Research hope and hopes dashed

I do follow the latest breast cancer, thyroid cancer, rheumatoid arthritis and fibromyalgia medical research. Some inner child is waiting for the cure to all of these ailments. I have learned a great deal about these ailments through reading the advances and get hope that some day a cure will be there. I also welcome the access to medical and other research across the board.

When I was first diagnosed with thyroid cancer in 1981, if I wanted to find information I had to go to a university's research library and read medical text books. It was confusing to say the least. In those days research was left to scientists and published in technical journals that were dense and textbooks for those learning the science or medicine that were no easy read.

Times have changed and I can find research every where. I can browse scientific journals online, set up Google alerts to send me the latest news, review the disease information on association websites, and have access to advances as soon as they are announced. However they all seem to be followed with the disclaimers 'more research is needed' and 'FDA approval is 5-7 years away'. Which can be frustrating, to say the least.

Every so often, I read some research that makes me wonder if I am over thinking, and perhaps the rest of us are too. I read this article on the impact of stress hormones on breast cancer recurrence or progression due to treatment resistance. It starts out by saying progesterone may stimulate that growth of cells that make cancer resistant to estrogen based treatments. Then it goes on to talk about the role of CK5 and goes on from there...

I admit it, I got lost. My breast cancer was ER-/PR- so do I have to worry about this at all? Well once I read it three times, I figured it out and could follow along.

But it made me wonder (which can be a bad thing), should I try to NOT follow all this research? Am I over thinking the hope that there is a cure out there? Should I leave this research to the scientists and not get myself bogged down in the details? I mean I do get the sense of hope from all the research that some day that cure will show up.

But is it worth letting myself get excited about the potential in the research and then get let down by the fact that the ending is 'more research is needed' and 'FDA approval is 5-10 years away'. Am I contributing to my own emotional medical roller coaster by trying to follow the advances and ensuing waiting?

A big part of any medical ailment is the emotional roller coaster that becomes part of your life after diagnosis. Learning how to cope with the roller coaster can be very difficult. And am I aggravating my own stress levels by accessing all this research? I will have to do some more thinking on this.

We aren't just our ailments

So I have a breast cancer blog because I have had breast cancer. I blog daily but not necessarily about breast cancer. Even when I first started blogging, it wasn't all about breast cancer. Sometimes it was about stupid doctors, or people lost in the parking garage, or other things.

Now its probably less about breast cancer and more about other things. Why? Because I am not just about breast cancer. I am about a bunch of other ailments and a lot of other things. I am a college graduate who works in both marketing and IT. I design and manage websites. I do catalog layout and design.I am happily married and we have two new cats who drive us crazy. And I go to the damn doctor too much.

I think all of us unhealthy people have a tendency to be defined by their ailments. I mean we might blog about them, or go to the doctor for them, or take a day (or ten) off work for them. But we are more than them.

We are men and women, tall and short, many different sizes and colors and religions and believes. We live in all parts of the world. The only thing we do have in common is we have an ailment.

We also do not want to answer questions about our health daily. I have a friend who asks me, every time I talk to her, how I am feeling. This is new since my second cancer but don't ask me in that tone, please. (You know what I mean.)

We are so much more than our ailments. Please let us be all of ourselves, not just our ailments.

I'm making a list

I have to make a list because I have no brains. My husband swears that my life is wallpapered with lists.

In early May, I saw my rheumatologist with the goal of doing something about methotrexate. While it has been good at controlling my rheumatoid, it has suppressed my immune system so that I would get a cold that would last 1-2 weeks every two months. I can't be out of commission that often from a stupid cold.

We made a deal where I would wean down my methotrexate for two months and increase my sulfasalazine and wait and see how I do. Well its two months and I go back to see her to talk options. I am not sure this combination has been that good. I have been having a lot of problems with my RA. Damn.

But I am making a list of issues and what to ask about options. Its a long list of issues and I am not sure how many options there are. Double damn.

Happy Birthday America!

Lets all take a minute to appreciate what we have and not what we want. To enjoy our freedom and thank the ones who helped us gain it and continue to help us.

Here is one of my favorite American heroes:

But there are many more near and far.

I am not usually all that patriotic but I did purchase a flag to hang on the front of our house recently (made in the USA and about $10 with a coupon). I also need a break from my health issues and the rest of life.

Am I an expert at anything?

I can no longer work full time. I struggle to work 15 hours/week. But I don't have enough money. Cash is tight in our house. I mean I have savings in the bank but they are in nice safe IRAs so they will stay there and grow until I retire. Anyway, I am trying to come up with more ways to make money.

My first thought is I will promote my knitting and crocheting and be proactive and sell more. The more I sell, the more I can knit. This keeps me busy and out of trouble on days when I am not up to going to work. So I have added a new page to my blog which I will fill with more information and keep my Facebook page updated with pictures of my latest creations. I can take credit cards or checks (if I know you) and will ship in the US.

My second thought is perhaps I can sell my services as a cancer consultant and help people navigate the medical maze of a cancer diagnosis. So I am asking, for feedback here:

• Would you want a cancer consultant to help you with the medical maze and cancer roller coaster on where to find support and help locally to you?
• Would you pay for this? Either on the phone or in email? 
• What kinds of questions do you/did you have?

I have no medical experience so I would not provide any medical guidance. I am not a social worker so I am not providing emotional support. But I do think I can help people find local emotional resources and additional information on their cancer.

My background is two cancer diagnoses so I have walked the walk so I think I can talk the talk.

What do you think? Am I on to something here?

Fibromyalgia issues

There has been a lot on line recently about fibromyalgia awareness. I don't need any more awareness thank you but felt I should share a bit.

My personal favorites are weight gain, muscular pain, fatigue and insomnia (thats a nice pair), and anxiety & depression, body aches, tender body points, and last of all, cognitive impairment a/k/a Fibro Fog.

Here are a few more notes from this article:

1. Fibromyalgia is primarily characterized by widespread muscle pain and tenderness.
2. Fibromyalgia can occur as a primary or secondary condition.
3. Fibromyalgia is often misunderstood and symptoms are often unrecognized, causing the syndrome to remain undiagnosed for months or years.
4. Ninety percent of fibromyalgia patients suffer with severe fatigue or a sleep disorder.
5. Fibromyalgia is associated with additional symptoms which seem distinct themselves but are actually included in fibromyalgia syndrome.
6. There are psychological as well as physical aspects associated with fibromyalgia.
7. Since there is so much variability in fibromyalgia, the syndrome does not manifest itself identically in all patients.
8. Diagnosis of fibromyalgia focuses on tender points but there is no definitive diagnostic test for fibromyalgia such as a blood test or X-ray.
9. Medication and non-medication treatments are used to manage fibromyalgia.
10. Fibromyalgia affects more women than men. The prevalence of fibromyalgia is between 2 and 4 percent of the population.

 But wait there is more!

You can read about the causes of fibromyalgia s well. And how it is a chronic condition and no it has absolutely nothing to do with any kind of arthritis.

I need to whine!

I'll just say that the best part of my day yesterday was calling my brother at 730 am and finding out he was on the west coast and it was 430 am. Sibling rivalry lives.

 This was my day yesterday:

Monday afternoon my phone would not work. I figured it has a dead battery (not an unusual situation for me) and I'll let it charge overnight and it will be fine. Tuesday morning it would not boot up. I tried everything. Finally I resorted to Google and found I could download a utility which would help me reset my phone (and since it was backed up, it didn't matter). But it took 45 minutes to download and install. Then I got a fail message. So I said GRRR (and WTF) and figured I would deal with it later. I unplugged my phone and it worked.

I got to work. We are about to get new paint, cubes, desks, and carpeting so everything is a bit chaotic. I carefully had packed up my office and desk and marked four boxes as being needed for my desk during all the chaos. There were only three boxes. And after some looking and research, it turns out my boss threw out my most important box (even though it was labeled). He did help me look through the recycling dumpster and we found about half of what I needed.

Then I couldn't connect to the f****ng internet. I tried everything I could and gave up and called our outside IT guy. He said he would be there in an hour and it then took about 30 seconds to fix it. (Why he couldn't walk me through that on the phone I have no idea.)

So finally I could get online and to the server, but I couldn't print. Because the person who was supposed to order toner for the main office printer a month ago, didn't because (a) she doesn't care, she has her own printer; and (b) see above. She apologized and said I could email her anything I needed printed. Half an hour later, I asked again and she hadn't even looked at her email because she (just found out she needed to pack her office and) had been busy packing up her desk. But the toner was due to arrive today and then she got an email saying it was back ordered so I guess she will be printing for all of us again tomorrow. And no I don't care if we all piss her off because she didn't order the damn toner a month ago.

Then I get to sit at my desk and get some work done. My boss stopped by and said he would see me next week. I said no I will be here Tuesday, Wednesday and Thursday because I have way too much to do. He was surprised because apparently its a slow work week and he didn't think I would have much to do. My work level does not correlate to how busy or slow sales are. I'm marketing and IT so I always have something to do.

And then the cats pulled a dead mouse out of the kitchen cabinets. It was in a trap and my husband hasn't been checking them as often as he should. I did not need to see a dead mouse when trying to cook dinner.

My plan is that today will be a better day. I will not have to put on my cranky pants and be a b***h to everyone again. I also think that my health recently has not been cooperative so that I tend to over react to everything. I also do really like my job and my boss. Usually he is very nice and understanding. Yesterday it was just too damn much!

Deep breath. It will be better. And I can always claim too much pain from something and need to leave work for the day.