Here is an inspiration

He's blind.
He's had thyroid cancer.
He's traveling to 30 MLB ball parks in 30 days.
He's raising $900,000 for Thyca - Thyroid Cancer Survivor's Association.

We should all be inspired by Reggie and his story. If we were all so motivated the world would be a better place.

Seriously a bit of altruism would help us all.

Would you share?

Two things happened yesterday (well lots more than two things happened in my life but these two made me think) and I started thinking. How much and when do you tell your cancer story? This isn't as easy as you might think. Once you tell the world you can't 'untell' it. And people still have a tendency to put you in that special category of 'on their way out' once they hear that c-word. Would a hiring manager, ignore the C-factor when reviewing your resume? Would people start treating you differently? Would it bring the crazies out of the woodwork? Would friends start rejecting you? These are very real questions.

First and foremost, your health is no one's business but your own. If you choose to share, its your decision. No one should 'share' for you. It is not their story to tell. And second, how public do you want to be? Again, you can't undo it. Once its out there, it never goes back. But I will say that my blog was picked up by Parade Magazine last fall (scroll down, I am below the fold) and it didn't change my life. I don't think anyone read it.

Yesterday morning my husband forwarded me an email from work where a colleague's wife has been diagnosed with breast cancer. The email came from an employee who had spoken with the colleague (husband) and he thought his wife could use a plant or something (a plant? get real) and they were going to send a thinking of you card. I'm not sure what good a plant would do but a card might be nice. (I think a plant is husband-speak for I haven't got a clue but its a really nice thought to do something.)

When I was diagnosed my husband didn't bring it up at work because he didn't think it was their business (and I agreed). I did urge him to privately tell us boss that I was having health issues and that is why he kept taking time off to take me to treatments. But  nothing was ever circulated through the office about me. I don't think I would want it.

Would you want your health to be emailed around your spouse's office? I would want to be consulted and ask what benefit would come out of it. A card is okay. A stupid plant not so much. A bunch of sympathy from people you don't know? Maybe if we socialized with my husband's colleagues and their spouses, but I do not make deep long term friendships through work environments. Work and friends are separate. So I guess I'm saying you can keep your cards and plants.

Later in the day I received an email from an online cancer community that Women Magazine is looking on Facebook for breast and ovarian cancer people to tell their story:

Breast and ovarian cancer survivors share your story! We love to include survivor stories in our quarterly print issue. If you would like to share your story in our fall issue, please let us know by sending an email to editor@omnihealthmedia.com.

In the first nano-second I was going to send in my name. But then I took a second nano-second to say 'no thanks, I want my privacy'.  I would prefer not to be put in the spotlight of national media. That's a big step that I am not ready to take.

We are few and far between

You can't turn around without running in to women who have had breast cancer. They wear pink, they have ribbons, they have walks, and cities and towns are painted pink. They can bond. They have retreats and get togethers. The month of October no longer leads up to Halloween, it has been pinkified. They get a whole month. If I don't know dozens of women who have had breast cancer, I know hundreds. There are lots of us.

But then there are few and far between long term thyroid cancer people. If there were 10,000 cases a year in the 1970's and early 1980s, how many are there left from them? A few weeks ago, I posted on a thyroid cancer message board asking to connect with others who had lived with it a long time. People who were five and six years out from treatment replied. Is cancer supposed to impair your definition of 'long term'? Definitely it shouldn't. Five and six years is not a long time. Long time is decades. Five years is the stupid little criteria they use in clinical trials to measure outcomes.

Back on the message board, I clarified a few days later and said I was looking to connect with people who were decades out from treatment. One person replied at 15 years out, another pushing 20. Finally a woman from the farthest part of the country from me replied over the weekend and said she is nearly 40 years out asking to connect. I have already sent her a message.

If you have a 'popular' disease like breast cancer with its walks, awareness, fundraisers, blah, blah, blah, it may be very difficult to realize the difference with someone who has a 'rare' disease. Has anyone ever been to a thyroid cancer fundraiser, walk or other awareness event? Probably not. They are just not as common because the disease just isn't as common.

There are other long term cancer people out there. I know others who are 25-30 or more years out from other types of cancer but they had the more popular kinds of cancer. We are the people who had cancer when it was the big C. We proved the big C wrong, by living through it. We may be few and far between but we are still here.

Call me irresponsible

Yes I am irresponsible. First of all I  did not blog for several days and didn't tell anyone. Well, posting on my blog and saying 'I am going away and won't be blogging' is inviting the burglars in. I apologize and now I am back. My cat is overjoyed we came back even though he had a very nice cat sitter who came and fed him, brushed him, and sat with him twice a day. But he feels he was neglected and malnutreated for the duration.

I am also irresponsible because I failed to pack my medications correctly. I packed my husband's pills. I packed my vitamins. I packed one pill box with prescriptions. I did not pack my daily prescriptions in my other pill box. Saturday night I remembered to take Saturday mornings pills. Then I found I was missing my Sunday and Monday AM pills. Well I took my Monday AM pills when we got home this afternoon. And I still seem to be alive, so no harm, no foul.

I am also irresponsible in that we went on a small hike on Sunday and at the very farthest point from the car, I stepped funny and 'felt' my ankle do the similar bad thing it did about three years ago that resulted in a boot and lots of PT. Right now I am in the ice, elevation and avoidance category. I'll give it a few days before I decide if it needs additional attention.

Finally I am very irresponsible in that we came home and started to  unpack and I couldn't find my wallet. I wasn't in my bag. I wasn't mixed up in the dirty laundry. It wasn't anywhere in the car, under the seats, etc. Finally after a good deal of stress, I found it sitting on the  bed next to my purse.

But I recovered from all this now by taking my pills, fed the cat, resting my ankle, destressing, and no longer being covered in wood smoke/insect repellant perfume.

You can call me irresponsible but I may not answer.

A 6.5 day pain patch

I have a bad back (in case I haven't mentioned it before) that gives me lots of pain. I have tried different medications for it, have special workouts that are supposed to help, take anti-inflammatories, have had several medical (mis)adventures to help relief pain, and am a firm believer in the value of multiple ice packs (especially in the summer). I also have breakthrough pain meds for when either I do stomething stupid or try to pretend I am a normal human being. Either my back pain is increasing or pain meds stop working and they get switched around and swapped out for others.

My latest pain relief are these wonderful (supposedly) 7 day pain patches. I put a new one on every Friday morning. The first few weeks they were great but now I am discovering a pattern. They only last 6.5 days. They come in little boxes of four for each month. If I switch to every 6.5 days I will run short each month and of course my insurance company would never let me detour from the designated dosing. (This was made very clear in the fancy DVD that accompanied my initial package.)

Last night my back hurt a lot and my husband accused me of being cranky. I told him my back was not cooperating and my pain patch wasn't working. He was deeply concerned that it would be several days (of crankiness) before I could put on another patch. I assured him I would put on another one after my shower this morning. He has already asked if I have put on the new one. Do I look like I have showered yet? No, my hair is still messy and I am still watching the mismatching pajamas I put on last night. And I might still be cranky.

I am optimistic about these patches. I may still be adjusting to them. I am also on the lowest dose available and go back to my doctor in another month or so to see how I am doing. In the meantime, I will just call them my 6.5 day pain patch.

Angiogenesis

I only learned about angiogenesis last year. Not having recently gone to medical school, I turned to my friend, Mr. Google (as opposed to Dr. Google) for a definition. Wikipedia says:

"Angiogenesis is the physiological process involving the growth of new blood vessels from pre-existing vessels."

 It goes on to add:

"Angiogenesis may be a target for combating diseases characterized by either poor vascularisation or abnormal vasculature."

Now we have gotten through a LOT of big words this morning.I have found an article explaining how contrast MRI may predict how women would respond to chemotherapy and possibly allow them to avoid mastectomies. Another (as if we needed it) research study was done and found:

"... contrast-enhanced MRIs can work as an early predictor of the body’s response to neoadjuvant chemotherapy by measuring the blood vessel formation in tumors, a process known as angiogenesis.  Angiogenesis is considered an earlier and more accurate marker of tumor response."

"... MRIs can detect tumor changes as early as the first cycle of chemotherapy.  If the tumor appears smaller and less bright on the scan, it can be interpreted as a sign that the chemotherapy may be effective and eventually lead to tumor eradication."
However this is all new and exciting but the results will be published later this year and then we need to see if this is coming soon to a hospital near you (and me). So one big word I learned last year combined with a technology I have already experienced has created progress. We may have to wait but in this case progress is progress.

News that is useless to me

I didn't use to be (so) fat. I used to be a size 8ish and am now a size 12ish if you really need to know. My size 8ness lasted until that first chemo when they pumped me full of steroids....

Now research says lose a little weight and greatly reduce that breast cancer risk. That's not very helpful. I am in the much higher than normal risk pool because I already had it.

More research (because we needed more research) tells us that obese people are more likely to be diagnosed with advanced and aggressive thyroid cancer. This is also a little too late for me because I don't have a thyroid (thank you cancer) but it could always come back - but we just won't think about THOSE things.

So this is useless news to me but maybe it will help others. Not that you haven't heard it before - we all need to lose weight.