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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.

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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.

Finding needs more study.

7 Apr

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.