Hi, I’m Alexa!
You might have seen me in the BBC, MD Anderson’s Cancerwise blog, Elephants and Tea magazine, or around the Twitterverse.
I would say welcome, but you deserve better. Céad míle fáilte to you. Or in Irish “a hundred thousand welcomes”. I am so glad you are here! As you could probably tell, this is a blog about thyroid cancer. I was diagnosed with Papillary thyroid cancer in early 2017. I had a total thyroidectomy and central neck dissection on May 10th, 2017. My cancer did not stay confined within my 2 nodules, one on each lobe. I lost 19 lymph nodes and my thyroid itself had malignant areas. I went through the LID (low iodine diet) and Thyrogen injections in that October. I had an additional surgery on August 9th, 2017 to remove a port in my chest that I had for 6 years at that point. Read further on if you would like to know why I had a port.
Why “My Broken Butterfly”?
First, let’s start with the name. Butterfly is a term doctor’s use to describe the thyroid gland. It is a butterfly shaped organ. A very important butterfly at that. Obviously, my butterfly was broken due to thyroid cancer. But it was already broken for some time because I was previously diagnosed with Hashimoto’s thyroiditis and had a goiter.
Okay, why the blog?
I find it so comforting to read about people’s experiences online. It makes me feel better to know exactly what could happen. The unknown can be scarier than the actual test/surgery/procedure. I plan on explaining everything I went through in detail. It is my goal to hopefully provide some comfort to you if you are a patient or some knowledge if you are curious. I will be talking about my hospital, MD Anderson Cancer Center in Houston, Texas as well. I also plan to use this as a platform to advocate for thyroid cancer and AYA (Adolescent and Young Adult) patients. We are considered “orphans” in the oncology community and while some strides have been made, we have a loooooooong way to go. My oncologist said she hopes that we are the generation that changes this, and I said we ARE the generation that will change this! My brother loves to say “History belongs to those who show up” a variant of the quote “Decisions are made by those who show up”. So, count me in.
Which did you lose first: Mind or thyroid?
My family confidently assures me that I lost my mind long before my thyroid. I plead the fifth.
Besides blogging, what are your other interests?
Wow, I’m flattered that you would ask. I have too many and I don’t want to bore you, so here are a few. I consider tea time to be one of the best parts of a day. A few of my favorites are homemade London fog lattes, a good pot of Irish breakfast, or the delicious Paris tea by Harney & Sons. A creator would definitely describe me. I design and sew most of my clothes. I love crafts and working with my hands, especially making cards for children’s hospitals. I enjoy baking and cooking, particularly learning new cuisines. My proudest cooking accomplishment by far is learning how to make Persian rice with Tahdig on the stovetop. Learning is a life long adventure for me and I aspire to gain as many languages and skills as I can.
My Port Story
I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) in 2011. It is a condition similar to MS but on a different part of the nervous system. I had the port to receive IVIG (a type of plasma product) infusion treatments. I had no feeling in my legs and could barely walk or use my hands. My immune system also attacked my heart. CIDP is a very serious illness with devastating side effects. The treatments were very hard on me and I would feel very sick. It was suggested that I file for disability since CIDP is a chronic illness that usually doesn’t go away. I was staying stable at best. Thankfully, I about 98% recovered! Sometimes my nerves are a bit wonky, but that’s okay. My doctor says I am in complete remission and I have hit the year mark where it returning is unlikely. I thank God often for my recovery. I also think about my donors who donated their plasma to help me all the time. I would like to say THANK YOU if you have ever donated blood. You have saved lives, including mine. If you haven’t done so already, I highly encourage you to donate blood or plasma. It really does matter!