I’m so grateful for my body healing this well! It’s a constant reminder of what I took for granted, a valuable lesson as always. My recovery has honestly been amazing, smoother than I could have hoped for. Of course, the lukewarm liquid diet wasn’t a slight walk in the park, it was a true test of my willpower. My love for food even made me tear up at the smell of it sometimes- pretty pathetic, I know. But the thought of that first juicy Big Mac kept me pushing.
I confess, desperation led me to some questionable choices. I admit to chugging broth and adding obscene amounts of salt for flavor. One low point I had was drinking straight from the broth carton with bouillon for a taste boost. And, microwaving any type of juice. Though, there’s never any shame, fake it till you make it. I have to admit, I felt surprisingly good! My usual gluten-free and lactose-free diet seemed to have the same effect as this accidental broth concoction. Thankfully, our trip back to Rochester for the post-surgery checkup and radiation simulation offered a much-needed light at the end of the tunnel.
Right before we left Mayo Clinic after surgery, I had a swallow test to see how that was going. I know I always hype up Mayo but seriously they deserve it, these appointments are all arranged by them, no phone marathons or referrals… life changing for my family. The test itself was interesting! First, I worked with a speech pathologist on some exercises to loosen up my mouth and tongue muscles. I got a kick out of their fancy waiting room – a whole suite with a TV where I could watch March Madness! I even got to wear a giant baby bib, which felt pretty funny. I find it amazing how Mayo does not leave no stone unturned, from the so called “small parts” of the waiting room. For the test, I stood on a stool and swallowed barium, which lets them see how I swallow. (It doesn’t taste great!) They had X-rays around me, and I also swallowed some applesauce mixed with barium. It was comical – I only had one free hand, so we joked about the technician having to feed me! The doctor took the X-rays quickly, and we got the results in about 10 minutes. Interestingly, I even spit up a little in between (the barium actually helped dislodge some stuff), and then the doctor showed me the X-rays. It was cool to see myself swallowing on screen!
Anywayss, back to the point, I was using a temporary mouth guard to protect my flap before the official one was ready. The official one was expected to be used to protect the flap while eating solid foods, which gave me little hope for what was coming, that maybe my doctor would let me have soup. Expertly made by the amazing doctor after much tedious work, it fit! I have curvy teeth that doesn’t allow the hooks to grab well, and the flap had to be covered all the way down to the start of my throat, which made it challenging. I even told the nurse about my food deal and she was looking up soup places for me during my dentistry appointment, we had a blast. I couldn’t wait to see my doctor after it fit and (realistically) hoped for the okay to eat soup (but was praying for a burger of course). We were already planning a celebratory “soup fest”!
The big doctor’s appointment arrived. Anddd guess what? My doctor gave me the go-ahead for pretty much anything (except chips and other hard foods) – WOOHOO! Plus, the splint came off for more range of motion, just requiring daily re-wrapping with petroleum jelly.
Of course we had to stop for a burger. My first burger back! My mom had to cut it up because a big bite was still out of the question. It was delicious but I almost choked not going to lie. The waiter hyped the girl up. I had to slow down for my own good. Even fries were a challenge. I’ve never eaten so little. Maybe not eating made my stomach smaller?
Whew, this was another marathon! 7 am to 5 pm – gotta hand it to Mayo for getting all of these appointments ready for us. This was all in one day, truly amazing. The simulation itself was really fascinating. For me, my treatment required a facemask to keep my face in the same position everyday and a mouth guard to keep my mouth and tongue in place. I got this funny gown, at least it was funny to me. They took me back and layed on a table. They fit a custom face mask for me (the 3D-printed mouthguard they made earlier is awesome). Then, they lined me up with a laser and made sure my whole body was perfectly positioned. They even have a physicist there to get everything exactly right. My doctor even stopped by to check in. The mask they put on felt like a warm facial! It’s made of wet silicone and comes out of an oven, so it’s a bit warm at first. Definitely not for you if you’re claustrophobic. They mold it to your face, and after a couple of minutes, they take it off to dry. For me, they repeated the process a few times to get a perfect fit, we laughed with them. “I don’t like that, her shoulders need to be more down”, “Not covering her chin enough”, “I like 3 point better” (whatever that means). I appreciate my doctor for his detailed work, he worked till he had it perfect! Then, you’ll have handles to hold. I’m holding a blue ring since my left arm can’t extend all the way due to the free flap incision. They give you some options to make sure you’re comfy. They will do anything to try to make it enjoyable, they actually tell you at first that this is your time to say something.
In this video, Dr. Everett explains what will happen during the appointment. A really helpful video for me.
We had a break during this, and one of the amazing nurses asked us to join a research study. It’s to see if daily vitals checks can help people avoid hospital stays during radiation. They got me all of the equipment- blood pressure monitor, pulse oximeter, armband, and even a new phone! Two phoneszzzzz babyyy. My job is to record my blood pressure and oxygen twice a day, answer some questions and keep the armband on daily.
After the break, I then went back for a CT scan and then an MRI. They did do contrast for the CT scan but this one only took a couple minutes extra. They kept all the equipment on me for the doctors and to make sure everything stays aligned during radiation treatment. It all went smoothly – no shenanigans surprisingly!
My last day in beautiful Rochester was filled with more examples of the amazing care I receive at Mayo Clinic. My radiation oncologist doctor, truly incredible, ordered a psychiatry appointment to ensure my mental well-being alongside my physical health. They truly aren’t just there to have the title of a doctor. This really shows how much they care about their patients as a whole person. The appointment itself was great; the psychiatrist is helping me with things I didn’t even realize I needed, using helpful coping strategies. I love how they prioritize these strategies over medication whenever possible.
On a different note, during my appointment, my mouthguard started bothering me. My mom had messaged about it, and within 30 minutes, they had me back in and fixed it! The original nurse was fantastic – she saw I was in and checked in to see if I could finally eat food! It’s truly a special place here. They genuinely want the best for you and go above and beyond to make sure you get that. Of course, I was asking questions about the hiring process. The nurse also shared some fascinating details… apparently, the first interview involves a panel of like 10 experts! They ask in-depth patient care questions, including ethical scenarios- how you would handle a certain situation. It makes perfect sense to me. They clearly prioritize patient care and want people who are naturally empathetic from the start. No wonder every employee from doctor to the call center is incredible! I forgot to mention, every time they organize your schedule (they handle it all which is so amazing) they will call you to let you know and even work around for what you’d like.
Besides, with all the info gathered, the doctors will now plan my radiation treatment. Then, I get a two-week break before it starts! Here’s to some relaxation and kicking cancer’s butt.
Let’s do the darn thing
Kam
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