Friday, August 14, 2009

Should Always Bring a List

Experts always advise you to bring a list of questions to your doctor's office. I usually do, but yesterday I forgot. I was able to report most of my symptoms and ask most of my questions -- but I totally forgot to report the twinges from the tumor in my psoas muscle and forgot to ask if he thinks that means the chemo is helping kill it. Darn!

[But on Tuesday I did mention my theory to my primary care physician about how the twinges might be the chemo pestering the tumor. He agree and suggested strongly that I continue all positive visualizations like that, where the chemo droplets are zooming around inside me beating up all the cancer cells they find.]

Next Thursday, I'm bringing a list.

What threw me off was our discussion of my feet. I have some numbness and some pain in my feet right now. Does not keep me awake at night. Does not cause me to fall down. To me, it is no big deal, not worth $60 for Neuragen at this point. (But the Neuragen looks awesome and I would buy it if I felt I needed it.)

But the doctor is concerned because it is early to be having these side effects and we can expect them to get worse. He says that we could try Lyrica (prescription drug) if it gets to the point where it is bothering me. He also says there could eventually come a point when I get a rock in my shoe and I can't feel it and it tears up my foot which would be nasty if my platelets were low and could not clot... or when the foot numbness makes it so that my brain doesn't get accurate info about the terrain I am walking on and so I trip. If that stuff starts to happen, he would want to reduce the dose of Tax or take me off completely and replace it with something else.

Inside my head, at this point, I am thinking "Not going to report these any more neuropathy symptoms. Better keep my mouth shut. Want to keep taking the Gem/Tax, the gold standard for leiomyosarcoma! Want to be in that 40% group that gets significant shrinkage!"

I wonder if any of that showed on my face. Lou says I am like an open book, very easy to read, like a baby!

Finally, we also talked about the cluster of migraines I have been having, and whether they are connected to the chemo. The other doctor who was sitting in (a "fellow" in an advanced cancer program) suggested that the migraines could be connected to being dehydrated. I did get dehydrated last week and did have two migraines last week. So I am drinking more and carrying around my sample of Trexmet.

The Plan for the Scan:

On my next Good Chemo day, I will have labs as usual, have a CT Scan with contrast from neck to pelvis, meet with the doctor, get the results, and decide whether to go ahead with GEM/TAX regimen or switch to some other chemo.

That will be a LONG DAY, Dr Reidel warns.

It will also be an emotional day, Karen warns:

  • If we see shrinkage: Joy and Dancing and Relief!
  • If we see stay-the-same-sizeage: Happiness and Relief!
  • If we see growth: Fear and Regret followed quickly by Renewed Determination and Eagerness to hear about the new plan, the new chemo. New chemo could be like a new adventure. There haven't been many big surprises with Gem/Tax; been there, done that.

But we have weeks to go before SCAN DAY.

Oh gosh, the actual date for SCAN DAT is September 3, which is my mother's birthday. Do ya think maybe the universe could give us some shrinkage for Patsy's birthday?! (The universe usually just ponies up a gift card to Barnes and Noble.)


Anonymous said...

Hey Girl
Yes, even without "chemo brain", I usually forget to mention at least one thing to my doctor.
The Neuragen is expensive, but one man claimed that it really worked. I will ask my sister what she thought.
If you need a ride on 9/3, I can be available.
As I have said before, but truly believe cannot be said too many times, PMA is the super power that defeats this disease. As always, keeping you both in my T's & P's.
Love ya

omerandpat said...

I know what I want for my birthday!!
Love ya,

Anonymous said...

OMG, 1 person, 17 years, Nope, it never was in the stars for me. I just cannot imagine. But, I think that is totally awesome for you guys. And BTW, from where I'm sitting it looks like you got a gem. You guys have a wonderful day.
My sister did get back to me about the Neuragen, so remind me next time we talk.
Alway in my T's & P's. Love ya

Fran said...

Happy Anniversary!! I hope Patsy gets her birthday wish! Love, Frankie