Monthly Archives: April 2016

Caring Beyond Rules

CaringI had an ultrasound yesterday.  I have one every 6 months now to check my thyroid bed and the lymph nodes in my neck.  In between ultrasounds I try to focus on the future and not dwell on my cancer experience.  But when it gets close to my next ultrasound I’ve noticed a stirring of my emotions, especially fear, which turns into a bit of hypochondria.  I start to worry about lumps and bumps, wondering if they’re cancerous.  I wonder about what’s going on with my lymph nodes (thyroid cancer commonly spreads to the lymph nodes).  I book the appointment as soon as possible after I get the test order from my doctor because I just want to get it over with.

Yesterday I was lying on the ultrasound technician’s hospital-style bed while she moved the ultrasound wand all around the front of my neck.  At the beginning of our appointment we were chatting about new mammogram technology, and about how physically demanding her job is – especially because that same day she’d had to do an ultrasound on a 500 pound man.  That procedure required her to push the wand through layers of fat, move gas pockets, and attempt to get clear images of the site to be tested.  It was nearly impossible.

As my ultrasound procedure continued, the technician began focusing on the monitor, typing, and taking measurements of the lymph nodes in my neck.  She grew silent, our conversation stopped, and the only sound in the room was the tapping of her fingers on the keyboard and an occasional loud beep from the machine.  It’s in these moments that my fears take center stage.  My mind races, wondering what’s showing up on the screen.  What do the measurements show?  Is that bad?  My world suddenly becomes enclosed in the 4 walls of the ultrasound room, and it feels like my fate is in the hands of the ultrasound technician.

My ultrasound technician yesterday was obviously used to this kind of tension, and was aware that the procedure can be worrisome for patients.  She finished one side of my neck, and before she switched to the other side she looked at me and said, “Well, I’m not allowed to say anything, but…” and gave me the thumbs up.  I relaxed a little… one side was good.  The cycle repeated itself during her examination of the other side of my neck, and once again at the end of the examination she gave me the thumbs up.

I very much appreciated the humanity and caring my ultrasound technician extended to me yesterday.  I understand the radiologist has to interpret the results and the doctor always wants to be the one to give the patient their results, talk through any issues, etc., but the ultrasound technicians are the ones that see tumors, cysts, nodules, fluid accumulation, enlargement, strange shapes, and so on day in and day out.  They know what problems look like.  The technicians are silenced by rules and policies, but I’m certainly glad my technician sidestepped that for a moment and reached out to comfort a fellow human being.  I’m grateful for the peace of mind.

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If you’ve had someone surprise you with comfort, I’d love to hear about it.  Please leave a comment.

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Listening Over the Din of our Inner Monologue

Inner monologueHave you ever walked away from a conversation with a completely opposite opinion of what was said than another person in the same conversation?  I know I have.  When I’m aware of the differences I feel fortunate because I have an opportunity to figure out why we have such a different understanding.  When I’m unaware of the differences I fear I will appear or actually be ignorant.  That bothers me.

Today I got to observe a conversation between two people where I knew they had opposite opinions of what was said.  A Dad doesn’t believe that his son should have a gluten free diet, despite his son’s regular doctor and a gastroenterologist recommending it (the son’s Mom initiated the testing and conveyed the results).  The son is gluten sensitive.  The Dad scheduled a visit with the doctor to hear first-hand why the doctor was recommending a gluten free diet.  The son is gluten sensitive according to a blood test and his symptoms, and genetic testing shows he is predisposed to develop celiac disease.

The Dad talked to a nutritionist at his work who said the blood test doesn’t mean anything, and eating everything in moderation is appropriate for the son.  This confirmed the Dad’s belief that gluten sensitivity is hogwash, which was exactly what he wanted to hear.  Yet the Mom kept pushing the issue and asking that the son be on a gluten free diet.  Hence the visit to the doctor.

The Dad wasn’t at the appointment to listen to the doctor, he was there to confirm that his belief was correct.  You hear very different information when your perspective is biased to begin with.

The doctor did a great job of explaining what gluten sensitivity is, how it affects people, and why it is important to avoid gluten, especially if you’re predisposed to develop celiacs disease.  He put forth a great analogy: if you’re an otherwise healthy teenager who smokes cigarettes your lung scans will show up fine and all markers will say you’re healthy, but we know smoking cigarettes isn’t healthy and can lead to lung cancer and a host of other diseases.  Eating gluten when you’re gluten sensitive is the same way – the signs may not be obvious right now, but in the long term you are causing inflammation in the body and contributing to future health problems.

The Dad was adamant that his son’s sensitivity is not a condition that requires treatment.  He believes “moderation” of pizza once or twice a week and sandwiches for lunch every day at school is fine, as long as he is aware of the sensitivity and “tries” to reduce the amount of gluten the son eats.  He asked the doctor if there was a certainty that gluten should be avoided.  The doctor answered that there wasn’t a certainty, but his recommendation to eat gluten free was based upon science and research that showed the risks.  He said if it was his child he would avoid gluten because of the risks.  I could tell that the Dad heard that there wasn’t a certainty that gluten be avoided completely, and he didn’t absorb any information after that.  He wanted to be right.  Once he’d received confirmation that he was “right”, he stopped listening.

I learned a lesson from witnessing this conversation today.  If we can approach issues in medicine, our work, and our relationships with an open mind I believe a whole new world will be opened up to us.  The next time I’m dealing with an issue I will make a conscious decision to be open to all possibilities and to really listen to the information being presented.  I will do my best to quiet that loud, dominating inner monologue of my own thoughts and opinions so the information can penetrate my conscious thought.  Wish me luck!

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A Face to Face Encounter with Advocacy

ConfrontIt takes courage to decide you are going to advocate for yourself.  It takes greater courage to actually do it.  It takes even greater courage to confront someone in person, face-to-face about an issue you promised yourself you would stand up for.  That happened to me this week.

I was due for my annual checkup with my regular doctor, but he wasn’t available until well into May.  The receptionist kindly offered to schedule me with the nurse practitioner who works with my regular doctor.  Since it was a well visit I figured that would be fine.

I showed up at my appointment this week, and to my surprise I had accidentally scheduled my appointment with the same nurse practitioner that had infuriated me at my daughter’s visit to the urgent clinic back in January (you can read about my nightmare visit).  I was caught completely off guard.  I think the me of five years ago wouldn’t have said anything, and would have gone on with the visit like nothing was wrong. I’m not that person any more.  I know I need to stick up for myself when it comes to my health and medical decisions.

Yes, I had been hiding behind the curtain of silence for over 3 months while the unpaid bill sat on my kitchen counter.  The past due notices kept coming as gentle reminders that I should act.  I had debated calling the medical billing office, calling my doctor, or calling to see if there was some kind of manager over the clinic.  But I hadn’t done any of those things.  I’d remained silent, which isn’t bold or courageous or advocating for myself at all.  The bill was about to go to collections, so I knew I would be forced to make a decision one way or another soon.

Soon came sooner than I expected.  There I was face-to-face with the exact nurse practitioner I had promised myself I would never allow to treat me or my family again.  I started with, “Well, this is a bit awkward.”  “What?” she asked.  I repeated myself, “This is a bit awkward.  I met you at the urgent clinic a few months ago, and I didn’t have a good experience.  Maybe it’s better for me to reschedule this appointment with someone else.”

The nurse practitioner’s name was Carla.  I told Carla I hadn’t realized I’d scheduled the appointment with her.  I hadn’t known her name because her name tag had been covered up during our appointment at the clinic.  I pointed out that her name tag was covered up at the current visit too.

Naturally she was quite taken aback.  She was very gracious and didn’t try to get away from me as fast as she could (I wanted to get away from her, so I assumed she would want the same of me!).  Carla calmly asked me for a few details about my clinic visit, and explained to me that she doesn’t have these kinds of problems with her patients.  She was very concerned.  I could tell her reputation was very important to her.  I went through the details of how I had to wait, how the test felt unnecessary, and how frustrating it was to have a test thrust upon my daughter when we had no idea why she was having it.

Carla immediately offered to take care of the bill from that day.  She instantly gained some of my respect back – she showed me she cared and wanted to make this right.  Then she explained that the clinic can be very busy, especially when people come in with complicated cases that don’t belong in the clinic (such as the guy ahead of me who’d just had surgery and had a litany of problems): they take up too much time, and people have to wait.

I told Carla it wasn’t just the wait.  Most of my frustration was because I felt the strep test was completely unnecessary, and we didn’t receive proper information about why Carla thought it was necessary.  Carla re-read my daughter’s chart, then explained that the pink eye was viral (based upon symptoms), and sometimes that is an indicator or risk factor for strep.  She was being prudent by checking that possibility before we left the clinic.  She made me realize that we had a giant case of miscommunication more than anything else.

After we’d talked things through for a few minutes Carla offered for me to reschedule the appointment, but said she would really like the opportunity to continue my well checkup.  She handled herself so well, took responsibility for what happened, was adamant she would take care of the bill from the strep test, and offered me reasonable explanations for her actions and decisions – what more could I ask of her?  I continued my well checkup with Carla, and she was extremely thorough, caring, and competent.  I’m so glad we had the opportunity to talk this through, and my opinion of her has changed 180 degrees.  My accidental scheduling turned out to be a great opportunity to repair a relationship.

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Have you been forced to confront an issue you’d previously been avoiding?  I’d love to hear from you.  Please leave a comment.

Having a Medical Test Thrust Upon You

Several months ago I took my daughter Nicole to the after-hours clinic at my local doctor’s office for suspected pink eye.  We were one of the last patients to be seen that day – there were 2 others behind us when they closed the doors and posted the “clinic full” sign.  Patients had been cycling through the clinic as we waited: they would disappear through the door to the clinic rooms and reappear no more than 15 minutes later.  A patient ahead of us was clearly in bad shape.  He’d just had surgery, was hobbling around with a cane, had a grossly swollen leg, and said the main reason he was there was because he’d had a severe sore throat for almost a week.

We were shown to a room where the technician took vitals, recorded Nicole’s symptoms, and told us the nurse practitioner would be with us shortly.  With only one person ahead of us I expected to be seen within 10-15 minutes.  For 45 minutes we sat in the room and listened to the muted sounds of the conversation in the next room – it was clearly between the nurse practitioner and the patient ahead of us.  As time ticked by I became increasingly more frustrated.  We waited over an hour before I asked the technician when we might expect to see the nurse practitioner.  We were told it should be any minute.  We heard the nurse practitioner come out of the room next door, move to the technician station, then moments later walk back into the room next door.  While the door was still open she announced, “You have strep.  It’s going around.”  The door closed, and the muted conversations continued.

An hour and 15 minutes after we were shown to the room, the nurse practitioner finally came to see Nicole.  She was clearly rushed.  She didn’t introduce herself, her hair covered her name tag so I didn’t know her name, and she didn’t extend more of a greeting than a rushed, “Hi”.  She began typing symptoms into her laptop, but clearly wasn’t listening.  She heard the part about possible pink eye, seemed to immediately dismiss it, then asked a series of questions about sore throats and coughs and fevers.

Nicole had experienced a sore throat, cough, and fever the week before, but all of those symptoms were gone.  The nurse practitioner totally missed the part about the symptoms being gone, and kept asking questions and conversing as if the symptoms were still present.  For example, after we had explained that all of the symptoms were now gone she asked, “How long have you had the sore throat?”  Nicole would say, “I had it for a few days but that was last week”.  On to the next symptom we would go, with the same present-tense question.  I already sensed she was pushing towards strep, which was agitating because I knew she had just seen a guy with strep and that was probably significantly swaying her diagnosis.

After a brief examination the nurse practitioner announced that strep throat was going around and that Nicole needed to be tested.  What???  We came here for pink eye.  How did we end up needing a strep test?  I tried to ask questions but the nurse basically talked over me as she was leaving the room to tell the technician to prepare a strep test.  Minutes later she returned and before I could even interrupt to ask why the test was being done Nicole had a long q-tip looking swab being thrust towards the back of her throat.

FrustratedI was furious.  It is such a violating feeling to be powerless over what is happening to you.  We were completely at the mercy of the nurse practitioner and she was doing whatever she wanted without any explanation or reasoning.  While the test was being processed I was left in the room with Nicole to stew and steam and froth about it.  I became increasingly more agitated and frustrated, so that by the time the nurse practitioner came back to tell us the strep test was negative (let’s just say I wasn’t surprised) I could barely contain myself.  I wanted to scream at her, “OF COURSE IT’S NOT!!!! SHE HAS NO SYMPTOMS AND YOU DIDN’T LISTEN!!!!”  But shouting at people is not the way I like to operate – it tends to have negative returns.

The nurse told us the eye problem was probably viral and didn’t require any treatment – it would heal on its own.  There was nothing further she could do for us, and the appointment was over.  I was fuming that we wasted almost 2 hours on a minor issue that should have taken 15 minutes and no strep test.  I believe the nurse interpreted my frustration as anger that I didn’t receive any medication for the $80+ I was about to pay for the visit.  I was far too angry in the moment to have a rational conversation about what had just happened, or to explain that I’m thrilled when my child doesn’t need antibiotics or other medication.  So we left.  On the way out I paid for the visit, but refused to pay the $48 for the strep test.  The receptionist informed me I would be billed for it, and I told her I had no intention of paying it.

As the hours, then days, went by after that appointment I pondered what to do.  Do I call and talk to the medical office?  Do I call billing and tell them I’m refusing to pay and why?  Do I call my regular doctor and tell him what happened?  Do I just not pay it and let it go to collections?

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What would you do?  Please leave a comment.

Advocating For Myself

Find your Voice

My thyroid cancer diagnosis was a journey, not an event.  In January and April 2014 I had fine needle aspiration (FNA) tests that were inconclusive and suspicious respectively.  By the time I had my follow-up appointment with the second Ear Nose and Throat specialist (who I call ENT #2) I was realizing that my medical treatment was up to me.  I was my own best advocate, and I could not rely upon the medical system and the doctors working in it to advocate for me.  No doctor was going to place me in a higher priority than I would place myself.  Therefore no doctor could 100% tell me what was best for me.  I’d made up my mind that my treatment would be my decision.  It would be based upon my own research, advice of doctors only whom I trusted, and a gut instinct of what was right for me.

I had been taught by ENT #1 that doctors could be profit-driven instead of patient-centered – he was selling me surgery when we had no idea whether or not I had cancer.  ENT #2’s resume was impressive, and he was very pleasant and professional at my initial appointment.  When I returned to discuss my “suspicious” FNA results (which gave me a 70% chance of cancer) his demeanor changed.  I could easily have missed the change, because it primarily came in the form of concerned advice: Why wouldn’t I want my thyroid removed if there was a 70% chance I had cancer and a simple surgery could take care of it?  He kindly gave me the rundown of his surgery availability – he could easily fit me in a few weeks from my appointment.  How about Why would I want surgery if there was a 30% chance it was completely unnecessary?

When I turned the tables and began asking ENT#2 questions about his surgery experience he wasn’t so free with his answers.  My first question regarding how many thyroid surgeries he had performed in the past year was dodged by him telling me how many overall surgeries he had done.  I didn’t even get to my second question about whether there had been any complications from the thyroid surgeries he’d performed.  I’d heard enough.

I knew from my research that if I was going to have a thyroidectomy it was going to be with a doctor who specialized in that surgery.  ENTs commonly perform a wide variety of surgical procedures from tonsillectomies to nose surgery for allergies to ear drum perforation surgeries, and of course thyroid surgeries.  I knew that a good thyroid surgeon would easily estimate the number of thyroid surgeries they’d performed to be in the hundreds or even thousands, and would have no problem directly answering my questions about risks and complications.  I also knew that I wasn’t going to have my thyroid removed until I knew it was absolutely necessary.

Once I knew who I didn’t want to perform my surgery, it was easier to spot the doctor I wanted when I found him.  Once I defined the circumstances under which I would have the surgery, it was easier to push back when doctors pushed towards surgery, and it was easier to submit to the surgery once those circumstances arose.

Realizing I had to advocate for myself was a huge shift in the way I viewed the medical profession, and it definitely changed the way I approached my thyroid cancer.  So did defining my terms.  I empowered myself to say “No” when something wasn’t right for me, to fire doctors when I didn’t trust them, and to relentlessly seek the solution that was best for me.  The solution included doctors, hospitals or surgery centers, second opinions, testing facilities, and insurance coverage.  I pursued them all until I found what was right for me.

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Do you have experience advocating for yourself in your medical decisions, career, or relationship?  I’d love to hear from you… please leave a comment.

Support Through a Diagnosis (Part III)

Continued from Support Through a Diagnosis and Support Through a Diagnosis (Part II)

My boss was supportive.  He allowed me to take whatever time I needed to visit doctors, get second opinions, have and recover from my surgery.  But more than that he always gave me the sense that he had my back: it went beyond me simply being his employee and extended to a deeper level of caring.  He offered to help me in any way he could.

My employees and co-workers were supportive.  The managers in the sections I oversee took on additional responsibilities in preparation for me being out of the office for an extended period of time (it ended up being 4 weeks).  They stepped up and took over many of the tasks I might typically be involved in.  Everyone chipped in and bought me a gift basket full of “surgery care” items: slippers, a blanket, chapstick, makeup wipes, moisturizer and the like.  They presented it to me as a group, showing a united front of support.  It was very touching to be the recipient of this thoughtful group gesture.

Get Well CardMy friend stocked my freezer with several meals.  It was incredibly helpful and very practical.  After my surgery my Mum stayed with me for two weeks and my boyfriend took excellent care of me.  They both helped take care of my two kids, including cooking dinner.  But having those freezer meals was great when life got too busy and everyone needed a night off.  Other friends sent me beautiful, uplifting cards.  My children made encouraging cards for me.

The support I received from my family, boyfriend, friends, co-workers and boss all helped to form a circle of support.  No one form of support was more important than the other.  Each played its part in giving me strength and motivation to press on, be positive, and know I was going to be OK both physically and emotionally.

Do you have a practical way you’ve supported someone having surgery?  I’d love to hear what you did.  Please leave a comment.

When Your Support is Annoying

There’s a delicate balance between supporting someone and being annoying.

As a specieMjAxMy00NWI3OTA2MzIzMDhjZjhis we humans often want to ask dumb questions when we’re trying to find ways to support people.  I realize it’s a social norm, but it’s time that changed.  We need to think much more carefully about how we respond when people experience trauma, difficulty or loss.  It’s time to flip the script so we’re habitually more caring and supportive and a whole lot less annoying.

A friend’s 18 year old nephew was recently killed in a car accident, and she was telling me how everyone kept asking her sister (who had just lost her son), “How are you doing?”  What kind of an answer do we really expect to get from that question?  When you think about it, it is a stupid question.  The answer is obviously, “I’m terrible.  I just lost my son. I’m walking through loss and grief and sorrow and helplessness that you, who are not, cannot fully understand.  I want to cry all the time.  When I’m not crying I’m wondering how I’ll ever feel normal again.”  

What we really mean when we ask, “How are you doing?” to someone who experienced loss, is struggling with medical diagnosis, or is being forced to deal with some other traumatic life event is some subset or combination of, “I care about you. My heart goes out to you.  I can’t fully comprehend what you are going through, but I imagine it is extremely difficult.  I empathize with what you’re going through.  I want to support you however I can.  Perhaps you’re not sure in this moment how I can support you, but please know that whenever something comes to mind I want you to call or text me and let me know what it is.  I want to be here for you.”

So the next time you find yourself about to ask someone who is clearly suffering, “How are you doing?”, think again.  Find another way to show them you support them.

If you’ve been asked a stupid question that really means, “I want to support you”, I’d love to hear your suggestions for what people might say in such situations to actually show their support.

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