"Blogging Breast Cancer" in MAMM magazine

Blogging Breast Cancer by Sherry Baker is an article in this month's issue of MAMM magazine.

A portion of my Public Face versus Private Face blog post is quoted in the article. The article excerpts from this this passage:

I do struggle with the question "How are you?" I haven't found a consistent answer yet:

"So far so good."

"I feel fine."

"Prognosis is excellent but there is no cure, you know."

"I appear to be cancer free."


To me, it is quite the paradox that I've let my fears and emotional ups and downs show more here - on this very public place!- than in daily conversation. But at this point if I'm out socializing or at a meeting, my cancer is old news (please God let it stay that way).



If you are thinking about starting a breast cancer blog, the article contains some solid tips. It also explores the sociological aspects of blogging, which continue to fascinate me. Definitely worth a look.


I started blogging on such a whim. It was the night after my first chemo treatment & I couldn't sleep. I was wired (from the steroids that I had to take with the chemo), but was physically exhausted. It was the perfect project for the moment. For a while, I wasn't sure if I liked blogging. It took some time for me to figure out my own style and comfort zone. I was tempted to hit "delete this blog" a number of times. I'm pretty much over that now :)

OK, So Now What?

Thoughts on Blogging

About a month ago, Lorelle on Wordpress did a post on Cancer Blogs and Blogging.


I discovered this post because my blog was listed, so that was kind of cool. Considering that Lorelle is not a "cancer blogger" she sure did manage to hit on one of the fundamental aspects of blogging about cancer. She writes: "If the disease ends, should the blogger keep blogging about being a 'victim' or 'patient'? Shouldn’t their blogging move on as their life has? What happens to the blog?"

It's a conundrum that so many of us face as we move further out from active treatment. Some of my favorite bloggers have all but stopped updating their blogs. I guess that's good - they're off living their post-cancer lives, right? But without any updates, I'm left to wonder how they are doing.

I know other cancer bloggers who have kept up their cancer blog but started another blog, too. I've thought about doing this (and I still might). But am I up for maintaining two blogs?

So I find myself at a bit of a blogging crossroads. I do still have plenty to say about breast cancer on this blog. Creative breast cancer projects come to my attention all the time, and I want to blog about them. Cancer continues to influence my own creative efforts, and I want to blog about that too.

Bad News

I am so so so so sorry to report that I have something sinister weighing on my mind again. On Wednesday, I found a little, hard lump right near my port-a-cath scar. It's tiny. Like smaller than a B-B. It could be scar tissue, but that scar is almost two years old. How likely is it that this would occur now? It hurts. If I push on it in a certain way, the pain is sharp. Almost like this little bump has a shard on it. I think that it would be unusual for a tumor to present pain in this manner.

It's not even on my cancer side. But... certainly there are lymph nodes in the area. It's just an inch or so below the collarbone. Maybe, despite a bilateral mastectomy, it is a new primary tumor. They can't get all of that breast tissue out, you know.

I had something happen to me a couple of weeks ago. It was related to the bleeding colon polyp that I dealt with last year. I had a few dark days. I had to go in for a test. The test came out fine. I didn't even write about it. I hardly even told any of my IRL (in real life) friends. Just didn't feel like dealing with it.

I had a pretty good run of it this past year. I've been able to play, work, travel. I've had days when cancer didn't even cross my mind.

Now?

Can't concentrate. Can't cope. Can't breathe. Appointment with breast surgeon on Monday.

Blogging on TV

Ok, this was pretty exciting. My blog was featured on a local TV news station.

Here's the link to the video clip:


Inspired Living: Breast Cancer Blogger

Doing the interview was a fun and pleasant experience (although I did have to clean the house!) - watching it was weird. I'm tempted to pick apart & analyze what I said and what I should've said but I'm just absolutely going to resist the urge.

Genetic Testing: The Mental Game

Jewcy Magazine has launched a series of essays in which a young woman, Neille Ilel, explores what it is like to have a strong family history of ovarian cancer and to be faced with the decision of whether or not to take the genetic test that would tell her if she has inherited a predisposition to breast and ovarian cancer.

The series is called A Jewish Girl's Guide to Genetic Testing and the first two installments are currently online.


Most of the breast cancer survivors who I know do have genetic testing performed. I haven't had the test done and am not planning to have it done, but I'm in the minority.

Some Jewish women have a higher probablility than the general population of carrying the genetic mutations. I was whisked off to a genetic counselor not because I'm Jewish (I'm not) but because I was premenopausal at the time of diagnosis. If a premenopausal woman gets breast cancer, the doctors become more suspicious that hers is a genetic incidence. There are two genes that you can get screened for: BRCA 1 and BRCA 2. The test itself is simple - it's a blood test. But the mental game that rides along with it isn't simple at all.

It's hard enough for a breast cancer patient who tests positive to decide whether or not to go forward with having non-cancerous body parts removed. I can only imagine the anguish that the situation would present if you only had the potential to develop cancer.

I ended up having both breasts removed and my ovaries removed for a variety of medical reasons - so in a way I was spared having to make the decision.

I don't have daughters or sisters. If I did, perhaps I'd be more inclined to take the test. When my sons come of age maybe I'll revisit the issue. But for now a positive result would just be a burden to our family. I'm not so sure that a negative result is all that meaningful anyway. Perhaps there are still many more not-yet-identified breast cancer genes.

It surprised me at first, but I've discovered that sometimes women are dismayed when the test result is negative. At least if it was genetic, there was a reason that the cancer occurred.

---

I enjoy so many other sites and bloggers, and I've been planning to put together a Blogroll but first I have to finish the tedious job of adding labels to all of my posts that were part of the old version of Blogger.

My blog is linked and/or listed on a few sites (Jewcy is one of them) and I absolutely love being part of the sprawling conversation.

But I'm Not Done Blogging!

I think that these are fushias. They are having a re-bloom.

I took a little pause on the blog, but I am NOT done!

"How are you feeling?" I get this question all the time. Believe it or not, I am feeling 100% fine. Like nothing ever happened to me. It's kind of incredible, isn't it?

There is only one thing left that could screw me up (well, except for metastatic disease but we aren't even going to go there...) and that would be my new pill that I have to take.

I see my oncologist next week and if my estrogen levels have fallen sufficiently then I'll start my new pill (it is called an AI). It can have vicious side effects, mostly joint pain and hot flashes. It can also accelerate bone loss.

And then again, maybe not. I got through chemo Ok, I got through the surgeries, I'm surviving estrogen depletion...if this final step makes me miserable I will NOT be a happy camper, you know this don't you?

Thoughts on Blogging & the Internet

I returned from the mountains and my computer presented me with the blue-screen-of-death, and is currently out for repair. Therefore, I have had very limited computer access for a solid week now & this has led me to thinking about the role that blogging and the internet have played in my life recently.



The blog has been excellent therapy for me. It allows me to contain the Cancer Story in one place. This is good for me because it allows me a time and a place to process the mind-trip & chronicle the medical details- and then move on to the rest of the day. Truly, most of my day & thoughts are ordinary details like trying to keep three children busy all summer without breaking the bank, wondering what to have for dinner, etc. Someday my kids will be grown up and perhaps curious about this time in our family's life and an archive of the blog will tell them the story. I print out a hard copy monthly; you just never know when Blogger will crash or disappear.

I get lots of emails from my far-away friends about things that I've posted & I'm always grateful for those and the blog comments. Likewise I now have on my favorites several blogs that I check daily. Some are other breast cancer patients & some are more general. I have a friend on an extended road trip and it was great to finally be able to look at her blog yesterday and see how the trip has been going.

I want my computer back!

But, as with most things, there is a flip side. The medical information on the internet can be both a blessing and a curse. Occasionally I torture myself with reading about Stage IV metastatic breast cancer. I start out with a reasonable research aim: what are the signs and symptoms that the disease has reoccured and/or metastasized? But the log in session usually deteriorates into reading case after case of unhappy endings or to a warped perspective on how often this actually occurs.

Hopefully I will get my PC back soon (I'm on Tommy's laptop this morning) & I'll be able to add some pictures. All of this text looks so boring! I do have an external hard drive back up so no matter what is wrong with the PC I shouldn't have any lost data. I learned that lesson the hard way, too, when we had a hard drive failure last February.