Friday, December 26, 2008

New chemo, and happy solstice!

My darling cuz writes me an email every night, and i save it in case I have insomnia, which is one of the more beastly side effect of cancer and chemo. This started out as a reply to her.

Just in case you wonder, I love love LOVE your emails. They are my saving grace sometimes.

Chemo this morning, and after a TON of dithering, Our dear Dr. L changed the main chemo drug from taxol to paclitaxel NAD. Three cheers for Dr. D in SF who put us on to this. In a nutshell, Taxol and that family of drugs - all from Taxis brevifolia, the pacific yew - are delivered by a toxin. Usually a solvent, doesn't that sound yummy? This is what allows it to penetrate the cell wall. The NAD in the new drug is attached to albumin - it's bound to a lipid, instead of a solvent, and THAT is what allows it to penetrate the cell wall. It's the solvent that usually causes the nerve damage, NOT the the chemo drug itself - so with this drug, I should have much less neuropathy. This is reallio trulio cause for celebration. The last three days I was back to doing the Institutional Shuffle- you know how little old ladies walk in nursling homes? That's because either they can't feel their toes, or that their feet hurt so much that they are trying to put as little pressure on them as possible. Mine is a combo - imagine the worst pins and needles you've ever had from your foot falling asleep - only it's all the time - and worse at night, when you are falling asleep.

Needless to say, having my toes and soles of me feet (and me hands) go numb is NOT conducive to a lot of stuff I like to do - knit. Play guitar, walk run jump in and out of boats...and DANCE. I really, really need the tips of my fingers and toes. So the phrase insurance companies pay attention to is QUALITY OF LIFE. I've dropped this one several times, and it seems to be working.

Another benny is that it only takes half an hour, instead of 2-1/2. I got out of chemo after only three hours! Felt like a kid who'd gotten to go home early after a terrible test!

We spent Xmas eve out at Sam and carolines, after hearing Sam sing in the UU choir. It was wonderful - Kevin seems to be joining the local Episcopalian chorus, and I may do the UU choir, so we can take our pick every Sunday. Sam's singing is pretty wonderful, and he's worked really hard at it. Also saw Cliff and Marion, and David, Jane and Lisa, which was jolly. Marion is mostly not there, with her dementia, and it's heartbreaking. She still sings Christmas carols, though.

We of course ate and drank endlessly, and being two weeks out from chemo I ate EVERYTHING. It was heaven. Cornish game hens for dinner, eggs benedict for breakfast, I cooked lots of veggies, Kevin and Tess cooked desserts. What do you suppose this says about our characters? Still mostly can't eat sugar or acid, altho I admit I did indulge in a few stocking chocolates.

Ms. Santa decided that everyone needed cashmere, so she went around buying cheap sweaters and pashminas. Kevin now claims that I really only love him because he is a giant stuffy that I can wrap in cashmere and snuggle up to. He may not be entirely far wrong.

Tess got knocked off every flight between Sunday and Wednesday - No unaccompanied minors into Seattle, over and over and over. I don't think I've ever changed a plane ticket that many times. In addition, her luggage managed to go to Seattle without her. Bob thankfully went and rescued it, since it had ALL her warm winter clothes and all her favorite clothes. Seattle Airport probably still doesn't know where it is....

So we had her here, which was jolly, and Bob flew in late Xmas night. We all sat around by the fire, and of course I went to sleep on the couch at 8 pm, as usual. I should just plan to sleep from 8 pm to 3 am, that seven hours, right?

All my love! Thank you for the best gift of all, nono - your time.

Wednesday, December 17, 2008

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 -

Friday, December 12, 2008

Short post for Koren

Dear cuz,

We've received the amazing quilts, and both Tess and Kevin immediately wrapped them around their shoulders - how's that for a virtual hug? Thank you, thank you, thank you! I will try to post piccies sometime soon. Need to figure out how to integrate images and art into this blogthing, anyhow.

I'm actually doing really well. Other than chemo, I'm fine. This time so far has been much easier - we have a lot fewer OTHER stressors on our plates, for one thing. The biggest complication is that Tess is now an early adolescent, so we have the sulks and pouty faces thrown in with the emotional reaction to the cancer. I know she needs to get her feelings out, but does it have to be SULK?

The chemo is so far hitting me much less - i have more brains, and more appetite. I've lost a little bit of weight, but most of the week seem to be functioning normally. My continuity is sometimes a bit lacking - i get to work, and go, now what in HELL was I working on yesterday? But perhaps that's just middle age...

Our visit to UCSF for a second opinion was encouraging, and he talked with a fairly long term view. If taxol works, I can continue to use it for a long time, perhaps years. With all the treatments now, a cancer like mine is really looked at as a chronic disease, like diabetes, rather than a death sentence. We talked about a number of other chemo drugs, and stuff is being developed so fast now that there will be new treatments all the time. So try not to worry too much.

In other news, I've been doing this extremely foofoo touchy feely art thing with a group of women called Soul Collage (I kid you not) but having a blast doing it. It's pretty structured - the board are a certain size, and they have this elaborate structure around what the different cards are supposed to symbolize. I don't seem to use them that way at all, I just love MAKING them. And it's straight out of kindergarten - cut pictures you like out of magazines or old calendars, and stick 'em down with rubber cement. The structure eliminates a lot of decisions, so for me it's just pure PLAY - like cutting out paper dolls. I'll try to send you images of a few of mine, and there are quite a lot by others out on the internet if you are interested. Just don't ask me what archetype my card is supposed to symbolize.

I've picked up a couple of weird books about artists and creative process, and I'm itching to mess with collage on a larger scale - it's taken me for damned ever to realize how many unspoken rules I learned about making art, and that I'm allowed to break them. i.e. - collage isn't "serious" art, nor is mixed media. (Can you hear my mother's voice? As you know, lover her to bits, but she did have strong opinions about things...) But I love messing around and mixing things together - text and computer stuff and photographs and paper and everything. I recently saw a show of someone I know peripherally (the husband of the woman who teaches the Soul Collage class), and it was all computer printed photos that he then manipulated, like folding or cutting them and weaving the torn pieces together. and I LOVED it. She is doing a class this spring, and I'm going...just to have a couple of hours set aside for art making.

I'm also in the process of turning our living room into an art studio. A whole table and shelves just for projects, and I don't have to clean it off the dining room table in time for dinner. It frees me up to work at a bigger scale, and be much messier.

Love to all of you!

Saturday, December 06, 2008

Five down, seven to go

Chemo went pretty easily yesterday. I think we've finally found the right cocktail of drugs for most of the symptoms. It's so weird - I have a BOWL full of prescriptions in the bathroom, this for the girl who usually is reluctant to take ibuprofen.

I get tagamet (reduce stomach acid), kytril (antinausea), benadryl (prevent allergic reactions), dexamethazone (a steriod to help reduce inflammation from the taxol) ativan (to make me all happy/stupid - also antinausea, also helps reduce the jitters from the aformentioned steroid), tylenol, and then finally taxol - dripped in over 2 1/2 hours. The whole schmear takes 5 to 6 hours, depending on how easy it is to access the port, and other stuff. I usually sleep after the first hour or so, since the ativan makes it so I can barely walk, I'm so spacey. Just as well.

Then I have oral versions of must of these at home, also psyllium husks and lovely things like that, since it messes with my digestive system at the other end, as well. Kevin is making me fresh juice three times a day, which really helps - gets a little fiber into me, and because it's juice the nutrients are much easier to digest. I've lost somewhere around 6-7 pounds so far just from the chemo - there's days where I eat normally, and days where I want to eat nothing whatsoever. This is usually caused by reflux, where even drinking water give me painful heartburn. I don't remember this side effect from the last time around, but I wonder if it's also contributed to by the tumors along my trachea. Extra bumps right at the lower end of the esophogus.

This quite possibly is TMI.

So last night Tess was off with friends, and Kevin and I get into the hot tub - what bliss! - and then he went off for a beer with our friend Tom. I was sorry to see him go, and yet glad. Last time around I think he didn't take good enough care of himself through the whole treatment, and by the end was horribly run down and exhausted, and suffering from compassion burnout. I think he forgets that if he doesn't take care of himself, ultimately he won't be able to take care of me.

I puttered around the house, not accomplishing anything much, but I've got an art project in my head, and I can't work on it until I clear the decks a little bit. I even (bravely) drank a small glass of champagne. That's the trade off for acid reflux, if I eat other stuff that's really soothing, I can enjoy a glass of wine every once in a while. Probably on top of all the other junk, I had quite a buzz on, but it felt like a HUGE treat.

But back to the puttering. We have a formal living room that we hardly use (so it turns into a big ugly storage space for junk) but I'm slowly trying to turn it into an art studio. Next thing is a big ikea table, right in the middle of the room. yay! I've been doing small collages, and I want to experiment with bigger ones, and more mixed media - both collage and painting. I'm sure the first few will be hideous, but I sort of don't care. If anything is even interesting, I'll post a copy.

I have this fantasy of doing enough work to have a group show at our local art center, all on the subject of cancer and body image. I've got at least three things in mind, but they all would have to work to be the basis of a show. Both wall art and sculpture. Have you seen any of my tit bits? (Knitted...)

A thousand thank yous for all of you who pitched in for the hot tub - I'm sometimes in it three or four times a day, and off and on in the middle of the night, when the insomnia gets really bad. Lately it's been foggy here, and we have these great mysterious nights - very Jane Eyre.

Love to all,