Recovery and Rest

Not much going on but recovery and rest for me. Last week was one of the hardest weeks yet. Brain radiation on Monday and then chemo on Wednesday. Both pack quite a punch with fatigue and it has been an uphill battle to get back to "normal."

I did have chemo today but I am feeling much better and more like myself. Sometimes when I have to sleep all the time I just can't seem to find my sense of humor or sense of who I am. I hate that.

Met with Dr. Shah today and touched base on some things. There has been some conflict over my new specialist, Dr. Ramakrishna (treats with radiation) and my other brain specialist, Dr. Bobustic (treats with medicine). As great as Dr. Ramakrishna is, it has felt as if he and his nurse feel superior to Dr. Bobustic and have made some comments in front of us. As a patient, this puts me in a bit of a tailspin because you want to know that every doctor on your team is on the same page.

Also, Heidi, Dr. Ramakrishna's nurse very non-chalantly told me that the numbness in my head may never wear off. ARE YOU KIDDING ME? Here's what happened-Monday was the procedure. I had this amazing nurse taking care of me throughout the day named Tammy. Tammy told me at the end of the day that the numbness would wear off in 10-12 hours. Also, when the neurosurgeon, yes, that's one of his duties, went to numb my head to put the halo on, he assured me that what I was getting was like novacaine at the dentist and not a big deal. AND-it did not take that long to wear off the last time I did this.

So, Wednesday came along last week and one side of the four pin points on my head was still numb. I had the chemo nurse call it in thinking something was wrong and they need to know they overdosed me. That's when Heidi told her to tell me that it could take months for the numbness to wear off and it may never wear off. As if I'm not freaked out enough!

Heidi called a couple days ago to check on the pinpoints in my head. I told her I was healing quite nicely and that the numbness was slowly going away but that she should NEVER tell a patient they may never get the feeling the back in their head. She said, well it happens. I said it didn't happen last time and you and Tammy need to get on the same page if that's what you're going to tell people. Just know from a patient's perspective that it really upsets us. Then she said, well, it doesn't happen every time. Urgh! Then why say it all?!

I was encouraged by Shah's nurse to call Laurie the manager for the radiology floor and give her feedback about the head thing and wanting all of my medical team to play nice with each other in order to instill confidence in everything that we decide to do. She agreed and said that MD Anderson's approach is multi-disciplinary and it shouldn't feel as if one doctor is trumping another. She appreciated the feedback.

Being your own advocate is important and tiring, but you have to speak up for yourself. No matter how long you've been with a doctor or with anything. Don't take anything for granted.

I don't take any of you, my dear friends, for granted. Thank you for everything. I also don't take any of my healing for granted-thank you God! God is so good!

I love you all!