Healing from 23rd Surgery (Updates)

 I am two months post-surgery, and the healing is ongoing. I am not going to lie; recovery has not been easy. It's not about the pain, the itchy scars, or the swelling. It's the fact that I am not 100% yet according to my standards and my timestamp. In my opinion, I should have already crossed the finish line. Instead, I am on mile marker seven on a ten-mile race. 

Dr. Patel informed me that I should anticipate recovery to be six to eight weeks, and here I am, two months in and still waiting to hear those magical words from him, " Everything is healed, call me if you need anything." What I consider setbacks, he anticipated. As he has explained, the skin flap is heavy, and due to past surgeries, it will take my body longer to heal. Parts of the skin flap have continued to open, exposing the titanium mesh. I now need to allow my body to work its magic. The wounds will close on their own. 

There has been progress, but I have at least two areas of concern. During my last appointment on Monday, March 14, Dr. Patel said that if the wounds do not heal within a month, he would need to put me under general anesthesia and stitch me up again; this I vehemently do not want. 

I am desperate to return to my 

Photo was taken 1-16-2022

life placed on pause due to recovery. I want to go out and enjoy the sunshine. Feel the sand under my toes and smell a mixture of sunblock and ocean. I want to cook. I want to wear heels and wedges and do my make-up. As crazy as it sounds, I want to clean! Pick up the broom and sweep! On that note, I got reprimanded by my mother and family friend, a physical therapist, for sweeping. To my defense, that day, I felt fantastic and strong and capable of sweeping the perimeter of my kitchen. However, I will admit that I knew I should not have been cleaning, but I am a rebel ( sorry, not sorry (input evil laugh)). 

I know that I need to be more appreciative and loving with myself and my body. After all, undergoing 23 operations is not an easy feat. My incredible body has never betrayed me, so why should I lose faith now? I cannot. I will not. 

30 Days After 23rd

Today I celebrate one month since my last surgery. I am not sure the word celebrate is the proper adjective to use for one-month post-surgery. However, I am healing and have had zero complications, minus one minor setback that I will explain.

 

About the minor setback... 

This Tuesday morning, as my mom was cleaning my wounds and changing some bandages, she noticed that two of my stitches had popped, and the wound had begun to open. She washed the area and told me to contact my medical team. My mom also took some pictures to send to Dr. Patel and his team to see how the skin flap looked. After emailing my medical team back and forth, I was scheduled for an appointment for Wednesday at 3:20 pm. 

ARNP Krissie cleaned my wound and explained that Dr. Patel was in surgery, but he had been paged and would take a look at my skin flap. Once Dr. Patel looked at the skin flap and the stitches that had popped, he instructed Krissie to remove the remaining stitches and that he would be replacing them with thicker thread. And so, I am now the proud owner of 12 new blue stitches and four steri strips! Once the local anesthesia wore out, I immediately felt horrific pain. I literally could feel my face swelling again. Due to the pain, I did not sleep much during the night. Therefore, I spent all Thursday in and out of sleep and taking pain medicine. Thankfully, Friday, I felt better, and at night I was able to sleep, only waking up once throughout the night. I have a follow-up on the 28th of this month. 

saying goodbye to 2021

You may be asking yourself why the stitches opened. Well, the answer is quite simple, gravity. As Dr. Patel explained, the skin flap is heavy, and now that the swelling is going down, it has less pressure holding it up, so gravity took over. The 12 new stitches and steri strips pull the skin flap upward, and the pressure bandage I have around my head provides support. 

And so I find myself one-month post-surgery, and I still have many more until I am fully recovered. I honestly have a lot to celebrate because I am healthy and healing, my mental health is also stable, and if I start feeling unstable, I know who I can turn to for support. I am sleeping better throughout the night, eating more, and my leg is getting stronger. The swelling on my face and the droopiness of my right cheek will take much longer to normalize, but at least for now, there are no signs of facial nerve damage. 

 Let the healing continue!

Post 23, part 2

 Recovery from any surgery requires patience, a skill I have gained through multiple surgeries. As I have expressed in previous posts regarding surgeries, I tend to bounce back relatively quickly; however, my body is taking its time to recover from
this surgery. I am healing from different incisions; the right side of my face is swollen, my neck is sensitive due to the trach and Penrose ( a Penrose is a type of surgical drain), and my left leg is weaker than my right due to the skin flap. So, it will take time before I am at 100%. 

Tuesday, January 25

I said goodbye to the ICU! I was transferred to a standard room on the fourth floor, room 402. After settling into my new space and saying goodbye to my mom, I put on a movie and got comfortable in a recliner. At one point, my suction fell; I figured I could stand up, walk the two feet towards my bed where the suction was and pick it up. I did not think I needed to call my nurse to help. After all, it was a short distance. So, I put my movie on pause and slowly scooted to my bed. Two nurses walked into my room as I leaned against my bed to grab my suction. 

Out of ICU

Needless to say, they were not happy; they reprimanded me, telling me that I could have gotten hurt and that I needed to call my nurse if I wanted to move. They helped me get back into my chair and grabbed my suction. My assigned nurse, Nick, came in later and jokingly said, " I heard you were a runaway." I promised him and the other two nurses that I would call for help moving forward. 

Despite my vow not to stand up again, a nurse placed an alarm on my recliner and bed. In hindsight, I should not have stood up despite my self-assessment that I was able and strong enough to perform my actions. 

My brother Andrés also visited me and slept over! By far, it was the best night ever! We watched movies and took a stroll around the floor at 10 pm. 

Wednesday, January 26 to present

Freedom! After one whole week in the hospital, I was discharged! Oh, what a happy day! Being home has been the best medicine! There is nothing better than sleeping in your bed and eating home-cooked meals. At home, I do not have to worry about a chair alarm going off every time I stand from my recliner. 

I went back to Moffitt on Wednesday, February 2, for a follow-up and to remove the staples from my left thigh; I had a total of 30 staples! Kathy, Dr. Patel's nurse, removed the staples and examined the wound; she said my leg was healing perfectly and that I had to increase my walking distance to rebuild my strength slowly. My next appointment is Tuesday, March 1.

As I am nearing a month post-surgery, I can slowly see the results. My left leg is stronger with each passing day. My tracheostomy and Penrose drain in my neck are nearly closed. The swelling on my face and head has significantly gone down, and the stitches have started to dissolve. But, please don't misunderstand; I still have a long road ahead of me to see full results. Dr. Patel said it would take up to ten weeks before I see results, but fully recovering from such extensive surgery will take about a year. 

I do not know if I will need a follow-up surgery once I fully recover, and honestly, that is the least of my worries. Right now, I am focused on healing from number 23. I have had zero complications. I follow all medical advice and listen to what my body, mind, and soul need, and what I need most is patience in the healing process. 

Post 23, part 1

 I am officially two weeks and a day post-surgery; I honestly cannot believe it has already been 15 days since I had surgery! I spent a week in the hospital. Six days were in the ICU and one day in a standard room; this was the longest I have spent in the hospital following an operation, I usually leave the hospital on day two post-op, but this time was different. 

1-19-2-22, before surgery

January 19, 2022 Surgery day

I arrived at Moffitt at 5:15 am to register and prepare for the surgery; I was wheeled into the OR by 7:15 am, and surgery began at 8:35 am. Due to the ongoing COVID pandemic, my mom was the only one allowed in the waiting room. I cannot begin to imagine how my mom felt being alone in the waiting room. Yes, she kept in contact with family and friends, but still, I would have liked for her to have someone else accompany her while I was in surgery. By 4 pm, I was wheeled into recovery.

My first memory after coming to is of being in a dim room and having my mom next to me. I was unable to speak and in pain. My mom explained that I had a tracheostomy which prevented me from speaking. I recall pain on my left leg and an overall heaviness on the right side of my face and neck. I kept coming in and out of consciousness that night. At one point, my mom left, and my dad came and spent the rest of the night with me. My dad later told me that I kept asking him to rub ice on my chapped lips; I have very little recollection of asking him to do this; however, I recall having him right next to me and holding my hand. 

On Thursday morning, my dad explained that that surgeon had placed the tracheostomy as a preventive measure; due to the surgery, there was a possibility that the swelling could extend down my neck, which could cause difficulty in breathing. The trach was a second layer of defense in case I could not breathe on my own. Thankfully, there were no complications with my breathing. Despite understanding the reason behind the trach, I wanted it out! I was in constant discomfort. I used pen and paper to communicate because I could not speak. Drinking and eating were also challenging. I was not happy. 

 Friday, January 21

One of my doctors placed a cap on the trach; this allowed me to speak. Of course, the first question I asked was when the trach was being removed; of course, my doctor had no specific date but said soon. I was thankful to be able to speak once again. However, my voice at first was weak and sounded robotic. Even though I could talk with the cap on the trach, eating and drinking remained a challenge; to do either, I had to tuck my chin to facilitate swallowing. Additionally, the right side of my face is swollen from my temple down my cheek to the nape of my neck; this means I cannot chew on the right side.

 Monday, January 24

Finally, one of my doctors walked into my room at 7:15 am and removed the tracheostomy! You have no idea how happy and relieved I was! I immediately noticed my voice improve, drinking and eating also enhanced. It has taken about a week for me to gain full vocal strength. 

Check out part 2 for the continuation of my post-surgery progress...

23rd Surgery, Life with NF

 In June of last year, I became a patient of Moffitt's NF clinic; I was honestly apprehensive with the whole process. I did not want to be treated like a guinea pig, being poked and prodded for having a condition that affects everyone living with it so differently. My fears quickly vanished. Dr. Mahktari saw me as an individual, not as another case for the NF clinic; she and her APRN Amal spent a  solid hour conversing with me. It was not a Q&A. So I left my first NF appointment with five scheduled MRI/CT-scan appointments, an appointment with a neurosurgeon, and a geneticist. I had a busy NF-filled summer ( as if I never have an NF day!). 

Dr. Mahktari sent me to see Dr. Tran after I showed her two pin-prick size wounds on the side of my skull. I knew instinctively that the titanium mesh was causing the tiny wounds. When Dr. Tran reviewed my brain MRI and examined the open skin, he determined that at that time, in early July, it did not require surgical intervention; however, we would monitor the wounds for any changes. 

Fast forward to early October. I made an appointment to see Dr. Mahktari because the skin on the right side of my skull was red and sensitive. She agreed that the area where the wounds were appeared irritated and scabbed. Dr. Mahktari took pictures of my right temple where the wounds were and sent them to Dr. Tran's team. I received a call later that week from his team; they wanted to schedule an appointment right away. When I finally saw Dr. Tran, the scabbed area had expanded, and the irritation had increased; he cleaned and carefully removed the scabbed area, underneath was the exposed titanium mesh.

So now I am scheduled for surgery on 1/19/2022, making this surgery number 23. 

In preparation for this upcoming procedure, I took the initiative and got rid of my long locks! This surgery is one of the riskiest I had endured as it will involve replacing the mesh that I had placed when I was 17 years old. This surgery is anticipated to last ten hours and includes a skin graft.   I am ready to take on this surgery, just like I have with the 22 others. I will recover and live my best life. 

As always, I have NF, but NF does not have me! 

I invite you to follow me on my NF journey on Instagram and Twitter @Mynf_life 

He Stood Me Up... I Won

Yes, we are totally exposed when we are vulnerable. Yes, we are in the torture chamber that we call uncertainty. And, yes, we're taking a huge emotional risk when we allow ourselves to be vulnerable. But there's no equation where taking risks, braving uncertainty, and opening ourselves up to emotional exposure equals weakness.- excerpt from Brené Brown's Daring Greatly-  I highly recommend reading this book; the insight you will gain is priceless. 

Whichever way you look at it, being vulnerable is scary and uncomfortable. I share this because the fear of being vulnerable is not exclusive to having NF; it's the anxiety all humans experience. Opening up your heart and letting someone in is frankly terrifying. It is the pinnacle of vulnerability. It becomes significantly more problematic if previous experiences were not so good. Nonetheless, I believe it is a positive experience to dive right in and swim in the ocean of vulnerability. 

My biggest fear is rejection, especially from someone I am interested in being more than friends with, and yes, I am fully aware that we all experience rejection. However, I want to take a moment and discuss what it feels like to be rejected for something that you have no control over because this is something in particular that not everyone will experience. 

My facial disfigurement caused low self-esteem and confidence as a teenager and well into my mid-twenties. I did not feel beautiful, and therefore I did not believe anyone else would. Despite not feeling pretty or attractive, I still craved to have a high school sweetheart. I wanted my own Hollywood movie. Spoiler alert, I graduated high school never having been kissed! -Get it, Never Been Kissed, Drew Berrymore's 1999 movie? So technically, I did get a Hollywood movie ending.-

Even though I've experienced being crushed on and being a girlfriend, I still at times struggle with realizing that I am beautiful, attractive, and worthy. I am still very much terrified of not having my feelings reciprocated and of being rejected. These insecurities cause me to be hesitant about dating, especially after my three-year relationship ended. 

After a couple of years of being single and healing from an unhealthy relationship, I felt ready to join the dating pool again. I downloaded a dating app towards the end of October and found an instant connection with Bluto. Our conversations were fluid, easy, and at times profound. I took a risk when I told him about my 20 surgeries, NF, and prosthetic eye. I figured he had already seen pictures of me, so he knew I had a facial disfigurement. Why not tell him why I look the way I do? He would either unmatch me, or we were going to continue talking. His reaction could not have been better; our conversation continued that day and the following. 

After almost two weeks of continuous conversations, we decided to make plans and meet. I was beyond excited! The Saturday we were supposed to meet, he messaged me around 5 am apologizing because he had to reschedule. I was disappointed, but I understood, life can throw curve balls that we have to catch. So we rescheduled after he explained what happened. We agreed to meet the following Saturday. When Saturday came, he messaged me early in the morning requesting we reschedule to meet on Sunday because he forgot he had to take his elderly mother to the hair salon. I was not as understanding this time, but I was still eager to meet him, so I agreed to meet him on Sunday. 

I woke up Sunday with butterflies in my stomach; I had no cancellation messages, so I figured we were still on. I got dressed and left my house around 11:30 am to meet him for lunch. I arrived at the tavern, went inside, and sat at the bar near the entrance. After fifteen minutes, I called Bluto, but it went straight to voicemail. I did not bother leaving a message. Instead, I walked back inside and ordered a beer and food. 

Waiting for Bluto

Bluto stood me up. However, I still came out winning because I took a risk. I allowed myself to be vulnerable. I got out of my comfort zone. This experience has not detoured me on dating; I know I will find my Mr. Right. 

Permission to...

Life has been pretty busy for me this year. I know, how can life be busy when we are still living in a pandemic? Well, life does not stop just because of Covid. But honestly, the reason I have not posted is that I keep deleting everything I've been writing. I cannot count the number of times I have rewritten this post. Ironically my hesitation in publishing something is exactly what I am going to share in this post. I have a nasty habit of not allowing myself to just flow. I do not give myself permission to simply write and post for fear that my words are not the right words or that what I have to say is not deep or impactful. 

Not giving myself permission to just write and post does not stop with my blog, but sadly with many aspects of my life. This in the past has been a hindrance as I now recognize that I've missed out on great opportunities or have punished myself severely for what I believed to be catastrophic mistakes. 

Now I do not want to give NF the power and blame my condition entirely for this behavior, however, I do need to say that NF has contributed to my hesitation in many aspects of my life. And yes, I have always said that I am not my NF, that my NF is just an aspect of who I am; but you must understand that the person I am today, is not the same person that cultivated these fears and hesitations. 

Even though I have improved enormously in giving myself permission to feel, act, say, and yes make mistakes, sometimes, I have setbacks and simply freeze. Case in point, writing and posting this piece. 

So, my message to you is to give yourself permission to live your best life 100% of the time.  Allow yourself to feel every single emotion. Welcome uncertainty, take a risk, for all you know you are one step away from checking something off your bucket list. 

One of my goals this year is to not give fear power but instead to simply flow like water.