Yesterday wasn't the greatest day. Between going to the walk in clinic for my stupid tick bite and the antibiotic that upset my stomach, I wasn't as productive as I might want to be. So today I plan on attempting to be a normal person again. It shouldn't be that difficult but you never know with me.
My plans are to warp my loom for another project, meet a friend at noon to go see another friend's new garden center, and then maybe one more errand when I get home from that. Any bets on whether I can make it?
I just get very frustrated by trying to be a normal person and ending up spending a day or two or three recovering from what anyone else could do at the drop of a hat. I spend more time recovering from doing things than actually doing things. Grrr.....
Showing posts with label normal. Show all posts
Showing posts with label normal. Show all posts
Sunday, April 9, 2017
Wednesday, July 20, 2016
A Hangover
We all have had a hangover or few in our lives. Admit it, unless you are a lifetime non-drinker you have had a hangover. Alcoholic hangovers happen. We all know the feelings - dehydrated, headache, general crappy feeling.
But with RA and fibromyalgia there are other hangovers - activity hangovers. This happens when I, or anyone with these diseases, attempts to be a normal person. You act normal for one day and then spend three days paying the piper, so to speak.
Someone else wrote about activity hangovers the other day which made me feel like I am not alone. She writes about going to a party and then feeling the pain. I, on the other hand, don't even have to go to a party, I can just have a good day, try to be normal, and then spend a day in bed. If I'm lucky, its not multiple days in bed.
I am not sure what I have done for the past few days but yesterday I took a 2.5 hour nap and then slept for 8 hours last night. My pain management doctor says that sleep is good and very beneficial. It allows my body to heal. But I will still discuss it with my primary care when I see her.
Anytime I try to be normal I end up taking naps and then have bad days with 'activity' hangovers.
But with RA and fibromyalgia there are other hangovers - activity hangovers. This happens when I, or anyone with these diseases, attempts to be a normal person. You act normal for one day and then spend three days paying the piper, so to speak.
Someone else wrote about activity hangovers the other day which made me feel like I am not alone. She writes about going to a party and then feeling the pain. I, on the other hand, don't even have to go to a party, I can just have a good day, try to be normal, and then spend a day in bed. If I'm lucky, its not multiple days in bed.
I am not sure what I have done for the past few days but yesterday I took a 2.5 hour nap and then slept for 8 hours last night. My pain management doctor says that sleep is good and very beneficial. It allows my body to heal. But I will still discuss it with my primary care when I see her.
Anytime I try to be normal I end up taking naps and then have bad days with 'activity' hangovers.
Sunday, April 10, 2016
I Was Only Trying To Be Normal
Yesterday I made a big mistake: I tried to be a normal person. A nice spring Saturday is the perfect day to contemplate the garden and take care of other things around the house. We started by cleaning out the garage of gardening items and moving them under the porch. I pointed, my husband picked things up and put them down. He then set up the hammock stand so I had to try it out for a bit. (Very comfortable. I will make good use of it this summer.)
I then went into the garden and cleaned out some invasive weeds (I swear the previous owners considered dandelions to be good plants). Then I pruned away at the dead branches on the bushes and the ones which were broken in the heavy snow this winter. So far so good. I probably spent an hour in the garden.
Later I set up my loom and warped it (put the longer strands of yarn on it) so I could begin weaving. I was about to start weaving when I realized that my back hurt a lot and was starting to spasm. At that point, I decided I was done for the day and my husband cooked dinner while I lay in bed.
I thought I was okay with a pain pill and went to bed. I did not sleep well (second night in a row) and my back is still pretty sore. I am waiting for my next pain pill to kick in.
But I was only trying to be normal and do normal things. And today is not going to be a good day. Too bad I have plans for lunch out and then a museum. I will start with lunch and see how well I actually do. I probably will have to nix the museum as I am not sure how I will do standing so much. Grrrr....
I just wanted to have a normal day. Is that too much to ask?
I then went into the garden and cleaned out some invasive weeds (I swear the previous owners considered dandelions to be good plants). Then I pruned away at the dead branches on the bushes and the ones which were broken in the heavy snow this winter. So far so good. I probably spent an hour in the garden.
Later I set up my loom and warped it (put the longer strands of yarn on it) so I could begin weaving. I was about to start weaving when I realized that my back hurt a lot and was starting to spasm. At that point, I decided I was done for the day and my husband cooked dinner while I lay in bed.
I thought I was okay with a pain pill and went to bed. I did not sleep well (second night in a row) and my back is still pretty sore. I am waiting for my next pain pill to kick in.
But I was only trying to be normal and do normal things. And today is not going to be a good day. Too bad I have plans for lunch out and then a museum. I will start with lunch and see how well I actually do. I probably will have to nix the museum as I am not sure how I will do standing so much. Grrrr....
I just wanted to have a normal day. Is that too much to ask?
Thursday, June 25, 2015
Are you normal?
This is the yesterday's Prickly City. For some reason it resonated with me. And I don't believe that 'new normal' crap anyway.
Thursday, May 7, 2015
Muddling through life
My life is not that exciting. I am not that exciting a person, period. I can actually be pretty boring. I spend a fair amount of time reading, knitting or watching TV - partly because I need downtime to keep going through the week before I get too tired out. I harbor my energy until something exciting comes along.
My one exciting event that occurs regularly are doctor appointments where we play "what's wrong with Caroline now". This week, for example, I have two doctor appointments - Monday I had my rheumatologist, Friday I have the eye doctor. I think I have at least one doctor appointment next week. How exciting. Not really. Just leaning towards a bit stressful.
Unless someone is an epic tweeter or celebrity, I don't think most of us live exciting lives. This is fine with me because I just want to be a normal person who muddles through life. That's much better than being a patient, because that gets too stressful.
My one exciting event that occurs regularly are doctor appointments where we play "what's wrong with Caroline now". This week, for example, I have two doctor appointments - Monday I had my rheumatologist, Friday I have the eye doctor. I think I have at least one doctor appointment next week. How exciting. Not really. Just leaning towards a bit stressful.
Unless someone is an epic tweeter or celebrity, I don't think most of us live exciting lives. This is fine with me because I just want to be a normal person who muddles through life. That's much better than being a patient, because that gets too stressful.
Friday, March 20, 2015
Some portions normal
Yesterday I had one of those oh-so-fun medical adventures at the hospital to follow up on some symptoms. I was chatting with the technician during the test and at the end, I asked her if I was normal (for the test results) and she said 'some of it was normal'. What that means is that the doctor has to go read it and figure out what parts of it were normal, what was due to previous known issues and what is a concern.
For once, can't I just be normal and have normal test results? I think I would need to be healthy for that.
But anyway the doctor should have the results today and if I don't hear from her by next week I can call and get them. But I can also just swing by the medical records department and pick up a copy of the results next week. (I am a big fan of the medical records department since I have learned that I can go there at any time and get test results or appointment notes whenever I want.)
[I'll provide more information on the actual test and results sometime later when I know more. And its nothing that significant.}
For once, can't I just be normal and have normal test results? I think I would need to be healthy for that.
But anyway the doctor should have the results today and if I don't hear from her by next week I can call and get them. But I can also just swing by the medical records department and pick up a copy of the results next week. (I am a big fan of the medical records department since I have learned that I can go there at any time and get test results or appointment notes whenever I want.)
[I'll provide more information on the actual test and results sometime later when I know more. And its nothing that significant.}
Wednesday, March 18, 2015
Are we looking for the wrong thing?
As all cancer patients are told, after treatment you will find your 'new normal'. Basically you get to go back to being yourself again and regaining your life. But it never seems to happen.
A friend sent me this article from the New York Times on a young woman, after cancer, is looking for her old self, and being lost in transition from cancer land to her new self.
It made me think (a dangerous proposition at times). What if you are a non cancer (or non any major ailment) person, you go through life and you evolve slowly and your life changes, and its no big deal, its normal. Maybe you grow apart from some friends, gain new ones; start yoga and stop running; quit eating red meat and white sugar in order to be healthier; redecorate your house, or kept trying to lose those same damn 10 pounds. These changes happen over time but if you look at yourself from last year to this year, have you made changes? Probably. And unless you stop and think about it, you may not notice them.
With cancer (or insert any life changing diagnosis), you are yanked from your nice calm life and shifted into cancerland, riding the cancer roller coaster while holding hands with your friends, family, and oncology team who want to know about every sniffle. Then poof, you are pronounced 'cured', get a little certificate from your chemo nurses, and your doctors don't want to see you for six months, instead of every week or month.
You are supposed to find your new normal by tomorrow morning and move on with your life, go back to work full time and be healthy, instantly.
Instead, you stumble around and wonder what a new normal is. You might be depressed, anxious, and still clinging to the cancer roller coaster at every ache and pain. Slowly you stabilize, still gasping from the whirlwind you went through for the past year.
You have lost some friends or even family who went running from the word cancer, in case it was contagious, but you gained some new ones. You got some new clothes, your work schedule changed, you bought yourself a present for surviving cancer treatment (I got myself a new watch), and you are still trying to lose the same damn 20 lbs (10 from before cancer and 10 from chemo).
And what if this is the new normal? What if its harder to find because you didn't evolve slowly but were yanked from your life to cancerland and then thrown back to your life? You have to pick away at the layers of changes to see what you like and don't like and try to get a handle on everything. Some of the changes that happened may not be the ones we want to keep but we have to learn to accept them.
We can never go back to the way we were, no matter how much we try. Who was it that wrote 'you can't go home again'? Its true, especially with cancer, we can't go home again, no matter how much we try.
A friend sent me this article from the New York Times on a young woman, after cancer, is looking for her old self, and being lost in transition from cancer land to her new self.
It made me think (a dangerous proposition at times). What if you are a non cancer (or non any major ailment) person, you go through life and you evolve slowly and your life changes, and its no big deal, its normal. Maybe you grow apart from some friends, gain new ones; start yoga and stop running; quit eating red meat and white sugar in order to be healthier; redecorate your house, or kept trying to lose those same damn 10 pounds. These changes happen over time but if you look at yourself from last year to this year, have you made changes? Probably. And unless you stop and think about it, you may not notice them.
With cancer (or insert any life changing diagnosis), you are yanked from your nice calm life and shifted into cancerland, riding the cancer roller coaster while holding hands with your friends, family, and oncology team who want to know about every sniffle. Then poof, you are pronounced 'cured', get a little certificate from your chemo nurses, and your doctors don't want to see you for six months, instead of every week or month.
You are supposed to find your new normal by tomorrow morning and move on with your life, go back to work full time and be healthy, instantly.
Instead, you stumble around and wonder what a new normal is. You might be depressed, anxious, and still clinging to the cancer roller coaster at every ache and pain. Slowly you stabilize, still gasping from the whirlwind you went through for the past year.
You have lost some friends or even family who went running from the word cancer, in case it was contagious, but you gained some new ones. You got some new clothes, your work schedule changed, you bought yourself a present for surviving cancer treatment (I got myself a new watch), and you are still trying to lose the same damn 20 lbs (10 from before cancer and 10 from chemo).
And what if this is the new normal? What if its harder to find because you didn't evolve slowly but were yanked from your life to cancerland and then thrown back to your life? You have to pick away at the layers of changes to see what you like and don't like and try to get a handle on everything. Some of the changes that happened may not be the ones we want to keep but we have to learn to accept them.
We can never go back to the way we were, no matter how much we try. Who was it that wrote 'you can't go home again'? Its true, especially with cancer, we can't go home again, no matter how much we try.
Friday, February 28, 2014
On not being normal
If you find a truly 'normal' person, please let me know. No one is normal - its just a fact of life. But some people are more abnormal than others in different ways. Take me for example, I am very abnormal in the medical world. I have more medical ailments than my 80 something parents.
All those health articles with tips for healthy living usually do not apply to me. I mean I can hydrate more but I can also floss more too.
Anything that relates to jump starting your metabolism to lose weight - um, I don't have a thyroid so its not going to do anything. Or more or different exercise - sorry, between RA, Fibromyalgia, lymphedema arm, and other injuries that never seem to go away - not happening.
I watch the ads on TV about the newest gym and fitness equipment - not going to do much for me. I go to my gym for dilapidated people and a trainer helps me through bumps in the health road. The gym is running a contest this month for those who go the most often will be entered in a drawing for some big prize. I can't participate because I can't go more often. I couldn't participate in their last team challenge that was about increasing fitness. The team who increased their fitness the most won t-shirts or something - bragging rights? My goal is to maintain my fitness not increase it.
My three days a week at the gym are about my maximum. I do try to go for a walk once a week as well but that doesn't always work out.I can't just hop on my bike, sign up for a yoga or pilates class. The newest fitness apps? Doubtful.
The so called 'normal' people can lose weight by eating less and moving more. I can eat less but I can't move more.
I am not making excuses just expressing my frustration. I add medications that have that lovely weight gain feature and then I can't move more to counter act that. I try to eat less and it doesn't seem to help.
It could be compounded by that evil menopause (or in my case - chemopause) side effect of weight gain. It could be compounded by the fact that the office I work in has the tendency to bring in evil doughnuts and things like that.
I just need to accept I'm abnormal and my inner size eight is screaming to get out of the current size 12 body.
All those health articles with tips for healthy living usually do not apply to me. I mean I can hydrate more but I can also floss more too.
Anything that relates to jump starting your metabolism to lose weight - um, I don't have a thyroid so its not going to do anything. Or more or different exercise - sorry, between RA, Fibromyalgia, lymphedema arm, and other injuries that never seem to go away - not happening.
I watch the ads on TV about the newest gym and fitness equipment - not going to do much for me. I go to my gym for dilapidated people and a trainer helps me through bumps in the health road. The gym is running a contest this month for those who go the most often will be entered in a drawing for some big prize. I can't participate because I can't go more often. I couldn't participate in their last team challenge that was about increasing fitness. The team who increased their fitness the most won t-shirts or something - bragging rights? My goal is to maintain my fitness not increase it.
My three days a week at the gym are about my maximum. I do try to go for a walk once a week as well but that doesn't always work out.I can't just hop on my bike, sign up for a yoga or pilates class. The newest fitness apps? Doubtful.
The so called 'normal' people can lose weight by eating less and moving more. I can eat less but I can't move more.
I am not making excuses just expressing my frustration. I add medications that have that lovely weight gain feature and then I can't move more to counter act that. I try to eat less and it doesn't seem to help.
It could be compounded by that evil menopause (or in my case - chemopause) side effect of weight gain. It could be compounded by the fact that the office I work in has the tendency to bring in evil doughnuts and things like that.
I just need to accept I'm abnormal and my inner size eight is screaming to get out of the current size 12 body.
Saturday, February 15, 2014
Young adults and cancer
I read an article on the Atlantic about the plight of young cancer patients. First of all, please do not use the word 'plight'. A plight is defined as: a condition, state,
or situation, especially an unfavorable or unfortunate one. To me its another one of those sneaky, snarky labels with negative overtones. And the article also calls them survivors which is not my favorite term as well. A double negative for me.
Yes, life sucks after a cancer diagnosis. Particularly if you are younger and there are no others around with cancer to help you cope. I was one of them and I do not think that I had a plight. I had a life to live and figure out.
After cancer at any age, you are left with a mangled body, soul, and finances. I was luckier than most as my cancer did not require chemotherapy at age 19. My finances were covered through my parents' health insurance but I had the body and soul of a cancer patient.
Well back to the article. I did like it. I did like the information provided about the issues a young cancer patient is left with. If some one at age 20 is diagnosed with cancer, in addition to everything else, they are left with deciding what to do with their future. Maybe they were in college and were planning a career, now they have to decided can they finish their studies as previously planned and then go on with their career.
What about dating and children? Would a potential partner be turned off by their scars and medical history? Are they now damaged goods in the dating world? If you are diagnosed at age 60 which is somewhere closer to the average age at diagnosis for most, dating and children are no longer an issue.
And finances - take your average post college debt and add on top of that medical bills. Where does that leave the young adult with cancer starting their life after cancer?
Finally, how do you repair the damaged soul of a cancer patient? I can tell you it can take a very long time before you want to open up and talk about your medical crap with anyone - even a therapist. Healing is difficult, long term, and deeply scarring.
So next time you see a teenager or 20 something at the oncologists office, think about what they are going through and where they are starting the rest of their life. How do they get a to a new normal for their adulthood if they never had one in the first place?
Yes, life sucks after a cancer diagnosis. Particularly if you are younger and there are no others around with cancer to help you cope. I was one of them and I do not think that I had a plight. I had a life to live and figure out.
After cancer at any age, you are left with a mangled body, soul, and finances. I was luckier than most as my cancer did not require chemotherapy at age 19. My finances were covered through my parents' health insurance but I had the body and soul of a cancer patient.
Well back to the article. I did like it. I did like the information provided about the issues a young cancer patient is left with. If some one at age 20 is diagnosed with cancer, in addition to everything else, they are left with deciding what to do with their future. Maybe they were in college and were planning a career, now they have to decided can they finish their studies as previously planned and then go on with their career.
What about dating and children? Would a potential partner be turned off by their scars and medical history? Are they now damaged goods in the dating world? If you are diagnosed at age 60 which is somewhere closer to the average age at diagnosis for most, dating and children are no longer an issue.
And finances - take your average post college debt and add on top of that medical bills. Where does that leave the young adult with cancer starting their life after cancer?
Finally, how do you repair the damaged soul of a cancer patient? I can tell you it can take a very long time before you want to open up and talk about your medical crap with anyone - even a therapist. Healing is difficult, long term, and deeply scarring.
So next time you see a teenager or 20 something at the oncologists office, think about what they are going through and where they are starting the rest of their life. How do they get a to a new normal for their adulthood if they never had one in the first place?
Monday, January 27, 2014
It was a huge mistake
I have no idea what took over my brain/body yesterday. Before 10am had done the following:
- Reorganized the linen closet - removed everything, refolded it and put it back in an organized fashion.
- Cleaned and refilled spice bottles
- Reorganized the pantry and got rid of some really expired food.
Then I went down to the kitchen and made some cookies. While they were cooking, I cleaned up my mess and then put some spices back and realized the jars were sticky and needed refilling....
And I went to put ingredients back in the pantry and.... well you get it by now.
My husband needed a new pair of shoes. I suggested DSW and looked online to make sure they had the right shoes for him. He said I didn't need to go with him - I said 'Seriously? You thought I would pass up an opportunity to go shoe shopping?' He got what he wanted and I got a nice pair of Merrell sandals for next summer from the clearance rack.
Later in the day I paid the price with a sore back from standing and doing too many things. Crap. I took a tramadol and hung out on the couch for a few hours.
Monday, January 20, 2014
Stepping away from Dr. Google
I did it again. I asked Dr Google about symptoms. What the hell was I thinking? I had myself mentally on the way to the Emergency Room to get some help before I died overnight. Then sanity prevailed, I shut off the computer and went to bed. I am still alive. But I have increased the list of questions for my doctor on Wednesday or whatever day it is that I see her.
Why do I ask Dr Google any questions any more? I have no idea. I should know better. I mean with my medical history, blah, blah, blah, I am always a special case I think. I am not normal. I need to accept that.
But the real question is what is normal? What is this damn new normal all cancer people are supposed to achieve anyway? I am not sure Dr Google would know anything about the fictional new normal in the first place. Maybe I need Dr. Oz instead.
Crap. I'll just go to real doctors for answers to real questions instead.
Why do I ask Dr Google any questions any more? I have no idea. I should know better. I mean with my medical history, blah, blah, blah, I am always a special case I think. I am not normal. I need to accept that.
But the real question is what is normal? What is this damn new normal all cancer people are supposed to achieve anyway? I am not sure Dr Google would know anything about the fictional new normal in the first place. Maybe I need Dr. Oz instead.
Crap. I'll just go to real doctors for answers to real questions instead.
Monday, January 6, 2014
Back to Reality Monday
Its back to reality Monday around here. We had to set the alarm clock - just say we get up early and move slowly.
I haven't been to work since Christmas Eve. I meant to go in last Thursday and Friday but a tiny snowstorm prevented that. The last two weeks have been a whirlwind of holidays, house guests, cooking, chaos, movies, sleeping late, and not a single doctor appointment.
Back to reality starts this morning. I work Monday through Thursday this week for as late as I can, which might be 3pm. I have problems with a full work day and four days in a row is a stretch for me. Tomorrow I have a dentist appointment - what fun. I hope to make it to the gym three times this week. I also have to go for blood work at some point in the next few days.
Normal life returns. No more sleeping late, darn. We even got the cat to trained to request breakfast at 8am instead of 5am.
I haven't been to work since Christmas Eve. I meant to go in last Thursday and Friday but a tiny snowstorm prevented that. The last two weeks have been a whirlwind of holidays, house guests, cooking, chaos, movies, sleeping late, and not a single doctor appointment.
Back to reality starts this morning. I work Monday through Thursday this week for as late as I can, which might be 3pm. I have problems with a full work day and four days in a row is a stretch for me. Tomorrow I have a dentist appointment - what fun. I hope to make it to the gym three times this week. I also have to go for blood work at some point in the next few days.
Normal life returns. No more sleeping late, darn. We even got the cat to trained to request breakfast at 8am instead of 5am.
Monday, December 2, 2013
A Day Off!
Today is my first day off in months. Seriously. You may be thinking but she only works part time, she has lots of time off. My life is full of lots of obligations.
Yesterday was recovery day from Thanksgiving. The houseguests were gone so we had to clean up and do laundry, go to the gym and all the normal things one does. My husband also wanted to put out the holiday lights but it was a little rainy. We also have stuff to put away after accomodating five house guests for several nights.
At some point in the afternoon I realized that I had no plans for today. Well almost none. I mean I am meeting a friend for a walk at 1230. I slept until 8am. I wandered around and fed the cat who was mad because he was reduced to eating dried food which he hates.
Then I read the paper looking for that cancer cure in the health section on Mondays as I optimistically do each week, hopped on FB to catch up with my friends, read blogs, think about cyber Monday shopping and then I started on my email.
There was a message from my husband reminding me (eek!) that he is bringing teriyaki chicken wings to work tomorrow for a potluck for 30 people. To be fair he did offer to go to the grocery store for the chicken and whatever else we need. And he did tell me about it weeks ago but evidently we both forgot.
That was a quick change of plans. I could not find my decades old, much requested recipe for wings. Plan B, I called a friend of mine who also makes good wings for parties. She gave me her recipe (which is a secret - not! Take a jar of low sodium Kikkoman marinade and baste and pour over wings) which forced me to take a shower, get dressed, brush my teeth, and get to the grocery store asap (where I ran into a lady who was shopping in her PJs).
Today I now have lots to do. My friend will be here in five minutes to walk. I have to come up with something for dinner. Then once my husband gets home, there will be a few more things to do - like cook chicken wings, get the crock pot ready for tomorrow). Then there is a little pile of bedding to get put back in bags in the basement and fold five loads laundry that never made it back upstairs so I have to wait until my husband gets home.
So basically today I get to pretend I am a normal person without any health issues and just take care of life. That is very unusual.
- Doctors appointments - none this week.
- Volunteer work
- Craft fairs - almost caught up.
- A huge DOD peer review project which ended just before the holidays (and I was very honored to participate but it took a lot of time).
- Research - webinars etc for work
- Planning, shopping, and cooking for Thanksgiving
- Spending time with family
- Spending time with friends
- Cleaning, making beds, and spending time with house guests
- Not getting overtired
Yesterday was recovery day from Thanksgiving. The houseguests were gone so we had to clean up and do laundry, go to the gym and all the normal things one does. My husband also wanted to put out the holiday lights but it was a little rainy. We also have stuff to put away after accomodating five house guests for several nights.
At some point in the afternoon I realized that I had no plans for today. Well almost none. I mean I am meeting a friend for a walk at 1230. I slept until 8am. I wandered around and fed the cat who was mad because he was reduced to eating dried food which he hates.
Then I read the paper looking for that cancer cure in the health section on Mondays as I optimistically do each week, hopped on FB to catch up with my friends, read blogs, think about cyber Monday shopping and then I started on my email.
There was a message from my husband reminding me (eek!) that he is bringing teriyaki chicken wings to work tomorrow for a potluck for 30 people. To be fair he did offer to go to the grocery store for the chicken and whatever else we need. And he did tell me about it weeks ago but evidently we both forgot.
That was a quick change of plans. I could not find my decades old, much requested recipe for wings. Plan B, I called a friend of mine who also makes good wings for parties. She gave me her recipe (which is a secret - not! Take a jar of low sodium Kikkoman marinade and baste and pour over wings) which forced me to take a shower, get dressed, brush my teeth, and get to the grocery store asap (where I ran into a lady who was shopping in her PJs).
So basically today I get to pretend I am a normal person without any health issues and just take care of life. That is very unusual.
Thursday, September 19, 2013
Things cancer has taught me
I found an article written about what she learned from her mother's cancer. I can tell you its also things I have learned:
- Doctors do not have all the answers but that can be okay. I think we are taught that doctors know everything and will have the answer for every ache and pain. But with cancer we quickly learn they do not. But that can be okay. We can educate ourselves and remain satisfied with our care. Also we cannot expect the doctors to make the big decisions for us. They suggest courses of treatment but we can make our own decisions as to which ones to choose.
I have learned not to follow blindly the medical guidance but to question and discuss decisions in ways I had never thought I would. - Sometimes patients don't want to talk about their cancer or other ailment. We are people. We do not live on the live reality station called "Cancer 24/7". We go to the grocery store, we shop on line, we go out to dinner, we have friends, we do laundry. Its sort of like the pages in People magazine where real stars are caught doing normal things - like playing in the park with their children or pumping gas.
Cancer people are people too. So stop asking us how we "really" feel (with that knowing wink) every time you see us. Its annoying after a while. - There are many people can't deal with a cancer diagnosis. Those friends that brought you home made chicken noodle soup when you had the flu? Forget them, you may never see them again. The friends who stick by you are your real friends. You need to learn to make new friends who aren't scared of your diagnosis.
- People are changed by their cancer diagnosis. There is some mystery about this new normal they are supposed to achieve (that doesn't really exist) but a cancer diagnosis is basically a life changing event. Cancer people have no control over this but they really do learn about what is more important in life and how physical limitations can change them.
- Caregivers are also affected by the cancer diagnosis. They do not realize about the bonds they have to the patient and how the other person changes will affect them as well.
Sunday, June 2, 2013
Thyroid cancer facts
The Huffington Post brings us Thyroid Cancer: The Five Things You Really Need to Know. One little factoid jumps out: UP 274 percent since 1997. That would make it the fastest growing cancer in the country. But it affects a relatively insignificant number of people - around 60,000 this year - so it doesn't get a lot of attention.
Number one to know is it is not the good cancer. There is no good cancer. The term is derogatory and misleading.
Number two is that taking a pill every day is not that easy. You need to replace the vital thyroid hormone but if they give you too much you will be hyper and if they give you too little you will be hypo - too much or too little does not do the body good. And the doctors try to keep your levels low to prevent that lovely possibility of recurrence.
Number three is there is no new normal. I hate that term. After both cancers I was supposed to reach a new normal. If I was nineteen at my first normal and now I am on my third normal. What is normal for me?
Number four is that oh so subtle scar across the front of your neck. It fades with time but it never goes away. Stop staring!
Finally, you are not alone with thyroid cancer, you just have to look a little further to find support because it is still rare. I can count on my fingers the number of people I know with thyroid cancer. This includes the pharmacist at the local Walgreens, Ria the painter, Yumi from Japan, Lesley in Texas, the other woman I cant remember her name who also had both breast and thyroid cancer, and a few others online. (I know I am forgetting someone but after cancer twice the brain is the first to go.) But I probably know hundreds of women with breast cancer - literally.
So if you know someone with thyroid cancer send them to thyca.org or bitemecancer.org.
Number one to know is it is not the good cancer. There is no good cancer. The term is derogatory and misleading.
Number two is that taking a pill every day is not that easy. You need to replace the vital thyroid hormone but if they give you too much you will be hyper and if they give you too little you will be hypo - too much or too little does not do the body good. And the doctors try to keep your levels low to prevent that lovely possibility of recurrence.
Number three is there is no new normal. I hate that term. After both cancers I was supposed to reach a new normal. If I was nineteen at my first normal and now I am on my third normal. What is normal for me?
Number four is that oh so subtle scar across the front of your neck. It fades with time but it never goes away. Stop staring!
Finally, you are not alone with thyroid cancer, you just have to look a little further to find support because it is still rare. I can count on my fingers the number of people I know with thyroid cancer. This includes the pharmacist at the local Walgreens, Ria the painter, Yumi from Japan, Lesley in Texas, the other woman I cant remember her name who also had both breast and thyroid cancer, and a few others online. (I know I am forgetting someone but after cancer twice the brain is the first to go.) But I probably know hundreds of women with breast cancer - literally.
So if you know someone with thyroid cancer send them to thyca.org or bitemecancer.org.
Sunday, August 5, 2012
I didn't blog yesterday
I meant to. I started a post but wasn't inspired or inspiring so I gave up said I shall have a blogless day.
Today I am up early (thanks to the cat once again) and have a lot to do - after I read the Sunday paper. I have to get some work done because I didnt yesterday and tomorrow I go to my other job, have a meeting, and then a phone call.
We have big plans for this afternoon. We have expensive tickets to the Boston Red Sox. Expensive meaning I would never pay that much but I won them in a raffle so they were free. They are Pavilion Box which means they are way up high, in the bright 90 degree sun but we are hoping for a breeze. Then after the game we have a birthday party to go to.
I like having a normal life sometimes where my medical crap doesn't take center stage and prevent me from doing fun things. Sometimes I realize I don't have much of a normal life when I stay home because something hurts or I am not happy about medical news. It can be a constant drain.
But my goal today is to be a normal person, have fun, and see old friends.
Today I am up early (thanks to the cat once again) and have a lot to do - after I read the Sunday paper. I have to get some work done because I didnt yesterday and tomorrow I go to my other job, have a meeting, and then a phone call.
We have big plans for this afternoon. We have expensive tickets to the Boston Red Sox. Expensive meaning I would never pay that much but I won them in a raffle so they were free. They are Pavilion Box which means they are way up high, in the bright 90 degree sun but we are hoping for a breeze. Then after the game we have a birthday party to go to.
I like having a normal life sometimes where my medical crap doesn't take center stage and prevent me from doing fun things. Sometimes I realize I don't have much of a normal life when I stay home because something hurts or I am not happy about medical news. It can be a constant drain.
But my goal today is to be a normal person, have fun, and see old friends.
Friday, May 4, 2012
What is wrong with these people?
Allow me to preface this by saying I am all for treating people with medical ailments normally. A friend's son is going to have scoliosis surgery shortly and my advice to her was 'treat him normally, he still should have to do homework, set the table, etc'. This is very important. They are human beings with an icky diagnosis. They shouldn't get to bend rules because of it. (I have another friend who was pulled over for speeding on the way to our support group. She burst into tears and told the officer she was rushing to get to her breast cancer support group and he just gave her back her license and registration and told her to slow down.)
But as a rule, treat people who have ailments normally. Just because I had cancer twice doesn't mean I get to cut in line at the movies or skip paying taxes (but I would consider it if it was legal). Keep treating me normally gives me the emotional support in that I am normal and I will still be here.
Sometimes there needs to be an exception or two. This woman is trying to finish her Master's degree and will finish her last credits in July 2012. She would like to participate in the graduation ceremony in May 2012. Chestnut Hill College is refusing this. Their policy is that, unlike most other colleges, students can't participate in the graduation ceremony if they have any outstanding credits to complete.The problem is she has an incurable form of Hodgkin's Lymphoma and there is a good chance she won't be here in June 2013.
Hello, what is wrong with you people? Do you need a smack in the head to get your brains in gear? Her oncologist has sent in a note as well as other supporters. This is a lifelong dream. She doesn't have that much time left. Your stupid rules are taking away one of the few dreams she has that she might be able to attain in her shortened life. Sometimes exceptions do need to be made and you stupid people are too stuck upon your policy to recognize when being nice could go along way. And your policy isn't even in line with most other colleges. So maybe its time to rethink this one.
This student has accepted this but she hopes the school will change the policy for others like her in the future. So please wake up and smell the coffee here.
But as a rule, treat people who have ailments normally. Just because I had cancer twice doesn't mean I get to cut in line at the movies or skip paying taxes (but I would consider it if it was legal). Keep treating me normally gives me the emotional support in that I am normal and I will still be here.
Sometimes there needs to be an exception or two. This woman is trying to finish her Master's degree and will finish her last credits in July 2012. She would like to participate in the graduation ceremony in May 2012. Chestnut Hill College is refusing this. Their policy is that, unlike most other colleges, students can't participate in the graduation ceremony if they have any outstanding credits to complete.The problem is she has an incurable form of Hodgkin's Lymphoma and there is a good chance she won't be here in June 2013.
Hello, what is wrong with you people? Do you need a smack in the head to get your brains in gear? Her oncologist has sent in a note as well as other supporters. This is a lifelong dream. She doesn't have that much time left. Your stupid rules are taking away one of the few dreams she has that she might be able to attain in her shortened life. Sometimes exceptions do need to be made and you stupid people are too stuck upon your policy to recognize when being nice could go along way. And your policy isn't even in line with most other colleges. So maybe its time to rethink this one.
This student has accepted this but she hopes the school will change the policy for others like her in the future. So please wake up and smell the coffee here.
Friday, March 2, 2012
What is this new normal business?
You get cancer, have all sorts of fun medical adventures, and then are supposed to reach your new 'normal'. Isn't that some sort of oxymoron? I mean normal is defined as:
So if you were normal before (not that any of us are really normal), you are supposed to become normal again but a different kind of normal that is now your new normal. Does this mean I have to consider myself abnormal before? How many times do you get to have a new normal? Am I now in my third normal since I had two cancer diagnoses?
Or is this a lot of hooey designed to make us feel better? Life is full of life changes - everything from moving, changing jobs, getting married, having children, icky (for the lack of a better word) medical diagnoses - that we change and cope. We are constantly evolving and adapting to the changes in our lives. Darwinism lives as we adapt to the bumps in the road of life. So where is this 'normal' they (and that would be the mysterious them) tell us we should have? Are we supposed to pick a point in our lives and say 'I was normal then'?
These life changing events are just what that says 'life changing' you can't go back and undo them. 9/11 changed the country and can never be undone just as cancer changes individuals. Is the goal of finding a new normal unattainable? When do you know you have reached your new normal? Is there a little sign in the road of life? I say skip this normal business and focus on adapting through changes.
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Or is this a lot of hooey designed to make us feel better? Life is full of life changes - everything from moving, changing jobs, getting married, having children, icky (for the lack of a better word) medical diagnoses - that we change and cope. We are constantly evolving and adapting to the changes in our lives. Darwinism lives as we adapt to the bumps in the road of life. So where is this 'normal' they (and that would be the mysterious them) tell us we should have? Are we supposed to pick a point in our lives and say 'I was normal then'?
These life changing events are just what that says 'life changing' you can't go back and undo them. 9/11 changed the country and can never be undone just as cancer changes individuals. Is the goal of finding a new normal unattainable? When do you know you have reached your new normal? Is there a little sign in the road of life? I say skip this normal business and focus on adapting through changes.
Thursday, October 7, 2010
What is the new normal?
After cancer, they tell you that you will have to reach a new normal, you aren't going back to the way you were. What was normal for you before is not going to be normal any more. You body has been subjected to one or more surgeries. Maybe some radiation and chemotherapy. You may have less energy than before too.
Your stress level went through the roof. You are now living in the land of 'what if it comes back'. Which is a little stressful in itself. You have many more doctor appointments that before and each one has its accompanying stress pull. For the past three years, I have had more than 60 appointments each year.
Physically you are not the same either. You probably have a new hair style as your hair grows out of its chemo-cut. Weight gain is not that unusual either. New aches and pains are not uncommon as chemo has some fun side effects. And the surgical scars...
You are trying to balance all the advice and suggestions. Eat healthier. Eat lots of plants. Eat soy, no don't eat soy, eat soy, no don't. You try to exercise more. You cut out all the things you like - alcohol, chocolate, dessert, fast food. All are steps to prevent the r-word (recurrence) - you are doing everything you can to prevent it - but is that enough? Is anything enough?
So what is the new normal? I'm not entirely sure. First I need to add that in my case, I have had several other medical issues of the non-malignant kind since the end of my cancer treatment - gall bladder surgery, bad back, ugly thyroid ultrasound, touch of lymphedema, etc. My back is an ever worsening adventure which has no cure, just lots of pain. Also, my husband had his own fun little cancer adventure last winter which added to my stress level.
However, somehow over recent months I feel my life has settled down to a level where I can cope for the most part. It helps that now I seem to go to the doctor once or twice a month instead of once or twice a month. It may be partly due to the medication I am on but I'm okay with that. If the medication is what it takes to reach a new normal, I can deal. Does it mean I need to take it for a long time? Possibly. But I also take back and thyroid medication for life. A friend of mine phrased it as 'better living through chemistry'.
Is this normal? I am not sure but its liveable and that's the important part.
Your stress level went through the roof. You are now living in the land of 'what if it comes back'. Which is a little stressful in itself. You have many more doctor appointments that before and each one has its accompanying stress pull. For the past three years, I have had more than 60 appointments each year.
Physically you are not the same either. You probably have a new hair style as your hair grows out of its chemo-cut. Weight gain is not that unusual either. New aches and pains are not uncommon as chemo has some fun side effects. And the surgical scars...
You are trying to balance all the advice and suggestions. Eat healthier. Eat lots of plants. Eat soy, no don't eat soy, eat soy, no don't. You try to exercise more. You cut out all the things you like - alcohol, chocolate, dessert, fast food. All are steps to prevent the r-word (recurrence) - you are doing everything you can to prevent it - but is that enough? Is anything enough?
So what is the new normal? I'm not entirely sure. First I need to add that in my case, I have had several other medical issues of the non-malignant kind since the end of my cancer treatment - gall bladder surgery, bad back, ugly thyroid ultrasound, touch of lymphedema, etc. My back is an ever worsening adventure which has no cure, just lots of pain. Also, my husband had his own fun little cancer adventure last winter which added to my stress level.
However, somehow over recent months I feel my life has settled down to a level where I can cope for the most part. It helps that now I seem to go to the doctor once or twice a month instead of once or twice a month. It may be partly due to the medication I am on but I'm okay with that. If the medication is what it takes to reach a new normal, I can deal. Does it mean I need to take it for a long time? Possibly. But I also take back and thyroid medication for life. A friend of mine phrased it as 'better living through chemistry'.
Is this normal? I am not sure but its liveable and that's the important part.
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