Tuesday, November 20, 2012

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.

Sunday, November 11, 2012

Sucky Setback

      On November 6, I went back to John’s Hopkins for my second check up on the clinical trial. Until they read my November 1 brain MRI, everything was good to go to continue on the trial. 

Unfortunately, the brain MRI showed another, very small, brain tumor and still some continued swelling around my other four brain tumors. The sponsors of the trial would not allow me to continue on the drug because of the new tumor – I suppose it is too risky if the results were not immediate or status quo.

This hit me pretty hard.  I was really counting on this drug to provide some way to beat down these brain tumors. I cried in the office. Which I do not like to do. My parents were there with me and am eternally grateful for their support. It took a few hours and a long ride home for me to come to terms with yet another set back in this cancer adventure.

There is some good news. The CT scan of my body showed no new activity in my torso. There was a small spot in my liver that looked new – but no change In my other liver tumors.

As a completely different side story, the day I went to John Hopkins, I decided to go for some ‘retail therapy’ and stopped by the gas station afterwards. I really should not have driven, but I wanted an hour to shop for myself. While at the gas pump, I somehow tripped over the gas line, and landed on my face – right side. I really knocked my head hard – and scraped up the right side of my body.  It was terribly painful, and it happened so fast I thought I blacked out. I somehow got up off the ground, finished gassing up and limped home with my contact lens out of whack and leaving a shoe behind. I was so humiliated. It was not a good Wednesday. I was miserable and embarrassed and you should see my face. It looks like I got into a fight – with a big black eye and bruised cheek. And I had to work this weekend – with PTA’s board of directors in town – me and my black and purple bruised eye and ego. It sucked telling people my story. Just one more thing…

I want to try to stay the course – be positive and make it through this next stage in my cancer as I try to always to. I need hope to keep moving.

I see Dr. Wilkenson next Wednesday. I pray she give me some options and hope.