One day I will step out of my body, and burst into bloom...

It has been a really rough couple of weeks. I had the PET scan about 3-1/2 weeks ago, and got the results a week later. I jumped right into treatment again, starting chemotherapy two days after seeing my oncologist.

However, the hard truth is that this cancer is progressing much faster, and in a worse way than Kevin and I had hoped. I only finished my previous round of chemo in June of last year. Since then, I've managed to develop one brain metastasis, and a host of bone mets - spine, one rib, and hip bones.

The physical reaction was pretty awful. The bisphosphinate (Zeloda) can cause a "flu-like reaction", and they weren't kidding. High fever the first day, and lots of aches and pains. The single worst reaction to chemo that I've ever had.

Still, I could handle the physical stuff, I think if it weren't for the emotional baggage. We generally hope for the best, and plan for the worst. This feels to me like the worst. Kevin and I were both hoping it wouldn't progress to the bones, or another organ, (liver or lungs) for a while yet. And bones are nasty. that's when you start having pain to go with everything else. At least up to this point all the pain I've endured was caused by the treatment, not the disease itself.

But sometimes I am in despair. My daughter is twelve. I've hoped, over the last six years, initially to live a normal life span. Then I hoped to make it to 62, to retirement. Then 55 - early retirement? Then, when the cancer returned, I ratcheted it down. Tessie reaching age 18, that's 6 years away. Now I still hope for that, but I wonder about it being even shorter - two more years? Three? It feels truly awful, and haunts my imagination in the middle of the night. And most of the day. Externally, I'm managing to go through the motions - going to work, cooking supper, dancing, hanging out with friends, getting treatment. Inside, I'm curled up under a blanket, and clutching a teddy and crying. I cry in the shower, with my head resting against the cold tiles, and hot water running down my back. I drop Tess off for ballet, and cry in the car once I'm by myself.

Nobody loves chronic. And now I'm learning the difference between chronic and incurable. Or perhaps ultimately fatal, if you want a harder word. Chronic is something that affects you permanently, but to me incurable adds the load that even if you go through treatment, and do everything right, the disease will probably still eventually kill you.

I suspect I will adjust over the next few weeks. I generally feel pretty lucky. I adore my family, I have a good job that provides my health care, I live in a very safe and wonderful place. I just wish that this threat wasn't hanging over me all the time. It starts to feel like I'm carrying a dumpster around on my shoulders - absolutely wearying and exhausting, and no getting away from it.

Fooey.

Love,
grundoon

p.s. Credit to jessica pierce of spidercamp, for the title, originally from www.everything2.com.

This is an interview about chemo and food with me and my darling Tracy, of TracyFood.

While I don’t know a lot about nutrition, I probably know even less about cancer and chemotherapy. However, one of the greatest things I keep learning as I get older is that I don’t need to know everything — I just need to know how to ask people who know stuff I don’t. So, enter the guest post!

My friend Christine does know a thing or two about cancer and chemo both, so after reading Eddie’s message, I wrote some email, asked a bunch of questions, and got more answer than I can fit in one TracyFood entry. Over the next few weeks, I’ll be posting her wisdom in a few installments, and thinking of more questions to ask, in case it turns out we’re serious about writing a book like we keep talking about over instant messages. Here we go…

The rest is at -
http://www.tracyfood.com/2008/12/16/cancerfood-basics/

And then I dropped the ipod in the loo.

So I started the chemo Thursday, and I was fine (tho jittery as all get out) until the last 10 minutes of treatment - then the big wave of nausea crashed. It's the first time that I couldn't sleep during the treatment, but I was wired to the gills, so I listened to music and wiggled the whole six hours. It was pretty awful, actually. Kevin went off to work, and next time I'm going to have friends tag team, so at least I have someone to talk to. Some of the time I was so wiggley I could only listen to half a song. The play list ended up pretty weird - something with a strong beat helped, and I think that banjos and drums affect a different part of the brain than other instruments - so lots of bang-jos and drums. If you want to make me a mix cd, I would be grateful.

I confess I wasn't expecting the chemo to hit me quite this hard, this early. Didn't sleep much on Thursday night, and still jumping out of my skin. I talked to the on-call doc on Friday, and he said it could be a reaction to the steroid (good!) rather than the chemo drugs themselves. This is hopeful, because I can probably cut out the steroid - can't very well cut out the chemo drugs themselves.

I did muster up the energy to take Tess out halloween shopping on Friday. They had a teacher service day (PT conferences next week) so they got Halloween off. How cool is that? So we went to Ross Dress for Less, which I've decided is my new favorite Halloween store. Tess went as an evil rock star - with this fabulous glitzy tango dress - and her first real pair of high heels. She's right on that magic edge between kid and teenager, and has wonderful qualities of both - not to mention that when she and Georgia and all the rest are sixteen they are going to stop traffic. Are these kids unusually beautiful, or am I biased?

I didn't actually really drop the ipod in the loo, I just came close. I was listening to music on the ipod; IV in my arm. Sometimes switching to the laptop for a different music mix - Kevin uses the ipod more, so it's mostly his music; and a BP cuff on the OTHER arm because they were monitoring a problem with one of the drugs. So in order to go the restroom, it was a fairly big ordeal. Remove the BP cuff, unwrap the blankets, get my shoes back on, disconnect from the computer, unplug the chemo pump, and then wheel it across the room. I just put the ipod on top of the pump, rather than spending more time untangling yet another wire. And sure enough, when I got into the restroom, the little bugger tried HARD to leap into the toilet. I caught it, thank goodness.