I last posted four years ago and I discussed how life had impeded my travel dreams in a myriad of ways. First I met a man who I fell in love with whom I later divorced, I waited for my Australian citizenship, I saved for a full year trying to boost my savings, a pandemic hit and the world closed and once again I had another roadblock to my travel plans, my health.
Not long after I last posted and I had told work that my time was limited as I had dreams of Europe in my near future, weird things started to happen to me. It started with my balance being off, then I was starting to get nauseous and it would cause vommitting and before long I started to experience nystagmus so bad I would not even drive anymore. I saw three different doctors all of whom told me it was just vertigo so for a month I stayed home and waited to get better but to no avail. After a month of what seemed like torture I found a doctor who would ultimately be my savior. After meeting with her, she told me that the nystagmus I was experiencing was the worst she had ever seen and was the first doctor who ordered any kind of testing to be done. She requested a brain MRI.
After the MRI, I wasn’t perfect but I certainly wasn’t normal either. As a result, I had called family and informed them not to worry as I was feeling pretty nonchalant about the whole thing.
The next morning, my doctor’s office called and asked if I could come in ASAP. They would make a slot so I can see my doctor. I knew something bad was up. Why would they call requesting an imminent appointment otherwise? Sure enough, white spots were found in my brain MRI and I was being referred to a neurologist. It was the beginning of a long and arduous journey.
The neurologist wondered if I was suffering from multiple sclerosis but in order to diagnose it, they needed evidence that I had experienced demyelination elsewhere in my body and so a spinal MRI was requested.
After my spinal MRI, I received another call from my doctor to come in immediately. I called home which was thousands of miles away and cried to the point of hyperventilating. With my dad on speaker, my doctor informed me that the MRI showed a 20cm mass in my abdomen that had to be surgically removed. They would not be able to biopsy it to tell if it was malignant or benign cancer until the surgery.
Over the next month, I went to see gynocolgists, I completed endless bloodwork and conducted further testing before my surgery was scheduled. I had a complex ovarian cyst meaning not only was it a cyst but it was also a terratomma. My gynecologist assured me that based on my bloodwork it was probably not malignant. At least that was reassuring. Over the coming weeks the organization continued and my sister was going to begin the process of trying to get time off work to help me. In the meantime, dad would be flying out to Australia for my surgery so that I was not going to be alone on the day and had assistance in the recovery.
I’ll admit that in the lead up to surgery, I was actually feeling a lot better. My balance improved, the vomitting decreased and the nystagmus had worked its way to a bearable amount where I felt safe to drive again but despite this, I had a giant mass in my abdomen that could not be left behind. Two days before surgery was scheduled and my last day of work, an episode of nausea took over and as I knelt on the bathroom floor purging my guts, I experienced a shooting pain in my back so severe that I was not able to stand. I literally was crawling on hands and knees, crying out of the bathroom. One of the teachers saw me and got help which ultimately led to a phone call to an ambulance who drugged me enough to get me to slowly relocate to the gurney for transport to a hospital.
I told them I was scheduled for surgery in two days and all they did was give me some muscle relaxants before sending me home. I couldn’t believe my luck. My dad was arriving the next day and of course I was feeling so sick. A colleague picked me up and took me to the airport but even she could tell I was not well. She told me, that I was way too quiet on the drive and while waiting at the airport for my father’s arrival, I got out of the car to vomit into a nearby bush.
The relief I felt at seeing my father was unworldly and I looked into the mirror that night knowing it was the last time I would see my stomach without a giant scar across it.
At the hospital, nerves kicked in big time. I was convinced I would die on the table. I was so worried in the lead up that I went as far as writing up a will of the few possessions I had if something were to happen to me. Dad assured me all would be fine and when they took me to the OR, they informed me of a change of plans. The teratoma had gotten so big that they would not be giving me a horizontal c-section scar as previously planned, but a vertical one instead. Not only that, but there was concern over the damage it had done on my ovary so although they would do what they can to keep it, they informed me that it was possible that my right ovary would be removed.
Of course, I didn’t love the options I was presented with but did I have a choice? I consented and the surgery went well. I remember waking up in the recovery room loopy and demanding for my phone so I can call my family that was waiting half way across the world for news. Not only that, I swear I felt a hand on my left ankle. I opened my eyes to look at who was trying to get my attention only to find that no one was there but instinctively I instantly knew it was grandfather who had passed almost 15 years ago. No one was in the room and despite being drugged to high heaven, that simple touch made me feel so at ease and the pain I was experiencing simply washed away. In fact when nurses came to check on me they asked me from 0-10 what pain I was experiencing. I couldn’t lie, “0.”
Of course I was admitted into the hospital for the next 5 days. I was sore of course and I was constantly monitored with doctors and nurses regularly in and out of the room. My surgeon did come in the next day and stated, “Did you know your terratomma partially ruptured?” Of course I did not, but it made me wonder if that was the excruciating pain I experienced two days prior. As a result, they had to put a drain in. Removing that was surprisingly painful. The training nurses who came in to hold my hand as it was yanked out laughed when I screamed and said, “That felt like you were ripping out my vagina!” Furthermore, with the terratomma so large, they were unable to save my right ovary.
After I was discharged and sent home, I thought the worst was over, but I was wrong. Within a couple of days the vommiting increased, my balance declined to the point where I had to hold onto furniture or another person, I developed the shakes like I had Parkinsons and my speech was becoming slower and slower so much so that I worried I wouldn’t be able to communicate with anyone. I made phone call after phone call and appointment after appointment. I even went back to ER but I was sent home. A neurologist requested for a spinal tap and bloodwork was done 1-2 times a week. Sadly, after that, we still had no answers. After a month of my father being in Australia, my best friend flew out to support me which of course was right after my spinal tap and the headaches and vommiting were incredibly severe. The doctor stated that I must have a spinal fluid leak and that I should return to the hospital. A leak was actually the problem and I was admitted again and told to rest. It was during this time, my best friend arrived to relieve my dad. I had to call her from the ER as she was headed to the airport so I could tell her that my father would have to be the one to pick her up.
After being discharged my General Practitioner made another neurological referral but for a doctor that was located 3 hours away! By the time that appointment came my best friend had departed and my sister had arrived. Although none of the tests I had conducted provided any answers, I must say that my new neurologist was excellent! He sat with me for over an hour going over my case and stated that he would be in Canberra a week later and that he was happy to swing by and pick up my MRI results from my own home. On top of that, he was going to bring my case to three different doctors to get their opinion on it as well. After all that, and further investigating, it was determined that that the terratomma I had removed had a neurological component which must be why I was having so many crazy symptoms. If he was right, I should start to improve over time. For now, he was giving me steroids as that helped freeze my speech issue and requested for another MRI in 6 months.
In the end, the doctor was right. Everything started to return back to normal however it did take several months. My speech was the last thing to normalize which took almost a year in the end. The steroids had a horrible side effect of making me ravenously hungry so I stacked on weight faster than I ever had. By the end of the year, and with so much uncertainty regarding my health, I moved back to the USA and decided to put Europe on hold once again until everything was more stable. Until then, I proceeded to do another Master’s Degree while my health was monitored.
