My apologies for not writing in a long while. My family and I have been making the most out of this holiday season and spending a lot of time together. My best friend/sister, B got engaged while in Portugal and am so excited for her beautiful wedding! My wonderful mother and I went on a five day road trip to Utah/Arizona to witness this beautiful country we live in. We ate at Cracker Barrel a couple of time (umm, it’s to die for), spent Thanksgiving on a reservation, and watched the sunset on the side of the road. It was absolutely breathtaking and just what was needed to soup up for a month of doctors appointments and procedures.
Now on to my medical updates… I wish I had answers to a lot of tests, but I’m currently in limbo for practically every appointment I’ve had this month. On the 1st I had an appointment with headache specialist who was thorough, but I didn’t feel like I made great connection with her, as I had with all of my other providers. I left the visit feeling a tad defeated since I waited four months for this appointment, but will follow up with my neurologist at the end of the month. On the 8th, I saw a wonderful Gastroenterologist here in the valley and will have an endoscopy/colonoscopy during the beginning of January. Due to my NK cell deficiency, I am constantly prone to cancers that my body would otherwise be able to fight, so Dr. D wants to insure I’m clear of any type of intestinal cancer. Dr. D also ordered a thyroid ultrasound for a nodule that was felt during my exam.
This last Thursday I made the trek to UCSF for two appointments; one being a follow up with my Immunologist and second for a Cardio-Pulmonary Stress Evaluation. LET ME TELL YOU… I ALMOST DIED. I was strapped to monitors, had a funny breathing apparatus on and had to stay perched atop a bike for a long time. Well, it felt like a long time but turned out to only be nine minutes. I began to pass out, so the physiologist and doctor cancelled the test. According to the physiologist who was in charge of the monitors, I failed because my V02 number was extremely low. I have no idea what my next step is, as I have to wait for the ordering physician to make the next move.
My follow up with Dr. A was great. I thoroughly enjoy seeing her and she’s an awesome doctor to converse with and has excellent bedside manner. I explained that I’ve had a number of viral infections and have had to take antibiotics (which I don’t like, but they’re better than prednisone) and that this disgusting sounding cough is still here. It’s a permanent fixture in my little circle, as no one even bats an eye anymore. Dr. A will likely admit me as inpatient for two weeks if my chronic fevers don’t cool their jets. I’ve had a 102+ fever for 24/30 days this last month, it’s a real treat.
Just yesterday I had my thyroid ultrasound done which showed multiple bilateral thyroid nodules. Once again, I’m in la la land and don’t know my next step. Im most likely looking at a biopsy since I’m so prone to cancers. We shall see what other appointments/procedures I’m up for in the coming weeks.
I want to take some time to acknowledge a special person in my life who experiences a pain that I couldn’t even fathom on my worst day. Besides my mother, she is the strongest person I know who battles with feelings of grief, anger, hurt, and emptiness, all while keeping a beautiful smile on her face. Her life was was thrown a massive hurdle and she has gracefully handled her situation and continues to jump the hurdles thrown her direction. To my magnificent friend E, I know that this emptiness won’t ever go away, but as the days go on and you will find it in your heart to let go and forgive. I know it will take a lot of time, but that little boy is by your side every single day. You have impacted my life so much in the last eight or so months and your strength is inspiring to all that know you. I love you friend.
“Angels come down from the heavens//Just to help us on our way//Come to teach us, then they leave us//And then they find some other soul to save. “- Chris Stapleton.