Saturday, January 22, 2011

The ongoing saga

Dearly beloved,

I started a new round of chemotherapy Friday. The cancer has shown up in four new hilar lymph nodes. In addition, the PET scan shows that there are now bone metastases, small areas of cancer growth in my spine, ribs and hips. So along with the chemo, which should stop this progression and hopefully reverse it somewhat, I'll also be getting another drug which helps the bones get stronger again, called Zometa.

I'm repeating the same chemo I had last spring, and I'll be tested in about six weeks to see if there's a response. If there isn't, I'll switch to a different chemo regimen, something called Xeloda. (gotta love these names...) If you are a science geek, the latter one turns from 5’-deoxy-5-fluorouridine to 5-fluorouracil in my bod. I'm hoping it will give me magic spider powers, or at least make me glow in the dark.

By the way, are you allergic to hamster protein? I challenge anyone who has not done chemo to know the answer to this question BEFORE you are exposed to paclitaxel NAB. "Yeah, you know, every time I chew on a hamster my lips swell, and I get all short of breath! Who knew?" Pacletixel -NAB stands for "nanoparticle albumen bound", and the albumen it is bound to comes from hamsters. Maybe instead of spider powers, I'll get magic hamster powers, whatever THOSE are.

I am tired, and fairly deep in my cave. It's hard to express to someone who has never dealt with a chronic, incurable, progressive disease the amount of stress we are under, nor what an emotional roller coaster it really is. Kevin is exhausted and thin, vulnerable to every cold and flu bug going around. Not to mention starting a new job. I'm working, and find that I often go in at odd hours, so I don't have to chit chat - I want to go in, work, and then come home and rest and be with my family.

I think sometimes people coming in from the outside are horrified by what stress cases we are, but at the same time, I long for understanding. Lately, my answers to "How can I help?" are...Drop off a meal; fold laundry; take Kevin out for a walk; and sit and listen to us talk (vent) for half an hour, and try to get into my world. Planet Cancer is NOT your world, but sometimes it's too much effort for me to act as if I'm in yours. Every once in a while it's really useful to have someone try to walk in mine. The few people who have done this, I think, have a far better understanding. Interestingly, MOST of them also are living with chronic disease, if not cancer. Maybe that's the only way to make the jump into wanting to understand.

1 comment:

  1. Hi Christine. Thanks to Julie, I have read this. You are such a brave woman. I just want to say that I'm here if you need me. I understand only a little of your world, and that comes from going in my cave with dealing with 2 boys on the autistic spectrum. Some days I get so weary, and don't want to talk to anyone about my situation, that I go in my cave, which is very unusual for me. I used to be such a big social butterfly. Threw lots of gf parties, went out, etc. Now I am working parttime, jockeying kids here and there, and constantly riding the rollercoaster of hopes, fears, and dreams. Noone has been able to relate, yet, to my life. As I'm sure, you sometimes feel. Over the years I feel sad that I haven't been able to be more empathetic to my friends, and I try, but sometimes I don't have much left to give to them...yet I try.

    The good thing is that we are innately glass half full people. No matter how hard people try, we just keep bouncing back up on our own free will because we can't help it! We are optimists, (thank God)! It's amazing how we are gifted with that....I'm thankful everyday that my nature is such, and I can tell yours is too. God bless you! Let's get together some time and just play a game or something! Or if you need a meal, I can do that too, (Can't promise English pork pie again, tho!) Take care of yourself and we'll chat soon.

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