Tuesday, March 5, 2013

Fellow bloggers

My fellow blogger and Dana-Farber patient Tara has a great phrase when it comes to all the information about cancer out there... wherever there is. She calls it her cancer cocoon.

I like that phrase.

Sometimes the information is good, sometimes it's bad, and sometimes it's downright scary. So much so that you feel like you need a protective little cocoon to shield you from what you can't handle. That's how I felt a lot of the time during my first year post diagnosis.

Stacy would dig around online and find out information about lymphoma and follicular lymphoma, but I never looked. I'd occasionally run into some info naturally (I do work at Dana-Farber after all) but even when I started treatment, when maybe it would have been good to know more about CHOP vs. Bendamustine and alternative treatments and all that stuff, I still stayed nestled in my little cocoon, putting trust in my care team (and really the entire Lymphoma team at Dana-Farber, as they all review all the cases -- weird to think of myself as a case) to know what to do and to present the options to me.

Now, after a year plus of watching and waiting, six months of treatment, and 103 blog posts, I'm coming out of my cocoon. Part is the natural evolution of processing my diagnosis; part of it is blogging; and part of it is the small community of fellow bloggers and patients I've met, particularly in the last few months.

 I want to introduce a few of the newer ones I've been following.

Total Recovery. Full Stop. Checkmate. I Win. - This is Tara's blog, mentioned above. I'd follow this just for the title but there's more to it than that of course. I love the energy and spirit of this blog. Tara is not a lymphoma patient but as a comparison of her posts and mine will reveal, some issues that cancer patients face are universal across different types of cancer.

Lympho Bob - I didn't know what to expect from a blogger/blog called Lympho Bob, but as I found out, it's a great source of updated information about follicular lymphoma from a lymphoma patient. Regular, frequent posts for more than five years, it's a great source of lymphoma info.

Blessings in Disguise - Rachel is also a follicular lymphoma patient and a dedicated blogger whose posts are imbued with messages of faith, along with  information and even some great recipes and food photography! I may not share the same faith as her, but I do share a lot of her sentiments.

My Lymphoma Journey - Andrew is neither new to me or new to the blogging world but I had to include him here because I've been following since the very early days of my blog. He is a post stem-cell transplant patient, blogger and now book author who shares insights and information on lymphoma, cancer, healthcare, and even movies.

I would guess that as I come more out of my cancer cocoon, I'll find more fellow bloggers, and through events like the upcoming lymphoma conference, even a few more fellow follicular patients.

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4 comments:

  1. Michael- Love the analogy of the cocoon. I am presently in a cocoon dealing with my Mother's diagnosis of non smoker's lung cancer. I think I will stay in the cocoon as well until I feel it is OK to come out. For now- it's safe and warm. It's hard for me to even type this much. :) I think of you, Stacy and the boys daily.

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  2. Cancerland is another term I like but cocoon also applies. The other interesting transition is post-treatment and, if all things are going well, one's cancer identity recedes into the background (never disappears) and one's other identities and interests come to the for.

    Thanks for the mention of my blog and good luck with 'spreading your wings'. :)

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  3. Michael, Thanks so much for mentioning my blog! What a wonderful surprise when I visited today to see what you had been up to. I am glad to hear that you're coming out of your cocoon although the very fact that you work at Dana-Farber means you barely had the luxury of one. I sure do admire you for that!

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  4. I am just catching up on reading your blog and am so touched that you would include me among this list of truly wonderful people! I am honored. Thank you so much, Michael. Look forward to watching you blossom! :)

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