesterday my back really hurt. I can't take any of my back stuff this weekend so it hurts all the time. In view of that fact, I made an executive decision yesterday that if my back was going to hurt I could sit at home and do nothing and it would hurt, or we could go out and have fun and celebrate the holiday and it would hurt. We opted for plan B and went and played mini golf, games in the arcade, and had ice cream. (Ice cream is important in stress relief and I haven't had any in a long time.) Then my back really hurt so I iced it for most of the afternoon. This morning I woke up and my back hurts. We were going to get up and go to the beach this morning but decided against it for several reasons, the big one being the state of my back. (But also it would be high tide at the wrong time and really crowded because its July 4th weekend and the first nice weekend in months.)
Tomorrow I will go to work in the morning and then have my fun adventure. Then I can at least start taking my pain meds. I'll just live in my whiney state for another day.
They next discuss the icky parts - what are the risks and what they actually do during the procedure. Then after the procedure: "you will be taken to the recovery room in a wheelchair and discharged home shortly thereafter. It is very important for you to fill out the pain diary as accurately as you can. We want to know how your USUAL pains responded to the blocks. You are encouraged to be as active as you can be, really 'test' the back. Remember, we are not really masking anything so you will not hurt yourself. You may have some local tenderness from the needles, which ice may help relieve. Also, take your normal pain medicines.'
Hmmm... so they stick six needles in my back and then I need to go home and see if my back hurts more or less. I'm not sure I like the wheelchair part either. The other injections did not involve wheelchairs (why am I thinking of "Curious George Goes to the Hospital" all of a sudden - where he gets involved in wheelchairs on ramps?)Anyway, now I am sufficiently grossed out and stressed out.
Today my back hurts. Yesterday my back really hurt. I can't take any of my back stuff this weekend so it hurts all the time. In view of that fact, I made an executive decision yesterday that if my back was going to hurt I could sit at home and do nothing and it would hurt, or we could go out and have fun and celebrate the holiday and it would hurt. We opted for plan B and went and played mini golf, games in the arcade, and had ice cream. (Ice cream is important in stress relief and I haven't had any in a long time.) Then my back really hurt so I iced it for most of the afternoon. This morning I woke up and my back hurts. We were going to get up and go to the beach this morning but decided against it for several reasons, the big one being the state of my back. (But also it would be high tide at the wrong time and really crowded because its July 4th weekend and the first nice weekend in months.)
Tomorrow I will go to work in the morning and then have my fun adventure. Then I can at least start taking my pain meds. I'll just live in my whiney state for another day.
Saturday, July 4, 2009
More thoughts on counting
After yesterday's realization I had hit 750 blog posts, I started thinking about things you count - there are ones you should and ones you shouldn't.
You should count birthdays. Age is an achievement. The American Cancer Society has started a movement for more birthdays for everyone. They will sponsor your birthday. I am not sure I need a sponsor for my birthday but will happily celebrate it again this year. We will be away in Maine together for a week - our birthdays are five days apart so we always plan a vacation where we get to go do what we want.
You should count anniversaries. My husband and I just celebrated our fourth wedding anniversary. That's four years of living together happily, but unfortunately stupid medical problems continuously - but those shouldn't be counted.
Some people also count milestones in their lives: years since cancer diagnosis, or since life saving stem cell transplant, or other medical milestones. I am not so sure how I am supposed to count years since cancer diagnosis. I almost got to 26 and then do I start over two years ago at my next diagnosis? Or do I get to have two counts - one is two and one is 28 next month? (So confusing and then chemo brain kicks in and I can't figure it out...)
But there are things you shouldn't count. Like the number of doctor appointments in a year. Last year I had 79 doctor appointments. This year so far I have had 30... Which means I am on track for 60 this year. I was hoping for ten. If you count the wrong things, that would be things which are beyond your control, you can too easily set yourself up for disappointment.
There are many things in life to count but that shouldn't be counted. The important thing is to figure out which ones you should count, and keep track of them.
Yesterday I got together with a friend for lunch and we had Ethiopian food. I have never had Ethiopian food - it was yummy! I highly recommend it. We both decided that we will get together in another month or so and try Nepalese food...
My back is not happy. I am having my injections on Monday which means I can't take any of my anti-inflammatories or muscle relaxants. I spent many hours on an ice pack yesterday. When ever I start wondering if the medications help, I can tell as soon as I stop taking them.
The cat is very annoying. Which means he is healthy. Yesterday I went to the vet and bought a bad of prescription dry food which cost about three times as much as the over the counter diabetic cat food that he stopped eating after 1 week which was three times as much as the cheap stuff he used to get. So the question is, how long until he decides he doesn't like the really expensive stuff either? Good thing the vet has a money back guarantee.
Today is the fourth of July. I don't know how we are celebrating but we will go enjoy the sunshine. Possibly even cook on the grill outside. My back hurts so we will not go far.
You should count birthdays. Age is an achievement. The American Cancer Society has started a movement for more birthdays for everyone. They will sponsor your birthday. I am not sure I need a sponsor for my birthday but will happily celebrate it again this year. We will be away in Maine together for a week - our birthdays are five days apart so we always plan a vacation where we get to go do what we want.
You should count anniversaries. My husband and I just celebrated our fourth wedding anniversary. That's four years of living together happily, but unfortunately stupid medical problems continuously - but those shouldn't be counted.
Some people also count milestones in their lives: years since cancer diagnosis, or since life saving stem cell transplant, or other medical milestones. I am not so sure how I am supposed to count years since cancer diagnosis. I almost got to 26 and then do I start over two years ago at my next diagnosis? Or do I get to have two counts - one is two and one is 28 next month? (So confusing and then chemo brain kicks in and I can't figure it out...)
But there are things you shouldn't count. Like the number of doctor appointments in a year. Last year I had 79 doctor appointments. This year so far I have had 30... Which means I am on track for 60 this year. I was hoping for ten. If you count the wrong things, that would be things which are beyond your control, you can too easily set yourself up for disappointment.
There are many things in life to count but that shouldn't be counted. The important thing is to figure out which ones you should count, and keep track of them.
Yesterday I got together with a friend for lunch and we had Ethiopian food. I have never had Ethiopian food - it was yummy! I highly recommend it. We both decided that we will get together in another month or so and try Nepalese food...
My back is not happy. I am having my injections on Monday which means I can't take any of my anti-inflammatories or muscle relaxants. I spent many hours on an ice pack yesterday. When ever I start wondering if the medications help, I can tell as soon as I stop taking them.
The cat is very annoying. Which means he is healthy. Yesterday I went to the vet and bought a bad of prescription dry food which cost about three times as much as the over the counter diabetic cat food that he stopped eating after 1 week which was three times as much as the cheap stuff he used to get. So the question is, how long until he decides he doesn't like the really expensive stuff either? Good thing the vet has a money back guarantee.
Today is the fourth of July. I don't know how we are celebrating but we will go enjoy the sunshine. Possibly even cook on the grill outside. My back hurts so we will not go far.
Friday, July 3, 2009
Holy crap! Post # 750
Can it really be 750 posts about my medical crap - not just cancer but everything else (I didn't count it up, when I log in the little counter tells me how many I have written)? When I started my blog over two years ago, it was for the express purposes of dealing with my medical issues and creating a way for friends and family to keep up with how I am doing without me having to go through everything a million times on the phone. So how's it working?
- I don't think most of my family reads my blog so I am not sure if they know what I am doing. Question: what did I do the last weekend in May and what am I doing this coming Monday?
- I think some of my friends read my blog and then they call me to discuss what I wrote - which sort of defeats the purpose but is really okay. I didn't have to explain whats going on but we could talk about it.
-I have found there is a whole world of people who blog there way through cancer, leukemia, diabetes and other chronic illnesses. I have found a whole new world out there full of friends. We read each others blogs and keep up with people who I would otherwise never know. Its pretty cool.
But when I started, did I think I would write almost every day and end up at 750 entries? Absolutely not. I was supposed to be done with the medical stuff in a year. Maybe my secret inner writer is coming through... But my high school English teacher would definitely disagree that I have the capacity to have a secret inner writer. All I know is I am still blogging and people are still reading.
I just found out that Google is having its second 10th birthday (don't know why they can't say 20th birthday) and blogger (who hosts my blog) is turning ten in August. They are collecting stories about blogging... Perhaps I will harness my secret inner writer and come up with something profound.
In the meantime, my back hurts and I have ice on it (and a counteracting warm kitty on my lap). I need some sunshine or I will grow mold. Chronic pain sucks.
- I don't think most of my family reads my blog so I am not sure if they know what I am doing. Question: what did I do the last weekend in May and what am I doing this coming Monday?
- I think some of my friends read my blog and then they call me to discuss what I wrote - which sort of defeats the purpose but is really okay. I didn't have to explain whats going on but we could talk about it.
-I have found there is a whole world of people who blog there way through cancer, leukemia, diabetes and other chronic illnesses. I have found a whole new world out there full of friends. We read each others blogs and keep up with people who I would otherwise never know. Its pretty cool.
But when I started, did I think I would write almost every day and end up at 750 entries? Absolutely not. I was supposed to be done with the medical stuff in a year. Maybe my secret inner writer is coming through... But my high school English teacher would definitely disagree that I have the capacity to have a secret inner writer. All I know is I am still blogging and people are still reading.
I just found out that Google is having its second 10th birthday (don't know why they can't say 20th birthday) and blogger (who hosts my blog) is turning ten in August. They are collecting stories about blogging... Perhaps I will harness my secret inner writer and come up with something profound.
In the meantime, my back hurts and I have ice on it (and a counteracting warm kitty on my lap). I need some sunshine or I will grow mold. Chronic pain sucks.
Thursday, July 2, 2009
Embarassing ailments
Face it, we have all had them. I am not talking about the giant zit that blooms before a hot date or big event but the ones where you call your doctor's office and wish you could whisper it to the nurse... Instead of having to explain it in great detail. So you whisper it to the nurse who makes and appointment. You get in to see them and the nurse says in a normal voice 'so you have a thingy on your whatsis'. The doctor will be right in. Then the doctor examines you and asks all sorts of questions in a normal voice - which you can swear everyone in the waiting room can hear. How mortifying! But face it we all get them.
I have an 'embarrassing ailment' that tends to come and go and is basically one of those things they don't have many treatments for and it may or may not go away. I just have to deal with it and whine about it. But I am getting good at whining and we should do what we can do best.
As I walked through the living room this morning my husband is watching a rerun of Hill Street Blues (courtesy of the DVR we get to watch the same shows we did 20 or 25 years ago) and there was an episode where a character had a boil on his butt. (No I do not have a boil.) I think this is Hollywood's way of saying that TV characters aren't necessarily air brushed and completely healthy with cosmetic enhancements.
Anyway, life goes on with our embarrassing ailments. Sometimes we share them with our friends to give us something to laugh about. Sometimes we ignore them and hope everyone else will be polite enough to do so as well. During cancer treatment, or treatment for any long term or chronic condition, I think you basically lose all sense of modesty (not that I am going to stop streaking or anything) that there isn't a medical topic not to be discussed. Then the embarrassing ailment shows up and sort of pushes over the edge.
Today is another tropical summer day in Boston - 60 degrees (high temp of 64) and rain. I am not making this up. Today's newspaper had instructions on how to build an ark. It has rained for 13 of the last 14 days. The forecast is the same (I think the forecasters all conspire to show the same cheerful faces saying the same thing to reduce the insults from viewers) with rain today and tomorrow but a good chance of sun on Saturday. Tomorrow I bet it says rain today and tomorrow but with a good chance of sun on Sunday.... I am not worried about sunscreen these days. I am worried I will start growing mold (and about spending too much time on the internet and being late for work).
I have an 'embarrassing ailment' that tends to come and go and is basically one of those things they don't have many treatments for and it may or may not go away. I just have to deal with it and whine about it. But I am getting good at whining and we should do what we can do best.
As I walked through the living room this morning my husband is watching a rerun of Hill Street Blues (courtesy of the DVR we get to watch the same shows we did 20 or 25 years ago) and there was an episode where a character had a boil on his butt. (No I do not have a boil.) I think this is Hollywood's way of saying that TV characters aren't necessarily air brushed and completely healthy with cosmetic enhancements.
Anyway, life goes on with our embarrassing ailments. Sometimes we share them with our friends to give us something to laugh about. Sometimes we ignore them and hope everyone else will be polite enough to do so as well. During cancer treatment, or treatment for any long term or chronic condition, I think you basically lose all sense of modesty (not that I am going to stop streaking or anything) that there isn't a medical topic not to be discussed. Then the embarrassing ailment shows up and sort of pushes over the edge.
Today is another tropical summer day in Boston - 60 degrees (high temp of 64) and rain. I am not making this up. Today's newspaper had instructions on how to build an ark. It has rained for 13 of the last 14 days. The forecast is the same (I think the forecasters all conspire to show the same cheerful faces saying the same thing to reduce the insults from viewers) with rain today and tomorrow but a good chance of sun on Saturday. Tomorrow I bet it says rain today and tomorrow but with a good chance of sun on Sunday.... I am not worried about sunscreen these days. I am worried I will start growing mold (and about spending too much time on the internet and being late for work).
Wednesday, July 1, 2009
The tale of two breast cancers from Consumer Reports
But first my morning started with trauma:
The coffee maker didn't work. I am suffering without but will buy a cup on my way to work. Later today I will buy a new coffee maker.
There was a mouse caught in the trap on top of the stove. Walter didn't see it. I did. I am so grossed out by the whole thing now. (Why didn't the cat catch the mouse in the first place?) Why didn't Walter see it first when he went into the kitchen to get coffee! YUCKY!
Now back to my regularly schedule blog: I was reading my new issue of Consumer Reports (I know I should go green and read it online but I like the paper issues). It was all about remodeling kitchens and bathrooms which is of great interest to me as we have a distinct shortage of cabinets, ugly linoleum (on top of at least two more layers) in the kitchen, and some lovely light blue and metallic silver swirly 1970's wall paper in the bathroom which has minimal lighting and a loud ceiling fan.
Buried among all the appliance reviews was a section on health care and the new national proposals. Tucked into the corner is the tale of two breast cancers. One woman who lives in MA with its mandatory health care was diagnosed with breast cancer, got insurance through the state, and ended up being covered and not get buried in debt. A second woman in CA had insurance when she was diagnosed but had opted for a low premium plan with a high deductible and 30% co-pay because she couldn't afford a more comprehensive plan. She is still $40,000 in debt.
This isn't to say everyone should move to Massachusetts... It kills me when I see the ads on TV for lower premium health insurance - you get what you pay for. You should carefully select your insurance by what you need and what it covers, not by the numbers. This is also another story that shows the need for better coverage options for all Americans. I have good insurance and once I hit my $7000 annual out of pocket maximum, I don't pay for a thing. I am luck. (And I will hit that maximum in another month or two - needles in the back are expensive).
Today, my back hurts. I will try to come up with a new story but not sure that I have one. I am trying desperately not to think about SIX needles in my back next week. But apparently I am thinking about them.
I am not sure I like my new work schedule. I am too busy right now. I don't have time for the important things - like contract work, gardening, and going for walks. Only four more weeks and my life with settle down again. I hope.
The coffee maker didn't work. I am suffering without but will buy a cup on my way to work. Later today I will buy a new coffee maker.
There was a mouse caught in the trap on top of the stove. Walter didn't see it. I did. I am so grossed out by the whole thing now. (Why didn't the cat catch the mouse in the first place?) Why didn't Walter see it first when he went into the kitchen to get coffee! YUCKY!
Now back to my regularly schedule blog: I was reading my new issue of Consumer Reports (I know I should go green and read it online but I like the paper issues). It was all about remodeling kitchens and bathrooms which is of great interest to me as we have a distinct shortage of cabinets, ugly linoleum (on top of at least two more layers) in the kitchen, and some lovely light blue and metallic silver swirly 1970's wall paper in the bathroom which has minimal lighting and a loud ceiling fan.
Buried among all the appliance reviews was a section on health care and the new national proposals. Tucked into the corner is the tale of two breast cancers. One woman who lives in MA with its mandatory health care was diagnosed with breast cancer, got insurance through the state, and ended up being covered and not get buried in debt. A second woman in CA had insurance when she was diagnosed but had opted for a low premium plan with a high deductible and 30% co-pay because she couldn't afford a more comprehensive plan. She is still $40,000 in debt.
This isn't to say everyone should move to Massachusetts... It kills me when I see the ads on TV for lower premium health insurance - you get what you pay for. You should carefully select your insurance by what you need and what it covers, not by the numbers. This is also another story that shows the need for better coverage options for all Americans. I have good insurance and once I hit my $7000 annual out of pocket maximum, I don't pay for a thing. I am luck. (And I will hit that maximum in another month or two - needles in the back are expensive).
Today, my back hurts. I will try to come up with a new story but not sure that I have one. I am trying desperately not to think about SIX needles in my back next week. But apparently I am thinking about them.
I am not sure I like my new work schedule. I am too busy right now. I don't have time for the important things - like contract work, gardening, and going for walks. Only four more weeks and my life with settle down again. I hope.
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