I was having a lovely time floating in a river called DeNial and I wasn't entirely sure I wanted to stop my float, but alas, it was necessary and the outcome of bailing out was ultimately positive.
We've been on a search for local docs. Call me crazy, but I thought it would be kind of convenient to have docs on this side of the country to visit with when needed for follow up or emergent situations that don't need the complication of last minute airline tickets. So we slogged through that ridiculous referral process and twiddled our thumbs waiting for the appointment.
Monday was the day of the appointment, and I was feeling quite grumbly about it. Andrew thought my grumbliness was a little over the top until I told him that the reality of the situation was, I didn't want to go to the doctor at all because I didn't want to have tumors at all, and I really didn't think it was so unreasonable to not want those. He left me alone after that. (Smart man!)
But alas, I'm on the Paraganglioma-train and I may as well get used to it.
So away we went. Good things came of it despite my grumblings. The first doctor who came in was a "Fellow." It was abundantly obvious immediately that Fellows at UW are vastly different than Fellows at the NIH. The Fellows at NIH are amazingly smart people, but because of the whole structure there, they come off to me as something like a 'minion' to their Attending Docs. This Fellow though, Dr. R, set me at ease right away, earned my respect right away, and showed me immediately that she knew her stuff. Plus, she reminded me of my dear friend, Barbara Harroun, which really cinched the deal that I was going to love her.
The most exciting thing to me about the appointment was that they asked me questions and talked about things that I hadn't even thought about. I mean... I hadn't even considered them. It felt lovely!!! You gotta understand, it's not that I think that I'm such a know-it-all... It's just that hasn't happened much along this journey outside of the NIH. Dr. R, knew the symptoms of all the different genetic mutations and probed for hints about whether or not I might have one. She listened to and answered my myriad question (Well... there might have only been 12 or so). After getting my story, and checking me out thoroughly she went to chat with her Attending. She came back in with him (Dr. D), a few minutes later and they BOTH took on my questions and bulldogging for information.
The direction we're headed on as agreed upon that day (and may I just say that another thing that I loved about Dr. D. and Dr. R. was that I very much felt like part of my own treatment team) looked something like this:
1) I went immediately downstairs for some more genetic tests. We haven't ruled out all the possibilities for a genetic tie predisposition. I could still be a mutant. In fact, the docs at UW kind of hinted they would maybe be surprised if I wasn't. It was really strange to just be told to go downstairs and get tested as in the beginning of this journey I was told over and over again how 'unnecessary' said testing most likely was.
2) I have scans next week to see what is going on with Tomasito (Remember--he's the little guy who may or may not be hanging out on my other Carotid artery).
3) They're not super concerned with my Thyroid as the biopsy I had at the NIH indicated it's probably not related to the Tomas and his kinfolk, but we're keeping an eye on it with ultra-sounds, and I'll have one of those next week as well.
4) I'm going to meet with an ENT surgeon, not because another surgery is on the horizon, but just so I have some 'face time' with whoever may be performing a procedure to deal with Tomasito or any other Tomas kinfolk in the future. That appointment will happen in early November.
It was such an encouragement to find folks on this side of the country who are willing to have my back. It was reassuring to hear a plan, for scanning and surveillance. It's also just such a comfort that they're extremely knowledgeable, competent, and compassionate. I wish I hadn't been so ignorant as I was searching for doctors and referrals from the get go as I'm sure I'd have found the Endocrinologists at UW to be fabulous even at that point. I'm still grateful for my experience at the NIH and for the doors that has opened and continues to open for me. And I'm thankful that I have those incredible doctors and medical professionals on my team as well.
The phlebotomist taking my blood was kind of fun. He wore really colorful Converse Sneakers and when I asked him if he spent the whole day with folks who didn't look at him (because they didn't want to watch themselves get stuck with a needle), he confessed that he didn't like looking at the needle stick either. I raised my eyebrows and said that I certainly hoped that he'd kept his eyes open when he'd stuck me! He then offered to try again, blindfolded just to see if he could do it. I politely declined. :)
Let me just say though... I <3 UW. My experiences over the last year have all been so positive there and this experience only strengthened that feeling. It is an incredible institution.
We'll be anxiously awaiting the results of these scans and tests and then we'll know more of where we're headed. In the end, I guess if I had to bail out of DeNial, I'm glad we found some great doctors to make the trip worthwhile.
