Going home

Thus far, our experience with MD Anderson has been … frustrating. We know from the testimonies of so many it is an amazing place for healing and that is why we are here. However, we are discovering getting to a treatment plan may be a more lengthy process than we hoped. We maintain MD Anderson has the most experience treating sarcoma – again that is why we are here. But it is still a paradigm shift from the personalized and expedited care we received in Oklahoma City.

We have had a lot of difficulty communicating with Dr. Benjamin’s nurse, who is the only direct point of contact within his staff. When we do talk with her, she rarely has the answers we need or even listens to our questions. Long story short, we found out yesterday we will not know the results of my pathology until late next week at best. This means it is very unlikely I will have an appointment with Dr. Benjamin next week to discuss a treatment plan. I also found out he will be gone (not for sure of the start date) until early June. So, I may not have a treatment plan for another four weeks. To add to this, they scheduled my MRI at 8:15am on Mother’s Day. So, the one thing communicated to us yesterday by the nurse was that we can go home tomorrow instead of waiting around in Houston for another week with no answers.

I am frustrated because there is no closure. We came to Houston anticipating a treatment plan because of the four weeks of extensive preparation and testing in Oklahoma. We provided (in advance) every lab, operative, pathology and clinic report, every film and scan. We came with a diagnosis. We were in search of a second opinion to feel confident with our plan of attack. And now, we are heading back home with no more answers.

You have to understand, I live every moment of every day knowing I have poison not only in my right forearm, not only in my vertebrae, but perhaps throughout my body (in microscopic traces). I wanted it out the moment I first heard on April 12 that it was in my body. Regardless, I know chemo will be the first step.  Although I’m not excited about that, I am ready to lose my hair in order to kill the poison. . . and this is where my frustration lies. I feel as if we are so close to a treatment plan, and yet so far away. The news yesterday was another hope deferred – something that is becoming all too familiar in this unexpected journey. I will let Chris provide specific prayer requests. But in broad terms, my prayer is that my hope will remain in Him and not in man.

I am very thankful for my dear friend, Melinda, who has walked this path more than once. She reminded me yesterday, that although I may feel like a number at MD Anderson, I can rest assured the Creator of the universe knows the number of hairs on my head (which, ironically will be very few in the months to come). I have to rest in the Truth He knows me. None of these interruptions are a surprise to Him. He is the one thing we can hold to right now.

“The Lord is good, a refuge in times of trouble. He cares for those who trust in him.”  Nahum 1:7

Specific prayers:
-- Pray for God’s continued healing of Kelsey’s body in this time of waiting.
-- Praise God for His provision through friends and divine appointments.
-- Romans 12:12 – “Be joyful in hope, patient in affliction, faithful in prayer.”
-- Pray for clear communication with Dr. Benjamin’s staff in the days to come so we will know when we need to return to Houston and that it will be soon.
-- We are thankful for a great night of sleep last night, a day without any appointments and beautiful weather.
-- Pray for safety as we travel home. Also pray Kelsey’s back would not be so sore on this trip.