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A few words about Komen

1/30/2015

A few facts about Komen: "The Susan G. Komen for the Cure charity defines its mission as finding a cure for breast cancer. In recent years, however, it has cut by nearly half the proportion of fund-raising dollars it spends on grants to scientists working to understand the causes and develop effective new treatments for the disease.

"While the absolute dollar amount of those grants has steadily grown, it has not kept pace with the surge in donations Komen has received, a Reuters analysis of the group's financial statements shows."

"In 2011, the foundation spent 15 percent, or $63 million, of its donations on research awards that fund studies on everything from hard-core molecular biology to the quality of breast-cancer care for Medicaid patients.

"That proportion was down from 17 percent in 2009 and 2010. In 2008, that percentage reached 29 percent of donations. The annual financial statements cover April 1 through March 31." www.reuters.com/…/us-usa-healthcare-komen-research-idUSTRE8…

When a charity says that 83 cents of their donations goes into their stated mission, it's important to know what their mission is. While it appears that research for a cure is Komen's top priority, it's not. It's a mere spoke in their mission statement.

"At Susan G. Komen, our mission is to save lives and end breast cancer forever by empowering others, ensuring quality care for all and energizing science to find the cures." http://ww5.komen.org/AboutUs/OurWork.html…

Apparently funding science doesn't come under their mission statement blanket word of "energizing."

It's time for more.

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Everyday Joy

1/28/2015

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It was a sunshiny day today and I enjoyed every moment of it. It was a normal day filled with grocery shopping, with driving kids to and from school, cheer practice and soccer practice. My mother-in-law and I had our weekly day out, an event we both enjoy. I exercised and I ran errands. I cooked dinner. I cleaned the kitchen and I did some reading.

Yeah. Normal days are good.

I got blood work done on Monday and met with the endocrinologist about my rising glucose levels. Since I'm only having difficulties with the fasting levels, the current plan is for me to continue following a controlled carb food plan and exercise. He said it's only a matter of time before all my glucose levels rise to an unacceptable level and that we will put a plan into action at that time. I'm fine with not swallowing any more pills or having any more shots for now!

My blood work is fine, although my tumor markers are now slowly ticking in an upward trend. No one (including me) is too worried about this trend ... it's very slight ... but my past history shows that this most likely means the cancer is more active or slowly on the move. I will have scans next week (regularly scheduled scans, not in reaction to these numbers) and decisions will be made based on what they show.

I met with the oncology team yesterday and this is what was planned: if the scans show stability (no noticeable changes), then I will continue on my current treatment plan, but back on the optimum dosage level. In December, I had to make some adjustments due to severe hand and foot reactions, but my hands and feet are completely normal now and have responded well to the last two reduced cycles of chemotherapy.

If the scans show progression or significant increased activity in a particular tumor, my treatment plan will most likely change. That won't be decided until we know what (if any) progression there is.

I am getting over a common cold, which lasted no longer than it does for anyone else. I'm still coughing a bit, but much less than I did this past weekend while on a women's retreat at Mount Hermon. I enjoyed the retreat, but the cough was irritating.

I'm enjoying having internet access all throughout the house. We had significant issues that finally got straightened out, thanks to the diligence of Kodi at Comcast. People often complain about cable companies, so I wanted to give a high-five shoutout for the outstanding service we received from Kodi.

Being California, we are enjoying spring-like temperatures and trees are already in full bloom. Taking walks outdoors is such a nice thing to do and I'm back up to my three miles a day (most days). Our real estate may be ridiculously expensive, but at least sunshine is included in the price! :D

I'm still in Judges in my Bible writing project. I'm going through Galatians with some girlfriends and I'm surprised they put up with my questions. They (the women, not the questions) are so good to/for me! I'm really enjoying spending time with them.

I finished a scarf for Rachel in the knitting department and am working on a blanket now. It's fun to be able to fully use my hands without pain now. Being pain-free is something that is often taken for granted ... until you are unable to function as a result of pain. I'm incredibly grateful for my overall good health.

I still volunteer to teach English to visiting scholars from China. It is with great joy that I do this, along with a co-teacher. It's hard to build the relationships I'd like to build with the scholars since most of them live in Palo Alto, but I do so love the time I have with them on Monday nights.

Art and the kids are doing well. We all feel like we are now back on a solid routine, something that helps all of us. Christmas was great, but the lack of schedule was challenging at times. We are exercising the gratitude muscle as we know things could be infinitely worse than they are.

Everyday joy. I'm basking in it.

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Pretend Knowledge

1/25/2015

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I am a very firm believer in science-based medicine. I have little tolerance for hearsay and I make medical decisions that have solid evidence behind them. I do not rely on youtube videos, nor do I trust hearsay and/or testimonials. I strongly support clinical trials as they are the methods of providing replicable results. They might not be perfect, but they're the best we've got right now.

I do not believe in a "big pharma" conspiracy, nor do I think that doctors are in their profession (especially oncology!) for the money. I do not think the government is hiding a cure, especially since most governments in the world actually pay for their citizens' cancer treatments.

While I do believe that diet, exercise, hydration and good sleep patterns are important to a healthy body, I do not believe that the absence, presence, too much of/too little of these things caused the metastatic breast cancer that is invading my body.

There are a lot of "suggestions" out on the market that present themselves as medical knowledge. They are touted as "alternative treatments" because, gasp, the medical industry doesn't want you to know anything about them because it would cut into their bottom line.

There's no doubt ... medicine IS a big business ... but it's not the evil entity the alternative pushers try to make it to be. Quite frankly, I know too many people in the medical industry to believe the lies. I'm talking about my personal friends ... not the medical team treating me, although, they are amazing people who work incredibly hard on my behalf. But in my personal friendship circle, I know health administrators, nurses, doctors and researchers. I live in Stanford's back yard and I see the blood, sweat and tears that go into developing a medical product. My own husband works in medical device development so I know the number of hours, the amount of testing and the huge regulatory requirements that go into getting a product to market.

The alternative market is full of "pretend knowledge."

"Pretend knowledge is very dangerous because it can create the powerful illusion of genuine knowledge. Confirmation bias is a persistent and subtle bias in the way we perceive, filter, and evaluate information that systematically supports what we already believe or wish to be true. It largely occurs without our conscious awareness. We also tend to be unaware of the vast amounts of data we are sifting, and so when we find bits of data that seem to support our beliefs we find it unlikely that there is an alternate explanation.

"In medicine there are other factors that also conspire to create the powerful illusion that even entirely fake beliefs are legitimate. Chief among these factors are placebo effects – effects that make it seem as if a treatment is having a benefit even when it is doing nothing. Placebo effects are largely illusory, such as regression to the mean (symptoms getting better as a matter of course)."

The above two paragraphs are from a very interesting article on traditional Chinese medicine (TCM). I have a whole different post about TCM but I'll save that for another time.

Whole article here: https://www.sciencebasedmedicine.org/a-tcm-challenge/#more-34093

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Language

1/22/2015

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Language is a big deal in cancer land. There are those who fully embrace the use of terms like "fighter," "warrior," and/or the whole concept of a "battle."

And there are those who absolutely hate those terms.

Same goes for the "Cancer is a gift" versus "Cancer is a curse."

Susan Guber wrote about this struggle with words in an article for the New York Times. PLEASE ... take the time to read it:

http://well.blogs.nytimes.com/2015/01/22/living-with-cancer-coming-to-terms/?_r=1

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Debunking cancer myths

1/7/2015

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I've shared this article elsewhere, but I'm sharing it again because the infamous sugar legend is making its rounds again, along with everyone's New Year's Resolutions. Full article here: http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/

"Another idea we see a lot is that sugar apparently ‘feeds cancer cells’, suggesting that it should be completely banished from a patient’s diet.

"This is an unhelpful oversimplification of a highly complex area that we’re only just starting to understand.

" ‘Sugar’ is a catch-all term. It refers to a range of molecules including simple sugars found in plants, glucose and fructose. The white stuff in the bowl on your table is called sucrose and is made from glucose and fructose stuck together. All sugars are carbohydrates, commonly known as carbs – molecules made from carbon, hydrogen and oxygen.

"Carbs – whether from cake or a carrot – get broken down in our digestive system to release glucose and fructose. These get absorbed into the bloodstream to provide energy for us to live.

"All our cells, cancerous or not, use glucose for energy. Because cancer cells are usually growing very fast compared with healthy cells, they have a particularly high demand for this fuel. There’s also evidence that they use glucose and produce energy in a different way from healthy cells.

"Researchers are working to understand the differences in energy usage in cancers compared with healthy cells, and trying to exploit them to develop better treatments (including the interesting but far from proven drug DCA).

"But all this doesn’t mean that sugar from cakes, sweets and other sugary foods specifically feeds cancer cells, as opposed to any other type of carbohydrate. Our body doesn’t pick and choose which cells get what fuel. It converts pretty much all the carbs we eat to glucose, fructose and other simple sugars, and they get taken up by tissues when they need energy.

"While it’s very sensible to limit sugary foods as part of an overall healthy diet and to avoid putting on weight, that’s a far cry from saying that sugary foods specifically feed cancer cells.

"Both the ‘acidic diet’ and ‘sugar feeds cancer’ myths distort sensible dietary advice – of course, nobody is saying that eating a healthy diet doesn’t matter when it comes to cancer. You can read about the scientific evidence on diet and cancer on our website.

"But dietary advice must be based on nutritional and scientific fact. When it comes to offering diet tips to reduce cancer risk, research shows that the same boring healthy eating advice still holds true. Fruit, vegetables, fibre, white meat and fish are good. Too much fat, salt, sugar, red or processed meat and alcohol are less so.

"Also, this post, “What should you eat while you’re being treated for cancer“, is packed with links to evidence-based advice from our CancerHelp UK website. And this post, from the Junkfood Science blog, explores the science behind sugar and cancer in more detail."

Please go to this article for helpful links and for other science-based explanations that debunk the pseudo-science trendy fad "treatments and cures." scienceblog.cancerresearchuk.org/…/dont-believe-the-hype-1…/

(Anecdotally, I gave up all forms of glucose (no grains, no fruit, no root veggies, etc.) and had up to 20 grams of plant-based carbs a day. I exercised like a maniac to the point of hurting myself because I was starving my muscles as well. I lost 50 pounds. Within six months, the cancer spread from its stable position in my bones into my liver in the form of 10 - 15 lesions. Not just one lesion, but MANY. All while I had practically ZERO sugar going into my body.)

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Living through the year ...

1/1/2015

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I had a long, somewhat philosophical post written for New Year's Day and I've decided it's useless.

In short, last year, I said my goal for 2014 was to live through it. I met that goal. In short, that's my goal for 2015 as well.

It's rather arrogant of me to state this as a goal as it points at "me" as being in control of my life and death. I have no control over this. I lost 11 friends in 2014, most of whom were doing quite well last January 1. They took their medications, followed medical recommendations and died anyway. Their ages ranged from 27 - 74, with the average age being 52.

I will turn 52 in February.

My mother died at age 52 of the same disease ravaging my body.

I have no control. Rather than saying I have a goal to live through the year, I really should be saying that I have the desire to live through the year. And by living, I don't mean just getting through each day. I want to live so that I can continue to love.

I want to love my husband and children and be a teaching presence in my children's lives for as long as possible. I may not be around in their adult lives, so I want to live an adult life that they can remember as being a life of a Jesus follower. I fear I'm sorely lacking when it comes to my driving as I talk sternly to other drivers all the time! That will probably be a laughter memory for the kids ... that and the white gloves I wear while driving as I keep oils on my hands as much as possible.

I started chemotherapy again today after a three week break. While my hands and feet remain cracked and the skin continues to peel like a molting snake (do snakes molt?), they are no longer painful. I'm back to walking daily, although I'm only up to two miles a day instead of the 3-5 that I was used to. Ten days ago, I had to go to the urgent care center to have an abscess beneath my big toenail drained (ouch!) and it has fully healed.

We hosted family Christmas and I enjoyed cooking several meals, ranging from rib roast to chili to fried rice. We had way too much food in the house and I not only fell off the diabetic food plan wagon I am supposed to follow, the wagon rolled completely over me! Today is a new day, though, and I'm serious about my food again. Last year, I didn't get to enjoy any sweets as a result of the medically induced diabetes and this year, I am simply a pre-diabetic who needs to control what she eats. However, I went overboard ... can we say pendulum swing?

2014 was filled with joy and sorrow, loss and gain. My husband and I marked 17 years of marriage, I traveled to/through 18 states, saw multitudes of friends and family, welcomed our son to his teenage years, became a full-fledged cheer mom for our daughter, celebrated our son's outstanding soccer season, saw cancer progression, completed a clinical trial, started a new treatment plan, saw cancer regression, held an old man's hand during his dying moments on a street, attended more funerals and memorial services than ever before in my life, started an advocacy page, received love and support from countless number of people across the globe, and continued with projects in my life.

So as for goals for this year? Besides living and loving? I do have many.   I'd like to continue my Bible Writing Project (I'm copying the Bible by hand and am currently in Judges); digitize my decades of journals and essays (my husband lovingly bought me a new computer to tackle this project), get the advocacy website fully functional, do some more knitting (I have several pieces in progress), do some more cross stitch (once more, several works in progress), read, write, sit and simply be.

Yes, I just want to be. While it may seem that I live life at a frantic pace (At times, I feel like I'm trying to live the rest of my life in a truncated time capsule.), I do also enjoy the times of silence and solitude that I desperately crave and enjoy. My walking gives me space to think and process (which is one reason why I like to walk outdoors) and my Bible Writing Project gives me more space to think, pray and simply be with God. I enjoy his company on a daily basis and I listen for his voice in all of what I do.

Flawed as I am, I want to live through this year. While being united with God is a good thing for me, I'd like my departure from this side of eternity to be put off as long as possible. I know what grief feels like and I wish for my family and friends to be spared that pain for as long as possible. It's inevitable ... we all die ... but I feel there is more that God wants me to do before the veil is moved aside for me to see him clearly, face-to-face.

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A few words about Komen

Everyday Joy

Pretend Knowledge

Language

Debunking cancer myths

Living through the year ...

God's Story

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