Wednesday, August 24, 2016

After I Stopped The Clinical Trial

Three weeks ago I stopped using the clinical trial medicine because of a terrible skin toxicity side effect.  The medicine came out of my body in the form of a rash and pimple like sores. After lots of oatmeal baths, meds and Psoriasis shampoo I've survived! Though my outbreak was mostly on my upper torso, face and scalp, it definitely made me feel even more empathetic for Job! Poor Job and all those boils! (Job 2:7)

Last week's appointment showed that all of my blood work was back to normal except for my hemoglobin, which Dr. B says will improve over the next several weeks.  My energy and shortness of breath has improved this week, so things are looking up!

Many have asked if I'm afraid....or angry....or disappointed.  It is so odd that I feel none of these things.  I truly believed that God gave me this Kras clinical trial right here 15 minutes from my house.  I believed he was going to use this trial to heal me. Yet he quickly took the trial away with no other option dangling in front of me. Yet, the peace that I feel about it is unexplainable.

Right now as I'm typing God put these lyrics in my mind from Casting Crowns song, "Praise You in the Storm". These lyrics sum up my feelings better that my own words can today.

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

#castingcrowns #praiseyouinthestorm #cancersurvivor #S4C #stage4

Thursday, August 4, 2016

A Definitive No

What a week its been. Although I've taken no additional trial meds since Saturday morning the effects continue to wreak havoc on my body. It is as if the poison has to exit through my pores. Its been very difficult to have such a sore head and face, but I think it looks worse than it feels at this point. My blood counts continue to decline keeping me pretty low energy, but the muscular/bone deep type of fatigue and nausea has all left. Anyway, I'm on the mend and trying to be patient about the slow progress rate!

Before meeting with my doctor yesterday I was a bit nervous to hear what he would say. I felt at peace about stopping the trial, but realized it would leave me questioning that decision if he felt we should treat the symptoms and push through a bit longer.  I was praying about this when my doctor came into the room.  He didn't look at me very long when he confirmed we needed to stop the trial because of too many harsh side effects.  I was thankful and relieved that we agreed.  He explained that the trial side effects should not be harder on me that doing the maintenance chemo, and this certainly has been worse. I've had to do another round of blood work, an EKG and Echo Ultrasound of the heart to show if any damage was done during my 12 days on the trial.  I'll have a weekly appointment to make sure that everything goes back to normal physically and document the progress.

Something that was overshadowed by the starting of this last trial was the fact that my July 14th scans showed NO NEW GROWTH. We are so grateful for this gift! It also helps make it easier for us to walk away from this trial knowing we have some time to search for the "next thing".

Thank you for your prayers for a clinical trial.  Please keep praying for another trial and pray that God will lead us, preserve life and glorify himself in the process.  May we continue to live faithful in spite of this long lingering disease.

With love. XOXO

Monday, August 1, 2016

I'm not well...

Some of you know I started this clinical trial strong, but have rapidly gone down hill the last 5-6 days. By Saturday night my abdominal pain was almost enough to take me to the ER. Years ago I would have gone, but now I'm hard set against going to the hospital. I've spent enough time there. In the night I developed sores all over my scalp and that has turned into other sores, plus rash. It's not itchy. It's actually just painful. Along with my other long list of symptoms (heavy pressure behind my eyes, GI problems, nausea/vomiting, extreme fatigue, headaches, cough, body aches) the sores and abdominal pain meant we stopped taking the trial meds Sunday. I've been at highlands oncology today getting checked out and getting IV Meds, vitamins and potassium. Hopefully this will help flush my system and get me feeling good enough to start eating and drinking more. I'll see my main doctor on Wednesday to determine next steps. I was supposed to have a biopsy tomorrow and spend the day here getting blood draws Wednesday, but that will all be on hold now. 

On one hand we feel like God orchestrated this trial for me here, but not with these type of side effects. I am at peace that this looks like a door being closed. Billy and I know that only God can author this story of ours. It's a story with so many twists and turns we can never guess the ending!  But we know he is good.  πŸ™πŸΌπŸ’œ