scheduled to fly

After what seems an interminable wait (actually about 2 1/2 weeks) I am now am ticketed to fly and scans and such are scheduled. Fly this Sunday, tests Mon, Tue, wed and first dose of the new drug on thursday. Fly home on Friday.

Largely at my insistence Jacki is not going this time due to finances and it looks like this trip will be relatively simple. Even the reaction to the new drug is supposed to be mild. If it is not I can stay longer. Still, she is torn up and I beg your help for her anyway you can, ie, calls and prayers.

I have been on edge more than in a long time. I have been self centered, impatient and opinionated, needing to be right and sacrificing kindness. I have not been gentle with myself nor others. Sure, much of the time those statements have not been true, but it does harm to myself, others and my relations with you when I act that way.

Falling short of my lofty desire to walk through this challenge as a Spiritual giant leaves me with high levels of oft' times uncomfortable humility. I am a human who has learned to ask forgiveness from my God and you and get back on my side. Thank you so much for your love, compassion and patience.

And God, thank you for this opportunity to help find a cure for PRCC.
Bill

Scheduling

All through this process since initial contact with the NIH, tomorrow has meant "at some future date" usually within a few days. A few weeks ago when I was there and had the biopsy, I was told I would hear results in a week. Turned out to be 11 days. Now, las Tuesday I was told the schedule for my trip to Bethesda would be ready by Friday. 2 days ago. Dare I hope for tomorrow? Hope.

A meeting topic a couple days ago was hope. We drew tickets to determine who shares next (that way God is in charge?). It was slow sharing. Those in the room, recovering drug addicts all, seemed to have very little to say on the topic. A few with drawn tickets passed. Some tickets drawn went unacknowledged. Those who talked had pretty short shares. We who by any earthly definition of fair would be long dead, instead sitting in a room of similar survivors with little to say about hope.

I have for all my adult life had something to say about most anything. But I do remember stumbling on sharing my experience of hope. Using an active sense of the word, "hoping" might be easier to talk about. My handiest dictionary gives one meaning of "hoping" as "go for, plan, be after". Next time the topic is hope I think I will talk about hoping - I know some about go for it and get after it!

Back to present feeling of impatience mixed with fear, resentment, judging - the usual suspects. I hoped last week for schedule done by Friday as she said. Instead the weekend has been too much of the disappointed let down words. Speaking well of myself I have also mixed in patience, understanding, compassion with the other less appealing attitudinal shortcomings. If I want to have a good day it helps to start by lowering my expectations of others.

So, I hope to "get after" scheduling and maybe packing my bags on the morrow. When I do go the action plan is to get scans - CT, brain, PET, cardio, little toe and other assorted pokings and proddings. All to establish a baseline of my physical self to begin my little part of this scientific research project on how to cure papillary renal cell carcinoma metastasized into my lungs. At the least I can be of service to the next guy, and I HOPE it works for me.
Bill

I am In!!!

Just got off the phone with my lead Doc at NIH - I am in the trial!!! I go back to Bethesda soon for initial comparative tests, ct scan, brain scan, pet scan - the works.

I sent text to Jacki saying, "It's all gonna turn out good Baby. I am with you for a long time and lots more loving you!"

Relief, joy, hope, humility and gratitude are filling me up!!! Sure, a long road on the trial is ahead, but I have a great sense of being one of the early successes in this new treatment for mPRCC. Thank all of you for your prayers and thank God for the opportunity to be part of the solution for this "untreatable" form of cancer! I am too excited to sit, gotta go!
Bill

delay

Direct quote this morning from Chief Nurse of the drug trial,

"I wish I had the answer today, but we hope to review pathology this week on your biopsy. We will contact you as soon as we review."

Certainly this is an opportunity to practice faith trust and patience. However, each episode of this drama raises a little hope followed by a week of waiting for the next. Could we at least get some comedies with Super Bowl advertisements in between?

"Take away my fears and doubts so that I may better demonstrate Your presemce in my life."
Bill

Ready for news

Went to Bethesda two weeks ago. Had a needle in the kidney biopsy 12 days a go. Because the drug trial is a scientific research project, they must determine type of cancer for themselves rather than rely on the highly invasive biopsy 18 mos ago. Results expected Tue or Wed this week. If type of cancer cell is as previously diagnosed, then we will learn the plan. If is a different type of cell, then NIH said they are interested in my case anyway - whatever that means.

Since the biopsy I have learned my monthly COBRA payment for health insurance goes this month from $360 to $840. COBRA lasts three more months, and then BCBS is required to sell me individual insurance - at whatever fee they deem appropriate. Hmmmmmmmmmm, I wonder how much?

I will let you know as I hear more this week. My bags are packed.
Bill