On The Road Again

This weekend I am on the road again. It is a real road trip. I drove with a friend (well she drove all so far) about 840 miles to the middle of Indiana from Massachusetts. We spent a night at my brother's and two nights in a hotel and then we will go back to my brother's and home. A road trip without the Thelma and Louise business.

Why am I on a road trip like this when I am among the least health people in the country? Because:

1. I wanted to
2. Its a great change to do something completely different
3. I am meeting some people I have known online since 2007 but have never met in person. 

Reason number 3 is the most important to me. When I was diagnosed with breast cancer, I went online for support and to find out information about my latest health debacle. I met all these wonderful women who were also coping with their own breast cancer demons. They were amazingly helpful and supportive and got me through some tough times.

But I never met them in person and now here I am. I will get to meet some of the people who were very important to me and understood what I was going through like no one else could. 

Changing Your Wardrobe For An Ailment

I couldn't sleep last night (again - thanks to back pain) and started wondering why women with breast cancer instantly start wearing pink and accessorizing with all things pink upon their diagnosis? Why do they feel the need to do this? I just don't understand. I admit when I was diagnosed with breast cancer I did go out and purchase one pink breast cancer t-shirt which I wore to chemo once and then donated it. I was also given breast cancer t-shirts by family and friends after they participated in an Avon walk. I never wore them either.

What if your ailment didn't have a 'pretty colored' ribbon, would start wearing that color? If you were diagnosed with narcolepsy, for example, would you start wearing black and accessorize with black ribbons? Or if you had ADHD would you wear orange and orange ribbons? Probably not.

With my medical history I should then wear purple (thyroid cancer and fibromyalgia), blue and purple (rheumatoid arthritis), light blue (lymphedema), and pink (breast cancer). I am probably forgetting something but that's enough of a rainbow for now. (See the whole list here.)

Pink has always been one of my favorite colors. I have always worn a lot of pink clothes. But now I actually stay away from pink as I don't want to be identified as a breast cancer person by the clothes I wear. So in some ways I am changing my wardrobe away from pink in a cringing way.

Call it backlash.

That Breast Cancer Bond Thingy

While I was at the gym yesterday, I was on the bike getting my cardio in when I two women who I know started talking next to me. Then one of them came over to said hi. I knew she had a lot of cardiac issues last spring and I asked her how she was doing. She said she is better now but still had some soreness on the side of her rib cage. That didn't seem like a cardio issue so I asked her what it was.

She had a mastectomy because she had her third occurrence of breast cancer. Twice on the left and this third time on the right. And all three were different cancers. I thought wow three different breast cancers and now two separate mastectomies. And over twenty years.

Of course we became instant pals because I told her about my breast cancer history. That breast cancer bond showed up.

I still find it funny when that breast cancer bond shows up. I have no other ailment that inspires such close bonds. ACL injuries? Nope. Fibromyalgia? Nope. Thyroid cancer? Nope. Rheumatoid arthritis? Nope. Breast cancer? Yep! Big time.

I think its a spin-off of all the unity behind pinkification. You get breast cancer and someone wants to stick a pink ribbon on you so you can become best pals.

Awesome Breast Cancer Blogs

I found the list of Healthline's best breast cancer blogs for 2016. I'm not on it (but I'm not perfect so I didn't expect to be). But the list is full of other women's breast cancer blogs that are current. If you have breast cancer, I strongly suggest you read follow these blogs. At least some of them.

My current favorites are on the list. You need to go read the list to find your favorites.

She Left Us A Great Legacy

Last week, Jody Schroger, passed away from metastatic breast cancer - that's the kind that kills people. Jody was legendary in the breast cancer world. Why? Because she did so much. She helped build the metastatic breast cancer community, on Twitter and elsewhere.

Jody was the kind of person we should all be. Very low key but very strong in her actions. If you google her, you will be surprised on how many places she turns up. That's because she helped found Breast Cancer Social Media.

"The Breast Cancer Social Media (BCSM) community began with a simple question – could the power of social media be utilized to unite, educate, and empower those affected by breast cancer?" 

Two breast cancer patients, one of them Jody, and one doctor set out to answer that question. They have a huge impact on the breast cancer community through their Twitter chats. I am not a Twitter chatterer but I did read through some of them and was impressed with them. (If you search #BCSM on Twitter you will see what I mean.)
I actually met Jody, really met in person, at some event we were both at. Was it a DOD CMRP or a pharma industry meeting? I can't remember. But after the meeting we both ended up in the same terminal at the airport and hung out for a while as we waited for our flights.

It wasn't a significant conversation. We talked about a few issues, chit chatted about being stuck in an airport, as well as coping with cancer and the importance of being active. Then we parted and headed for our respective gates. I had a weird feeling that I would probably never see her again. She left us a great legacy.

Why read blogs anyway?

Back in the early 2000s, I worked for a larger non-profit in Boston. One of the staff attorneys spent a lot of time reading these things he called 'web logs' that were online. Now I had heard of them but never thought much of them. They were one of the first internet fads...

Then I started writing one, because it helped me cope. All bloggers ask themselves the question once in a while 'why the hell am I still blogging?' We all have our reasons. Some of us stop blogging or our blogs change topic completely but we keep writing. And some of us still blog about the same damn things because we have no lives I guess.

Now the question becomes why do readers read these blogs anyway? Especially if they contain all sorts of useless and senseless crap that only makes sense to me the writer? And even more especially if its about cancer, that lovely ailment?

Someone is finally taking the time to quantify and ask questions about this. As you can see in the little box to the right ==> where it says:  "Blog Impact Survey - til 4/30/15" in big bold letters. There is a link to a survey because another blogger, Rebecca Hogue, got smart. 

She is conducting a study on how breast cancer blogs are impacting people who read them. She put together a survey that takes about 5 minutes to complete. (She says 5 minutes but I took it myself and think its probably more like 3 minutes or if you read fast, maybe only 2 minutes.) She is most interested in the final question (and I'm not tell you what it is - you have to take the survey to find out). Here's the link if you can't move your mouse far enough over to the right . 

You don't have to complete it today as it is open until the end of the month. I will probably even remind you in the future because I know I can't remember anything for mroe than a nano-second anyway.

Can I just say "please" one more time? It would really be nice if we knew why people read our blogs and if they help anyone or if we are just senselessly babbling our way through our illnesses? 

Thank you.