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5:00a

Today is the tomorrow I talked about yesterday.

I gave up trying to sleep at 4:30a. I jump started the coffee and got dressed. I was surprised how light it already was outside. My book and coffee in hand, I settled on a picnic table in an empty lot to read. It sure is quiet at 5:00am. I feel like the only person alive.

We have to leave here by 7:00. It takes two and a half hours to get to the city. We will drop the children off at Dan’s brother’s in Lake Osweego by 9:30. (This is not a conversation that we want to have in front of the kids.) That will give us an hour to get across town to St. Vincent’s Hospital in Portland where Dr K’s office is.

What will he say?

What will I say?

I guess I should go in and fix my hair and put on makeup. I need to look good for the executionist.

If it is Rhabdomyosarcoma, I will be one of a handful of adults to get this rare childhood cancer. At 41, I guess I haven’t grown up yet. I imagine the more rare my case is the better for me. With no insurance, I want more people interested in my case than ever. Because I sure can’t pay for it. Any of it.

Crazy.

It’s time to wake the family.
***********************************
7:00pm

I’m back. Home at the RV park that is. What a day. It was a long bumpy ride from Lincoln to Lake Osweego. Then the ride from there to Portland was too short. Before I knew it, I was introducing myself to the receptionist. She said she heard I was coming. Like “there is a poor sap with cancer coming up from the beach. You will know her by the Frankenstein gash on her back side.” Yah, that’s me, Franken-Butt. But she didn’t give me any paperwork to fill out. No chart to start. That was weird.
Although we were there before the prescribed 10:30, my name wasn’t called until close to 11. It was a long thirty minutes and at the end of the wait we didn’t learn much more than we already knew. Except that I really do have cancer. But “they” still have not been able to identify it conclusively. The lab in Corvalis could not label the tumor passed “sarcoma” which is cancer of soft tissue. Dr K said they sent the case on to Oregon Health Sciences University (OHSU) in Portland. He added “Bone” and “Skin” to “Muscle” and “Fat” as possible origins. I still don’t get what is taking so long. This my life here people!

It seems I am a Medical Oddity!
I have been rather odd all my life. I have been called an Ass many times over the years. So I guess, getting Butt Cheek Cancer is fitting! Ok guys, just call it Butt Cheek Cancer and let’s get on with it!

As kind as the Doctor is, it still seemed like he said the word “cancer” much too easily. Although it was clear that he was frustrated that he had no clearer answers for us. He gave us the name of the oncologist he likes but said no treatment could be started until the wound healed. What is going to keep the part that he couldn’t cut out from growing in the meantime? That was a good question, but not good enough to get a great answer. The radiation will shrink it. Until then? I mean, the rest of it doubled in size in two weeks. Shrug.

“I hate the thought that it’s still in there.”

“I know you do.”

I had about a thousand other questions that I forgot to ask. But I did ask him whether a growth hormone deficiency as a result of Fibromyalgia could have caused this? I had a chance to get into a study on growth hormone shots at OHSU. No I didn’t take the shots. “Good. The last thing we need is an abundance of growth hormone working in your body. If you have a GH deficiency all the better”. Hmm. All these years with FMS might actually save me. Who would have thought.

The next step is labs and a CT scan. Dr K wanted the CT done tomorrow in Lincoln, but their machine was down for 2 days and they are backed up. Monday at 3:30 was the first open appointment. They told me to come in in the morning for lab tests. This will be the first time anyone has drawn my blood since this started.

The first phone call was to Kelli. I hated to do it. And the next was to my sister Anita and my Mom in Indiana. They were together and put me on speaker.
I am too tired to tell you about the rest of the day right now. I’m going to sleep.

Tomorrow I will explain it better anyway.