This post starts a series of blog posts and YouTube videos I will be doing to help me cope with the newest health issue I am having and the first time Joe and I are dealing with it while living the #vanlife. My hope is this series will not only document and help me deal with the emotional and physical ups and downs of the pain and challenges of another surgery, but that I may use this experience to help others that may be concerned with "what if this happens while I'm on the road" or to create a community to support those that are quietly going through it themselves. I have found comfort in helping others, mustering up the courage to share so that others may find comfort, this gives me a reason to stay strong and soldier through the tough times. It gives me a reason to stay positive so that maybe others won't hurt so much and be inspired to power through for themselves. This is my coping mechanism, thank you for joining me on this new adventure.
First, why am I going to be having surgery?
The last week of December 2020, which was already a banner year for all of us, I suddenly had severe pain in my lower left abdomen. After living with pain for over 25 years (more on that later) I have become very in tune with my body and the quirkiness of my pains. This one was very different. I gave it about 24 hours to resolve on its own but it didn't, I got much worse. I felt bloated, nauseated, and stabbing pain on the lower left side. It sort of felt like I was having an appendicitis attack, but I’ve already had that taken out and that’s on the right side. The pain was similar though. Luckily, at this time we were spending the holidays with our friends in Austin, Texas. Our van was parked in their driveway and we were staying in their beautiful home. Once I realized something was definitely different than my normal pain, I called my Teledoc. He said he was 90% sure I had an ovarian cyst that was rupturing. If I had the more severe symptoms that I should go to the hospital. Well, I’m stubborn and have been to the hospital more times than I can count so I just curled up for a week and managed through the pain until it seemed to disappear.
Life doesn’t stop when pain hits. At the same time, we were figuring out if we were going to be traveling west to explore or head back to Florida for warmer weather. We know we do not handle the cold well and we hadn’t quite perfected the heat in our van setup. Two days before the first snowfall in Texas, we left and tried to outrun the cold to Florida. We almost made it! It was better than being in Texas though. Looking back, I am so grateful for these little universe nudges we get. We think we’re going one way but a higher power suggests better sometimes. We have learned to listen to that gut instinct and go when and where we are detoured to.
Over the last few months, the pain managed to creep in again and again. First, four weeks after the first event. Then again two weeks later. Those were not quite as intense but certainly nothing to ignore. I had made an appointment with a gynecologist in Orlando, FL. This is kind of our home base for health care. We had lived there for about eight years before heading full-time into van life. Our health insurance is based out of Florida so I’m very happy we decided to come back for the winter months. About mid-February, I decided to go to the ER to get the scans I needed. I knew the doctor’s office was going to send me anyway but the pain was so intense I wanted to make sure nothing more serious was happening. The doctor there did a CT scan and showed a 4cm cyst on my left ovary. She didn’t seem too concerned as they can be common for many women. Since I had an appointment scheduled with my GYN, she sent me home with pain meds. The day of my gynecology appointment and annual exam. The doctor was great and said everything looked clear. I told her my concern about the pain. She didn't seem to concerned and said we could wait about six weeks to do an ultrasound which shows more detail than the CT scan. I didn’t feel comfortable with waiting that long. I knew this pain was different. I pushed to get in as soon as possible. I got the next available appointment two weeks later.
Thanks to Covid protocols, it looked like Joe couldn’t come with me to the appointment. I later found out, he just had to wait in the hall and could come into the exam rooms. But at that time, he didn’t come with me. This was difficult for us because the last time I had something like this was getting the results from my thyroid ultrasound. I didn’t have Joe come with me for the results because I thought it was going to be ok. That doctor was cold and callused, blatantly saying I had a cancerous tumor in my thyroid. I don’t wish that on anyone to go through that alone. (All turned out ok in the end. After having surgery to remove that, they said Oh, btw, “it’s not cancer!”) Anyway, this time, I was alone again. Trying to stay positive. But a different doctor came in. He was stern but caring. “We have to pay attention to this.” A complex vascular cyst is quite different than a common simple cyst that comes and goes with a woman’s cycle. Because of my age, medical history, and the type of cyst it was he was concerned about the potential of cancer but was much gentler with his approach. He sent me for the blood test for the cancer markers. Somehow, I made it, driving the van to the blood test location. I had Joe meet me there in our other car. We pulled in at the same time. I was shaking as I put the van in park. Joe saw me and jumped in the front seat to hug me as I broke down crying. “Not again” was all I could think. Not another surgery, not another roller coaster. How were we going to handle the challenges of surgery and recovery being in the van? My mind was racing and numb all at the same time. Joe just held me. He did exactly what I needed him to do. I’m so glad we have our home everywhere we are because we crawled up onto the bed and just cuddled, right there in the parking lot. Even though we were in a parking lot the rest of the world disappeared. I was in my safe place, my comfort zone. #homeiswhereyouparkit
I eventually got the results of the blood test (which can be inconclusive and give false readings, yay!) Even though my count was slightly elevated, it was not to the level they think it would be cancer. That took a huge weight off. The chance is still there but not nearly as much as we worry about in our heads. The waiting for the results is the worst part. I do feel like a ticking time bomb too. At any moment this thing could rupture or twist my fallopian tube which would result in emergency surgery where ever I am. Not something fun to think about as we travel.
More tests and more talks of surgery are my current reality. The six-week follow-up ultrasound showed no positive changes. The most likely option to resolve this seems to be to have the left ovary removed with the cyst as well as a hysterectomy. They are thinking I also have endometriosis as well because the pain has intensified so quickly and more frequently as well as the irregularities of my cycle. They can’t confirm the endometriosis without having surgery, so either way, I’m going under the knife again. I feel comfortable with the research I’ve done and the seven valid medical opinions I’ve gotten. So now I wait another two weeks for the next appointment, the pre-surgical consultation. Looks like we won’t be leaving Florida for at least two months. VanLife travel plans have changed again.