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New Treatment Update

I know you deserve an update.

I know I have a responsibility, which I created myself, to update this site frequently.

How have I been doing on the new drug?

Fair. Fair to partly cloudy.

Still not as bad as chemo. Not even close.

I have mild nausea occasionally, but no “production” on that front. My old compazine presription keeps it in check well.

My main issue right now is I have no energy. In related news, I also have no appetite. This is a bad combination.

I think you might best get the picture of my state right now if I told you I feel like an empty shell. Imagine if you will, and I know this is a lovely thought, a dirty windowsill, with a dry, crackly fly or beetle carcass just lying there. That si the closest thing to which I could compare myself these days.

My body just wants to lie. I would estimate I am in a horizontal position at least 20 out of every 24 hours, and am sleeping about 15 of those hours. My brain knows this only induces further weakness and fatigue. My brain doesn’t really care. My heart semi-cares, and occasionally makes a bold move to get me up and doing something, when I think about my children. But that isn’t happening often enough.  

“Anorexia” is one of the common side effects of this drug. Yes, eating is about the last thing I care to do. I have tried to analyze why: does it make me nauseous? A bit. I have noted my mouth is strangely dry and every bite I eat is like chewing up cardboard. “Just make yourself eat, why don’t ya?” I don’t know the answer to that. I do try. Sometimes I do try. Every bite is torture. I realize how ungrateful that sounds. Forgive me, Jesus. Do you know this feeling too? Surely you do.

I have resumed taking the anti-depressant again. I was doing so well for so long I had discontinued it. We’ll see if that helps.

We’ve definitely come to the part of the story where the Moses, Aaron, and Hur analogy fits well. I don’t know how much longer I can hold up my arms. Any assistance on that front is appreciated. I know you are trying. I know you are battling fiercely.

I do want to share my shred of hope. My dad found my engagement ring. Maybe some of you forgot you can check my prayer needs here and didn’t realize it had gone missing. It was missing for two and a half days, but I kept praying, believing God could return it to me. My dad found it in the backyard. Yes, it had survived almost 3 days in the backyard, and didn’t get carted off by some bird or animal. Finding it was literally like finding a needle in a haystack. God still hears my prayers. I know He does. In the deep recesses of my dry cracked shell, I know He does. I believe He will heal me yet.  

Forgive my silence. Forgive my dryness. But I must be authentic. It’s the only way I know to be. I know my joy will return. I know this is just a bad stretch of days. I know He’s not done. I hold on, white-knuckled, but I hold.

Sara Walker

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Some Reasons to Praise!

We get pretty excited around here about answered prayers and any evidence of a less aggressive cancer:

For those who don’t know, and I can’t remember who does know now: I had extensive blood work done yesterday (as in 14 tubes full) and had both a CT scan and a PET scan today.

I just spoke with the research nurse who had seen the results of all those tests and said there has been no significant growth of the cancer or deterioration of my labs during this month of no treatment. Praise God! This is a first!! My labs are holding steady – my liver function tests remain in a normal range (there’s that beautiful word “normal”) and there was no big change in my tumor marker (also a blood test). She said the CT scan had mixed results, meaning a couple of places had even shrunk a bit, despite no treatment for 25 days! Thank you, God!

So everything looks good at this point for beginning the next trial on Monday.  Thankfully, in other answered prayer news: Dr. Bendell found a loophole which allowed me to go ahead and start treatment for the cancer next week despite my dreadful dermatitis: a dermatitis that again defies explanation by any of a number of doctors, and beats anything they have ever seen. A few weeks into the trial we may be able to start treating the dermatitis with steroids or other meds.

In terms of current prayer needs:

1.Please pray that this current whole-body (face-sparing) dermatitis that I have will resolve soon.

2. Please pray that I have minimal pain with my core liver biopsy tomorrow. The drug companies need more of my tissues for study purposes. This was a very painful procedure last time (last year), but they were unable to give me the full pain meds to help last time too. (Can’t remember why now.)   

3. As always, pray for full healing of my cancer. “Is anything too hard for God?”

While spending time in waiting rooms this week, we were given even more evidence that we are extremely blessed to live here in Nashville. One man explained to us that his brother, a current Sarah Cannon patient, is from North Alabama and was being treated at MD Anderson in Houston, TX (one of the most well-known cancer treatment hospitals in the country.) His doctors at MD Anderson referred him to Sarah Cannon (SC), saying the best place in the country for his cancer to be treated was just about 100 miles from his home – at Sarah Cannon Research Institute in Nashville, TN.  We also met another lady who told us she had met patients at SC from as far away as San Francisco.

Thank you, Father, for putting me in good hands here at home, so that I am only very minimally away from my family. What a tremendous blessing!

Thank you for your prayers. I know they have been heard!

Sara Walker

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