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5 things I learned at AHCJ12

Inspired by Bill Heisel, here goes:

1.  Sometimes, you can go home again.  It’s been several years since I attended AHCJ, due to budget cutbacks when I was at the Univ. of Washington.  With my new job at Seattle Children’s, we each have a small budget to travel, “learn and grow.”

I’m grateful that I had the chance to attend, and reminisced with health journalist Joanne Silberner (former health policy correspondent based at NPR’s flagship in DC) about going to the second AHCJ conference ever, also in Atlanta but held on the grounds of the Emory Conference Center Hotel. A man who I randomly met and chatted with on the plane on the way to Atlanta was floored to hear that she was on our plane; I introduced the two of them after we landed. He said that she was missed and that “we” needed her back on the air.

I remember running around the Emory grounds at that meeting with Daniel Yee, former (I think) AP reporter.  That was back when I was a bona fide journalist.  This time around, I’m in public relations.  I’m a flack, as Scott Hensley said at one of the sessions. (He didn’t mean this in a derogatory way.)

The setting this year  was not so woodsy and definitely “city-esque,” with a Hard Rock Cafe right up the street and places blaring loud music.  I know – I’m a former music critic but even I don’t like loud music, especially when it sounds like karaoke.

Some 600 people attended, which may or may not be a record. It was impressive.  I enjoyed meeting new journos, touching base with journalists I’ve only emailed with of late and seeing former D.C. colleagues like Shelly Gehshan (Pew Children’s Dental Campaign), Bill Erwin (Alliance for Health Reform) and Peter Ashkenaz (HHS).  I learned that Peter is no longer with CMS.  Silly me.  We keep in touch via email and Facebook, and mostly talk about music.  I now know that he’s in the Office of the National Coordinator for Health Information Technology and the meaning behind the windshield photos he posts on FB.  I know that Dan DeNoon of WebMD fame has a cabin in the mountains, with a family of foxes living underneath said cabin.  Andrew Holtz and his wife are moving to a houseboat – not in Seattle, mind you but in Portland, rather.

2.  Social media should be fun.  I went to two helpful social media sessions.  One from Matt Thompson at NPR, which was kicked off with Bonnie Raitt’s “Something to talk about.”  People are talking, talking about people.  Social media is a conversation.  The new goal is to Master the Conversation.   He’s so convincing, he even got Tom Paulson to drink the kool-aid, so there’s got to be something to what he’s saying.  Matt used Ta-Nehisi Coates of the Atlantic as someone who’s mastered the conversation, on race and culture.  He responds to comments on his blog posts, and treats conversations as valuable as his work.

Transform your rolodex into a network, says Thompson. Take the best of it to feed further reporting.  One example – NYT op-ed questioning shaken baby syndrome, doc who reads Commonhealth (site in Massachusetts started by two journalists) says this op-ed is irresponsible, critiques the op-ed.  Story continued on Commonhealth and went back to NYT, made its way into NYT magazine cover story.  Shows the potential benefit.

Re: being fun – this conversation mostly occurred in another social media session with Maryn McKenna, Scott Hensley and Serena Marshall, who said make sure you’re having fun with social media.  If you’re not having fun, take a break and come back to it.  McKenna said it’s okay to be promotional with social media, but if that’s the only thing that you do, people notice really fast and it gets boring. Marshall said for every 5 to 8 professional posts, share something personal.

3. I should take my flipcam with me everywhereMark Johnson, senior lecturer at Grady College of Journalism and Mass Communication at the U. of Georgia, led a helpful session on video, the right way.  He looked rather bookish but kicked off the session by encouraging attendees to vote for his brother’s band, who was in a contest in New York (but we couldn’t actually vote because the contest was closed; they sounded somewhat like the Cranberries).  Johnson said that the audience is not yet ready for video.  But we need to be prepared now.  Five years from now, if you don’t have video, you’ll be crushed by the competition.

Think about video as one component, not the entire story.  The click away rate on videos is stunning.  You have six to 10 seconds to hook someone with video.  85% of viewers are gone in 10 seconds if you don’t have the hook.  Page views are a dying metric.  As technology gets more sophisticated, time on the page is more and more valuable.  Johnson said he doesn’t want music in news stories because it influences the story and can be deceptive.

4.  The ways of communicating with journalists has expanded.  I use Profnet and HARO (Help a reporter out) at work, and recently signed back on to Twitter.  When I was at the UW, I launched the Twitter and several Facebook accounts.  I went through withdrawal when I left UW and started my new job and recently found my way back to Twitter, when I started looking for contact info for journalists and found their social media handles. Maryn McKenna said that social media has pretty much replaced Profnet and HARO for her.  PIOs will see my post, she said.

5.  Coincidences happen. (sung to “Accidents will happen,” by Elvis Costello)  I had lunch rather randomly one day in the hotel restaurant.  I say “random” because I can often be indecisive and what I ended up doing that day could have gone either or any way.   Conference burn-out always sets in for me, and I need some alone time.  I almost bought a salad, again, at the deli and took it to my room to eat.  But I decided instead, quite decisively, to sit down in the restaurant and have something hot, maybe even something with fries.  (Color me bold and outrageous.)  I was way over-teched out at the conference, and immediately looked at my phone – Twitter, Facebook, what’s on my email.

After a few minutes, a man at the next table said, “Mary Guiden.”  It was Harry Joiner, a friend and former grad school buddy that I hadn’t seen in 15 years or so. Un-f-ing real, omfgg type of surprise.  Seriously.  One is a million is how he described it later.  He was meeting with a client who just happened to be at the same hotel, at a different conference.  He saw my name tag, but I’m pretty sure if a few more minutes went by, I would have recognized his voice because it is so distinct.  Harry and I were pretty close in grad school at the Univ. of S. Carolina, even though I was only there for a little bit more than a semester.  He was coming off a punk rock band phase, and he was from Georgia.  He was humorous, sarcastic, goofy, fun and kind.  We were in different language tracks (me – French, Harry – Portuguese), but still bonded.  In one class, I remember Harry sitting behind me and every morning, he’d take a sip of his coffee.  “Aaaah,” he would say after swallowing that sip, and it always made me smile.  It’s reminiscent of a Seinfeld episode, too.

Anywho – it amazes me that I had this million to one meet-up in Atlanta.  I think the Universe, or God, or whoever you believe in was perhaps keeping an eye out for me.  My boyfriend broke up with me shortly before that conference and ever since then, little signs of positivity have been coming my way to remind me that I’m on the right track, that life is good, that it can in an instant bring a surprise like Harry Joiner right to me, to make me smile, to remind me that I’m pretty great, too.  (Thanks for that, Harry).  As he put it:  You look awesome; he (ex-boyfriend) does not sound awesome.  End of story.

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body cancer health Life Me Seattle

Follow-through

I finally called Seattle Cancer Care Alliance to discuss the less-than-great visit I had in March.  Yes, it took me nearly six months and I have no real explanation as to why it took me so long.  Friends encouraged me to do so when I relayed my story over these months, and I thank them all – including Twitter friend Mary Beth at Overlake – for the encouragement.  She also shared her cancer story via a more public blog earlier this year.

wristband for doctor's visit
Remnant from March 2011 visit

SCCA does not currently have an online form for sharing a concern or complaint.  On the day I decided to call last month, the patient relations rep was out of the office.  The back-up person offered to transfer me to someone in compliance (a person I know through work), but I said I would call back the next day.

The next day, I spoke with the rep.  She was kind and a good listener.  I felt like she said, “I’m sorry” too many times, but perhaps that is part of the training.  I stopped her after a few of those and said “thanks,” but really, there is no need to continuing to say “I’m sorry.”  She took careful notes and I told her that I didn’t have a problem with my identity being shared.  I also told her that what happened disturbed me because of my work in media relations.  I talk with patients on a regular basis and help share those stories with the media … and I believe in our system and our physicians and healthcare team, but my faith had been shattered a bit by this experience.

The rep told me that at the very least, I would receive a letter and that I might receive a follow up phone call.  I felt good just in sharing the long-overdue story and hoped that it would help the next patient.

This was a few weeks ago, and at the start of this week, I started to wonder when I would hear back.  I’ll probably just get a letter, I thought, given that I had waited so long to call.  Then, today, my phone rang and I saw that it was a SCCA connection.  But I’ve been working with several staffers there on different projects, and assumed it was one of them calling.

“This is Connie Lehman, is this Mary Guiden?”  The reason she was calling still didn’t register.  I know Dr. Lehman as a big-deal doctor, UW professsor of radiology often quoted in the media.  We were on an email string to plan a Twitter chat later this month.  Connie was in Uganda, someone had shared, on a trip related to the Gates Foundation and a new clinic opening.   Julie Gralow, who is also at the UW/ SCCA had been there a few weeks ago.

Dr. Lehman asked if we could chat or set up a time to talk about my recent call. My notes had come her way via one of the medical directors at UW Medical Center.  Wow, I thought.  My concerns were really taken seriously.  She recapped some of what I had shared and I provided some additional details, including that the scheduler was the person who had said one doctor would be there on the day of my biopsy, and then the doctor was not there.

Dr. Lehman explained that feedback like mine is important, and was shared with the entire team.  She said that they have weekly meetings and that this type of feedback is discussed there, too.  She said, “I’m sorry” a few times, but it felt genuinely sincere and heartfelt.  I almost teared up a few times, just recalling how scary and horrible the experience was and recapping parts of it for her.  I admitted that I might have freaked myself out a bit, too, by reading my medical chart while waiting to be taken in for the biopsy.

She said that the technologist or someone on the team should have been talking with me or paying attention to me the whole time.  I told her that wasn’t the case, until they noticed that I was crying and that by then, it was too late.  She acknowledged the vulnerability that patients feel when having that particular biopsy done, and how someone should talk them through it.  Dr. Lehman said that if I ever have any questions in the future that I should contact her.  And she said that this is not the way visits typically run.

I am hopeful that what I shared will be useful for future patients.  I won’t wait as long if there is a next time in terms of a not-great experience.

Oh, and I went in just a few weeks ago, too, for a six-month follow up.   I’m all good, nothing strange to be seen on the mammogram.  So I’m good until my next visit and will hopefully then return to once-a-year or whatever the schedule may be.

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beauty body health Life Me

Love the Lauren

I look forward to the Sunday New York Times for several reasons, and the Styles section is perhaps the first one that I go to for interesting pop culture-related features and trends, celebrity & interesting people profiles (recent one on the Zappos.com founder, Tony Hsieh), the Modern Love column and Wedding stories.

This recent wedding recap made me smile for some of the details – she wasn’t interested, then learned he had sold a company for $10 million and decided to perhaps take a second look.  I don’t know that I blame her but umm, yes.  Interesting details.

Anyway, I love the Styles section, too, for its full-page Ralph Lauren ads.

Western blouse with fancy skirt - Ralph Lauren spring 2011
courtesy of the NYT

It is often the first page that I turn to, to see what the stylists have created.

The colors are gorgeous, the outfits fabulous yet often down-to-earth, and I even went searching for a fancy blue dress last year after spotting the ad, only to see its price tag was more than $1,000 and definitely out of my price range, unless it shows up on eBay at some point.

The spring 2011 collection has a Western theme, maybe going back to retro Ralph Lauren in a way, as my friend Lisa recently remarked.  I sort of recreated the outfit to the left before even seeing this ad, mixing a J Crew bright blue gingham blouse with a pink taffeta skirt (also J Crew, from the outlet store). It’s a great look, I must admit and it makes me feel quite spring-y and optimistic (thanks, Lisa).

Here’s another example below, from a Women’s Wear Daily spread of the runway show.  Even though I lived in Colorado and dig cowboy boots, I wouldn’t necessarily say I’m into Western gear and clothing … or maybe I am, actually.  I love what Ralph Lauren does with this collection, mixing up the rugged and feminine, and keeping it sexy.  Hopefully I can recreate some of these looks, find them on sale, hiding in my closet, etc.
Ralph Lauren model on the runway - spring 2011 collection
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beauty body cancer friends health Life Me Seattle Uncategorized

Finding needs more study.

We recommend that you have further images taken. The letter was dated March 17, 2011 and came from the Univ. of Washington Medical Center/ Seattle Cancer Care Alliance (SCCA).

I received it on the next day, Friday, and wasn’t sure what to think.  I’d gone for my annual exam earlier in the week, and my ARNP had suggested getting a mammogram that same day. I hadn’t done the usual prep (no lotion, no deodorant), so maybe that’s all that this was about.  I’d never had an abnormal read before on a mammogram and had no family history of breast cancer, yet the letter and what it could mean made me feel quite anxious.

I booked an appointment for Tuesday, March 22. Further images were needed of the left breast, I learned. Calcifictions, or small bits of calcium, were present and the doctors wanted to take a closer look.  The radiology tech took three or four mammograms, and then I went back to a room to change out of the robe, and back into my clothes.  A little while later, someone came and took me to a room, and said the radiologist would be in to discuss the results.

I didn’t ask for reading materials, so I looked at my phone.  Then, I looked on the desk in the office.  There were pamphlets under a box of kleenex: Breast core needle biopsy – instructions for care.  That didn’t seem like a good sign. I waited.  My boss called, forgetting that I was at my doctor’s appointment.  It was a short call, interrupted by the staffer coming back in to say the doctor was on her way.

The radiologist came in, then, accompanied by a resident.  My first thought was, “Oh, great. I have something unusual and people are now interested in my case.” But working in an academic medical center, I should have realized it’s part of the training situation.  The radiologist was young, blonde and sporting knee-high suede boots.

She said, yes, that they wanted a biopsy of the calcifictions.  It wasn’t anything that looked like cancer, like some calcifications do, but they just needed to rule that out.  They had an appointment available in one hour, or I could come back later in the week.  She said there was no rush to stay today and have the biopsy.  She gave me the pre-biopsy instructions and asked about medications I might be taking, including ibuprofen on a regular basis.  “You’re too healthy,” she said, with a chuckle and a big smile.  The resident smiled and laughed, too.

I opted to come back on another day, and would hopefully see the same doctor.  After the appointment, I called and emailed my friend, Elizabeth, who had lost her son to cancer. She immediately offered to take me to my appointment. “Oh, I was just going to walk over,” I said.  “This is not about transportation,” she replied. “It’s moral support.”  Won’t you be fired for being gone for hours, I asked.  “I run this place,” she said.

When I talked with her later on the phone, I said that it might scare me if she came with me. “This is about me and not you,” she jokingly admonished.  I appreciated that so much, later on.

My appointment was scheduled for Wednesday, two days after the second set of mammograms. I had dinner with girlfriends the night before, and decided I would limit who I would tell until I after I got the results.  My parents were in Florida, for example, and I didn’t want to freak them out unnecessarily. We didn’t talk about personal things all that often, so it was better just to wait.

But at dinner that night, my friend L said she had to go in the next day for a repeat mammogram.  I decided to spill the biopsy beans.  She was going in for the right breast and me, for the left.  We decided to send each other positive boob karma from opposite angles.  We promised to text each other the next day and to keep our other dinner buddy informed. Her appointment was at 8 a.m.

I told two people at work, and they both had stories of either having to go back for a repeat mammogram or even a biopsy, or friends who had gone in for the same procedure.  One friend had cancer, said my boss, but they caught it early, which is what is important.  I started to wonder if skipping last year’s mammogram in support of new public health guidelines was the right thing to do.  Was this my punishment for being a health policy wonk?

Elizabeth picked me up at work on the 23rd a little after noon. My appointment was at 12:30, close by at the SCCA.  We joked a lot beforehand and I recapped the latest 30 Rock episode that spoofed reality TV shows and portrayed Alec Baldwin’s character as being gay. I am always after Elizabeth to watch that show, and I was happy to have the distraction of sharing silly stories.

When I was called for my appointment, I changed into a gown that opened in the front.  The physician/ resident came in, introduced herself and talked me through what would happen. The procedure sounded different than what the radiologist had explained, and I wouldn’t be seeing the same doctor that day (even though I’d been told she’d be there when I called to make my appointment).

I would be lying facedown on a table, with my breast hanging through a hole in the table. The table would be elevated high above the providers’ heads, so that they could do their work. My breast would be placed in a mammogram-ish device, a few more slides would be taken and when it was time for the biopsy, I would first get a shot of lidocaine to numb the area, and then they would go in and take out the cells to study.

After the procedure, they would place a titanium clip in the spot where they took out the cells, to mark the spot in case it did end up being cancer. Titanium in my breast – I guess that sounded sort of cool.  The doctor said it wouldn’t be detected at the airport or cause problems in metal detectors. She asked if I wanted any reading material, and I said no, that I was okay.

After she left, I began to read my medical chart.  The words and writing I saw began to make me nervous:  suspicious abnormality, UOQ, amorphous calcifications measuring 18 millimeters, overall assessment – category 4, suspicious.  I began to cry.  I also felt a little miffed when I read: Patient preferred to return for biopsy on a subsequent day, and was given instructions for scheduling the biopsy.

It would have been nice if the doctor had written: Patient was told that there was no need to schedule an immediate appointment.  Instead, what she had written made it sound like I should have stayed for a biopsy that day, and decided to leave the clinic.   Having shed a few tears, I was then led into the room where I’d have the procedure.

I asked the tech on the way in about UOQ.  It means upper outer quadrant, the place that they’d be targeting to grab those unknown cells.  I never realized that I could get so upset over a medical procedure and related unknowns, and it probably didn’t help that I had scoured my medical chart and saw all the scary words, without any real explanation.

My mammograms were in one of those viewing device things on the wall when I came in, probably for last minute review and to make sure they were targeting the right area.

I got up on the table and got into position.  It wasn’t comfortable, but it also wasn’t so bad.  What was bad, though, was when I was clamped into place, heard people come into the room, stand in the general area of the mammograms, talk … and I couldn’t hear what was going on.  My head was turned to face the wall, so all that I could see was a generic print or painting.

Tears began to stream from my eyes again.  I heard more talking but couldn’t make out what they were saying. Of course, the imagination goes to work.  “Are you trying to figure out which area you’re targeting?” I asked.

One of the doctors came over and spoke with me.  He saw that I was upset and a little while later, they had one of the staffers stand up near the table by my lower body to talk with me and to calm me down.  She placed her hand on my shoulder, which helped.  Why didn’t they just do that from the start?  I suppose they didn’t know that I would completely freak out.

I barely felt the lidocaine injection, but did feel a splash of cool water on my breast.  The resident mentioned the needle going in deeper and that I might feel something stronger, but I didn’t.  Phew.  Then some device sucked out the cells that they needed to study.  Again, I didn’t feel anything.  I should have felt comforted, but I still was very upset.

Dr. G. came around the side of the table near the wall, and he said that they got everything that they needed.  “How did things look?” I asked.  On a scale of one to 10, where one is nothing and 10 is not great, he said he thought my cells or the calcifications looked like a three.  That was pretty good, I guess.

I kept crying while the tech and some other staffers helped me sit up and tried to stop the bleeding in the biopsy spot.  One woman said, “Oh, there’s no bleeding.” But then, when I sat up, it started bleeding again.  “Do you usually bleed a lot?” she asked.  “Well, I’ve never cut my breast before,” I said.  Seriously, what kind of question is that?  It made me think: Oh, it must be a bad sign if the bleeding doesn’t stop right away, even though it probably didn’t mean that at all.

Steri strips, or really skinny thin white bandage-y material, were placed across the small wound.  I was given a cute little round icepack that could tuck into my bra, too.  The tech took a few more “soft” mammograms (no serious squishing) and, then, I was done.  This tech, Tara (I think), was the person who had put her hand on my shoulder and tried to comfort me when I was past the point of no return in tears.  It did help, even if the tears continued.

She offered optimistic words and said that what Dr. G. had told me (three on a scale of one to 10) was not something he said to everyone.  I suppose that made me feel a little better.  Results would come within two days.

I changed back into my clothes, and tucked the cute little icepack into my bra. Tara had mentioned re-freezing it and keeping it on my chest until the early evening. “I’m going back to work,” I told her, and that would make re-freezing tricky (and probably scary for co-workers).  “Really?” she said.  “That’s the first time I’ve heard that, but I’m not surprised with you.”  Wow. Even after all of that crying, she could sense some strength.  Interesting.

Back out in the waiting room, Elizabeth convinced me to not go back to work. It wasn’t that hard, considering I felt like I’d been crying for the last hour and could probably use some rest. And my freezer would be nice and close for the icepack.  I wasn’t really sore. That wouldn’t come until a week or so later, amazingly.  I even went on a yoga retreat that weekend, and didn’t feel any pain.  The post-biopsy instructions, after all, said no strenuous exercise for 24 hours.

Two days later, the day that I was leaving for the retreat on Whidbey Island, I got the call. “Benign,” said the SCCA staffer.  I figured it was a good sign that I didn’t hear directly from the doctor.  She said that they wanted me to return to clinic in about six months for another mammogram.  I felt so relieved, more than relieved.   Despite some recent heartache, at least I didn’t have cancer.  I have a healthy body that is strong enough to do yoga (do I sound like your yoga instructor?) and friends and family who love me, and a pretty darn good life.  Those are all things to concentrate on for the moment and in those future times when I struggle with the “what ifs” and “why didn’t this work out?”  Just remember:  HEALTHY.  BENIGN.   NO NEED FOR FURTHER STUDY.   I AM FORTUNATE.  AND GRATEFUL.  Yes.