Luke turned 18 last week. A milestone that I appreciate being able to see. 8 months of slow recovery and lingering effects have definitely slowed me down, but I'm happy to be able to spend time with Luke as he looks for colleges. This photo is us touring select California campuses. We made it up as far as San Luis Obispo, and need to make another tour soon for UC Santa Cruz, Stanford, and Berkeley.
As for the lasting side effects of the radiation, I'm challenged with chronic swelling of my neck, called lymphedema, which puts pressure against my vocal cords. The lymph nodes in my neck are not functional, so fluid which typically is constantly flowing through the lymphatic system just builds up. I've been battling with my insurance company to get a in-home system that massages the lymphatic system, helping to reduce the swelling, but as of yet, they have denied me. Actually, they approved a pump from one of their contract supply companies, but this company doesn't carry the one specific for head and neck lymphedema. The folks that make the decisions cannot differentiate between a pump for your neck and a pump for a leg or arm. To them, the billing code is the same regardless of what part of the body it is designed for, therefore, I should be happy with the wrong pump.
I also have to eat and drink very carefully, due to an oddity with my epiglottis. This is the part in your esophagus that sends food one way, and air the other. Mine is whacked now, and all the little intricate muscles in that area do not function effortlessly like before. So that means I am susceptible to choking if I'm not very deliberate with each bite of food or drink of water. Surgery may be an option if and when the lymphedema swelling heals.
It turns out saliva is really important to constantly keep your mouth, tongue and teeth happy. Not being able to produce much saliva has a snowball effect on your teeth, so flossing and brushing multiple times a day (like 5 times) slows the loss of enamel. It is also difficult to exercise when your mouth dries out in minutes. I have a water bottle at all times now.
The brain fog is something I really hope to recover from. Lots of short term memory blanks, times when I can't recall names, or even words. I know it sounds like that's just from being in my 50's, but this is different, and a common side effect.
I was having weekly speech therapy to help with my vocal chords, and also learning how to strengthen my swallowing to safely get food down. My therapist recommended I get a "modified barium swallow test" performed, which requires a MRI while I swallow a barium concoction. It's the best way to find out what exactly is the issue with my swallowing muscles. My insurance said "ok, but you are only approved to have this done at our contract facility." Only problem is that facility does not offer the modified barium swallow test. And you wonder why our health system is inefficient.
I am not complaining. So many friends and acquaintances ask how I'm doing, and I typically say "great, I'm cancer-free", but there's several layers of recovery to deal with, which honestly has an impact on my general happiness at times. Our landscape designer was at our house yesterday, asked me about how I'm doing, and I gave him my standard "good" answer. He said, "well, at least you still got your hair!"
