Yesterday I had a fairly enjoyable day. Well not perfect but pretty darn good. Wednesday night was methotrexate injection night, where I keep my eyes closed and my husband injects me. We used to do this on Wednesday mornings but have found that I feel nauseous and pretty awful for a few hours so we decided let's switch it to evenings so I won't be trying to work through it.
So much for that idea as I spent the evening nauseous and woke up at 1130 at night running to the bathroom. I didn't throw up but I felt like I would. Then I slept off and on for the rest of the night. In the morning I was a wreck so I actually called in sick and spent the morning at home. I spent most of the morning feeling nauseous so I passed the time knitting on the living room couch (supported by the cat) with periodic forays out to the garden to do a little weeding. I had a banana and toast for breakfast so as not to tempt fate. Eventually I ate a some lunch and felt better.
My afternoon ended with a dentist appointment which was immediately counterbalanced by a mani/pedicure. So to counteract the news that I need some periodontal work, I have fuschia toe nails.
But I digress. I feel rested and got plenty of sleep last night. That is a taste of my new life I can get used to.
What to eat
I am confused. In an age where the latest trend is to eat healthier food, buy local, and all that, I really do try.
My first motivator is the Mediterranean diet because it is supposed to be healthy and because I like the food. This means eating plant based food like grains, fruits and vegetables, less butter and more olive oil, less red meat and more fish and poultry. I can do this. Except my husband likes steak so when we eat red meat, I have gotten us smaller portions. This works pretty well for us.
Then there is the fibromyalgia diet which is lots of plant based food and lean protein which sounds pretty similar so that should work as well.
But then there is the arthritis diet which says lots of beans particularly ones with antioxidants like red beans, small red kidney beans, and pinto beans as well as black beans and garbanzos. It also says to avoid the nightshade family to reduce inflammation. Night shade vegetables are tomatoes, eggplant, red bell peppers and potatoes. Some studies have shown them to contribute to increased pain in arthritis patients but this is not yet confirmed.
What is very common in the Mediterranean diet? Tomatoes, egg plant, red bell peppers and potatoes. This clearly leads to a conflict.
Also, there is the breast cancer - soy link. I hate tofu so I opt to skip it. I also avoid soy supplemented food and edamame because every time I turn around, the proverbial them change their mind if it is okay for breast cancer people to eat or not.
So if I take all this advice and summarize it. More chicken and fish, more beans and hummus. Less red peppers, tomatoes, eggplant, and potatoes which could lead to a boring Mediterranean diet. Skip the tofu as well.
My first motivator is the Mediterranean diet because it is supposed to be healthy and because I like the food. This means eating plant based food like grains, fruits and vegetables, less butter and more olive oil, less red meat and more fish and poultry. I can do this. Except my husband likes steak so when we eat red meat, I have gotten us smaller portions. This works pretty well for us.
Then there is the fibromyalgia diet which is lots of plant based food and lean protein which sounds pretty similar so that should work as well.
But then there is the arthritis diet which says lots of beans particularly ones with antioxidants like red beans, small red kidney beans, and pinto beans as well as black beans and garbanzos. It also says to avoid the nightshade family to reduce inflammation. Night shade vegetables are tomatoes, eggplant, red bell peppers and potatoes. Some studies have shown them to contribute to increased pain in arthritis patients but this is not yet confirmed.
What is very common in the Mediterranean diet? Tomatoes, egg plant, red bell peppers and potatoes. This clearly leads to a conflict.
Also, there is the breast cancer - soy link. I hate tofu so I opt to skip it. I also avoid soy supplemented food and edamame because every time I turn around, the proverbial them change their mind if it is okay for breast cancer people to eat or not.
So if I take all this advice and summarize it. More chicken and fish, more beans and hummus. Less red peppers, tomatoes, eggplant, and potatoes which could lead to a boring Mediterranean diet. Skip the tofu as well.
We knew this would happen
Not to make light of an other's misfortunes but I think that we knew this would happen. Komen (for the Cure) has clearly been on a downturn since the mishandling of the Planned Parenthood epic in 2012. One of their main fundraising efforts has been their three day walks. There used to be 14 around the country. Starting in 2014, there will be 7.
The Three Days are cancelled in Boston, Arizona, Cleveland, Chicago, Tampa, San Francisco, and Washington, DC. This will leave only Atlanta, Dallas/Ft Worth, Michigan, San Diego, Twin Cities, and Seattle.
And example of their recent numbers is here:
"On May 11, thousands of breast cancer survivors and their supporters gathered on the Mall in Washington, D.C., for the annual Susan G. Komen Global Race for the Cure, but attendance at the charity’s signature fund-raising event was down for a second consecutive year.
About 21,000 people registered for that race, down from 27,000 last year and nearly 40,000 in 2011. Fund-raising has also been down: The race generated $5 million in donations in 2011, according to Komen spokeswoman Andrea Rader, but generated $2 million last year."
What does this tell us? Large non profits are increasingly scrutinized by the American public on many levels - what they do with their money, what they support, and the amount paid to their executives.
If I was a leader at Komen I would clearly be taking steps to save the organization as they have clearly been forced to cut their fundraising activities in half. I hope they see what last year's mistake has cost them.
The Three Days are cancelled in Boston, Arizona, Cleveland, Chicago, Tampa, San Francisco, and Washington, DC. This will leave only Atlanta, Dallas/Ft Worth, Michigan, San Diego, Twin Cities, and Seattle.
And example of their recent numbers is here:
"On May 11, thousands of breast cancer survivors and their supporters gathered on the Mall in Washington, D.C., for the annual Susan G. Komen Global Race for the Cure, but attendance at the charity’s signature fund-raising event was down for a second consecutive year.
About 21,000 people registered for that race, down from 27,000 last year and nearly 40,000 in 2011. Fund-raising has also been down: The race generated $5 million in donations in 2011, according to Komen spokeswoman Andrea Rader, but generated $2 million last year."
What does this tell us? Large non profits are increasingly scrutinized by the American public on many levels - what they do with their money, what they support, and the amount paid to their executives.
If I was a leader at Komen I would clearly be taking steps to save the organization as they have clearly been forced to cut their fundraising activities in half. I hope they see what last year's mistake has cost them.
Balancing
As I now am happily employed at one job instead of two and have cut back at some volunteer efforts, I feel I am achieving some kind of work/life/health balance where I might be able to get enough rest as well as cash flow and not feel as if I'm running from one thing to another all day long.
My other job is almost at its end. I do need to tie up some last loose ends but that's it. I think they think I am leaving to work full time at another job but I'm not. Its because I have to cut back. This is very frustrating to me. But now its over.
I will miss parts of that job but life is all about balance. And my health is taking more of its share in this work/life/health balance than previously. I work my three day work weeks and then feel exhausted and need more rest.
I hope that my RA will get under control and I get more energy back. That would be nice. I go back to that doctor in about a month or so and will see how I am doing then. But for now I will have some sort of work/life/health balance (even if not mentally balanced).
My other job is almost at its end. I do need to tie up some last loose ends but that's it. I think they think I am leaving to work full time at another job but I'm not. Its because I have to cut back. This is very frustrating to me. But now its over.
I will miss parts of that job but life is all about balance. And my health is taking more of its share in this work/life/health balance than previously. I work my three day work weeks and then feel exhausted and need more rest.
I hope that my RA will get under control and I get more energy back. That would be nice. I go back to that doctor in about a month or so and will see how I am doing then. But for now I will have some sort of work/life/health balance (even if not mentally balanced).
I am way behind
Yesterday was National Cancer Survivors Day. How did I miss it? I should get to celebrate twice or something. But I wish it didn't have the S word in the title. How about National People Living With Cancer Day?
Also, this weekend was the ASCO conference. I usually read what is announced each day and now have to catch up.
Here are a few details so far:
Also, this weekend was the ASCO conference. I usually read what is announced each day and now have to catch up.
Here are a few details so far:
- Extending Tamoxifen to ten years from five years reduces risk of reccurence by 15%
- Sorafenib Shows Benefit in Radioactive Iodine-Refractory Differentiated Thyroid Cancer
- Surveillance in Breast Cancer Survivors: First Do No Harm - which discusses over testing after treatment ends.
- Innovations in Breast Cancer Drug Development: The Neoadjuvant Breast Cancer Workshop
- First the news summaries listed here: http://chicago2013.asco.org/daily-news/latest?field_cancer_topics_tid=All&field_daily_news_article_categor_tid=All
- Next read the ASCO Daily News which are at the very bottom left of this page: http://chicago2013.asco.org/daily-news
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.
Some clarification here
I got some feedback yesterday that my blog about the patient who didn't get a needed scan in time now has weeks to live. I said the patient needed to do more and be proactive in their health care. Some one said that we can't blame the patient because we depend on our doctors.
What I see of the issues are the following:
The woman complained of severe headaches and pain down her arm. Her doctor told her it was arthritis and treated it as such. She also complained several other times to nurses and was told she didn't need scans. If the diagnosis didn't resolve the problem, more testing should have been done to get to the root of the problem. This is where the patient could have stepped up.
Also it sounded like she was dealing with nurses often - did they know the extent of her medical history?
And if this doctor wasn't doing anything to help her, she could have gone to another doctor which it did not sound like she did. I mean she did say she had bowel surgery which meant she was going to a gastrointestinal doctor, who wouldn't have been as concerned about something not relating to digestion. What about a neurologist or some one like that?
I don't know all the details here because I am not that patient but it would seem to me in the modern medical world that this patient slipped through the cracks and her complaints were ignored. This is where the patient should have spoken up more.
Yes we depend on our doctors to tell us what is wrong with us and treat us. We depend on them and rely on them. Some times we put our head down and just slog on through things. But need to stick our head up occasionally and see if we are happy with how we are feeling or is ti time to take another tack.
What I see of the issues are the following:
The woman complained of severe headaches and pain down her arm. Her doctor told her it was arthritis and treated it as such. She also complained several other times to nurses and was told she didn't need scans. If the diagnosis didn't resolve the problem, more testing should have been done to get to the root of the problem. This is where the patient could have stepped up.
Also it sounded like she was dealing with nurses often - did they know the extent of her medical history?
And if this doctor wasn't doing anything to help her, she could have gone to another doctor which it did not sound like she did. I mean she did say she had bowel surgery which meant she was going to a gastrointestinal doctor, who wouldn't have been as concerned about something not relating to digestion. What about a neurologist or some one like that?
I don't know all the details here because I am not that patient but it would seem to me in the modern medical world that this patient slipped through the cracks and her complaints were ignored. This is where the patient should have spoken up more.
Yes we depend on our doctors to tell us what is wrong with us and treat us. We depend on them and rely on them. Some times we put our head down and just slog on through things. But need to stick our head up occasionally and see if we are happy with how we are feeling or is ti time to take another tack.
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