A place to share my words and ideas

Finding the right words

One year and a day ago, I woke up at 4 a.m. to ready myself for surgery. As I showered with the strange antibiotic soap I was required to use, I thought once again about the day ahead.

I was apprehensive, but resigned. I needed to get this done.

My husband and my son Chris drove me to the hospital less than an hour later, and Chris said goodbye in the parking ramp. This was May 19, 2021, and Aurora St. Luke’s Hospital in Milwaukee was in COVID lockdown. Only Jeff was able to sit in the pre-op room with me until they filled me with calming drugs and wheeled me away.

About 5 ½ hours later, I was able to see them once again – separately – and assure them that I was me and I was OK.

The first thing I remembered when I was being wheeled from recovery into my Neuro ICU room was them asking me my name. I said “I’m still Penny Mullins.”

Why was this important, you may ask? Because my two wonderful and extremely talented surgeons had opened up my head, lifted and repaired the dura layer on my brain, cleaned and cemented a hole in the bone between my brain and left ear canal, and put Humpty Dumpty back together again.

It was a 4 ½ hour surgery, with my ENT neurological surgeon working from the bottom and my neurological surgeon working from the top. Dr. Aaron Benson and Dr. Glen Pollock had performed this surgery many times together, but it was all new to me.

What started in 2018 as persistent fluid in my left ear, which was blocking my hearing, ended up with an ear tube being inserted in April 2019. I had immediate results as the fluid started draining – I could hear again!!!

But the draining never stopped. For almost three months, my ear leaked a clear fluid. It eventually got infected and I had to use drops that felt like Drano going through my ear down my throat. It was time to take the tube out.

My ear immediately became blocked, and I dealt with it … for the rest of 2019 and into early 2020, when COVID shutdown changed our world. I wasn’t able to see my ENT, even if I wanted to. 

Feb. 2, 2021, I had a regular check-up with my doctor and told her about my loss of hearing and tinnitus. She set up a visit with my ENT.

My hearing was tested and my ear was scoped and I talked with my ENT about another tube, but he wanted to take a look at my ear with a CT.

The news was bad. It looked like there was a hole in the bone between my middle ear and my brain. He ordered an MRI.

That news was worse. There were several holes, which allowed cerebral spinal fluid to leak into my ear – hence the clear fluid that had been draining in 2019. Once the tube had been removed, the fluid continued to leak and was trapped in my ear canal.

But there was more – a portion of my brain had dropped down into that hole. Whatever dropped down was now dead, I was told. I needed to have surgery as soon as possible to clean up my ear and brain and repair the hole.

ASAP has a different meaning when you are not considered an emergent medical case. My first appointment with Dr. Benson would be April 21, which was 34 days after my MRI. My surgery was scheduled for May 19, which was almost one month later – and that’s only because Benson and Pollock shifted their schedules.

I had a lot of time to think. I was going to have a craniotomy – a Middle Crania Fossa Approach to Repair a Tegmen Defect. I had already lost brain tissue, from a part of my brain that deals with words. I was told the surgical risks included possible stroke, nerve damage to my taste, sight or facial nerves, infection or death. The doctors really didn’t know if the defect was caused by one of the three concussions I suffered in my life or I was just born with it.

I had a lot on my injured mind.

I was 65 years old. Suddenly, I was seeing the word “elderly” in my medical reports. I had let my hair go gray after I retired in February 2020, and I was now a gray-haired, overweight senior citizen. How did that happen??!!! I was facing a medical crisis that already had changed my description – was it now going to change my personality, my facial muscles, my ability to do the things I love doing?

Or could I die? 

I prepared by cleaning a lot. I worked my ass off in the greenhouse getting ready for the weeks that followed my surgery, when I would have limited mobility. I didn’t know how long I would be unable to work the way I wanted to. 

I made a list of where everything (financial) was kept. I paid bills in advance. I trained my sister Joy and daughter Kati how to run the greenhouse, as May is our busiest month. I gave the password to my phone and iPad to my husband and my best friend in case they needed to have access to all the things stored there. They never needed those numbers, but I had to be sure.

My surgery scars
This is what my incision looked like four days after surgery.

I didn’t tell a lot of people about my upcoming surgery. I let my mom, sisters and brother and my sisters-in-law know; I told my closest friends and swore them to secrecy. I did not ask for prayers on social media, either before or after.

But I was preparing myself for a future that held plenty of unknowns. It opened my eyes to all the people in my life who were facing their own personal crises. And there are many – as Jeff and I are firmly immersed in the Baby Boomer Generation. We have many friends and family members who are dealing with medical changes and losses in their lives.

My surgery went very well – did I mention I had very good surgeons! I was told the hole was bigger than they expected even though I had about 4 CTs and 2 MRIs in advance. Not a problem, they just used more cement and sutures.

I was told to expect to be in the Neuro ICU for about five days, but two days after surgery, they sent me home. I was a model patient, they said, hitting all of the benchmarks they set well before expected. I have to say I had the best nurses caring for me there – they were caring and warm and I felt I had quality care. Other than going home without painkillers (which I really needed, but “someone” (the hospitalist) felt I didn’t need) – I did pretty well. I had a huge line of stitches from above my left ear close to the temple and below the fold of my ear.

I have recovered almost fully. The pain from the docs cutting through my jaw muscle healed well, and the scar is almost invisible. I can hear almost perfectly in that ear, and I am not losing new words – although I might have permanently lost some prior to surgery.

This photo was taken less than a month after my surgery.

Other than the hearing loss, my only symptoms were occasional spells of a racing heart and temporary aphasia, where speaking and listening to others took on an other-worldly aura. My heart would race and my blood pressure would spike, but a monitor showed no reason to blame my heart. Turns out that having a cerebral spinal fluid leak and brain matter falling through a hole can cause those episodes. Who knew? There haven’t been any incidents since the surgery.

If my only complaint is that my sense of taste was compromised and hasn’t fully returned, I’m OK with that. I am alive, I am Penny, and I am glad to be here. 

I am also grateful for the love and support of my family and friends – because I know I couldn’t have done it without them.

Now, I just need to work on that “aging gracefully” and being a “senior citizen” thing.


28 thoughts on “Finding the right words

  1. Glad you did so well. Our retirement years are to sit back and smell the roses. or plant them. I guess some of had to get fixed to do it.

  2. Wow. What an experience you went through. Sure glad it all worked out. Doctors and nurses sure do amazing work. The things they can do these days is incredible. I like how you kept it almost all to yourself and no social media. I try to do the same. 🌷🌼🌞

  3. Prayed very hard for you during that time and after surgery. Gratitude for answered prayers and for your amazing recovery. You are a blessing to all of us. ❤️🙏❤️🙏❤️🙏❤️🙏

  4. I’m so happy that it all went well. It was a frightening time for you and Jeff and your kids. I was scared for you, too. I still say a prayer for you to get your sense of taste back, but I’d rather see you healthy, if the choice was between you being able to taste and you not having a hole in your head. Lol. I’m the most grateful for having my sister to laugh, cry and love plants with!

    1. Me too! I wanted to wait to write about this chapter in my life and the one-year anniversary was perfect. I am so happy to have this in the past and look forward to every day. One good thing about my surgery was it gave us a reason to see each other more, and I really loved that! I appreciated all your help and support before and after.
      Love you, Joy ❤❤❤

  5. Wow. So glad you’re doing well. Also glad you’re still great with words. I enjoy reading your 2cents.

  6. What a harrowing experience to go through. I cannot imagine the scary days before your surgery just thinking about the outcome! And then afterwards-No Painkillers! You’re my hero. What a strong woman you are. Thank you God for giving this woman more days to educate us with her writing talent.

    We all know you’re the “brainy” type and are so blessed to know and love you!!

    1. Jeanne,
      I always say that the first day after you get bad news, you grieve and have pain. After that day, I always found that having a plan got me through. I had a plan to get better as soon as possible … I was just waiting on the Big Guy’s plan for me! Sending ❤❤ to you and Pete

  7. This was a great read, Pen. Trust me when I say “You’re writing the book on aging gracefully, you cougar”!

    Love you.

  8. You’re an amazing woman, oh cousin of mine! Thanks for sharing your experience in such an eloquent way. ❤️

  9. And the tears flow down my cheeks as I write this Penny. I did pray, I meditated and I thought of you more often than I expected. What I didn’t do was reach out, send a card, or call and I am so disappointed in myself. I am so grateful you are ok, you have been pretty amazing for as long as I have known you but this….well now you are super amazing.

    Hugs and peace and hopefully I can get to the green house soon.

    1. Linda,
      Don’t put such a burden on yourself … knowing that you were thinking about me is touching enough. I purposely kept much of my surgery out of the limelight because I didn’t want people to worry unnecessarily. Afterward, I just wanted to get back to normal (as normal as I will ever be!😆) I shared it now because it’s firmly in the past and I feel good about the lessons I learned – not only about myself and my own mortality and life, but on what we all deal with regarding illness, injury and aging. You have always been a role model to me of a strong woman facing your own medical issues. Some of that must have rubbed off!
      Love you, my friend!

  10. That is a real miracle of a story. We really never know what challenges folks are having to endure until a story like this is shared.
    I am happy that you are doing good. I am often reminded how precious life is and how easily it can be lost. thank you for sharing your sory, Penny.

    1. Joe,
      It is so nice to hear from you. Thank you for your message … I really hoped my story would speak to the joy of life, despite the unforeseen events that often shake it. Enjoy every day, my friend, and keep playing the music that feeds your soul. ❤

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