Memorializing My Appendix: Navigating the Terrain of Post-Surgical Trauma, Self-Advocacy, and Transformation
Subtitle: 50 Shades of Wisdom
“When you have your health, you have everything. When you do not have your health, nothing else matters at all.”― Augusten Burroughs
This is my third post in a series called “50 Shades of Wisdom” honoring my 50th birthday this year. I’m taking the opportunity to look back at some lessons learned.
In this article I am stepping back almost a decade to my first major surgery experience. Just looking at the pictures for this piece brought up some of the feelings I experienced during this emergency journey. All throughout this story there are tips on how to advocate for yourself and take ownership in navigating our complicated health care system. So here I go…
Oh Christmas Tree, Oh Christmas Tree,
The Doctor I Did Not Expect to See:
Navigating the Unforeseen Perils of Holiday Health
This medical journey began on December 23, 2015 as I was just arriving in the Los Angeles area with my fiancé, now wife, to visit her family for the Christmas holiday. After visiting them we had planned to continue our road trip up to Northern California to visit my family. My wife had had rotator cuff shoulder surgery two weeks prior and was in an arm brace, so we decided driving would be easier. Elevation climbs and flying can really hurt after a surgery and is generally something to be cautious about–consult your doc. It was about a 6-7 hour drive to SoCal for us.
Like we do on most visits, we ordered food shortly after arriving. I remember feeling like it wasn’t all that great and starting to feel sick-ish thinking to myself that it must be from the long day of driving.
The next day I was REALLY not doing well and thought I had food poisoning. Soon, I was throwing up. “That’s weird. Even at my sickest I never throw up” I thought (Later I learned that pain was what made me throw up. I had no idea it could do that). At this point my in-laws called an ambulance as I also had a fever and apparently looked like a ghost.
The paramedics came and said that basically I had okay vitals. From their standpoint there wasn’t much they could do but it was clear that I was not well and they suggested that going to the hospital wouldn’t be a bad idea.
My in-laws and fiancé inquired about which hospital they would take me to if I rode with them vs if they drove me. We then decided to travel on our own to the hospital we chose.
Depending on your condition you can choose which hospital to go to so always ask.
Arriving at the emergency room I was now doubled over in pain and could not walk without assistance. In excruciating pain I laid on the floor. The security guard said he knew I was in pain but they could not let me lay on the floor as it was not sanitary. Then they put me on a stretcher and I waited in the hallway in agony. My mother-in-law pleaded for someone to admit me as I was visibly in so much pain. I finally got triaged (assessed) and admitted. Soon after I felt the magic powers of an intravenous pain medicine called Dilaudid. It was a miracle.
They took a CT scan and saw that my appendix was about to rupture. When the doctor came to tell me this I remember being in shock and wanting another opinion. I couldn’t believe it. I was feeling NO PAIN now, thanks to the drugs, so I tried to convince my fiancé and her Mother that all was well. You can see this in the picture below with me smiling big, not realizing that my life was in serious danger from a tiny organ that we don’t even need anymore!
I have written elsewhere on my Substack about my degenerative disc disease. So my final thoughts before surgery surrounded laparoscopic1 vs a traditional incision/surgery. Laparoscopic is often less challenging for those with chronic pain like mine so I requested it and the doc complied.
Remember, it’s your body and you can request how you want to be operated on. Medical specialists will advise you accordingly so you can make an informed decision.
When I came to after surgery I remember asking why my yoni (vagina) area hurt and they said I had been given a catheter. Okay, I thought. So this is a common thing with surgery. I had no idea but it makes sense I guess so we don’t pee all over LOL. Good to know for next time and for you to know too so you don’t wake up like me, concerned about what had happened when you were unconscious. I get that they are rushed in these emergencies but it seems they could speak about this afterwards to patients without waiting for them to nervously inquire. I digress.
The doc said it had gone well and that my appendix was gangrenous and rupturing when they got in there. I was put on a script of Ciprofloxacin to stop infection. It is a weird feeling knowing you would be dead without modern medicine. I sat with that for a bit and still do.
In all the fog of that night I remember a priest coming in to visit me asking if I was religious and me responding I am spiritual. To which he replied something about how spiritual people are more practiced than religious ones or something like that. It was a decent conversation believe it or not. Here it was, a healing with priests from my Catholic school days happening in this strange hospital in southern CA.
And so, I found myself, a practicing neo-pagan, spending the night before Christmas Eve in a Catholic hospital complete with room-to-room holiday carolers (Who didn’t know Little Drummer Boy as I requested LOL). Looking back it was all a bit much.
But this was just the beginning...
I was told I could not make the drive to Northern Cali for at least 24 hours. So I spent Christmas Eve in SoCal and my first hurdle was trying to pass the gas that was put in my abdomen in order to do the surgery.
This is so bizarre, I thought. Never had I wanted to fart so badly in my entire life! I drank soda from a straw on the nurse's advice after we called, walked in circles slowly around the living room clutching my partner’s arm, and prayed for things to start moving. This was a worse pain than the dang appendix!
Looming was my determination to make it up north to my parents and family. I was 41 years old and had never spent a Christmas without my family. I know I know, that is rare but Christmas in my parent’s home is magic, so why leave?
But even more than this, I just wanted to be with my parents so badly. I had a yearning for them like a little girl does when she hurts herself at recess or has to go to the school nurse. I was also determined to get a little Hermey the dentist toy from the 1964 television special Rudolph the Red-Nosed Reindeer to my two year old nephew who loved him! I was fixated on getting home!
So on Christmas morning we began the trek. My beloved drove us all the way, eight hours, with one arm. I still can’t believe we made it, just because we were such a broken team with our injuries. I am forever grateful to her.
One should never underestimate the strength of sheer determination.
We made it to my parent’s house and stayed till after New Year, conjuring up as much joy as possible with the unforeseen twists and turns. I was relieved to be home.
Lost in the Medical Maze: When Reality Takes a Wild Turn on the Road to Recovery
While home, I visited my parent’s doc because I did not feel quite right, but there was nothing noticeable to her. I assumed this must just be what it feels like to heal from surgery, but my abdomen area did feel really swollen. It was visibly so and all agreed it looked really big. We made the thirteen hour drive home from Northern California to Northern AZ and I just kept resting.
The night my antibiotics ended I started burning up, and on the advice of a friend with medical knowledge, went to my doctor because she was fearing I was septic. My local doc saw my fever spike during the visit with her and said I needed to go to the emergency room right away.
I went to the emergency room on January 6th for the second time in two weeks and was admitted to the hospital. Turns out I had grown a football-sized abscess while taking Ciprofloxacin! I didn’t even know that was possible, but that explained my expanding belly. Antibiotics sometimes meet their match.
I saw a doctor who used a CT Scan machine to guide him in inserting a drain2 to get the nasty infection out of my body (see pic below). The drain was on my back side above and to the side of my butt crack. Weird place I thought, but I’m not a doc. I would have been a terrible medical doctor. He told me that he would check it again in a few days with the CT so that I would not go home with an abscess.
They needed my fever to go down and my vitals to stabilize before I could go home. I was given more antibiotics. So with this news, I began the adjustment to the unexpected that was now before me.
As you might imagine, the drain was not comfortable and I could not really lay on my back with pillows under my knees like I often do for back pain relief. Shortly after the drain was attached, I was like “What’s that smell?” We sniffed pits and all and then realized the horror–it was the oozing fluid coming out of me! After gagging and dying inside a little from embarrassment and shock, I immediately begged my partner to run home and get the peppermint essential oil. Thank goddexx that worked and the room now smelled of peppermint and On Guard by DoTerra. The nurses were like “It smells great in here” and we all had a good laugh. I don’t know how they survive stuff like that on-the-daily. Literally angels among us.
Re-imagining Your Healing Tools through the Frame of Resilience
I was getting extremely down about this whole ordeal. I had a dear friend who helped me shift my thinking on all of this, reminding me of the power of our mind in healing.
She told me to look at the drain as a tool in my healing. To see it as a shield or a sword that was preventing me from needing more surgery or getting sicker. I hated everything about it, but she helped me reframe this to see it not as the enemy, but as a warrior or hero for my body fighting a nasty infection.
She also advised me that when I was about ready to fall asleep, to place my right hand on my belly where my appendix was and my left hand on my heart and to talk to my body in a good way. It had been through a lot and needed comforting too.
Remember that healing is about all of the body, so don’t forget your mind or mentality is in this mix too.
Each part of this medical journey was about embracing the mystery of being in the unknown while also adapting to the changes presented to me at each turn. It was constant. I wrote about accepting the mystery involved with chronic pain in a chapter called “You Are Not Broken: Finding Love in the Pain Points” as a part of Tina Green’s book The Life-Changing Power of Self-Love if you would like to delve more into this idea.
In essence, this is a life-long learning and sometimes I am a champion at embracing mystery and sometimes I fall to my knees in sorrow before I get back up and keep walking on into the darkness.
If we are committed to our growth, our journeys are marked by strides forward, highlighting our continuous evolution.
Hospital Hustle: Surviving the Wake-Up Call Marathon and More
It was my first stay in a hospital. A rite of passage in itself. I was there for nine days. Those of you who have done this know that it is close to impossible to rest, even though you are exhausted. They check your blood and vitals so much and at like 5:00 a.m. –it is draining. Not to mention the beds in hospitals really aggravate my already challenged back problem, making sleep and getting comfortable difficult.
It was also extra hard for my partner to be comfortable in the room with her shoulder recovery and just a chair to sleep on, but wow was I feeling needy and scared. So she complied and spent EVERY night in the hospital with me. Remember, in this story, we are not even married yet. That’s LOVE.
A “funny” aside is that she is THE BIGGEST animal lover you have ever known and every time she would go home to feed our cat (our dog was with a friend) the volunteer hospital dog would come by and she would miss it! To this day, she recounts this part of the story, even bringing it up when I inquired about another detail as I was writing this article!
The next days were filled with a series of frustrations. They sent in a Resident doctor who was sick herself, wearing a mask, and I was not comfortable with that because I was fighting this huge infection. I can’t remember why, but she wanted to give me valium. I told her it makes me nauseous and sick, but she insisted. I threw up instantly. Guess she should believe the patient. I wanted another doctor.
The next doctor who came in around day six or so said I should be feeling good about leaving now. I said that I was told I would have another CT to check the size of the abscess before leaving AND I was still on morphine waiting to be weaned off. He then proceeded to tell me that CT scans were dangerous (because they use radiation) and I shouldn’t take them lightly. I thought, “it's my body and my decision and it's not like I get these things everyday of my life.” Needless to say, we were not getting along.
I continued and asked him “what makes your opinion more important than what the CT doc told me?” (they were both MD’s). He literally said, “Because I’m in charge.” I vehemently despised this comment, given that we each have sole authority over our own health!
He continued saying something like “why don’t you like me?” I attempted again to convey to him that I was articulating and expressing my needs, but he was disregarding them. Today we would say he was 100 percent mansplaining to me how I felt. (Later when I read my hospital notes he had written something like the patient does not seem to like me and I am not sure why–he had no clue!). He left my room.
I was in tears. Sick, scared, frustrated and on too many drugs to be my normal self. It was all starting to add up.
Sometimes when people learn that I am a professor of Communication Studies and Gender Studies (which he did), this strange sexist power dynamic surfaces. I have experienced this more than once so I guess it is not so strange.
To own my part in this interaction I will admit that continued hospital life and medications can make one feel like they are in a high speed wobble and can’t get a grip on it all. I was not at my best. But there is no excuse for not honoring a patient's wishes. He should have just bit his tongue and let it go–it wasn’t his CT Scan or his choice which doctor’s opinion to listen to.
I was sure this was about needing the room back or some administrative thing but my partner had only one hand and the drain needed emptying and cleaning and I couldn’t do that by myself. I wanted that second CT so I could know all was well before getting the drain out or going home with it still attached. I also needed to be off the morphine. I did not feel like the abscess was gone. I just knew it wasn’t.
Stuck about what to do next, I gave my parents a call. They are amazing in a crisis. I was talking with my Dad who used to be a county manager and “knows things.” He asked me, “Have you contacted the hospital advocate?” I said no, what/who is that? He explained that most hospitals have them on staff and you can contact them and they are your advocate while you are a patient there.
There IS such a thing as a Hospital Advocate who can help you during your hospital stay–who knew!
My Dad also explained to me that hospitals that are designated “trauma hospitals” are good because they have good surgeons etc. which made me feel better too. So he spoke to the advocate for me first, filling her in on the not so great experiences and especially the power struggle I had with the one doc about leaving and the CT Scan. The hospital advocate came to my room. She was understanding, clear, and was the mediator for the remainder of my experience and it sure got better.
If you are picking a hospital and don’t know much about it, see if you can find out if it is a trauma hospital.
So the CT Scan could not have been too life threatening because they let me have it after the advocate got involved. Sure enough, my football abscess had only shrunk to a softball. It was not gone. My intuition was correct. I stayed in the hospital a few more days.
When I finally went home, the drain was not out yet and we got a home health nurse. That was not the best experience as my partner seemed to know more about cleaning and dealing with the wound around my drain than she did, but we survived. We were told it should not feel hot to the touch or it might be infected. One day it did feel that way so reluctantly we headed off to the ER for the third time that month. This visit had a great outcome in that they said the abscess was gone and the drain could come out! Yay!
I was feeling like I had turned a corner. Friends had been so amazing bringing us food and checking in. My Mom came to stay for a bit and my two friends were over drumming on our community Mother drum Zendaya helping me to ground after all the turmoil. As they were playing I started to feel itchy and my throat felt weird–like it was closing up a bit. It was getting worse. Off to the ER for trip number four with what I would soon learn was an allergic reaction to antibiotics.
After this health journey I have developed a long list of allergies to life-saving antibiotics. I am fully aware of the overuse of antibiotics in our society but when you need them you need them and they can be life savers. This has been a continued struggle finding anti-b’s that work for things now like chronic UTI’s from menopause related health issues. But that I will save for another story.
Sharing Your Medical Story: Honoring the Process
So, after this month-long escapade that felt like years, I had learned so much. And still, I had some trauma about it all. The constant visits to the ER within a short span took a toll on me physically, mentally, and emotionally. Moreover, the need to advocate for myself while in such a vulnerable state, a time when we assume others have our best interests at heart, left me with some battle wounds/scars.
This experience deeply underscored the importance of trusting and acting upon my intuition.
I remember my Dad telling me that “this too shall pass” a favorite phrase of he and my Mom’s. It’s usually true. That I would feel better even if it did not feel like it right at the moment. That much of my fear was because I just hadn't been in the hospital before to have the experience of knowing that you can get through these things and come out the other side to being well again. This was true. AND, I needed to process and tell the story.
I want to make clear that there is a difference between telling a story to heal and accept or understand what has happened and letting a story hinder you from evolving as a person.
What I mean by this is often in spiritual communities we hear talk about not telling yourself stories over and over about something in your life. It’s true. Narratives that are negative or repetitive with no change can become debilitating, depending on the message.
However, putting the story into context, processing the lessons, and absorbing what happened is important and does take some time.
In my case, this moment was a life-changing event in my early forties and I needed to talk about it for awhile. I needed to memorialize my appendix.
Before I end this piece, I do also need to mention that I quit smoking during this whole ordeal. From the time I was 15 or 16 I had been a social smoker. I would smoke about 2-4 cigarettes a day and more if I was at a bar or party etc. I had this habit for about 25 years. Being so sick in winter there was no way I was trekking myself outside into the snow to smoke. I didn’t even feel like it.
So I was able to seize this moment to break my physical dependence on nicotine and the additives in cigarettes. The mental and emotional addiction part was harder and came as I started to feel better and all my smoking rituals were no more (e.g. after writing, after dinner, after a drink, with certain friends at my wedding that happened eight months later etc.). But I did it and have not had one cigarette since 12/23/15! Truth be told, I loved being a smoker and if it was not so bad for me I would still be doing it! I often joke that if I live to be 90 I am going to start again!
For me, my appendix journey was a challenging experience but I grew a lot from the lessons and made some significant life changes as a result. You really learn who your friends are and what your support system is made of. I was humbled by this.
Moreover, I truly learned the meaning of the quote at the top of this piece. “When you have your health, you have everything. When you do not have your health, nothing else matters at all.”― Augusten Burroughs
To learn more about Laparoscopic Surgery check out this link: https://www.webmd.com/digestive-disorders/laparoscopic-surgery
If you want to know what a medical drain does you can read about it here but fair warning–it is indeed gross.