‘I Bet You’re Proud You Beat Cancer’

Posted on: March 3rd, 2017 by
16

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These are the words I recently heard from a medical assistant at a neurologist’s office. After providing my extensive paperwork that listed all the medications I was taking, as well as my medical history, this girl was irritating the hell out of me. She kept asking for information that I clearly stated on the medical history form — a form that I was not-so-politely told by the receptionist when making my appointment that I had to bring to the appointment.

In regurgitating my medical story in the five minutes or so she spent with me, I had to relive my breast cancer diagnosis and treatment, as well as tell her about my PTSD medications. Then she looked at me with amazement and said with glowing admiration, “I bet you’re proud you beat cancer.”

I thought I heard it all, but apparently I haven’t. I wish I could’ve told her that I didn’t beat cancer, that cancer had beaten me up pretty badly, and no, I’m not proud of myself. Survivorship thus far is great, but it’s not as easy as some people think.

And no, I’m not okay.

Instead I said nothing and awkwardly looked down at the floor. I was too afraid to think about educating this woman, who probably meant well but missed the mark anyway. My anxiety was understandable — I was seeing a neurologist for the first time.

***

I’ve been having issues with balance for years now, but it’s lately been getting worse. I first noticed balance problems after chemotherapy, and I realize they could have been made worse by psychotropic medications, which started shortly after cancer treatment began. It’s really difficult to pinpoint what exactly is causing me to have balance problems. I can take long walks, no problem, but it’s easy for me to lose my balance. Stairs are scary to navigate because I’m afraid I will fall one day. And with osteopenia, I’m afraid I will break a hip prematurely.

I’m too young for that shit.

So here I was — after talking to the well-meaning-but-clueless girl — talking to the neurologist, who was generally nice. She said that the medications could very well be causing all the problems, but just to make sure I’m okay (did I mention, I’m not okay?), she ordered several blood tests and a (gulp) brain MRI. She kept asking me if my cancer had metastasized and I kept saying “Not that I know of.”

Now I was really afraid.

But I still felt comfortable enough to confide in her. I told her I have never been the same since cancer treatment. And that since treatment, I have felt I’ve aged a lot and am fatigued. And while my problems with balance could be caused by other factors, cancer treatment took a toll on my body and psyche. I saw from her glazed expression that she was skeptical. I was bitterly disappointed, for I realized that many in the medical establishment are in denial over the damage cancer treatment causes.

While the neurologist examined me, she made no effort to realize that she was evaluating a person, not just a medical problem. So I left the office without emotional validation, just an order for blood tests and the brain MRI. I went to the blood lab that day, but I still haven’t yet set up an appointment for the brain MRI.

I’ve balked about the MRI because, frankly, I’m scared shitless. In addition to having anxiety during this test, I’m afraid the MRI will find one or more of the following problems:

* Cancer mets to the brain
* A benign tumor
* Early onset dementia
* Alzheimers
* Multiple Sclerosis
* Brain damage from chemotherapy (which will be denied, of course)

I’m sure there are more possibilities, but I refuse to ask Dr. Google. Talk about a virtual mind-fuck. No second helping of paranoia please.

I will be setting up an MRI appointment as soon as I post this. In the meantime, I will be doing some core-strengthening exercises that a Twitter friend recommended and some mind-strengthening exercises with my psychotherapist.

I realize that one can be afraid and still act anyway. That’s true courage. That’s what I preach in my book, Calling the Shots in Your Medical Care. I need to take a page from that book — OK all the pages of that book — and embrace the flames of courage.

I once again must I practice what I preach.

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Have you ever felt unheard or dismissed by a doctor or other medical professional? I would love to hear your stories.

I would appreciate any words of solace or encouragement.


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16 Responses to ‘I Bet You’re Proud You Beat Cancer’

  1. Becky had this to say about that:

    Beth I’m so sorry to hear you are going through this s&*$. I totally get what you mean by the frustration when your symptoms are not acknowledged by doctors. My last brain MRI was a result of meds that a doctor wouldn’t admit might cause that side effect (thankfully, it also helped to demonstrate that I did not have any brain damage as a result of chemo or undiagnosed celiac disease which were both weighing heavily on me). So here is hoping that your issues are a side effect of something you can easily change, and also that the brain MRI also relieves some fear about various other potential issues … I acknowledge the fear and frustration that you are experiencing. It is real. Your care team should also be willing to acknowledge it … I fortunately, had the option of asking another physician to help with the medication management, which in the end significantly reduced the problem … but it meant finding another physician that was willing to appreciate that I KNOW MY BODY … and that what I wanted to try was a valid medical thing to do (reduce then go off the meds that turned out to be the problem) … there are really good physicians and specialists out there that do listen … and it does feel really good when they are on your care team and they acknowledge the reality of what you are experiencing … so I hope it helps a little that I do acknowledge it … I acknowledge the fear and anxiety associated with the scan as well as the frustration with the never ending side effects of chemotherapy survivorship … Hugs.

    • Beth L. Gainer had this to say about that:

      Hi Becky,

      It helps a lot that you are acknowledging what I’m going through. I can’t tell you how thankful I am that our paths crossed. I’m also hoping the brain MRI can set my mind at ease.

      With those who cared for me during cancer, they were incredible (I did fire the rotten apples), so I know what it’s like to be validated.

      Yet, this appointment last week truly sucked, as you can tell. So I am so grateful for your acknowledgement, and I will do the best I can for myself regarding getting the help I need.

      Thank you! xo

  2. Elissa had this to say about that:

    That appointment truly sucked. I’m sorry you had to go through all that.

    My main medical dismissal story concerns the severe dysmenorrhea I’d had for almost 20 years. I posted a long entry about that here.

    My partner has had brain MRIs. I’ve served as intermediary with the techs to make sure she gets the support she needs, like asking for extra blankets and letting them know that she prefers to be warned in advance right before she’s injected with contrast. Let the scheduler and/or techs know your needs, and/or bring someone who can support you in that way.

    I’ve experienced vertigo ever since chemo, plus “dizziness” is listed as a side effect on my anastrazole bottle. I’m keeping my fingers crossed that your MRI points only to side effects and can be a source of relief. The thought of a brain MRI is scary, period, but too many doctors don’t realize that we experience a whole other level of scanxiety. To echo Becky, your fear and frustration are completely real and valid. Sending hugs and wishing you relief on all levels.

    • Beth L. Gainer had this to say about that:

      Elissa, thank you for your comment. Being dismissed for dysmenorrhea for so long must have felt simply awful. I cannot imagine. I will be reading your post soon. I’m interested in what you have to say.

      I, too, am hoping that the MRI reveals that it is just side effects that are causing all these balance issues.

      Thank you for your tips on how to get what I need before and during the MRI. I have a close friend who will be there to help advocate for me to make sure my needs are met.

      I so appreciate your understanding. It’s true: we experience scanxiety that is like no other. I wish doctors would know or acknowledge the scanxiety. Just a word of validation goes a long way.

      I’m so sorry you are experiencing vertigo and dizziness. These side effects really suck.

      Thank you for your comment. xo

  3. Helen Barnett had this to say about that:

    I can so relate, Beth. My oncologist really had problems with BREAST cancer. He was from another country and was clearly uncomfortable discussing BC. From the minute he walked into the exam room, he rushed through everything–one time I actually had to ask him if he was going to do a breast exam. He was in such a hurry to get out of the room on my first visit that he “forgot” to tell me I was Triple Negative. Three months into treatment I asked him a question and he threw out “TN.” I had to go home and look it up.

    Four months into treatment, I fell in the mall parking lot. On the next onc visit, I answered “yes” to the fall question. Two days later I was having a brain MRI. My anxiety checklist was exactly like yours. My results showed no mets; I do have a small meningioma, which the neurosurgeon said I may have had for years. I have an MRI every two years to check on it–it hasn’t grown.

    I’m eight years out now and have awful balance problems. I, too, can go for a walk and get along fine, but I lurch getting from my car to my front door, and I fall often. I’m convinced my neighbors think I’m a flaming drunk. I do exercises that should improve my balance, but haven’t found anything that really helps. I know it’s from chemo. No point in asking that oncologist–when I complained about being fatigued so much, he said he had no idea why!

    Please know that you are not alone! I’m sending positive vibes your way.
    Helen B.

  4. Webbie had this to say about that:

    Hey Beth!

    (I followed my BC Ma, Helen here.) I remember how awful her Onco was. UGH! I wound up finishing TX with a different onco than I started with for a lot of he same reasons. He should’ve known better too, he’d had throat cancer!

    But, I really wanted to add my voice to all of those shouting that you are not alone.

    It wasn’t until I saw a neurologist that I started getting the help I so desperately needed to get my life back. Or some semblance of it anyway.

    The chemo fog was so thick I was literally afraid to leave the house at times for fear I would forget the stove was on, or where I was going, where I put my car … would it happen someday that I forgot how to get home?

    I tried to resume a dance class I had dearly loved. I thought the routine, and getting out would be a good place to start. But, I fell over every time I tried to stand on one foot. Yeah. Osteopenia. My instructor and my doc both had a fit. Sigh.

    It’s better now, eight years out. But I don’t dance anymore. And I certainly don’t keep my own books anymore either.

    Best wishes to you. We’re out here and we feel your pain and outrage every day. <3

    • Beth L. Gainer had this to say about that:

      Hi Webbie,

      Thank you for your kind words of encouragement. I’m so glad a neurologist was able to help you, and I’m so sorry for everyone who has had a bad oncologist.

      You’ve been through some tough times for sure, and it helps me to know I have so many people in cyberspace in my corner.

      Thank you tremendously for your support.

      — Beth

  5. Webbie had this to say about that:

    P.S. It turned out (thank you neuro!) that most of my balance problems were from the AI’s. Between stopping those (for other reasons as well) and the early dementia drug we tried (an RX grade vitamin B complex), I’m a lot better than I was. It’s SE’s! Betcha! :-)

    • Beth L. Gainer had this to say about that:

      Wow! I didn’t know AIs had that kind of side effect. I was on AIs for awhile, but the bone and joint pain were too crippling for me to endure them.

      I hope that you are right about it being the side effects from the medication!

  6. Rebecca had this to say about that:

    Beth, I am so sorry about the symptoms you are experiencing. I am familiar with the balance issue and the feeling of dizziness. I experienced those with a specific brand of Tamoxifen (Mylan) due to the fillers the manufacture used. It was scary and I too thought I had brain mets. But thankfully, a switch to my old brand fixed the problem. I am hoping it will be an easy fix for you as well. I hate MRIs. They make me feel isolated and scared. I wish they would come up with something better for God’s sake! We should really have better technology by now – more effective cancer detectors, less invasive procedures, etc. A lot of the symptoms we experience make us think of a recurrence, because we’re too aware now. This is one reason survivorship is so challenging for us. And yes, I’ve felt dismissed by a couple of doctors. They insinuated I was “done” and should be focusing on “living”. My oncologists never made me feel that way. They remind me I am not done.

    I think there should be more training in the medical field, including office staff. And to be honest, office staff shouldn’t be allowed to talk to the patients about their medical situation – only the doctors should. I am sorry you had an uncomfortable interaction.

    I know how stressful it is to not know what is causing a symptom. You hang in there! Try not to diagnose yourself (I’ve done this too!) and wait to see what the doctors say. I am thinking of you and I hope you get your answers soon (good results!). xoxo

    • Beth L. Gainer had this to say about that:

      Rebecca,

      Thank you for your understanding and support. We survivors totally get it: the fears regarding weird symptoms and such.

      I never knew that different brands of Tamoxifen can cause all kinds of symptoms. I’m so very glad you are doing better on the old brand of Tamoxifen.

      I agree that there ought to be more training about sensitivity in the medical field. It is really lacking.

      Yes, I HATE MRIs too. Without Xanax, I’d never get through any.

  7. Scott Johnson had this to say about that:

    I know all about doctors and the sloppiness of the medical system. Most recent revelation came in an activity outside the medical environment though. Enrolled in a course on Mindfulness for the imagined awareness revelations I instead found myself arguing with everyone on the Face Book site and their over-repeated “it’s really not as bad as it seems” happy message. Quit the course because I’ve been worse than I actually seemed and know coming back from was more complicated than happy thoughts and inspirational posters could fix.

    I’ll write more asap. Need to collect a couple of resources and some stray thoughts. One thing helping me now is what I originally thought was an unrelated online course on Racism called “Hard Conversations”. We need to communicate with each other at a deeper and more meaningful level in medicine, and society in general but most people don’t want go there and there aren’t enough psychologists to fill in the gap.

    One very helpful thing for me has been my new family doctor. Our first meeting a few months ago why I hadn’t been in contact with this specialist of that assessment and I told her I was so invisible outside her office that anything she ordered done or booked disappeared outside her office. We are now starting a list of things that don’t happen. It’s important to see the “should happens” next to the “didn’t happens” so we can follow how things mostly don’t work and it’s not all my attitude. Well, mostly not all:-)
    Say HI to Arielle!

    • Beth L. Gainer had this to say about that:

      Hi Scott,

      Sorry for the delayed response. Motherhood has really kept me on my toes. I did tell Arielle “hi.” :)

      I’m so sorry that you’ve endured so many problems with the medical system and the Mindfulness group that just wanted a happy message. The way I see it, if they want to be happy, fine; it’s just not for everyone. We all have a right to do illness our way.

      The “Hard Conversations” course sounds really good. It sounds like you are getting a lot out of this course.

      Take care, Scott.

  8. Nancy Stordahl had this to say about that:

    Hi Beth,
    Clearly, I am reading in reverse order here. Oh well. Now I understand why you had the MRI. Again, I’m glad you made the call and had one. I am sorry you’ve been dealing with balance issues. It’s understandable that you worry about falling. I hear you there. I worry about that more these days, too. And that assistant’s comment about you feeling proud you beat cancer, sigh…Too bad your neurologist was so clinical. Regardless, you made the decision to be proactive and had the MRI. Hoping you get some answers. Thank you for sharing so candidly, my friend. xo

    • Beth L. Gainer had this to say about that:

      Hi Nancy,

      Thanks for your support, as always. I’m glad I got the MRI, too. I see the neurologist for a followup later this month. If all is clear — which I hope with my entire heart and soul — I may be a candidate for physical therapy for my balance issues.

      Thank you once again for your support. I appreciate you.

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