What is up with my head?!

After I got punted from the clinical trial, I headed back to my oncologist to get the next plan. As of yesterday, she prescribed a double whammy of oral chemo – Xeloda (two weeks on and one week off) and my old friend, Tykerb every day. Both drugs have the potential of going into the brain – which continues to be the part that needs priority treatment.

Honestly, I they (the medical establishment) does not know what to do with me. I mean, people with brain mets usually live 3- 6 months, and I’ve been around for 17. It helps that most of my tumors are not in critical functioning areas (except for one in my brain stem).

Still, the MRIs show swelling around the tumors and I have to say, I am pretty sure I am experiencing outward symptoms from the brain tumors for the first time. When I walk around I feel like a drunk. I can’t get my balance, and sometimes my vision is fuzzy. The steroids continue to cause the bloating, weight gain, and muscle weakness which does not help my balance. I can still go to work, exhausted at times, and typing is beginning to get difficult. Climbing any stairs is a chore.  If I were an extremely depressed pessimist, I would say this is the beginning of the end.

Good thing I am not an extremely depressed pessimist. I’ll start taking this new oral chemo, and dealing with the new array of side effects, and thank God every day I go to sleep at night and wake up again in the morning able to function in some way.

I thank God that I get to see my two beautiful daughters come home this evening for their Thanksgiving break for a few days. I thank God I have my amazing husband who looks after me and worries and helps me and expresses his feelings of concern about my condition. I thank God every day for my parents who still drive me everywhere and put up with my moods and impatience. I thank God every day for my son Jake who showed his frustration about why the doctors can give me what I need to get better – he just wants me to feel good and I love him for it. I thank God every day for the dozens if not hundreds of family, friends and survivors who pray for me and think of me and wish me well. I could not go through this without so many.

I will continue to find strength.

Love to you all.