Thursday, November 15, 2007

Countdown to the BIG day`

Well, I have two more days 'til I leave for NY and my tethered cord surgery. Don't look in my guest room! It's piled with things that I think I need to take but which will never fit into the smallish suitcase I intend to take. I want to bake some cookies for my surgeon, I promised him some chocolate chip cookies...where to fit those in? Tomorrow, I'll go to Wally World and see if I can find a good cookie tin.

Someone suggested taking hard candy to give to nurses, perhaps to entice them into your room more often? I have lots of root beer barrels. I'll let you know if it works!

Today, I went to my cancer doctor as it was my six-month checkup for the monoclonal gammopathy I have. I was first scheduled for Nov. 23, but when I got my surgery date in NY, I called and switched my appt to today. This caused all kinds of confusion and a blood test was done, but it was the usual CBC type test, and all was pretty normal. I asked my oncologist about the protein levels (the markers for multiple myeloma that we are watching), as they have been creeping up this year. He seemed confused, and stepped out the door.

He came back and said that today, they had just done the usual test for pre surgery stuff and to see how the pamidronate treatments were doing. No proteins levels were taken. He said when I get back from surgery and feel up to it, to call and schedule those tests. Sigh....a patient has to work SO hard to just get things in order. If it was left to even the best doctors and nurses, things still seem to fall through the cracks. I'll have plenty of blood taken in's 70 mile trip was unnecessary.

Last Monday, I did have a pre-surgical ECHO done. I told the techician that I really need the report as soon as possible and needed the print out to fax to my surgical coordinator in NY. My medical asst. in my local PCP's office called today to tell me that the cardiologist was pissed off that I was making such demands, and that "I'd get the report when I got it." Period. But I guess he did tell my PCP that all was normal on the ECHO. Nice of him. What a butt head if you ask me. Once again, so much work on the part of the patient. It would be a great service and line of work to become a patient advocate, but I suppose the liability would just be too high. Something needs to be done.

After reading my last post and seeing the picture of me jumping Shadow, a good friend wrote to me that maybe when I'm better, I could get an old horse to brush and just "be with." She told me to "save that cookie." I do like that idea and at times I feel good, I do think about that. Maybe a large pony would be nice. Or, maybe I better go into mini horses so I'm not tempted to ride!

However, I did give the cookie to Quincy who relished it as much as he'd enjoyed so many others over the last few years in the horse stable.


Scott said...

So what does the tethered cord surgery do? Is this a step towards taking your neck brace off?

By His Grace said...

Hi Scott, we're both up late, huh?
Yes, but it's a long road. I'll have the spinal cord released at the base of my spine (like zipperhead has had done) and then 2 months after that, fly back to NY and have my skull extracted upwards and the skull/Cspine fused (also like zipperhead has had done) and then wear a halo for 3 months and then see where we're at.

This has been the LONGGGGG awaited "first step." Going back to flying to NY on my own to see Dr. B at TCI and having him be the only doctor who cared enough to look at my Jefferson FRx and see that it is still broken, after 3.5 years. That was last Jan. So, it's taken 11 months to make it all start happening, the long road of medical examiners and awaiting authorizations and tests etc. I've been blessed in that since Dr. B's findings, everyone has been very accomodating.

My big vision is that this next summer, things will be a lot better for me...

thanks for asking...

hugs to you, my e-friend~

Becki said...

Hey there!

It's me Becki! I want you to know I am praying for you! I hope that everything goes smoothly and you're up and feeling so much better!