Advocate for yourself

I finally did some research in regards to radiation, Dr P advised me not to do research awhile back as he knew it would drive me nuts to read about all the negatives out there. Something just didn't sit right with what my team was telling me about my radiation experience so far, and I am so glad I did my own research! From the American Cancer Society, I found that not only is nausea very common in regards to the region of radiation I am getting but they gave tips on how to reduce the nausea. They suggest you eat a good sized meal and hour before treatment so that your stomach isn't completely empty, I had not been doing this! I was trying to eat after each treatment which wasn't working as the nausea cycle had already been started. Yesterday I gave this a shot and figured if it didn't work, I would start taking zofran and it worked big time! I had no nausea and actually felt quite good after treatment, I have a little bit of heartburn but I can live with that. It seems that I'm starting to get control of the IBS as well, so life is much more comfortable. For now, I will continue with the treatment plan as is and pray that there won't be a need to stop. I talked with Dr Monroe hoping to establish a plan B should I need it and there doesn't seem to be a good alternative. While I could take a break from radiation and do chemo and then go back to radiation, I will lose the beneficial component to radiation once I return. He also believes the break wouldn't really help my bowels because once we started again, all the problems would return just as fast, if not faster. I was glad to hear him say that sometimes we simply have to listen to the patients body, and if that means stopping prematurely that's what you do. He was very relieved to hear I was doing better and so could continue treatment, and honestly that scared me a bit. I know my prognosis is not nearly as good without radiation, I'm going to do what I can to continue for as long as I can. The rest is up to God I suppose.

I am angry that my radiation team did not know that nausea was a normal response and therefore have tips on how to prevent it in the first place. They are supposed to be the experts in this field and we as patients should be able to trust what they are saying. I'm upset that I can't simply be a patient, I have to be my own nurse too! Just because I'm in the medical field does not mean I want to be my own physician and try to solve every problem I encounter. I have enough stress with the day-to-day stuff! Having them tell me my response was "atypical" or "impossible" created a lot of unnecessary fear for both Mark and I. Not to mention I was pretty close to quitting based on wrong or lack of information. I no longer trust my radiation team, I trust the physician but only he can be as good as his team. That's why it has always been so important to me to tell my patients honestly what to expect, and if I don't know the answer to something I admit that I don't know and then try to get the answer. I know I have one shot at gaining their trust and when it's gone, it's gone. It's unfortunate that I have the added stress with each radiation treatment of watching them like a hawk because I don't trust them. I hate to say it but honestly, each patient MUST be their own advocate. If something doesn't sit right with you, ask questions, search for answers, and continue until you are satisfied. Because the medical field is filled with fallible humans mistakes will be made, and I've made mistakes in my career too. Don't get me wrong, I still believe there are excellent physicians and nurses out there, and I appreciate them all the more now! Anyway, enough of my ranting on the recent disappointments. Deep breath, move forward!

I saw this cute hat--on the front it says, "I love the smell of chemo in the morning." On the back, "smells like remission."