Incidental Findings and Silver Linings
I got sick in July of 2020. It’s suspected to have been COVID, but 2 negative tests and a negative antibody test tend to cause some uncertainty. It started with a rash all over, low grade fever and feeling crummy but still able to carry out daily activities for the first week. After the first week I was hit by the proverbial truck and would spend weeks and weeks wondering if I was going to come out of this alive. I didn’t have the respiratory symptoms other than maybe a week of minor cold symptoms. I could barely walk to the kitchen or bathroom. My headaches were the worst I’d experienced. I would stand and sit/fall right back down from dizziness and there were weeks straight of room spinning vertigo. I had shortness of breath in the form of air hunger- I couldn’t get a full breath of air and I felt panicked- but at no time was I ever in respiratory distress according to my lung sounds or oxygen saturation. I couldn’t stand for more than a few minutes without burning pain in my muscles and joints and any sort of exercise or chores were out of the question. I kept hearing 2 weeks and you should be fine. Two weeks passed and I was not fine. I just kept getting worse. I couldn’t go in to see the doctor because I had COVID like symptoms but I didn’t have a positive test and none of my vitals were an emergency so I just stayed at home feeling like I might be dying. I couldn’t drive because I felt drugged but walking to the car was almost out of the question and showering alone took my entire day’s energy. Weeks dragged on. I would say goodnight to my kids and then sob in my bed afraid I wouldn’t wake up for them the next day. I had been hearing about long haulers and found the Facebook group. I was seeing my story over and over in posts on my feed. Same symptoms, many of whom also had negative tests. I initially found comfort in seeing the posts because I wasn’t alone, but then it became overwhelming to see so many people suffering with no answers. I eventually had to delete Facebook from my phone to take a break from political meanness and the bleak monotony of the long-hauler reality.
This is the part where I should give my doctor a shout out. I am lucky to have an empathetic caring and energetic doctor who listens and is eager to get down to the root of my issues with me. He’s done countless blood panels and entertained all of my ideas on next avenues and referrals to specialists in this completely uncharted territory of COVID. With all of my continued symptoms I got a recommendation from a family member in the medical field to request an MRI to rule out MS or any other brain damage that might have occurred with COVID or whatever is going on. My doctor got the MRI ordered in December 2020 and a couple of days later I got the call.
“There is no sign of MS on your brain imaging. However…”
On their website, the American College of Radiology American College of Radiology website defines incidental findings as “an incidentally discovered mass or lesion, detected by CT, MRI, or other imaging modality performed for an unrelated reason.” In my case we were looking for signs of Multiple sclerosis or any damage left over from COVID and instead found a large frontal lobe Meningioma sitting in my olfactory groove (There’s a 4+cm mass behind my eyes and nose, cuddling up with my smell nerves).
I have to be honest- I prayed that something would show up on the MRI. I prayed that there would be answers. If something showed up on my MRI then that would mean that there was a reason I was feeling so horrible and then we could fix whatever it was and I would go back to my healthy pre-COVID- weight lifting- marathon running- self. So oddly when I heard that I had a tumor on my brain I was almost excited- something to fix! An answered prayer!
It turns out that this part of the brain where my tumor is the silent part of the brain and this tumor very well may be a true incidental finding in that it is unrelated to why I’m feeling so cruddy. Whomp whomp whomp.
The 6 month mark seemed to be a turning point in my fatigue. I’ve been able to start adding daily walks. I’m cooking again. I’m writing. As time passes and my headache remains and the fatigue starts to lift, I’m starting to notice what may be tumor related and what may not be. I’ve gotten some very good care from some very good surgeons and will move on with removal barring any changes to my health in May. This isn’t an emergency but there is an urgency in that the tumor isn’t getting any smaller and I’m not getting any younger. I would like to save my sense of smell if at all possible- and the idea of seizure risk from wait and see isn’t warm and fuzzy for me.
There are so many silver linings to my whole COVID tumor experience.
This process has been humbling and the outpouring of love during my illness and since the tumor diagnosis has been a gift. I didn’t realize how disconnected I was from my family and my recovery network before the pandemic- but the regular texts, facetime, zooms, and emails have been priceless. I don’t want to go back to how it was before. (Other than actually being able to see them in person.) When I first got sick I asked friends on Facebook if they would send the boys (5 year old twins and 9 year old) letters with jokes to cheer them up while I was down and out- and they DELIVERED! Hilarious jokes and stickers and gifts of all sizes from family and friends came from all over the WORLD. (I tried to send thank you notes to everyone- but if I missed someone- THANK YOU!) Neighbors brought by flowers and my mother in law’s church sent a prayer quilt and my amaryllis bulb sent from my recovery friends just bloomed. A new wreath and coloring books and origami paper and other gifts of love would appear on my porch at just the right time. I am part of a family and a community- before being forced to slow down due to the shut down and then getting sick and now this tumor diagnosis- I took it for granted. I pledge to no longer do that and to pay it forward in my own family and in my community.
Another silver lining is of this all is taking some action on some dreams of mine. With my surgery date came a strong need for a bucket list.
My bucket list for before my surgery this May:
Hug a cow
Hug my teenager who lives in another state with his dad (we haven’t seen each other in over a year because of COVID)
Go on a solo trip to the Monteagle Mountain with my husband (all socially distanced and responsibly of course)
Submit my book proposal to an agent/publisher.
There’s nothing like a major potentially life altering surgery to kick life into the gear of living after it’s been stuck in the neutral of 'someday'.
I’m going to keep on holding on to these silver linings as the hard unfolds. There is fear. There is uncertainty. I’m not glossing over those things with fake or toxic positivity. But I am very aware that there is so much good that is coming from the hard stuff. What a wonderful opportunity to practice living life with two hands and curiosity and faith and hope. Thank you for loving me through it all!
“Incidental Findings.” American College of Radiology, www.acr.org/Clinical-Resources/Incidental-Findings.
I need to write this but I didn’t know where to fit it up there in the blog post. I have decent health insurance and health privilege. Despite all that I had a very yucky experience at my first neurosurgeon appointment and with some guidance and persistence I got a second opinion. I live in a rural area and many don’t have that option or privilege and I can’t shake the question- how can I use my power and privilege to help those that don't have it? After this experience with my tumor and with healthcare in Southwest GA I will be expanding my activism to cover healthcare. Families shouldn’t have to travel 3 hours to get treatment. Patients should be treated with dignity in every healthcare setting no matter how busy the healthcare providers are or how backed up the schedules are or even if they are the only provider for that specialty in the area. All people are entitled to quality healthcare.