Saturday, September 29, 2012

Brave Warrior

Well, it's been a while since I've posted but wanted to talk about my sister Nicole and what she's going through as a way to keep everyone updated and to release some of the anxiety built up watching her go through what she's going through. Brave Warrior are two words that instantly came to me as I got ready to start writing this and that she is. I've mentioned this before but Nicole was the first one in our family to fight (and beat) cancer. She survived a Glioma that gave her a 10% chance to live more than two years. This is over 20 years ago...

Since then, she's had to deal with the buildup of scar tissue where the finger like malignancy existed and once threatened her life. This buildup has caused her to become epileptic, unable to control seizures on her own and having to be on debilitating medications to keep them at bay. This has resulted in significant loss in quality of life for her, stripping her ability to maintain a "normal" existence. She's been unable to work, drive, maintain a social life, etc..., enough to break you heart.

She tried this procedure 12 or so years ago when the seizures became unbearable, even with medication. The result wasn't as good as we wanted with the surgeon taking out portions of her brain responsible for her short term memory and thus greatly affecting her speech as she has trouble remembering words (imagine trying to talk if you can't remember any words, not easy...). It also greatly reduced her cognitive ability to comprehend multi dimensional concepts, you get the idea.

One thing that surgery didn't take away was her kind, sweet and sometimes silly disposition. You can see in the picture above (which I'm sure she's going to kill me over ;) that despite having wires coming out of her brain and her arms being bruised like she was in a street fight, she still has a great attitude and spirit. She's been through so much that she's taking all of this in stride (to the best of her ability) and is determined to get some of her life back...

This brings us back to the procedure she's having now. It's very similar to the one she had 12+ years ago with one major difference; the team she has working on her now is top notch. I can feel comfortable saying this because I've had a chance to talk to her neurologist and surgeon a few times now and not only are they supremely qualified but they are wonderful people to boot. Dr. Basha, her neurologist, (who she was referred to by my neurologist at the DMC) seems like an old friend. You can tell when a doctor really cares and when they're just going through the motions. I say this from experience. Not to mention, her surgeon, Dr. Mittal, is an extremely busy high in demand guy but still takes the time to come down to see how she's doing and isn't in any rush when we talk to him and ask him questions, no matter how redundant they might be. I really feel like she's in good hands.

So, the hope is once she has the procedure which entails brain mapping (placing a grid on her brain to measure seizure activity and where it's coming from) then going in to remove these portions of scar tissue that have built up since her last procedure, she might be able to get a lot of her life back. The portions of her brain that were removed last time cannot be replaced and she'll always have trouble speaking fluidly. That said, we're all hoping the positive result will be greatly reduced seizures which may allow her to drive again and get back out into the world (with more confidence).

It's not always the cancer treatment that's the most difficult part, it's what comes in the aftermath after you body has been beaten to a pulp. Most people look at it like "well, your cleared of cancer, life is good"! While this is true, rarely is it as good as it used to be. I know from my case for this to be true (you just make adjustments). While I'm enjoying being relatively cancer free for the moment, I still deal with chronic back pain, permanent neuropathy in my feet, chronic fatigue from all of the treatment and the meds I have to take on a daily basis. These are only the physical aspects... Dealing with these things on a daily basis not to mention the uncertainty of you future takes a major toll on you mentally. This procedure Nicole is having is like another battle scar if you will. Hopefully it will soon be over but surely not forgotten.

I'm just hoping that going forward, this current battle she's fighting will go a long way towards her finding an inner peace that sometimes becomes elusive when your a survivor.

Thanks for reading and I hope to have a good update after the major surgery is over, possibly next week.