Thursday, July 12, 2012

July 12

The follow-up with the doctor

Basically, I just asked him a bunch of questions and he answered them. This is how all my doctor appointments go. The doctor walks in, shakes my hand, asks how I'm doing - then takes a seat on the rolling stool in the corner and braces himself while I pull out a piece of paper and start rattling off my questions. It's a lot of fun. (For me, anyway.) Dr. G was a good sport and answered every question I threw at him. Here's a brief synopsis of what went down:

The size of my new little friend: 11.5 x 5 centimeters. So, it hadn't grown a whole lot between the time that it was found on the CT and removed (along with half a dozen or so other organs) two weeks later. Neither the doctor nor the path report can tell me how much it weighed. This is a bit of a disappointment. (But then, I guess it's also sort of a good sign. I mean, the only tumor whose weight I know was the 22.5 pounder. I'm starting to think they only weigh them when it's something extreme. So, all things considered, I'd rather have a small enough tumor that they don't feel compelled to weigh it upon excision.)

The restricted movement of my right arm (not being able to move it above my shoulder) is most likely due to a pinched nerve when they did the main line. ("The main line" is what all those medical folks call the hole they put in and subsequent IV tube that I had coming out of my jugular. ... Gag.) The doctor prescribed physical therapy to get full motion back, I am waiting for that referral to go through.

There appears to be no timeline/expectation for how long the left side of my body will be swollen. (Surely, you aren't surprised to hear, one more time, "this was an unusual surgery, it's hard to predict how a body's going to react".) The upside is that I no longer feel, ALL THE TIME, like I've been kicked in the gut by 12 angry men. I really am only getting that insane pain now after lying in bed for more than 4 hours, or after I do something really draining... like shower and wash my hair.

The combined numbness/tingling that I feel on my left side, from about my ribcage down to just below my hip, is "normal". In time, the tingling/painful sensation should wear off and I'll most likely just be numb. I'm alright with that. In comparison to pain, especially, I heart nerve damage.

There's no obvious reason that I got a hernia last time, and it's likely that I'll get one again. (Just what I wanted to hear. ... In Opposite Land, maybe.) It seems that the more often surgery is done in the same area (hello, and welcome to the story of my life), the skin cells weaken and aren't able to heal correctly. Thus, a hernia is born. His advice was to lift as little as I can for the first 6 weeks (hi, that's what Mom's here for), to give my stomach a good start in healing. Past that, it's a crap shoot as to whether I'll be able to avoid another hernia. ... Please pray for me. I hated that hernia as much as I've ever hated anything my body's ever done to me (less growing multiple malignant tumors, that is).

I've lost just over 30 lbs in just under 3 weeks.

My platelets are getting down closer to the normal range. They're at 824,000. "Normal" is anywhere from 200,000 to 400,000. ... My platelet count in the hospital was over 1,000,000. And rising every day. They sent me home with a prescription for an Aspirin every day (just like an old man with heart problems). Apparently, it works, since I'm leveling out. I was told to take Aspirin every day for another week, and then I could lay off.

I am truly to never take pain pills other than Tylenol again. ... Prior to surgery, I'd been told not to take Ibuprofen, Advil, Aleve or anything of the sort. I knew that was for sure a pre-surgery rule, and the nurse who delivered the blow had intimated that this would be for the rest of forever. But she was a nurse - who had intimated. And it's not like I don't trust nurses (I so do), she just hadn't been totally clear/confident in her delivery of the info. I needed to hear it from the doctor, just to make sure. ... And now I am sure, I am never to take Ibuprofen, Advil or Aleve ever again. Tylenol is my new BFF, heavy on the "Forever".

The pathology report is in, and I quote: Liposarcoma, predominantly well-differentiated (with myxiod and sclerosing areas) with areas of low grade dedifferentiation, present at margins.

Translation: This is not the best path report I could have hoped for. The tumor cells were getting stronger, going a little more radical. And the margins are positive.

Deep breath.

The hardest part of the visit was Dr. G, reading this pathology report, and then looking up and across the room and saying, "I did the best I could." This, from the man, who four weeks ago, stood across from me, looked me straight in the eyes, and said, "I am confident that I can cure you", makes me want to cry. But he did do the very best he could. I know he did. I feel on a daily, if not hourly basis, that he was thorough, and that he takes his job as a surgeon very seriously. That man took anything and everything that was touching a tumor (I learned that he also took part of my diaphragm - so, tumors, hernia, left kidney, retroperitoneal tissue, spleen, portions of my colon and diaphragm). He also scooped as much fat out of my back as he possibly could. (Lipsarcoma are fat-based tumors, so he took every single bit of fatty tissue he could see, in hopes that he was taking any and all cancer cells with it.)

The margins were positive, and the tumor was just starting to go rogue. Gulp. (Taking a break for a Pollyanna Moment, I must point out that low grade dedifferentiation is SO MUCH BETTER than high grade dedifferentiation. It could - as always - be worse, so much worse.)

Dr. G's going to talk to their on-staff radiation oncologist and get his opinion on whether I would be a candidate for radiation treatments. I've had radiation before (and it was brutal, on every level and in every way), so he isn't sure that they could re-treat me, but once he and the radiation oncologist review my records from my prior treatment, they'll make a decision and let me know their thoughts. If radiation is recommended, I will do it. I will do anything (short of eating baking powder or drinking vinegar, etc.) that will increase the likelihood of stopping this from spreading. Or coming back.

I'll be honest, this pathology report is not what I was hoping for. This is not information that is easy to process, and it was not what I wanted to have to report. And yet, I am hopeful. I am still living in hope and with an ever-present prayer in my heart that this surgery was it, that it will be and stay gone.

Also, I am chanting a new affirmation to myself:

I am whole, strong, perfect, powerful, loving, harmonious, happy, healthy and cancer-free.

(I like that one even better than "Everything will be okay. Everything will be okay. Everything will be okay." - Even though I'm still telling myself that all the time, too.)

I figure that feeding myself positive thoughts - about my body and about my financial future - can't do anything but help.

They'll scan me again in four months' time to check my progress, and make sure that I'm still clean and empty in there. And then we'll continue to do scans every 3-4 months going forward.

This is my life.

I love my doctors. I'm grateful for the knowledge and expertise that they have. I feel that they take a personal interest in my care, and that means so much to me. I'm so incredibly grateful for the Lord's timing, that MD Anderson opened here in the valley just a few short months before I needed them.

This is really hard, and sometimes very scary, stuff that's coming at me. (Way worse than being at bat during a fast-pitch baseball game, which I used to think was the scariest thing that could ever happen to me in the whole wide world.) But I can do this. One day at a time, whatever it is that I need to do, I can do this. ... If only because I have to do it. There is only one other option, and lying down and giving up isn't my style.

I thank God all the time for having made me stubborn, for having injected an extra little something into my spirit that made me a fighter; and I thank my parents all the time for not ever trying to squelch that part of me. I could not have been an easy child to raise, but they let me be me. And now, here I am, entrenched in a fight that I refuse to back off of - surrounded by people who love my stubborn self and will do anything and everything they can to help me in this fight.

At the end of the day, I still love my (sometimes, really hard) life. I'm grateful for who I am, where I am, and the people (literally, all over the globe) who support me. Thank you, to all of you (original 13 and beyond), for all that you do to sustain me emotionally, spiritually and, right now, financially. I couldn't possibly do it without you. Thank you.