Update on Me, January 9th, 2023. Happy New Year!

Update on Me, Founder and Administrator, January 9th, 2023.

I’m going to tell the whole story (probably for the last time because it’s now ‘old news’) because I’ve found that some people are interested. If not, you can pass this by. ::smile::

The Details

Many of you know that I was gone from the group for over 12 weeks due to a serious illness. A few of you have asked recently how I am, and I’ve said a few vague things. I’m doing an update to start off 2023 on a positive note and to THANK ALL OF YOU WHO SUPPORTED ME!! There were a LOT of you, and I will be forever grateful.

On June 20th, 2022, I had the first of 2 thoracotomies (open chest surgeries) to fix my second-ever esophageal hole (first in 2019 when I also had 2 thoracotomies). The surgery was a long, complicated one which was supposed to fix the area for good, but there were complications resulting in the second surgery 8 days after the first. I was in the hospital for over 5 weeks with sepsis during which I was unable to have anything by mouth (for all but a short time when they tried clear liquids) because even though I had 2 successive esophageal stents to cover the hole while it was healing, there was leaking around both of them. I had an NJ feeding tube (nasal) then a GJ feeding tube (gastric & intestinal) which I brought home along with a PICC line for antibiotics & antifungal because of the sepsis.

On September 19th, my surgeon was to remove the second stent expecting to put in a third* which would have meant the feeding tube for 6 more weeks, but he found in a pleasant surprise for us both that the hole had healed. The feeding tube came out 9 days later, and I was able to resume a normal diet much to my DELIGHT! I was released to home health which to be honest was disappointing & inadequate. Luckily, my husband is a retired Occupational Therapist who worked in nursing homes, so we were able to figure out how to do most of what we had to do to get me back to ‘normal.’

The Continuing Challenges

the eagle’s talons I call it. I still have considerable pain in the area of my long thoracotomy incision and the 5 smaller incisions where I had various tubes and drains. It feels like an eagle’s big talons are dug in from the long incision which is on my left lower back (the 3 eagle talons there) to the middle of the front (1 talon there) where I have a long incision from having had my left abdominal muscle removed & passed through my diaphragm to the thoracic surgeon to wrap around my esophagus called a ‘flap procedure.’ Unfortunately, it failed which is a long story. I’d had intercostal nerve blocks in September which helped but they wore off around Christmas. I have another round scheduled for January 16th (maybe sooner if my insurance is approved sooner).
The pain is from having incisions between ribs at 2 levels and from the scar tissue from the 2019 surgeries. On June 20th, the surgeon cut in the 7th intercostal space (between 2 ribs) where there are nerves, muscles & arteries, but found that my stomach was adhered to my chest wall from a lot of scar tissue from 2019. He then cut in the 8th intercostal space where he found my left lung and diaphragm ‘stuck’ together with adhesions/scar tissue and also were adhered to my chest wall. My diaphragm was adhered to my left lung & left lung ‘stuck’ to my aorta. My left lung had been traumatized because of a fistula that developed in 2019. A fistula is a type of tissue that can create connections and that arise from trauma or infection. In my case, in 2019 as I healed from the 2 thoracotomies, a fistula formed from my left lung to the esophageal hole causing me to cough when I swallowed anything, even water. I was fortunate that putting in an additional stent shut it off. Fast forward to May 2022 when I started to cough in the same way. Yes, the fistula had formed again outside a new hole or the old one reopened, they weren’t sure. Part of the complicated surgery was to clip the ends of the fistula so it would not cause any future problems. Hopefully that is the end of that!
Because of the trauma and slow healing, partly because of other health issues I have, and age (soon 70) I’m taking a lot of medication for the pain. As many of you know, it can sap your energy and fog your brain. I had already been taking a lot of pain medication prior to these surgeries because of fibromyalgia and osteoarthritis in my spine and several joints. I’m hoping the nerve blocks will allow me to start coming down on the doses of some of them.
5 weeks in bed can really debilitate a person! I did have some PT in the hospital (not enough) and at home (inadequate again). It’s taken me pushing myself to get outside to walk to regain any stamina. I can’t do more than 6 minutes of brisk walking at a time, but I do it several times a day. My iPhone & Apple watch are counting my minutes (25 total) and steps (6,000 or more), and I’ve been increasing that gradually.
I didn’t sleep much in the hospital at all despite the various types of medications they tried. I still don’t sleep well, sometimes because I wake in pain, but sometimes I just wake up (not that there’s even anything on my mind). I’m working on meditation which helps some days but not others so far. It takes time and practice.
I also have a bit of PTSD which is technically called Post Intensive Care Syndrome. Even though my stay in ICU was short, 50% of those with sepsis develop it. Things can trigger me to be back in the hospital in vivid detail. As time goes on, the symptoms have become less and less upsetting.
2 more surgeries in the next year. I was scheduled for an already-delayed knee replacement in October which was scheduled before I knew about this year’s hole. It had originally been scheduled for 2021 but had to be delayed twice for other reasons. I also developed an incisional hernia from where the abdominal muscle was removed. Took a long time to get the diagnosis and testing. Finally saw a general surgeon at the end of December who said it should be fixed, but if I can put it off, have the knee surgery first. It’s small now and doesn’t bother me much. I refer to it as the ‘alien in my abdomen’ because of the 1970s movie ‘Alien.’ I’ve waited for it to BURST out of my abdomen like that one. ::grin::

So Many Blessings!!!

The great news is that after wearing a heart monitor, the AFIB that I had after each surgery didn’t reappear. The cardiologist recommended an Apple watch to continue to monitor, but so far so good.
I lost 20 pounds that I really needed to lose, and I’m at a normal weight for the first time in a LONG time (I don’t recommend the method. ::smile::). Now, if I could only win the lottery to have all the excess skin removed from losing so much so fast! ::smile::
*For the September procedure, my surgeon had found a possible way to close the hole with a ‘clip’ that is used to close holes in the lower GI tract that had been successfully used to close esophageal holes if they were of a certain ‘type.’ Although he didn’t need to use it for me, he has another tool in his toolkit for esophageal holes which occur more than I thought (usually they know the reason, though).
I’ll have a swallow test (type of CT scan) in April & probably regularly after that, but other than that, I have no restrictions.
I had the best surgeon & team! The care in the hospital was also excellent. I couldn’t have asked for better. I even had private rooms both in 2019 and this year. It was like a hotel room with meals prepared and served, housekeeping done, and my (almost every) whim satisfied. ::smile::

The Dark Night of My Soul in the Rear View Mirror

I was really, really sick and in danger of losing my life especially because of the sepsis. I’ll admit that I felt so bad I didn’t care. I kept asking the doctors why I was still there and usually got the “it’s not your time.” I’m not going to wax philosophical (much) except to say at the time that answer did not comfort me (and we don’t discuss religious beliefs here in respect for the many different views held). What did comfort me, and what started me down a path toward emotional recovery, was a conversation I had with one of the surgeon’s assistants who had also had a thoracotomy but for different reasons. He said that even though I didn’t realize it, this was a lesson in resilience, a word thrown around a lot, but I didn’t understand it till then. Resilience is the ability of something or someone to bend but not break. With me and with him, we just ENDURED until such a time as we could move forward.

While still in that weakened state, I started to look for anything I could that was positive or even things that would just distract me. I started to watch cooking shows, of all things, usually in the wee hours when I couldn’t sleep. I don’t like to cook, and I couldn’t eat, so that was definitely ‘strange.’ I especially liked the cooking competitions. I dusted off my audiobooks and music. I talked more everyone who came through the door, asked about their lives and who they were when they weren’t working.

I also started to talk to myself (not out loud most of the time ::grin::). I told my esophagus that I loved it, that it would heal in its own time. The staff thought it was hilarious when I talked to my bladder when it wasn’t responding fast enough (it worked). I repeated affirmations like “this too shall pass” and “that which does not kill me…” I told myself that I loved me and later even sent myself flowers. I can’t prove that it wasn’t that I started to feel better -because- of those things, that it just was finally that the infections were burning out of my body & traumatized tissue was healing, but I can’t prove that it -didn’t- help.

All I know is that I will be forever indebted to Matthew for that change in mindset. He told me that I would look back and be grateful that I was tested and that I survived – I was bent by serious illness but didn’t break! When I came home, I got a temporary tattoo with the word ‘resilience’ for my forearm. The first one wore off, but I’m waiting for more. I’ll eventually make it permanent.

Not a Hero

So please don’t call me a warrior or a hero.

I’m just a person who was tested and survived.

If there’s any inspiration in my story, it is that I found ways to get through life’s trials when I became willing to look for them and to ask for help. Sometimes it’s one day at a time, for me sometimes it was one long hour at a time.

I also dusted off some coping mechanisms I always had, one of which is the ability of find humor in things. At one point in the hospital, I was a ‘test patient’ for a group of young nursing students who were nervous about giving injections, setting up IVs, changing dressings, and especially putting medications in feeding tubes which can be tricky. We laughed at some of what they had to do and at how nervous they were. It helped them, and it helped me. I won’t go into the gory details, but I had a nurse and an aid and I laughing till we cried when one night in the wee hours, my feeding tube ‘backfired’ all over me and the bedding which had to be changed by rolling me from side to side. Although sometimes in my life I hid behind humor, this time I chose to use it for something more positive.

That’s My Story and I’m Stickin’ to It

Would it sound strange if I said I’m happier than I’ve been in years? My ‘Surreal Ordeal’ has changed me for the BETTER. My poor sainted husband has chronic pain issues and, in an attempt to motivate him to come out and walk with me, I’m having a hard time trying to walk the fine line between motivation and bitching – so he says. Mostly he just laughs. Our marriage has become stronger. Friends and even acquaintances came out of the woodwork with their time, talent and words of support.

I’m also finding the craziest things to laugh about. I had an ‘attack’ of laughing till I cried over the silliest thing while he just smiled and shook his head. After 40 years of marriage, he’s still surprised that I’ve reinvented myself yet again.

We’re also listening to the music we both love but have neglected for too long. Imagine, if you will, two grey-haired old people in a sensible car wearing big fitover sunglasses singing at the top of our lungs to 60s rock music with the windows rolled down! ::grin::

Gratitude in Abundance!!!

I start the day and end it with making a list of what I’m grateful for. It’s something I also started in the hospital as I was feeling better (“thanks that I got a warm blanket in the middle of the night, thanks that it was ‘little Marie’ who came to visit me at the end of her shift”, etc).

Now it starts with “thanks for another day to find joy and laughter and love.” It’s usually very long with things like “I heard the bluebirds calling to each other – Spring is on the way!”

Thanks to YOU!!!

First, thanks to my dear friend Sharon Hynes who took over the helm when I wasn’t here. In addition to her extensive knowledge, her way of being in the world is so nurturing, reassuring, and kind. Thanks to moderators Kat Stephens and Beth Cox Barger who together with her kept the group as it should be: evidence based and positive. Thanks to the Advisory Committee for helping them to do that through what was a difficult time in June.

Thanks to all of you who when Sharon or I posted an update left comments of support, prayers, and love. Even though I wasn’t able to read them for the first 12 weeks, Sharon always told me about them, and I went back and read them all. I’ve never been the recipient of so much positive energy and I will ALWAYS be grateful. There IS research that supports the healing effect of that kind of energy, and I AM convinced that it was an integral part of my healing.

So, from now on, assume that I’m running rings around my garden with our dog (OK, walking briskly for now), that I’m happy and coping with the annoying but not life-threatening pain. You’ll hear about my 2 surgeries when I have them, but they won’t be the big ‘events’ that these were. No more ‘surreal ordeals’ for me – 2 is entirely enough! ::grin::

Here for You!

I am HERE FOR YOU if you need my particular brand of support. All you have to do is ask.

The image is from a book that helped me in the emotional recovery from my illness: ‘When You Are Ready, This is How You Heal’ by Brianna Wiest.

IN MANY WAYS, THE JOURNEY OF HEALING IS NOT SO MUCH A CHAPTER IN YOUR STORY, BUT CHANGING THE WAY YOU WRITE THE ENTIRE BOOK. IT’S A SHIFT IN THE WAY YOU MOVE THROUGH THE WORLD, ONE IN WHICH YOU MOVE FROM BEING DISAPPOINTED THAT LIFE HAS NOT MET VOUR EVERY EXPECIATION TO EXPANDING YOUR VISION TO PERCEIVE ALL OF THE MAGIC, THE WONDER, THE AWE, THE HEARTACHE, THE LOSS, THE GAIN, THE CONTRAST THAT MAKES US ALL PERFECTLY AND UNPREDICTABLY HUMAN.