National Poetry Month

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I’m taking part in a National Poetry Month (#NaPoMo on Twitter) challenge set up by the Found Poetry Review. What does this have to do with breast cancer? Nothing much, except that after a too-long absence I started writing poetry again after I was diagnosed with DCIS seven years ago.

As part of the challenge I need to try to upload a poem a day throughout the month of April to the PoMoSco (Poetry Month Scout) site, using a variety of prompts. So far I’ve written a poem using only words found on a menu, created haiku from a site that scrambles the original haiku you load into it, and created a poem using only questions found in a source text. I can’t share any of the poems here; all 213 “scouts” (poets) taking part from around the world are posting their poems on the site. I urge you to check it out because some of the work people are creating is nothing short of amazing. It’s on Twitter as #PoMoSco if you want to follow along there–they post new poems every day. It’s a lot of work and I probably won’t earn all 30 badges, but it’s a lot of fun.

I’m telling you this for two reasons. First, you may have noticed I don’t blog much any more. I’ve been trying to decide whether to take this blog in a new direction while keeping the original name, or shuttering it and coming up with something new.

But more importantly, if there’s something creative you love and have gotten away from, or something creative you’ve never tried but wanted to, why not try it now? You might be surprised at what you come up with. Even if you decide all you want to do is write down your thoughts about your journey in cancer or in life, it can be a very healing experience.

Feel free to share your thoughts (and poems!) here.

Happy Poetry Month!

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525,600 Minutes

(Napa toastEditor’s note: Today is the second anniversary of my friend Pam’s death from metastatic breast cancer. This post originally ran in April 2013.)

This picture is from October, 2011, when my husband Bruce, his brother Jeff, and our friend Pam went to Napa. Pam’s hand is in the lower right in the picture. You can see how swollen it is in spite of the lymphedema sleeve peeking out from the bottom of the frame.

It was Pam’s idea to take the picture of our hands raised in one of our many toasts. She knew we were making memories to last the rest of our lives, in her case, six months. She gave framed copies to all of us for Christmas.

It’s been a year since she left us, a year filled with memories and disbelief that she’s actually gone. We started letting go of some things and hung to others as long as we could. Bruce still has a picture of Pam as his cell phone wallpaper. I swapped mine out a few months ago, but like him, saved her texts. When we went on our second pilgrimage to sleep with the sandhill cranes in March, we planned to laugh over the text messages she sent on our previous trip. We were both shocked to see her text messages had disappeared. It felt like she was being erased.

The song “Seasons of Love” from Rent asks how you measure a year, or 525,600 minutes. “In daylights, in sunsets, in midnights’–then asks “How about love?” and urges us to “Celebrate” and “Remember a year in the life of friends, Remember the love!”

525,600 minutes later it still hurts like hell, but we remember the love.

My other posts about Pam:

The Other “F” Word

I went to see my oncologist for my six-month checkup yesterday. All was routine, other than my blood pressure being 131 over something when it’s usually in the 115 range, even when I see my family doctor. No anxiety there.

When he asked what had changed in the last six months, I told him about the endoscopy I had in December, which turned out to be normal. But what prompted it is something anyone whose had cancer faces whether you want to admit it or not (and I usually don’t)–fear. I was having stomach discomfort that went beyond what over the counter drugs could handle. I finally got worried enough to get in touch with my family doctor. Her practice has a secure portal, so I was able to email her and spew out all my fears.

Ten years ago I wouldn’t have shared my fears at all, so that’s a kind of progress. But 10 years ago, I didn’t appreciate how your body can turn on you. Thanks to early-stage breast cancer I do, and it’s hard for my mind not to immediately go to the worst-case scenario. I shared every cancer scenario that kept me awake at 2 a.m. and scheduled an appointment. 

When I came in for the appointment, she was wonderful. I did a brief recap of why I was there. She listened, then said, “Let’s put all that stuff you’re worried about over here,” waving her hand, “and focus on the symptoms.” Based on my situation and history she prescribed a stomach acid drug and endoscopy. I want to stress that she didn’t order the test because I was scared, and I wouldn’t want her to. She ordered it because it was medically indicated. I’m not a big hugger but I asked for a hug after that because her rational but respectful approach was just what I needed. I feel blessed to have her as my doctor.  

I feel blessed to have my oncologist too. When I told him about sharing a wheelbarrow full of fears with my family doctor, he nodded and said, “That’s what happens when you have cancer.” Then he paused and smiled and said, “It doesn’t help to be a cancer doctor either.” I said no kidding.

It reminded me of the “No Fear’ brand of clothing that came into vogue because of motocross. A few years back I spotted a young guy wearing a shirt that said, “Some Fear.” I laughed then, but it’s even funnier now.

The #BCSM (breast cancer social media) community has discussed this residual fear on their great Monday night tweetchat. If you feel like you could use (or lend) some support and you’re comfortable with Twitter, it’s a great chat. You can also visit their website. And they’re not snobs; some things, like fear, are universal, and people with other kinds of cancer have been made welcome there.

Should We Rename DCIS?

Ductal carcinoma in situ was all over the news this week, after the Journal of the American Medical Association published “Overdiagnosis and Overtreatment in Cancer, An Opportunity for Improvement.” This is a good, and necessary, conversation. DCIS was front and center as one of the prime candidates for overtreatment, and the panel proposed renaming it Indolent Lesions of Epithelial Origin (or its evocative acronym, IDLE), to lessen fear and potential overtreatment.

I can speak with some authority on the subject, as I was diagnosed and treated for DCIS five years ago. After considerable discussion and two attempts at breast-conserving surgery that failed to get the desired clean margins, the treatment plan my doctors and I landed on was a (single) mastectomy with auxiliary lymph node removal to make sure some cells hadn’t escaped. Luckily, they had not, although the mastectomy uncovered still more cells lurking beyond what the earlier surgeries captured.

I won’t repeat what others have said, but here’s my take on it. You can call it whatever you want. Call it DCIS or precancer. Call it indolent or IDLE. Call it a cab, for all I care. But if I were diagnosed today, with the same circumstances, I’m willing to bet my doctors would make the same recommendation and I would make the same choice. My oncologist told me the odds of my DCIS becoming invasive were 50/50, and I didn’t like those odds. He also told me he would support me if I chose radiation instead. “Wait and see” was not an option then, and I don’t think it would be now given my specific situation.

The other point I want to make is related to that. My book, From Zero to Mastectomy, was reviewed last week on the Breast Cancer Consortium website. While I appreciate the thoughtful treatment Bonnie Spanier gave it and her overall positive review, I want to respond to one area. She said my trajectory took me farther away from the full spectrum of the disease as a precancer, and while she conceded that was understandable at the time, she didn’t feel I gave enough attention to the complexities of DCIS.

The book was not an academic exercise for me. I did not set out to write The Emperor of All Precancers. I felt, then and now, that the best way I could help other women was by sharing my experience.

Here are some links to recent and not-so-recent stories about DCIS.

If you read only one thing regarding the current debate, read “What’s In A Name?” posted on the #BCSM Community website. This piece, by Jody Schoger and Drs. Deanna Attai and Michael Cowher, is the best summary of the issue I’ve read.

Bloomberg News ran a well-balanced story on handling this confusing diagnosis, and I was one of the women interviewed.

CURE Today magazine ran the piece “Redefining the Word Cancer,” in which Debu Tripathy wisely said, “one cannot just declare a new system into existence.”  (Especially a belief system: See: Mammograms, Annual.)

The same point was raised in the New York Times “Well” blog, in its excellent “Scientists Seek to Rein in Diagnoses of Cancer.” My favorite part of this piece was when Memorial Sloan-Kettering’s Dr. Larry Norton said changing the terminology does not solve the problem of doctors not being able to tell patients which cancers will remain indolent and which will go on to kill them.

The best path we have remains the one we’ve always had: individual consultations between doctor and patient, based on individual physical characteristics and risk factors. I would also add levels of risk tolerance. I discussed it a bit in my Bloomberg News interview, and I’ve also written about women who opt for bilateral mastectomies after being diagnosed with DCIS. As the discussion about this poorly understood condition heats up again and the public opinion pendulum swings in favor of watching and waiting, let’s not stand in judgment of their choice.

How to Get Comfortable on Tweetchats

BCSMI’m writing this post in response to a plea for Twitter mentors from Jody Schoger, one of the moderators of the Breast Cancer Social Media (#bcsm) tweetchat. It takes place every Monday night at 9 p.m. Eastern time and has rapidly become one of the most popular tweetchats out there. Jody said there are quite a few lurkers out there who need some help getting started.

The first thing you should know is it’s common to feel intimidated by tweetchats and Twitter in general when you’re first getting started. I remember how scared I was the first time I attempted to join a conversation on Twitter. It’s like walking into a giant cocktail party where you don’t know anyone. I also remember how thrilled I was the first time someone I didn’t know started following me on Twitter. He’s a doctor who since deleted his account (at least that one–he could still be out there somewhere), but I will always remember how he made me feel welcome and would explain things like what YW means (you’re welcome). I gradually become comfortable out there and you will too.

The other thing you should know is that #bcsm is one of the fastest-paced chats out there. So if you’re thinking, Wow, I can’t keep up!, it’s not just you. I followed along with another popular healthcare tweetchat one night and it was positively sedate by comparison. #bcsm is definitely like drinking from a fire hose.

There are a couple of things you can do to keep up. One way is to use tweetchat. You can sign in with your Twitter account and it will scroll all the #bcsm tweets. You can set the refresh speed and you don’t have to enter the #bcsm hashtag with your tweet. Another way is to use tweetdeck and create a #bcsm column where only those tweets will show up. I typically use both because sometimes one or the other will cough up a hairball.

That’s the technology side if it, but how do you get over feeling shy? Start slow. Introduce yourself at the beginning of the chat. Mention why you’re here. If you’re feeling shy because it’s your first time on the forum, feel free to say that. If someone makes a comment you love, say so. !f you have a question, ask. If someone says something that reminds you of your own experience, share it. If you don’t agree, that’s okay too, just remember to be respectful. It’s a conversation just like the conversations you have offline (aside from the fire hose aspects).bcsm-team_0

Finally, remember, you are talking to people, like #bcsm’s moderators and hosts: From left, Dr. Deanna Attai (@DrAttai), a breast surgeon who helps #bcsm and the public at large make sense of technical medical issues and is a member of the American Society of Breast Surgeons. In the middle is three-time cancer survivor and moderator Alicia Staley (@stales), and on the right is writer/survivor/moderator Jody Schoger (@jodyms). They are three of the most welcoming people you could ever hope to chat with.

The topic varies every week and ranges from dealing with mets to what cancer does to relationships, to the “open mike night” scheduled for this coming Monday, March 18th. Please feel free to join in.

#HCSM Review December 5th Edition

I didn’t specify a topic the HCSM blog carnival this week because I wanted to see what kinds of posts I’d get. I got a huge variety, everything from patient advocacy to mobile apps.

One of the things that fascinates me most about social media is how patients are using it to find and support each other. One of the best is Marie O’Connor, who has been blogging at Journeying Beyond Breast Cancer for four years. Her post this week is on the power of patient blogs.

Twitter has become another huge channel for healthcare advocates, and one of the best known tweetchats is #bcsm (breast cancer social media). One of its moderators, Jody Schoger, wrote #BSCM, Cancer Advocacy and Education in the Virtual World for the Breast Cancer Consortium. Jody also blogs at the excellent Women with Cancer and if you don’t follow @jodyms on Twitter, you should start. Right now.

David Harlow at HealthBlawg submitted Engage With Grace, which asks us to have that all-important conversation with loved ones about how we want to die. This was the fifth year of the Engage with Grace Thanksgiving blog rally.

Disabilities advocate Patricia Anderson submitted #HCSM and Disabilities: Some Case Studies, which discusses how social media venues such as Second Life are removing barriers.

Patient advocates are also using their power to put doctors on notice. No, You Kiss My . . . , from afternoon nap society, calls out a Dr. Greenbaum for belittling a patient in an article he wrote for a rheumatology journal.

Healthcare IT researcher Tim Cook also touches on this theme with Change, really!? arguing that doctors are not losing power simply because patients are gaining it.

And doctors are embracing social media. Want to get a roomful of cardiologists’ jaws to drop? Start talking about using social media to improve outcomes, like cardiac electrophysiologist Kevin Campbell did at a recent conference.Tuberculosis is a huge public health issue in India, and Dr. Ruchi Dass explains how ecompliance is being used to control it.

Data was well represented, with Andy Oram reporting on big data from the Strata RX conference and Jason Kohn posting about the mobile healthcare revolution in the developing world.

John Goodman reported on a radical notion: cost transparency and shopping for medical care, thanks to a health-care “blue book” and MediBid, which operates on the Priceline concept. I remember when I had my post-mastectomy breast reconstruction four years ago, even my plastic surgeon had no idea what the Alloderm he used to augment my tissue cost.

Thanks to everyone who submitted blog posts this week, including Joan Justice, who curates the HealthWorks Collective site where several of these posts appeared.

Calling All Health-care Social Media Bloggers

I’m going to host HCSM Review on Wednesday, December 5 so if you have a great post about social media and health care please submit it to  fromzero*at*cox.net by 6 p.m. Eastern time Monday December 3. I am not requesting any specific theme; just send me a favorite post on social media and health care, or write a new one. HCSM Review does ask that to be considered for inclusion, posts should have been written within the last couple of weeks.

HCSM Review is a blog carnival, which means it’s a summary and round-up of blogs including links to the blog posts. Marie Ennis O’Connor (@JBBC) does something very similar with her Friday round-up of blogs that have inspired her over the previous week. If you’re not familiar with Marie’s very fine blog Journeying Beyond Breast Cancer, I urge you to check it out.

I’ve never hosted HCSM Review but I hosted a different medical blog carnival, Grand Rounds, a couple of times. It was a great blog carnival that went on for quite a few years but has been discontinued. If you’re a blogger considering hosting a blog carnival, it takes some work but it’s also a lot of fun.

If you’ve never submitted a post to a blog carnival, now is the perfect time. I look forward to reading and sharing your work.