Walk Like Naomi Campbell

NaomiWalkI waited until I was absolutely sure and I told my parents.  They used the power of positive thinking (or maybe just denial)  and said that I should definitely make an appointment to follow up with Dr. O but that it was probably nothing.  Just swelling from the surgery or something.  There was no way this thing could have come back a third time.  That was crazy.

So I made an appointment.  After I was settled in to my exam chair and he and his medical transcriptionist were ready I took a deep breath and told him that I was beginning to have recurring symptoms and that I felt my tumor was back and then sat back to hear his thoughts.  I knew that to be sure we would need to schedule another MRI.  It was the best way to visualize the tumor and to see how far it had progressed.  But to my surprise Dr. O did not want to schedule a scan at all.  He looked down at me with a smile that parents give their children to reassure them that there are no monsters under the bed.  “Miss Fahs, I’m sure what you are experiencing is simply the pressure from swelling inside your sinus cavity and your gel-paks.  There’s no reason to be concerned that your tumor has come back.”

“I’ve been rinsing my sinus cavity every day and I know it takes three weeks for packing to dissolve.  We are at week four.  Most of that should be out of my system by now and wouldn’t we expect any swelling to be subsiding?”

“hmmmm.  You could have some build-up in the sinus which is causing the pressure.  Let’s debride the area shall we?”

For those of you who do not know what debriding is, it is basically where your doc threads a small tube up your nose with suction and cleans out your sinus cavity.  I had a flashback to a month ago when he had looked at my MRI which showed a recurrent tumor that he had misdiagnosed as swelling and packing and just like today he proceeded to debride my right sinus.  It had been painful.  He had removed some gel-paks first that were still in my maxillary sinus and then clamped down on one that was evidently “stuck”.  When I finally started having a nose bleed I asked him to stop.  What I realize now is that the mass “stuck” in my sinus was my recurrent tumor.

As Dr. O advanced on me with that instrument in hand I instinctively shrank back.  I think I even put my hands over my face to stop him.  If my tumor was back no amount of debriding was going to cure it and I also had a fresh brain graft.  It had probably healed by now but I didn’t think that poking at it with a suction device was going to be particularly productive.

I shook my head vigorously back and forth, “No. No. No.  I don’t want you to do that.”

“I’m sorry?”  He stopped and looked at me, shocked.  I immediately felt my cheeks flair up in embarrassment and I stuttered.

“I, I just don’t want you to do that please.  It makes me nervous, with my graft and everything, I just don’t want to risk it.” He looked at me with what I can only guess was exasperation and my face continued to flush with embarrassment and discomfort.  You were not supposed to tell your doctor what to do.  He was the one with the training and years of school.  But in this case I felt really uncomfortable.  I was afraid that in this instance he could do more harm than good. Not intentionally of course. I knew he thought he was doing the right thing.  But I didn’t agree.  And wasn’t it my call since it was my body? Was I allowed to say no?  His reaction did not make me feel that way.

“Okay, that’s your decision Miss Fahs.” He snapped.  “If you have no further questions you can make an appointment with Deb for six weeks from now for a routine follow-up.” And then he quickly started to gather his things and leave the room.

I was surprised, “Are we not going to scan it to make sure that my tumor is not back?”

He turned and looked at me a little annoyed, “Miss Fahs you can only have so many scans in a lifetime before they start doing damage to your body and you’ve had quite enough this year wouldn’t you say?”

This confused me.  I knew CT and X-ray were bad for you if you had too many but to my knowledge an MRI posed no significant risk. I didn’t want to be annoying but I pressed the issue using a line I had read on all my literature for the prescriptions that I was taking, “Isn’t the risk posed from another scan lower than the risk of a third recurrence? Shouldn’t we find out if it’s in there?”

“Miss Fahs, even if your tumor has recurred, which I doubt that it has, your body could not handle another surgery right now.  Why would we need to find out about something that we could do nothing about?”

Now I felt even more confused.  Again, the risk of the surgery would seem like the lesser of two evils if this tumor was coming back again.  Why would we not want to know for sure?  Was I missing something?

“So we’re not going to scan it?”

“Nope. Sorry, no scan today.”

And I just sat there in the exam chair. Confused. And angry. And upset. I tried not to cry but there was a lump in my throat and my eyes were tearing up.

Dr. O noticed the distressed look on my face as he was leaving the room and said, “You’re overreacting Miss Fahs, your tumor is not back, and as your Doctor it’s my job to make sure we don’t put your body through any more unnecessary stress.  No scan. Okay? Go home and relax.”

There it was again.  The “just relax” speech.  This guy didn’t believe me.  He thought I was overreacting.  He thought I didn’t know my own body.  Of the multiple emotions that I was feeling at that time I felt determination slowly begin to take over.  I made a final decision and then I set my jaw the way my dad does when he is about to give you “the stare,” took a deep breathe in, pushed my shoulders back (trying to look poised) and stood to my full 5’8’’ height.  I also had heels on which made me almost a head taller than Dr. O.  Have I mentioned I love being tall?  Such a confidence boost to be able to be at eye level with someone or in this instance a little taller when you need to be assertive and strong.  I shook his hand and said, “Thank you so much.  Have a pleasant evening.”  As I turned to go Dr. O piped up, “You’re very welcome Miss Fahs.  Oh and don’t forget to reschedule with Deb down the hall.”

I smiled at him not saying anything then turned quickly to go.  I strutted like Naomi Campbell down that hallway and I didn’t slow down when I got to Deb’s office I kept going straight and out the door.  There was no need to stop and reschedule another appointment.  I had made up my mind, Dr. O was not my doctor anymore.

I’ll take another break here from the narrative to emphasize once again that you are your own best advocate when it comes to your health.  If you disagree with your doctor or are unsatisfied with your care then do not hesitate to go see someone else.  Especially if you have a unique or chronic condition.  I have had a spectrum of reactions from specialists once they hear my medical history.  Some are intrigued, some are uninterested, and others look like Bambi staring into the headlights.  You and your health care providers have to be compatible.  Most importantly You need to be able to communicate with each other.  Both sides have to listen, take in all the information and then as a unit, you decide what to do.  (sound similar to relationship advice? it is.) 

Dr. O is a fantastic ENT Surgeon and I don’t think that my experience is a reflection of the type of doctor he is.  We simply were not compatible and I felt that my needs as a patient were not being met.  As with any bad relationship, it was time to break it off and move on.  I encourage anyone who may also be going through this to have the courage to do the same.  It’s your body, it’s your life, and sometimes you may have to strut out of a few offices never to return in order to find the care that you deserve. And  that’s ok.  Just make sure to be polite but be demanding…and most importantly never ever ever give up.


4 thoughts on “Walk Like Naomi Campbell

  1. Pingback: Walk Like Naomi Campbell | The Chronicles of Mayo

  2. It’s so hard to know the difference between a doctor who isn’t hearing you, and one who hears you and is correct that you’re OK. I’ve had to fight a few times to get scans moved up when I started having recurrent symptoms – successfully, so far – and while I’d like to think I’d have the courage to walk out of the room if the time comes, I don’t know if I really could.

    This is such a great blog for survivors to read, but I hope that there are oncologists reading it as well. Sometimes, following the “reasonable” path will get your patients dead. Knowing the difference between a hypochondriac (and tumors make hypochondriacs of us all) and a patient who is correctly reporting extraordinary symptoms has got to be one of the hardest skills for an oncologist to pick up.

  3. Eryk I completely agree that “tumors make hypochondriacs of us all.” I am constantly assessing how I feel and trying to make sure that my decisions are based on a rational assessment of symptoms and not a knee jerk reaction of panic. I have moments all the time where I go into a reflexive tailspin “My head hurts! It must be the skull crushing hemangioma!!! Back again to terrorize my skull base! MRI! CT! Beta Blockers! Stat!” I then have to take a deep breathe, slow down, and really examine how I feel. I also agree that being an oncologist that has to deal with someone like me, who is on edge all the time, and decide whether I can rationally assess my own symptoms or if I’m just overreacting is definitely a tough job. It’s why I encourage people who are sure that something is wrong (because deep down we usually just know don’t we?) to be persistent. Oncologists will most likely follow the reasonable path because statistically this is what applies to the greatest amount of patients. And statistically this is what’s best for the system at large. As an extraordinary patient, you must effectively communicate that you are not part of the system at large. You need care that is unique and specific to you. You are the 1%. (btw There must have been some confusion when the fates where picking teams. I think I was supposed to be a part of that other 1% with all the cash? No? Ok.) Sometimes this can be difficult to get across but it does not mean that you should back down. Keep pushing forward. Thank you so much for your comments and for reading.

  4. Wow. Congratulations on doing that! I feel good just getting ready to whomp an endocrinologist with information showing that her blowing off my questions was incorrect, and that I did, in fact, know what I was talking about (even if I could have been wrong – tell me I’m wrong, and why, don’t blow me off!), and if she had no better plan than “keep doing the stuff that ain’t working”, it was time for us to part ways.

    I agree – sometimes, it’s not a reflection on your doctor. I’m sure the person I’m dealing with is a *fine* doctor as well, but there needs to be trust.

    I do sympathize just a tiny bit on his reaction: “why scan when we just couldn’t take any action anyway?” But hang it all, you have every reason to want to *know*. And he could have laid out a plan that would convince you he was right, or prove that he was wrong. That always seems like the most reasonable thing to me.

    I was studying abnormal psych, and I loved one study result I saw. You get someone who is insisting they have malady_x, in spite of evidence? If you sit them down with a trained therapist who goes over the tests in excruciating detail, showing that it *can’t* be malady_x, it “cures” them (of the insistence they have malady_x). People aren’t irrational (well, not most of the time!) about these things. What would be better would be someone who could say “X, Y, and Z fit better; these are the doctor-types you need to talk to.”

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