Warrior Mode

I have been in warrior mode lately. Trying to figure out the best thing to do and the order in which to do it.

Having tests taken, waiting for test results, calling doctors' offices, having doctors' offices call me, having test results faxed to me, going to see doctors for test results, filling out forms, requesting records, copying/faxing records...and in between all that, thinking, pondering, wondering what I need to do to stay alive and have some semblance of quality of life.

Right now, that is diminishing. My lung is filling up, I can feel it. I can't breathe well when I lay down or recline in my chair. I cough when I go from sitting to standing, laying to sitting or standing, basically when I try to breathe in general...or for no reason other than it feels like there's an elephant sitting on top of a rock in my chest.

Jaw stuff's still happening, but for some reason it's eased up a bit in the past few days (don't wanna jinx it). My neurologist's office called and said I need to see a TMJ doctor. Come to find out they are called oral surgeons and the ones I have contacted so far don't accept insurance for TMJ issues. Of course, the neurologist's nurse also said my TMJ discs being dislocated are "the root of my problem". No, wrong...that is a symptom of my problem. So, they really weren't much help...but I got a fun brain MRI out of it.

I got the results from my genetic testing today and the good news there is that I tested negative for the BRCA gene. This means the rest of my family has about the same chance as anyone else of getting cancer. If I had tested positive, their chances would have increased significantly. So, I took one (actually several) for the team...yay Kelly!

I have an appointment with Dr. Khan at KU Med on Wednesday morning. I faxed them the condensed version of my most recent records and will be lugging along my past 1.5 year's worth of scan results, doctor's dictation notes, blood test results, etc.

I need to make an appointment to get my lung drained again...very soon. As much as I hate this procedure, it would be nice to breathe a little easier again.

Another reason I don't like having anything like this done is that I'll have to do the Lovenox belly-bruising shots.

In addition, I need to make an appointment with an interventional radiologist to see about having another port put in. Or a PICC line, which I will do if I have to but have tried to avoid for the 9.5 years I've been in cancer world.

I'm such a clutz, I'm just worried that I'd somehow rip it out of my body accidentally even though it will be covered with a bandage wrap. Of course, that's another issue for me...I'm constantly taking band-aids, cotton balls, gauze, and bandages off too soon because I can't stand having them on my body...it feels like I can't breathe. It's like I've been set free once I get them off...strange, I know, but I can't wear necklaces, bracelets, or rings for any length of time for the same reason. Weird...but that's me.

What else, what else?

I went to see Terri for her birthday this past weekend. It was sort of a semi-spontaneous thing. We had talked about it, but I never know from day to day what I will be able to do. Luckily, I felt well enough to drive myself there on Saturday, spend some quality time with her, Bob and Wesley, and drive myself back on Sunday. We went here and here, and I got to see their new home in Camdenton.

I am so very grateful for times like these when I can be semi-free, and semi-normal. It's the little things that make me happiest these days, and spending time with my friends has always been at the top of my 'happy' list.