Yesterday started early, with an 8 a.m. appointment with the speech and language pathologist. I had to chuckle a little as I typed that because in my old life, 8 a.m. was not considered early at all. But I digress...Without getting into to many details, the appointment that ensued was both interesting and emotional. Basically, what it boils down to is that the next several months are going to be hard work to try to get my voice and speech patterns back to close to pre-cancer levels. If you hear me making strange sounds or chanting nonsense words or see me twisting my mouth into various shapes, please don't be concerned. I haven't lost my mind, I'm just doing my exercises. Well, I might have lost my mind a little bit, but not too much more than usual. This is going to be a lengthy process without a guaranteed outcome, but I just have to work with what I've got. I don't know if it is going to work. I have stopped trying to predict the future because I am apparently not that good at it.
After a feeding and brief rest, it was time to go see my radiation oncologist. Many of you drove me to radiation and know that I had to go about 40 minutes from home for treatment because that was the closest Radiation Center. Fast forward to one week ago and Kaiser opened a new radiation facility just ten minutes from my house. Sigh. Oh well, I'm certainly not volunteering to go through that again. The good news is that I get to do all my follow ups at this closer site, as my doctor has moved down here. The new building is absolutely spectacular, with brand new equipment and beautiful rooms. I didn't see the radiation rooms but I'm sure they are nice.
My RO is lovely and patient and answered all of my questions, even the ones that were seemingly random. (And the answer is, yes, even though my PET scan will be from my head to mid-thigh, I do still need to get a mammogram. But it can wait until I am feeling better.) Then came time for the scope, my favorite part. If you have never been scoped before, well, let me tell you, you are missing a good time. First you get to inhale lidocaine to numb your nose and throat. When you are good and numb, the doc threads a long, thin camera up your nose and down your throat as you breathe in to help it move. It doesn't hurt, but it really isn't comfortable...I swear it felt like she was trying to get that camera down to my stomach. But no, she stopped at my vocal cords, which were now projected on a huge monitor. Even I could see that they were still swollen, with my vast understanding of physiology. (Guess I should have paid more attention in that class in high school!) She concurred with my surgeon that the trach needs to stay in. Fine, whatever.
After removing the scope carefully, she congratulated me on finishing my treatment. She told me something that I had heard before, but needed to hear again. Sometimes I feel like I make a bigger deal about how I am feeling than I probably should or push myself because I should be feeling better because I'm done. She explained that I just went through the hardest cancer treatment there is. The hardest. Some of her patients don't make it through, they give up in the middle and search for other solutions. It was sort of like a pat on the back, an atta girl moment for me. And she reminded me that I am still going through it. While my last radiation treatment is now almost seven weeks behind me, I still have at least five more weeks on this roller coaster ride. It is so hard to feel horrible, then feel better, and better still, and then feel really pretty awful again. I feel like I have had so many ups and downs the last seven weeks, I'm not really sure which way is up. Some of you know that I am currently fighting an infection in my mouth, which is caused directly by the radiation, as it changes the pH in my mouth. I went from being up and around and active, to back in bed and on pain medications, not sleeping because of the pain, feeling a little defeated. No one can tell me how long it will take to beat this infection, I'm hoping not much longer. I very much like being on the top of the hill of this roller coaster, instead of down in the valleys. Waiting for the car to pull into the station, because I am ready to get off this ride.
So, the plan going forward is this...I will have a CT and PET scan in September, see my surgeon in October (and be scoped), see my radiation oncologist in December (and be scoped), and then will continue to see one or the other of them (and be scoped!) every two months. Assuming I have no evidence of disease (NED...apparently cured is not a word we use) after my scans, I will have another scan in a year, to compare to the baseline. At two years NED, I will be considered to have a much lower risk of recurrence.
Well, enough of this for now...it's pain pill time. Sigh. Hoping to be in a better mood the next time I post...thanks for sticking with me on this rollercoaster.
Sparkles and love to you all,