Tag Archives: Seattle Cancer Care Alliance

Don’t move, don’t breathe. Don’t move, don’t breathe.

28 Jul

Medical bracelet

Those commands can be jarring and, of course, constricting. It’s what the technician says when you’re getting a mammogram. If I move, will something else show up on the film? If I breathe, will that appear as something abnormal on the test?

While waiting for my results, I heard the technician in the room next door offer similar instructions to her patient. It was probably the woman in the yellow sweat pants and shoulder-length blonde hair. She’d been accompanied by her boyfriend or husband. I was among a handful of women, all of us white except for a woman rescheduling an appointment, at Seattle Cancer Care Alliance that day.

It had been two years since my last mammogram. Yes, that is a confession and I was raised Catholic. I was overdue, I know. But the last time I went, my visit was so traumatic and I still felt a bit scarred, and anxious. I needed a biopsy, which was incredibly stressful. And research that I’d read (and helped to promote by Dr. Joann Elmore of the Univ. of Washington) about false positive exams and the toll that can take … well, I was living it two years ago.

I felt a heaviness in my left breast in the days leading up to this appointment. That’s the one that has a small titanium rod in it, following the biopsy. Writing that makes me want to sing, of course: I’m bullet-proof, nothing to lose, fire away, fire away. I then started thinking that I might be mentally causing some malignancy by having these negative thoughts. The power of positive thinking, it’s important, experts say.

When I booked an appointment, I had the option of immediate results or waiting for them to be mailed. I grabbed the first option, not wanting to go through what I’d experienced before. If something was up, let’s discuss it and keep moving forward.

The technician was great. We talked about traffic on the way to work. Mine was easy, given that I lived right down the street, and even if there was a slow-moving truck in front of me. She had a drive that took more than one hour. I wore a dress to my appointment, not the best choice given the gown you have to change into. She helped me keep mostly covered up in my exposed state. It was just us girls in the room, any way. Right arm out first, and then left, and then repeat for side views. Don’t move, don’t breathe. I asked her how things looked. She said the slides looked the same as the last time I was there (a positive, I thought).

She asked if I wanted something to drink, water, after the screening was finished. I said that water would be great. I needed to stay in my robe and not change back into my clothes, she said, because the radiologist might want more pictures. The water never arrived. My magazine options were US Magazine and a cancer care and research journal. I stayed away from the latter, remembering how I made myself a little crazy the last time by reviewing my medical chart.

The technician knocked on my door and very formally announced my name. It was the same woman who had helped me the day of my biopsy two years ago. She said my slides looked fine, and I could come back in one year. I told her we’d met before, the last time I was at the center. She looked in my chart and said oh, yes, I see my signature here. Of course she’s seen a million patients. But I remember her helping me get through that difficult day. And I was grateful that she delivered the good news this week, too.

Follow-through

11 Oct

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.

Twitter buds.

22 Nov

I am the pseudo … or maybe de facto social media expert in my office and run the Twitter account for UW Medicine News. I started tweeting nearly a year and one-half ago and we now have nearly 1,650 followers. I have fun tweeting, see breaking news before others on the team (Mark Emmert leaves the UW for NCAA!) and connect with reporters and partners in the community.Twitter logo - blue bird

That sounds so boring … but it’s true. And I like trying to be creative in 140 characters or less (incl. the condensed URL) while still relaying serious information/news. If Tom Paulson can do it on his Humanosphere blog, then I can do something similar on Twitter.

A few weeks ago, I was having a bad day.  Boy trouble, can’t make up his mind kind of badness. Tears the night before that wouldn’t stop.   @SeattleCCA sent a comment to me and asked if I was having a good day.  I needed to vent. I felt sad, hurt and I didn’t feel like covering up, even if @SeattleCCA was a complete stranger.

So I responded to @SeattleCCA directly, and said I was having a bad day. Boy trouble.  It helped just to vocalize it, instead of pretending. I could pretend with people in the office, after all, or among the strangers on the street. Megan wrote back, offered support and kind words. I felt silly and smart, because I had been truthful, and it just seemed right.  We exchanged direct messages the next day, when it was a better day for me and I knew, as corny as it might sound, that I’d made a new friend via the social mediasphere.

Megan and I met for coffee today before work. It had snowed and she wore a cute pink and white hat. I had my blue Anthropologie hat on (see Facebook page for details). We chatted about work, boys, Colorado, Texas and upcoming holidays. My boy story has turned around  although, boys being boys, one doesn’t always know what will happen.

We plan to meet up again and maybe grab other Twitter buds (@HutchinsonCtr @SeattleChildrens), too.   I’m of course still glad I shared what I did, even if it could have been totally awkward and even if it made me feel a little silly and equally brave. And now I have a new friend that I know I can count on when I need words of encouragement, advice about work, and stuff – and vice versa.  I’ve read that social media creates barriers and you lose the real people or connections. It only does if you don’t reach out, and keep it real. Yo.   :)

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