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She’s Back!

“We haven’t met, but I remember you.  I know all about your case.  We discussed you often among the interdisciplinary team.   You never made it to me last time… I believe there was a sticky insurance problem… but now you are here!”

The appointment with Dr. R went well yesterday, all things considered. His office is part of OHSU, but in the new section at the bottom of the hill.  I hadn’t been there yet.  And neither had my scans, evidently.  OHSU has not yet received my scans from the SCCA.  And my scans from Florida, unfortunately are on their way back there for spring break…You see,  I reluctantly gave my copies to their records department in Seattle expecting to have them returned directly to me.  After the four discs had been uploaded into their system, they promptly shipped them to me, all right – to me at my old Florida address that is.  We are now waiting for them to make the round trip via a change of address order.  Washington has copies, of course and we are also waiting for them to arrived from there. 

All things hinge on the reading of the scans.  Dr. R won’t take anyone else’s word for anything.  He doesn’t want to read someone else’s measurements - He wants to take them for himself.  I like that in a doctor.  He is a funny guy. Young looking, although he is probably my age.  Easy going, but informative.  He rattled off a bunch of experimental drug names that have no letters… like 6453272  and 57738982 blah blah blah.  I don’t know how he remembers which is which. 

But what did he say?

• He said he needs the scans.
• He said he has access to trial chemo therapies.
• He said I need to decide whether I want more treatment or not.

I said I want more treatment.  He asked why.

“I have four kids, three of which are sitting out there in the lobby coloring pictures.  I am 42 years old.  I want whatever tricky thing you have to give me.”

“Ok then.  I need the scans.”

There is a concern about my right femur.  Dr ER (from SCCA) called us and emailed Dr R about a lesion on the top of my right leg near the hip.  During the weekly team meeting up there, someone one pointed out that I may be in risk for a fracture.  Since Dr R did not have access to the scans yet, he ordered x-rays of both hips and a visit to my old friend, Dr. H - the Wizard of OHS that removed the tumor from my tush last fall.   Evidently, a fracture at this point would set my treatment back a long time, time that I might not be able to afford.

Dr. R wanted me to take a reality pill.  “You are not a statistic, but the statistics are not in your favor.”  I know.  As he was talking I was picturing my Aunt Shirley.  Thirty years ago, if you remember, she was told to find homes for her children.  They all have homes of their own now.  I come from sturdy stock.  And I am not in charge anyway. 

After wasting three hours across town at the new IKEA store (whoo hoo what a place!)  we went up the big hill to OHSU at the top of the city.  It was good to see Dr. H again.  He showed us the x-ray.  He saw what the other team was concerned about, but I couldn’t see it. It was like looking at the sonogram picture of a week old embryo.  “Yah, he looks just like his… a… father…??”   I don’t know how they do it.    Dr H didn’t think that the risk of fracture was worth the pain of making sure it didn’t happen. He could see the weakened area, but said that there was no holes in the face of the bone yet. If we wanted to be [overly] cautious,  we could shore it up now. He would have to go in and remove the affected bone, cover it with a plate and screw it in place.  There could be no chemo for a couple months. ”Why don’t I just be careful?”  “Yah, good idea.  And we will take a look at it every two or three months.”  “Good idea.”  “Now, would you mind if I had a look at your ah…?”   “Finally someone is interested in my butt!  In Florida, every time I turned around I was begging people to look at my butt and no one really cared enough.”  “Well welcome back! We’ll look at your butt every chance we get.”  And he did.  And he said it looked great!  haha  He said it healed up nicely.  Wha’da’ya’know.

It was early evening when we made it back to the house.  An hour for resting and then Dan and I started to get ready for our date!  It was our 20th Wedding anniversary and Kelli and Tim gave us a gift card for The Cheesecake Factory!  It was nice to go out as a couple and pretend for a little while that you are as normal as the next guy.  I tried not to think about the sickness inside me.  That’s just it: I don’t feel sick.  I see very sick people all around me, but I don’t feel like I am a part of that.   I get tired and achy, but I spent so many years with the pain and fatigue of Fibromyalgia that it doesn’t phase me as it might someone with no history.    In fact, as I sit here writing this, I fall asleep for a minute or two and wake to continue writing.  haha   It just takes me longer to get things done. (I have been writing this all day - in between school with the kids, getting laundry done, and paperwork with Dan.  Oh and napping.) 

So, things are normal - Hurry up and wait.   Just a normal condition when your condition isn’t normal.  Please keep praying for us, but don’t worry overly much.  I know my tone is reserved today,  it’s been a long month… I am just a bit tired.  What I need is a couple days of rest followed by something fun. 

Something fun. . .yah, that’s what we all need. Something fun.