Remember the last time I posted (in October), and I said, “I’m going to try and update you more often?” Apparently, I lied. Here we are in early 2018, and I am just now sitting down to type an update. I have not felt like writing because I still don’t feel well. I conquered 3 weeks of radiation and was set to return to Tampa in mid-December to discuss the results of radiation, and that is when we discovered that the tumors did not shrink. They didn’t grow or spread, so that was good; they just didn’t shrink, which is what we had hoped would occur.
So, what does this mean? This means that I’m still in pain. This means that when someone asks, “How are you doing?” I reply with, “I’m okay,” which I’ve noticed my friends are onto me and realize that when I say, “I’m okay,” that’s code for I don’t feel great, but I don’t really want to get into it. The tumor is still attached to my blood vessel which causes me a significant amount of pain. My weight is down and so is my energy, so my doctors decided to give me 2 more months off of treatment before they reevaluate and decide what treatment needs to happen next. Since chemo stopped working and radiation wasn’t as successful as we had hoped, this means that I will have to try another form of treatment (injections, other chemo concoctions, a new trial, etc) which means another slew of side effects. In order for me to handle new side effects we need my energy to come up, my weight to come up and my pain to go down. Well, so far, I haven’t been too successful at fixing any of these issues. Ugh. It’s not for a lack of trying, I can promise you that! I just don’t feel like eating a whole lot, and if I eat too much I feel sick. I try to eat once every few hours, but I just don’t feel like eating a lot. Sure- it’s nice being skinny, but it’s not nice that you’ve lost so much your clothes don’t fit you anymore and your ICD pokes out of your chest and you look like Skeletor. It’s not very cool to have an ICD in the first place, but you know- I have the body of an 80-year old, so try not to be jealous.
I’ve become addicted to yoga because it is pretty much one of the only things that gives me pain relief. I’m at BodyPlex multiple days a week in their BodyFlow class and then I’m busy at home watching yoga videos on YouTube. Exercising is supposed to help my energy, but I’m not convinced it’s working. I can’t say it never works because my therapist (yes, I see a therapist now because it was either that or go on Zoloft and since I’m tired of being on meds trying counseling seemed better than trying more drugs) is encouraging me to not use words like “never, always, forever, etc” because they put you in a negative mindset. SEE- I told you! I’m trying! Like, hard! I’m exercising, trying to eat, AND seeing a therapist! I’m making an effort, folks! My next goal is to try massage therapy in hopes it will help my back pain. This certainly seems like a pleasant way to get some relief. Just to keep you afloat, the reason I have back pain is because 1 of my 3 tumors is attached to a blood vessel which is causing me to have nerve pain in my back. It’s pretty rotten. Standing is the worst, and typically if I have to stand more than 30 seconds you’ll see me start moving around and leaning over and stretching. It’s how I get a second of relief. There is a very real possibility you saw me last month standing in line Christmas shopping and I started leaning over and touching my toes or doing some weird lean and twist move…anything to try and get some relief. When you’re in pain, you resort to bizarre things to help you feel better.
So, what is next? Next, is a trip back to Tampa in February where they will do another CT scan and figure out what my next plan of action will be. I am thankful I took this year off from school because I don’t think I would have been able to work this year anyways. Everything has a way of working out for the best, I suppose. I am looking forward to the day that I have less pain, and I am hopeful that the day will come sooner rather than later. That is my current fear…what if this is the best I’m going to feel? No, no, no…that can’t be the case. PLEASE don’t let that be the case! If my pain will go down I’m convinced my energy will go up. In the meantime, you can find me at BodyPlex in the BodyFlow class trying to be in the front and center and master every yogo (that’s what Baker calls yoga…yogo) move possible because it gives me sweet relief! Stay tuned…