Thursday, August 13, 2009

Update: time

Accomplished what I set out to do: convinced oncologist to send my specimens to Oncotype & plastic surgeon from different hospital prescribed hyperbaric therapy. The two hospitals we went to were far enough apart that it took the whole day. Spending that much time in a car in my condition is not the most comfortable thing in the world, let me tell ya.

The dual issues I am dealing with now are figuring out what kind of chemo I need and how long I can safely wait to start it. Wounds don't heal on chemo, my breast needs to heal, so the longer I can safely postpone chemo the longer we can wait and see how much more my breast skin heals before we go removing any of it that doesn't look good. Every day counts and every spec of skin does too.

Aside from the when we have the question of what, as in what type of chemo. According to this oncologist, no surprise -- I'm in the gray area. Some would treat me as node positive, some as node negative. Some would also recommend going back and removing all my lymph nodes, others would not.

So, first up -- I need to do find a breast pathologist to reassess my sentinel node biopsy to get a more accurate picture. Thing is, pathologists usually don't talk to patients directly...they do their lab bit and give reports to other doctors. Here I go again, bucking the system. See, this is why doctors don't know what to make of me, lol.

For now, I have alot of waiting to do. I wait until Thurs for my plastic surgeon to come back. I wait to find out my Oncotype score. I try to find the breast pathologist. I start hyperbaric therapy -- where I lay in a tube for 2 hours, 5 days a week waiting for the oxygen to do its thing. I wait to see how much better or worse my skin gets. Besides that, I keep researching.

This is getting to be same old, same old. I thought after the surgery things would be straightforward for a while, either chemo or no -- simple, definitive, no more vagaries, no more decisions for me to make. I thought that my days of Googling my brains out and seeing a gazillion doctors each with vastly differing opinions to wade thru would finally be over.

What the heck did I do with my time before all this cancer shit???


kiltsnquilts said...

Maybe it is lifes way of keeping your mind busy, and not letting you sit in a corner to let what happens, happen!

Good for you for bucking the system, it certainly can't make things any worse and will very probably be a more positive outcome.

What the heck will you do with you time after all this cancer shit??? :-))

Jean said...

See, I was right, they didn't know who they were dealing with. K, I've said this many times before but you are *amazing*. If I were in your shoes I would probably cry and whine and feel sorry for myself. You, on the other hand, and making sure you get the best and most suitable treatment available. Brava! You go girl!

Melanie from the VB said...

(((((((((Kayleigh)))))))))))) Way to get what you need from those doctors!!!

Also-- did they tell you if the cancer was ER+ or PR+? That may affect the decision on whether or not you have more nodes removed or if you do chemo and what type.... and how urgent it is to do chemo....

When do you start your first hyperbaric treatment?

Chuck Dilmore said...
This comment has been removed by the author.
Chuck Dilmore said...

chanting from the sidelines:

the energy
of every Follower
is on you like stadium lights, and
you can feel it coming through you, healing you.

"i am. i am kicking its axx.
this is how i do it."

Imogen Lamport, AICI CIP said...

Really hoping that things improve soon for you. It just shows how much other stuff you do in your life that doesn't really matter, but takes up lots of time.


Mervat said...

Thinking of you and wishing you healing power before and after chemo. I will second everything all the other commenters have said. You are amazing and WILL get through this frustrating time-consuming, energy-sapping tunnel.

Much love and hugs to you my dear,