Today I’m feeling surprisingly optimistic. If you read my post yesterday, then you know how frustrated I’ve been feeling about getting the specialized care I need at a price I can afford (stupid medicare commercials have infiltrated my brain).
I’m happy to say that through a miracle of opportunities, and the relentless digging by some very dear loved ones, I may have found my doctor. I’m almost afraid to be excited because it seems too good to be true.
I was able to get an appointment with a team of incredible doctors, oncologists, and specialists located at a university right here in Austin. And it looks like my insurance will cover a good part of it. Why was it so hard to find a place that seems so perfect, in my own backyard?! Cuz that’s how messed up this whole system is.
I was blown away at how thorough, kind and knowledgeable the staff was. I finally felt like I was being cared for. My initial appointment was almost 3 hours and they listened to me – like I was a human who was suffering and in need of help. And they didn’t just look at my labs, they asked me to explain every symptom I’ve been experiencing leading up to and after the diagnosis. Including my years of chronic pain all the way up to my more recent lightheadedness. They took all of these things into account before ever suggesting one step moving forward. And they almost immediately theorized my light-headed feeling to constriction of blood flow to my brain from the swollen Lymph nodes putting pressure on my neck-blood-highways (my term, not theirs). It’s all connected folks.
Surgery?
Since the day of diagnosis, the only thing we thought we knew for sure is that I need surgery. I need my thyroid removed, and I need it now! It was interesting to hear from these new doctors that surgery is an option, but may not be the first option. Partly, because they have access to drugs, medications and clinical trials that are not available to you normal humans (just us fancy-cancer test monkeys). There could be meds that literally shrink the cancer down so it’s more manageable and follow that up with radiation or surgery or kale chips or a combination of all three. More importantly, they want to do a LOT more tests before we decide anything. They don’t want to start cutting me up and then figure out the rest later. They are determined to figure out EXACTLY where the cancer is, what it’s doing, and THEN decide the best way to treat it. That’s just crazy talk!
Not all roses
The second reason that surgery may not be the best option is a little less exciting. In fact, a little unsettling. They are quite concerned about the acceleration of my symptoms. The metastasis that is already apparent is extensive and would take a butt-ton of surgery around my neck, chest, shoulders. More than that though, it’s possible (we don’t know yet I need further tests!) that this rare awesome cancer might actually create genetic alterations to form new cancer in other parts of my body (ahem, pancreas). Thyroid surgery may catch one cancer, but there may be more waiting. The cancer switch may have been flipped, and all the ghosts are coming out.
Despite this little mind-bender of news, I still feel a sense of relief that I am in good hands. I truly believe that these doctors are going to do everything they can to help me. They are not interested in doing things for the sake of looking busy. I also hope that by closely studying my experience, they will learn new things about how to treat other people in the future.
Next steps:
Got more blood tests today. Going to get a urine sample by peeing in a bucket for 24 hours straight (this is a new one for me!). Still scheduled to get bone scans and more CT scans next week. They will be presenting my case to a panel of smart people at the university on December 2nd. More waiting, but I’m used to that now.
