“It’s NOT a tumor”…actually it is

I have a parotid tumor.

Time for MRI!

Time for MRI!

And I know what you are wondering so I’m going to address the question now.

It’s benign. At least I am pretty darn sure it is.

For those of you that know me and my family, you know by now that only the most peculiar things happen to us.

My husband had his hip replaced using the most modern anterior approach in Louisville Kentucky by one of the most renowned orthopedic surgeons in the world.

Unfortunately, my husband was one of the two patients out of thousands of patients that the surgery didn’t turn out as expected and he had to have it done again the next week. This was after two rides to the emergency room after the new hip became dislocated—twice.

Then he woke up one day a few years ago, and his eye was crossed. Who does that happen to?

He ended up going to Chicago to see one of the best surgeons in the world for the procedure he needed.

Now my turn.

We were in Myanmar on a mission trip and I lost vision in my right eye. I didn’t think a lot about it (I think the Holy Spirit kept me from totally freaking out), until I got home. I was soon after diagnosed with multiple sclerosis and am now on medication that I inject three times a week. No problems since!

So when I noticed a “lymph node” on the side of my neck that seemed to be somewhat swollen and just kind of hanging around for no reason, I became slightly concerned.

Sometimes, because I am a nurse, I automatically think of the worst and most horrific things that a little swelling, itching, or ache could be. So, just like my vision loss, I decided to see my doctor just to get it checked out. After all, I feel like it is a responsibility of a mom to get things that are abnormal evaluated. Time is ticking in some cases.

I ended up at an ENT doctor who immediately biopsied the area and diagnosed me with a parotid tumor.

Seriously? Only 2 in 100,000 people are diagnosed with such a thing. So, I guess I’m not too surprised I am one of those 2 people.

I’ve decided to get a second opinion at Mayo clinic in Rochester MN. And, for the record, I would always suggest a second opinion and if your doctor is offended by that, then I think you have your answer.

I sit here in Mayo Clinic awaiting my appointment. I am very aware that things are not always as they seem but I hope that, in this case, I don’t get any surprise information from the doctor.

I’ve only passed out three times in my life: In church as a teenager, when I was diagnosed with MS, and most recently when the ENT doctor told me I have a tumor. I really hope I will have no reason to pass out today.

I have had my biopsy slides sent over as well as my medical records.

I’ve already visited the information center this morning because this is more like a field trip to me. I know it sounds odd, buy as a nurse, I love visiting new hospitals. I have already set up a schedule of buildings and departments I want to try and see. It may take some finagling and sweet talking but I would love to see some of their nursing units too.

In conclusion, I am at peace with this situation but I’m also really “peaced” off that it’s even occurring.

I am not angry at God but am really asking Him to let me know what I am supposed to do with this stuff. If I can use any of it to help anyone else, that’s what I want to do.

I also think it's time that people start sharing their healthcare experiences so that others don't feel so alone. We share everything else, right? But we are still very private about our own health, disease processes, and healthcare journeys.

Perhaps that's because we like to keep it close to us so that we can feel like it's not real.

Or, we feel like we have to keep up this persona of a perfect and happy life. But if you still take Facebook posts as true reality, it's time to go a little deeper.

We are all going to die. And most of us will not die a sudden and unexpected death. That means that we will have to endure the unknown of disease and sickness.

As a nurse going through the process, my eyes have been opened to a lot. But I still wonder:

  • What is it that other people need to know?
  • What questions do people go through when faced with healthcare decisions?
  • What are their main fears and what holds them back from taking control of their situation without immense anxiety and fear?

If you have any of these answers or other insights, please comment below.

I am hoping that through your questions and concerns regarding your own healthcare journey, I can use this journey of mine to fill in the gaps between patients and healthcare to make your future experiences a little more tolerable.

And for goodness sake! If you or someone you know has had a parotid tumor, I would love to know more. Google has only given me anxiety!

Thanks!

 

 

10 Responses

  1. So Steph, as many years as I've been in medicine myself and as a medical transcriptionist, I've typed the term Parotid Tumor many many times. To be quite honest, when I hear tumor I have anxiety regardless of who has it! I do know that tumor does not always mean malignant, it's a term that you and I have become familiar with in our years of medicine but it's still scary as heck!!! Another thing I know because of my experience, Mayo Clinic is top notch in their care and research criteria. You are certainly in good hands and for a second opinion, that is the best place you could have gone. My prayers are with you, Jimmy and the family. Please let us know what comes of your visit. Doris Rutledge
    • Stephanie Lefler
      Doris, is it weird that I'm glad to hear that you have heard of parotid tumor in the past? That brings me some comfort. I feel very sure myself that the tumor is benign but I will deal with whatever it is. It's amazing how much your faith can help your self-talk in situations like this. I have been very very impressed with Mayo Clinic. It's so systematic, organized, and proactive at Mayo Clinic. Patient satisfaction is very important but I have been most excited with their ability to move me through the system quickly and get answers! Thanks for the prayers. Keep them coming!!!!
  2. You are such an inspiration and you have no idea how much your words have touched me. Keep spreading the word cause it's amazing how He is working thru you!!
    • Stephanie Lefler
      Thank you Amy! Your encouragement means more than you will ever know!!!
  3. Only you could write about such sensitive information and sprinkle it with humor. The joy of the Lord is your strength! Much, much love! We are all praying for you!
    • Stephanie Lefler
      Well you know Julie, somewhere along the way I have lost that filter that keeps me from saying too much and going too deep sometimes. But, I just ask the Holy Spirit to keep me in line and assist me in helping others anyway I can! Thanks for your prayers! I am blessed!
  4. Praying for you and your family, Stephanie!
    • Stephanie Lefler
      Thank you Gina. I can't imagine where I would be without the prayers. I definitely had some prayer warriors circling around me. I am so blessed!!!
  5. I don't know you but my prayers are with you and your family. The word tumor does strike fear in all of us. I had mole that came on my back that was classified as malignant melanoma we caught it early and with a wide excision removed it all and I have been cancer free for 20 years now. So do what they say and be a good patient. ( yes it's hard as a nurse to be a good patient) lol.
    • Stephanie Lefler
      Judy, thank you so much for your comment! I love to hear stories about people that take charge of their health and have the guts to talk to others about it too! You never know who you may prompt to get a funny looking spot checked out because of your story. I know I will be doing a full body check now! Thanks and God Bless!

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