Let’s talk about…being misdiagnosed.

Let's look at something pretty before we go down this dark path, huh? Yeah, this will do. Jackson riding a horse at the Zoo while hubby Jake ponders what's going through the horse's head at current.

Let’s look at something pretty before we go down this dark path, huh? Yeah, this will do. Jackson riding a horse at the Zoo while hubby Jake ponders what’s going through the horse’s head. Or maybe he’s thinking about sports. Yeah, probably sports.

 

You ready to open up some not-yet-healed wounds? Cause I am. I’m finally not reeling from the effects of nausea, and it’s about to get all sorts of Dr. Jekyll and Mr. Hyde up on this blog. Well, really, it’s about to get all Mr. Hyde because he was the evil one. The good weeks are Dr. Jekyll…I think.

Side note: Maybe I should have read the book and done more than just google which one had which personality. I digress. 

So, yes. Let’s have at it. Being misdiagnosed.

Ohhhhh boy. So much venom to spew forth about this topic. Where to begin?

Well, for starters Iet’s go over how many times I had to talk to the various people providing me with a diagnosis up until I finally got the right one.

Timeline of times I told my symptoms to various medical professionals up until I was diagnosed (pain started right before Thanksgiving)

  • Mid December: First doctor’s appointment
  • Late December: First chiropractor appointment
  • Mid-February: Second doctor’s appointment
  • Mid-March: Third doctor’s appointment
  • Late March: First physical therapy appointment
  • Early April: Second, third, fourth physical therapy appointments
  • Mid April: Fourth, fifth, sixth doctor appointments
  • Early May: First hospitalization – met with hemotologists, pulmonologists and infectious disease doctors.
  • Mid May: Seventh doctor appointment
  • Late May: First consult with new pulmonologist out of UW Health (Madison)
  • Early June: Second hospitalization – met with pulmonologists and infectious disease doctors, the first couple days. Finally met with hemotologist after cancer cells were found on the second bronchoscopy.

And there you have it. At the point of the actual diagnosis, it had been almost a full seven months of not knowing what the holy hell was wrong with me. And I had heard it ALL. What did I hear?

The things I was told…

Here are the biggies (in bold), as well as my internal monologue to those things when I heard them (in italics). Also – these are generally in chronological order.

“A lot of women your age carry so much stress, especially around your shoulders. This is quite common. You should try some gentle stretches.”

Seriously?  That’s what we’re chalking this up to? Okay, but if she’s really right I’m going to feel like an idiot for spending this much money to talk to my doc about stress-related pain in my back. UGH.

“The weird reaction to alcohol? It’s not Hodgkin’s Lymphoma. It’s probably just a newly acquired allergy. That happens when you get older.” 

Hmmmm. But is it a new allergy? I’m not allergic to anything. And sulfite allergies don’t act like this. I’m not red and blotchy, it’s just this feeling like someone is running a steak knife down my spine. Is that what an allergy feels like?

“How is your work station? Are you sitting ergonomically? How are you sleeping? Is your neck supported properly?”

Good question. Am I sitting up right? I just started this job a couple months ago. Is this seriously the culprit? And our mattress is new. And I do like to sleep on my stomach. Seriously, what is it? 

“It could be acid reflux. Your lungs sound fine.”

Nope. Try again. I have a cough all night long. I don’t know why you’re not hearing it now. But this is NOT reflux!

“Well I’m as shocked as you are. I guess you have walking pneumonia, according to your recent x-ray.”

THANK YOU. FINALLY. Now get me some freaking antibiotics!

“The pain in your back? Well it’s probably not related. I would continue on with physical therapy.”

It is related. I don’t know why I think it’s related, but I do.

“Your blood results are abnormal, but it doesn’t mean cancer. It could also be the result of your body fighting an infection, which it clearly is right now. You’d need to talk to a hemotologist about these results.” 

It’s totally cancer. This is exactly what happened to my sister! Ugh. I knew it. 

[In the hospital, the first time with the hemotologist] “Why do you think this is cancer? This is not what cancer looks like. It looks infectious, but not like cancer. And the other doctors agree.” 

I don’t care what it looks like. This is ALMOST EXACTLY what my sister went through before she was diagnosed with Non-Hodgkin’s Lymphoma. YOU ARE MISSING THE FOREST FOR THE TREES.

You need a bronchoscopy, it’s the best way for us to see what’s going on inside of you. Anything that can be seen on a surgical biopsy, I can see with a bronchoscopy.” 

Let’s do this.

“The test results aren’t back yet, so we’ll just put you on antibiotics until we get more defined test results.”

Oh. Okay. So, they did nothing before I came to the hospital, but now I’m going back on them, huh? Okay. Fine.

[After a second CT scan that I asked to have done] “All the results from the bronchoscopy are negative. And from your CT scan it looks like the mass is bigger. We recommend you go back on antibiotics and speak to a surgeon about a surgical biopsy – the next step we’d take to diagnose this.

What. The. Fuck. You want me to take MORE antibiotics? The same ones I was just on for the last four weeks that continue to do NOTHING and you STILL don’t know what’s wrong with me? THIS IS INSANITY!

[After no results from the bronchoscopy, talking to the first pulmonologist and surgeon] “You need a surgical biopsy. It’s the only way for us to know what exactly is going on in there.”

Thought you said you could see all you needed to from the bronchoscopy? This is bullshit. I need a second opinion.

[Final meeting with the hematologist at first hospital] “To be honest, I’m not even sure why we’re meeting. From your bronchoscopy, it’s clear that this is not cancer…and as they already stated, this isn’t even what cancer looks like. And I agree with them.” [Then after asking him how sure he was this wasn’t cancer] “With everything I’ve seen so far, I’m 99% sure this isn’t cancer. Sure there’s always the off chance it is, but I would be 100% sure after you had a surgical biopsy. But honestly, I think this is the last you’ll see of me…because it’s not cancer.” 

Well good. I mean, that’s a relief. One thing to cross off the list of possible terrible verdicts.

[Second opinion at UW Health] “It’s likely you’ll need a surgical biopsy, but we’ll know more after we get some more thorough testing done.”

Alright. Fine, I’ll submit.

[After more tests came back negative] “We’re recommending a surgical biopsy. We’ll have the surgeon stop down tomorrow to talk to you about this.” 

Sounds good. Let’s do this. Let’s figure this shit out.

[From the surgeon at UW Health] “I am not recommending a surgical biopsy. The risk is too great. I’d have no good tissue to staple back together and that would likely leave a hole in your lungs. I don’t care what pulmonology has to say. I’m not comfortable going through with this until we have more answers. It’s unheard of to do this without some direction first.”

WHAT THE HOLY HELL? WHY DIDN’T ANYONE TELL ME THIS WOULD BE A TERRIBLE THING TO DO? UGHHH.

[From the pulmonologist] “We’re going to try another bronchoscopy…but there’s a fifty percent chance we won’t find anything because the odds are lower the second time you perform a procedure.”

I hate you all, but fine. Repeat the procedure. Just figure this shit out. 

And then, TA DA!!! The diagnosis finally came in on that second bronchoscopy – the one they said might not produce any results. Well it did. It produced something. Technically not the right diagnosis, but a cancer-related diagnosis, at the very least. First I was told it was Non-Hodgkin’s lymphoma, and then after the final pathology report came in a week later, it was determined that it was actually Hodgkin’s lymphoma.

The after math…

At first – it was a feeling of vindication. I was right. All this time, I was right. The back pain, the neck pain, the cough, the crap in my lungs, the weird reaction to alcohol – it was ALL related. And in hindsight…duh. I mean, look at that list of symptoms. I am TEXTBOOK for Hodgkin’s lymphoma.

But that feeling was fleeting. Then it turned into this low simmering pot of anger where I wasn’t about to go berzerk, but I definitely thought about all of the times (many of which were mentioned above), where I was told to go against what I thought was true or right and how disappointed I now am that I put so much trust in so many doctors that continually did not have any answers.

And that pot just keeps simmering today. What would I do if I was sitting in front of that first hematologist again? Would I shake him and say, “YOU WERE WRONG! AND HOW COULD YOU TELL ME THE ODDS WERE SO HIGH? WHO IS THAT CONFIDENT?”

For the pulmonologist that kept saying, “It looks infectious. This does not look like cancer.” would I say, “Apparently my body didn’t get the memo. You are wrong. It is cancer. It is not an infection. And YOUR MILLIONS OF TESTS ALREADY PROVED IT WAS NOT AN INFECTION.”

Well, to be honest, I’m sure I wouldn’t say/scream any of those things. I think some of them already know. And the others – well, it’s not my job to make them feel worse when I’m sure they already have trouble sleeping at night thinking about the patients that they currently do not have answers for.

But the simmering continues. All of this retrospection doesn’t make it any easier to swallow the fact that I might not be stage 4 had I not been misdiagnosed for so long.

And I don’t even think I’m the angriest about this. I wouldn’t say I’ve accepted it, but I definitely know there are others out there more upset about the constant misdiagnosis than I currently am. So holding on to my anger is not needed. What is needed is to move forward. And I can try to do that much.

Wait, did that sound too optimistic? Like something Dr. Jekyll might say? No! Get out of here Dr. Jekyll! It’s not your turn yet. This is the BAD week. Meaning, NO GOOD SENTIMENTS SHALL BE UTTERED.

I kid. I kid. And I’m almost done rambling. Here’s the quote I heard in the movie, “Whiskey Tango Foxtrot” that seems to be just the type of inspiration Dr. Hyde needs this week. And yes, it’s on a coffee mug, where all good inspirational quotes should be.

IMG_1282

Alright, hopefully returning in a couple days with Dr. Jekyll. Stay sane until then!

 

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8 thoughts on “Let’s talk about…being misdiagnosed.

  1. Hi Jamie, We have not met, but I am your mother-in-laws cousin. Reading your post today makes me think that doctors just do not want to think the worst. Could not be! Especially for young people. I believe Karen has told you about our Mark diagnosed when he was 12. It also took 7 months to diagnose his cancer. They did not find it until his tibia had cracked because the cancer had honeycombed the bone so much there was little bone left. I understand your anger. I was there, but, as you did say, at least we had a diagnosis. He is now 42 years old.
    Hope to meet you.
    Dianne

    1. Dianne – that is such a hard story to hear. It really gets me when this stuff happens to kids, but I’m so glad he’s older and you guys are so far past that awful time in your lives. Thanks for reading!

  2. Ugh. I can definitely understand your anger. I would be pissed too. You know your body better than anyone else. I’m sorry it took so long for the doctors to figure it out. It sounds like this week is going much better than the first bad week. I’m glad for that.

    Great quote! Good attitude! I love your updates. Your sense of humor will get you through these 6 months.

    1. Thanks, Kate! Yes, it was frustrating, but glad I have answers now. This bad week is slightly better than the first bad week, but each day seems to rear it’s ugly head with something awful. So I’m just trying to tough it out. And humor is helping!

  3. Hi Jamie-I found your blog via Lindsay (we went to HS together)…I just read your misdiagnosis post and it breaks my heart. I have a best friend that was misdiagnosed for almost a year. MD’s went so far as to tell her she needed to see a psychiatrist. After almost a year she finally got a consult at Mayo in MN. TaDa…a few weeks later we had the news. She had cancer and would never have more children. When she went to her MD (who actively participated in her misdiagnosis multiple multiple appts) to fill out FMLA paperwork on her way to live in MN away from her 2 year old daughter and husband for 6 months to receive chemo was told she needed an appt for the MD to fill out paperwork for her. She lost it. No no no. You missed my cancer. You didn’t listen to me. You’ll do this now.
    I guess I don’t tell you this because I hope it will make you feel better (Especially coming from a stranger-because that’s dumb and unrealistic) but in hopes that you’ll know that people suck, some docs suck and some are awesomesauce but you have fighters and friends no matter how much suck there has been.
    I’ll be praying for less suck and more awesomesauce for you and your family! Keep fighting and pushing.
    Even strangers are in your corner!

    1. Thanks, Lisa! That sucks about your friend. But I appreciate you sharing the story. I don’t want anyone else to go through this, so maybe if we can keep sharing how crazy these things are, maybe others will have more courage to stand up for what they know and feel is right and true and get to the bottom of it faster than others have. Thanks for following!

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