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!

Monday, February 8th is the day I am scheduled for brain radiation. It's called stereotactic surgery and it will all be over soon. I am still amazed at how high tech the whole thing is and the technology that is available for an outpatient procedure. Can you believe I'll go home the same day?

When they first told me I'd be doing this procedure again, I admit I was kicking and screaming the whole way. Why would God do this to me twice? And two years exactly to the date as the last time? Where has He gone? Doesn't He want me to be well? That's the promise He made. Why doesn't the promise apply to me? But who the hell am I to question Him? Does this make me a bad believer if I don't just accept everything set in my path?

So, you see, I'm not as strong or inspirational as people think I am. I am a petty child who doesn't want to do this shit anymore. It'll be three years in April. Enough already.

Breathe. Remember to breathe.

Slowly the temper tantrum I was throwing subsided. I went to All Saints Church's soaking prayer in their healing ministry. It was incredibly peaceful. I always feel as if I'm in the presence of the Holy Spirit in that place. God's peace was with me then and is with me now. Rational thoughts replace emotional knee jerk reactions. God is with me. I also went to Northland with my mom and was prayed on by a powerful gentleman. Prayer works. Prayer makes everything easier and better.

I've been breathing more and praying more and offering gratitude instead of grumblings. Writing in a gratitude journal at night really helps remind me of the blessings I have. I am truly truly blessed, even in the midst of adversity.

I don't know why I have to go on this trip. I don't know if it's to help others figure out how to deal with rough times or if it's just to remind me and my family what's important. The why just doesn't matter. I have to forge ahead knowing that I'm not alone and that I can get through anything. None of us are alone. I've even started picturing Jesus with me physically-sitting on the edge of the bed while I'm napping, riding in the car with me, etc. And listen, just because He's Jesus, doesn't mean He doesn't have to wear a seatbelt. And since I'm the one on chemo, I think I'm entitled to the last cookie, don't you? Jesus seems to enjoy my sense of humor.

Another tremendous blessing has been the people that have donated to PayPal to help us with medical costs. From the bottom of my heart, thank you so much. Words are not sufficient to show my thanks. I wish I had a non-profit code so you all can get tax write offs! It is me that is inspired by all of you. Thank you for helping us during these crazy times.

Keep praying and keep believing. God is good. All is good. Lots of love and muchos smoochos!!!