Yesterday was not one of the good days. No, I did not have a health catastrophe. But I had a couple of emotional/stress related catastrophes. To recover I went to the gym and destress by abusing my body on the stationary bike for a while. (Until my phone started ringing and I had to take the call because of other stress issues.)
And other stress happened. But I took a deep breath, had a glass of wine with dinner (a very yummy meal as we got some acorn fed pork from a friend). With dinner I made an apple chutney with cloves and a sweet potato hash. Cooking helps destress me. The fancier the meal the more stressed I am.
I hope today is a better day. I am staying home because of another tiny snow storm. In the meantime, I am sitting up in bed and hanging out with Boots. That should help my stress too. Boots is always relaxed.
Wednesday, January 17, 2018
Monday, January 15, 2018
Okay I lied
I did say I would blog more often and get back on regular blogging as part of destressing. But it looks like I lied. But I have a good reason.
My husband and I went away for a few days to take a real break. Luckily (if you want to look at it that way) the cell phone coverage was awful so we couldn't get any calls or texts from home.
We needed a break. I got to walk on the beach (okay it was in Maine and was a bit chilly) three times. We did some shopping. We explored. We ate out. We were lazy. We were on the ocean.
It was very nice. Now I can get back to blogging regularly.
My husband and I went away for a few days to take a real break. Luckily (if you want to look at it that way) the cell phone coverage was awful so we couldn't get any calls or texts from home.
We needed a break. I got to walk on the beach (okay it was in Maine and was a bit chilly) three times. We did some shopping. We explored. We ate out. We were lazy. We were on the ocean.
It was very nice. Now I can get back to blogging regularly.
Thursday, January 11, 2018
Your Brain On Cancer
Once you enter cancerland, your brain takes detours all the time. Where do these detours go? BAD PLACES!
"Is that a zit? No, of course not. Its a tumor. Must be skin cancer."
"A headache? No, a brain tumor. Dead in 3 months."
"Is that a swollen lymph node? Quick, leukemia or lymphoma, which one?"
As you can easily see you brain with cancer goes down the wrong roads. Usually in the middle of the night. Or when your are stuck in traffic by yourself.
You start making little deals with yourself. "I'll wait a month and see if its still a problem. No, a month? No three weeks. Wait, two weeks. Maybe ten days. Do I have any blood work coming up? Maybe that will tell me something."
"Wait, am I a lunatic? Actually thinking like this will turn me into a lunatic!"
The big thing is to learn to control your brain so it doesn't take all the detours. That is the really hard part of living with cancer. Your brain develops a this ability to drive you crazy and lead you into bad places. You need to get it under control so you can keep your sanity and avoid things like depression and anxiety.
Its a lifelong problem. It will never go away. Such is cancerland.
"Is that a zit? No, of course not. Its a tumor. Must be skin cancer."
"A headache? No, a brain tumor. Dead in 3 months."
"Is that a swollen lymph node? Quick, leukemia or lymphoma, which one?"
As you can easily see you brain with cancer goes down the wrong roads. Usually in the middle of the night. Or when your are stuck in traffic by yourself.
You start making little deals with yourself. "I'll wait a month and see if its still a problem. No, a month? No three weeks. Wait, two weeks. Maybe ten days. Do I have any blood work coming up? Maybe that will tell me something."
"Wait, am I a lunatic? Actually thinking like this will turn me into a lunatic!"
The big thing is to learn to control your brain so it doesn't take all the detours. That is the really hard part of living with cancer. Your brain develops a this ability to drive you crazy and lead you into bad places. You need to get it under control so you can keep your sanity and avoid things like depression and anxiety.
Its a lifelong problem. It will never go away. Such is cancerland.
Wednesday, January 10, 2018
Running On Empty
Today I am running on empty. If I had any energy, I would be on my way to the gym. I am not moving yet. Well I had some breakfast but am back in bed. I will meet a friend for lunch later today and then possibly drag myself off to the gym after.
I am exhausted.
Maybe I should go to the doctor or something. No wait, I had three appointments on Monday. And I see my rheumatologist next week. I can nap every day between now and then.
These days I am good for about 10 hours a day total. If I lie down each afternoon for a couple of hours, I can then stay up for dinner and go to bed early.
Talk about lack of quality of life.
---------------------
Ignore everything I just wrote. I am whining. I am tired. Maybe I need a morning nap after 9.5 hours of sleep. Crap.
I am exhausted.
Maybe I should go to the doctor or something. No wait, I had three appointments on Monday. And I see my rheumatologist next week. I can nap every day between now and then.
These days I am good for about 10 hours a day total. If I lie down each afternoon for a couple of hours, I can then stay up for dinner and go to bed early.
Talk about lack of quality of life.
---------------------
Ignore everything I just wrote. I am whining. I am tired. Maybe I need a morning nap after 9.5 hours of sleep. Crap.
Tuesday, January 9, 2018
Until I Drop
Every day that I go out the door (which is not everyday), I go until I drop or that is what it feels like.
Yesterday is an example: three doctor appointments at two different places 45 minutes apart, two stops at stores, one stop at my parents for 15 minutes, and then home. I was so tired by the time I got home, I was barely standing. I took the easy way out and got in bed for the next two hours.
At my last stop, at the podiatrist that I have been going to since last summer, I ran into a friend who worked there. I knew she worked in a medical office but I didn't know she worked in that one. She only works two days a week which explains why I haven't run into her before. When I told her my schedule, she said something to the effect of that I must be exhausted after being out for so long. She knows me.
Today I am still in bed and don't have to go any further than the laundry room and the mailbox. I will enjoy myself. And I might need a nap. I can get exhausted staying home.
Yesterday is an example: three doctor appointments at two different places 45 minutes apart, two stops at stores, one stop at my parents for 15 minutes, and then home. I was so tired by the time I got home, I was barely standing. I took the easy way out and got in bed for the next two hours.
At my last stop, at the podiatrist that I have been going to since last summer, I ran into a friend who worked there. I knew she worked in a medical office but I didn't know she worked in that one. She only works two days a week which explains why I haven't run into her before. When I told her my schedule, she said something to the effect of that I must be exhausted after being out for so long. She knows me.
Today I am still in bed and don't have to go any further than the laundry room and the mailbox. I will enjoy myself. And I might need a nap. I can get exhausted staying home.
Monday, January 8, 2018
Back On The Fitness Bandwagon
Finally, I am back on the fitness bandwagon. This week is my first full week of three days at the gym. Finally. I am excited, but exhausted.
According to my card at the gym, I had an extended absence from October 4 to December 20. I was so excited to go back. But have forced myself to take it easy. With the help of the physical therapist at the gym, I cut back my exercise plan significantly. I cut down on the weight I use, the time I do cardio, and added a number of specific 'knee strengthening' exercises. I also have spent three weeks only going twice a week.
Its killing me.
Every time I leave the gym, I am exhausted. and I come home and lie down for an hour or so to recover. This is more than in the past. I was so tired yesterday when I got home from the gym, I tried to knit while exhausted and ended up having to pull it all out again and start over.
I guess I got out of shape.
This is a big week. First of all its my first week of going to the gym three times as opposed to twice a week for the past three weeks. Second, I have my three month follow up with the surgeon this morning. I just hope he doesn't tell me to slow down
I feel significantly flabbier these days because I spent three months sitting around. This has put me out of shape. With RA and fibromyalgia I can't just push myself like healthy people. I am going to have to take it slow for a while. Maybe in six months I will be back at my old workout routine and not as exhausted as I have been.
According to my card at the gym, I had an extended absence from October 4 to December 20. I was so excited to go back. But have forced myself to take it easy. With the help of the physical therapist at the gym, I cut back my exercise plan significantly. I cut down on the weight I use, the time I do cardio, and added a number of specific 'knee strengthening' exercises. I also have spent three weeks only going twice a week.
Its killing me.
Every time I leave the gym, I am exhausted. and I come home and lie down for an hour or so to recover. This is more than in the past. I was so tired yesterday when I got home from the gym, I tried to knit while exhausted and ended up having to pull it all out again and start over.
I guess I got out of shape.
This is a big week. First of all its my first week of going to the gym three times as opposed to twice a week for the past three weeks. Second, I have my three month follow up with the surgeon this morning. I just hope he doesn't tell me to slow down
I feel significantly flabbier these days because I spent three months sitting around. This has put me out of shape. With RA and fibromyalgia I can't just push myself like healthy people. I am going to have to take it slow for a while. Maybe in six months I will be back at my old workout routine and not as exhausted as I have been.
Sunday, January 7, 2018
Cancer Cure?
No there is not a cancer cure. We need to keep remembering that. We are told by our doctors that there is no evidence of disease or some thing along those lines - which just boils down to "we are not capable of finding it yet". If your doctor tells you that you are cured, please find a new one asap.
In this day and age should there be a new definition of cured of cancer? I'm not sure. I have friends who tell me they are cured. I try to figure out what they are talking about. Seriously, where did this cured business come from? I want to question their position on this but in some ways do not want to know.
"Upon completion of treatment, one of only two scenarios exist. Either all cancer cells are annihilated by surgery, chemo or radiation never to return or some of the little cells escaped and plan to mount a future counteroffensive. The trouble is that technical limitations thwart our ability to measure small volumes of cancer cells. Blood work, imaging like PET scans and CT scans or physical exams are simply too crude at present to predict, always and accurately, whether cancer will recur. And so, like Schrodinger’s cat experiment, a quiet cat placed in an opaque box is assumed to be both alive and dead at the same time. You just don’t know. Likewise, cancer cells after treatment are assumed dead, but we go on testing to discover any signs that the disease may have returned. CT scans. Blood work. Physical exams. Ad nauseum. Only time will tell."
So as good patients we go to our doctors for years and do what they say. But we know we are not cured.
"A couple caveats here. First, we generally observe patients for five years. After that point, for most diseases, the curves are flat, meaning that we anticipate few further cancer deaths. Thus, the doctor’s five-year survival is equivalent to a layperson’s “cure.” So when docs uncomfortably utter the word “cure," it’s usually after five years from diagnosis. At that time, we generally feel confident that the disease is gone. Secondly, these are dry boring statistical models. So we know where the group will plot out. Each individual patient, however, that’s another story.
Early on, we don’t know, with any certainty, who will be cured. That’s where the term “remission” comes in: when there’s no sign of any cancer, but it is still too early to tell. When the clock strikes 12 on the fifth anniversary of your diagnosis, voila, “remission” magically transforms to “cure.” Sort of like a reverse Cinderella moment.
And thirdly, and perhaps most importantly in a time of rapidly evolving treatments, all published data is at least five years out of date because you have to wait that that long to collect the data following the treatment performed. Treatment options change a lot during five years."
"Finally, outliers exist. Unfortunately, patients with early-stage disease can recur and die and those with late-stage disease can outlive their predicted expiration date."
In this day and age should there be a new definition of cured of cancer? I'm not sure. I have friends who tell me they are cured. I try to figure out what they are talking about. Seriously, where did this cured business come from? I want to question their position on this but in some ways do not want to know.
"Upon completion of treatment, one of only two scenarios exist. Either all cancer cells are annihilated by surgery, chemo or radiation never to return or some of the little cells escaped and plan to mount a future counteroffensive. The trouble is that technical limitations thwart our ability to measure small volumes of cancer cells. Blood work, imaging like PET scans and CT scans or physical exams are simply too crude at present to predict, always and accurately, whether cancer will recur. And so, like Schrodinger’s cat experiment, a quiet cat placed in an opaque box is assumed to be both alive and dead at the same time. You just don’t know. Likewise, cancer cells after treatment are assumed dead, but we go on testing to discover any signs that the disease may have returned. CT scans. Blood work. Physical exams. Ad nauseum. Only time will tell."
So as good patients we go to our doctors for years and do what they say. But we know we are not cured.
"A couple caveats here. First, we generally observe patients for five years. After that point, for most diseases, the curves are flat, meaning that we anticipate few further cancer deaths. Thus, the doctor’s five-year survival is equivalent to a layperson’s “cure.” So when docs uncomfortably utter the word “cure," it’s usually after five years from diagnosis. At that time, we generally feel confident that the disease is gone. Secondly, these are dry boring statistical models. So we know where the group will plot out. Each individual patient, however, that’s another story.
Early on, we don’t know, with any certainty, who will be cured. That’s where the term “remission” comes in: when there’s no sign of any cancer, but it is still too early to tell. When the clock strikes 12 on the fifth anniversary of your diagnosis, voila, “remission” magically transforms to “cure.” Sort of like a reverse Cinderella moment.
And thirdly, and perhaps most importantly in a time of rapidly evolving treatments, all published data is at least five years out of date because you have to wait that that long to collect the data following the treatment performed. Treatment options change a lot during five years."
Five years out are we cured? No we are not. So we stop going to our doctors and promise to come back if anything changes.
And even though we know all of the above, there are still a few more caveats.
"Finally, outliers exist. Unfortunately, patients with early-stage disease can recur and die and those with late-stage disease can outlive their predicted expiration date."
So what do we do? We are supposed to live life as if we are cured. We are supposed to like our new normal. But we are not cured and at this point have no chance of being cured. We can just be happy with remission free survival and no evidence of disease. But not a cure.
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