I visited my oncologist today (I forgot to mention that, I am so sorry!). The topic of todays visit was to determine if I needed a higher dose of Temodar (chemo). I believe I was overdosing myself on laxatives (constipation scares me) so we had an in depth conversation about that. He said he would do what ever made me feel the most comfortable, but that given my track record with my platelets he would not recommend going past 300 mgs x 5 days (I am currently on 200mgs x 5days) I broke down for the first time in front of him and cried when he said that. I dont really know why, I think that I am just so scared that I am not doing enough, that I am not hitting the cancer cells hard enough….those of you who have cancer know that feeling. I want to be as forceful as possible in beating this thing, and I need someone like Dr. Chowdahry to pull the reins back a bit and tell me that everything is going to be fine.
He agreed to raise my Temodar dose to the 300 mg x 5 days, and told me to watch for any fatigue or bruising. We talked about quality of life vs. quantity and that it was useless to be alive and sick as a dog. I agreed to call Robin if there were any side effects (at my current dose I really don’t have any other than constipation and that is manageable).
I am so glad that I have an oncologist who is also a Christian. I am so thankful that every time my appointments are over, he tells me that He is praying for me. I am so thankful that my nurse, Robin, is also a Christian and is praying for me. I cant tell you what that does for my heart. When I started crying, he quietly said “This is the time to positive. You are doing so wonderful. You are going to beat this thing, and I am going to help you.”
That did my heart so much good.
We talked about how powerful prayer is, and how he always prays for every single one of his patients. I have to remember that no matter what, this earth is not my home, but that is so difficult when the reality of your mortality looms over your head.
I feel like a weight has been lifted off my chest, and I really don’t know why but I am thankful that it has. I sometimes feel like I have to be strong for everyone else, and I neglect my own emotions until they build up inside of me… I have to work really hard at that, and I am committed to doing that. I also need to listen to my body more and rest when I need to rest. I think that is the biggest issue right now. I haven’t stopped going since we left for Virginia. I am not the person I was before chemo, cancer and radiation entered my life and I need to learn to accept that and not push myself so hard both emotionally and physically. It is really difficult to do when life goes on around me at the same pace it did before cancer. My kids still need their mom, my husband still needs his wife, Emma still needs so much attention and medical intervention, yet I need to remember that I cant be all that I was before. I need to work on asking for help when I need help and not being to prideful and stubborn and stop dwelling on the things I cant do now, and focus on what I still can do.
Things to pray for this week and next:
Tomorrow (Thursday): Emma has Cardiac Transplant Clinic in Gainesville. Pray that she breezes through all the labs and tests. She hasn’t seen Dr. Fricker in a long long time and is so very excited to finally see “Dr. Foo”!
Next Thursday: Emma has her annual IEP meeting at her school. This is so very important in her education. Pray that we set manageable goals. We are also discussing putting her in until 3:30 every day (she only stays until 2:30 now) I know that in many kids, an hour doesn’t mean much but it does when you have a Mitochondrial Disease, pray that we make the right decision regarding that.
Thats it! I pray that your week has been fantabulous and that you made many many memories. 🙂