Archive for March, 2007

I went to see my med onc on Monday and got his thoughts for complementary therapies that might work for me. Stuff like Avemar (sold as AvĂ© in the US) which is this wheat germ extract that helps your immune system and might have anti-metastatic properties (at least it does in animals) and tastes to me like Tang with wheat bran (or that fiber drink Citrucel). I’m not sure if I’ll be able to drink this every day, partly because, yuck, and partly because of the requirements, 1 hour before or after meals and 2 hours before or after supplements (which I take at meals) not to mention it’s pretty expensive (as most these complementary therapy things are and insurance doesn’t cover anything). So finding that special moment to drink the stuff when one actually has a life is a royal PITA. So, I’ll drink it when I can and not sweat it. I bought a month’s supply and will decide whether to keep doing it when it runs low.

Another recommendation is TM (Tetrathiomolybdate) which is a drug used to reduce copper levels in the body. They lower it to abnormally but safe low levels and then maintain that level (monitored by blood work, I think weekly). Less copper is supposed to inhibit tumor growth and there have been clinical trials going on, but it’s definitely experimental and not in the mainstream realm. The drug company will supply the drug for free, however it has to go to a compound pharmacy where the cost to capsule it is very high (again, not covered by insurance as it’s experimental). Since A. is still unemployed and our health insurance (COBRA) is extremely expensive, I have to really think about whether we want to dip further into our savings for this or not. I do have a friend who had metastatic endometrial cancer that used it and it shrunk her tumors enough that she was able to have what was left surgically removed and she’s been free of cancer for 4 years now. My Integrative MD seems to think it’s reasonable to use this therapy as a preventative in my case, however there is really no way to know how long to use it (he suggested reevaluating after a year) or whether it is working or not (except if the cancer comes back, similar to the issues of doing preventative chemo).

I find it very hard to decide what complementary therapies I want to use. I do the research, but even so, it often comes down to how easy it is to integrate into my daily life and how much it costs.

Speaking of complementary therapies, I signed on to participate in a research study by the Integrative Medicine dept. of my hospital for women with cancer to learn skills for living better with the stress of cancer. I don’t know yet what exactly I’ll be doing, but do know that I’ll be in the experimental group. It’s supposed to start next week and run for 8 weeks. I figured it couldn’t hurt and might help a lot.


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Bloomin’ orchids

I figured out how to make my orchids bloom (see previous post below). You buy a new one at BJ’s for $15.99 :-))

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I saw my med onc today (my dr., the one who treated me for my original endo cancer, not the 2nd opinion med onc I saw in February). I had seen him a few weeks back in the halls of the hospital and had a quick conversation with him that led me to think that he had plans for more treatment for me. Thankfully that was not the case, he said he just didn’t want to discuss it in the hallway and that he thought that further treatment at this point was not needed. We also talked about the whole hormonal therapy thing (my tumors were progesterone receptive) and he said maybe if my tumors were estrogen receptive there might be some point in it, but with just progesterone receptive he wouldn’t recommend anything (like tamoxifen, megace or arimidex). So, basically there is nothing to do but wait and see. He said maybe I’ll be lucky and this will be it and it won’t recur. While I know that’s the unlikely scenario, it’s the scenario I am going to go with. Call it wishful thinking, positive attitude, or plain old denial, but I really have to go on with the thought that it’s not going to come back. Otherwise it’s too hard, it feels like a ticking time bomb, will it go off soon, or years down the road? I don’t really want to live my life that way. So, I’m going to go back to my previous thinking that I have had with both my vulvar cancer and the original endo cancer which is, it’s not coming back and if it does I’ll deal with it then. No sense wasting time worrying. It’s not that I don’t ever worry about things, of course I do, but it’s really pretty limited now, I try my best to let go of things. Like today, when I was leaving the parking garage after my appt. I was stopped in the street waiting for this construction van to back up into a parking area and the guy hit my front bumper as he did this. I got out of the car, looked at the scrapes and said “whatever”, he said “I’m sorry” and I just got back in my car and drove off. Who cares? Life’s too short!

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1000 Paper Cranes

I have never met Jill (although hope to this coming summer on a trip to the Southwest) but we’ve known each other for years now through an online mom’s group we both participate in. Our list got together when we were pregnant (all the pregnant moms were due in Sept of 1997, although a few of our babies decided to come a bit early, Z. in June and Jill’s twins in August). Most of us have stayed together ever since and this online community of mom’s have become my good friends and some of my greatest support over the years.

Today I received a big FedEx box from Jill filled with 1000 paper cranes that she folded herself (and that her daughter personally kissed). I will be hanging them up and making a wish (can you guess what my wish might be?) I feel so blessed to have friends like Jill who are sending me their good thoughts and prayers. Many thanks to Jill and to all of you.

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This morning it really hit me that I’m done with radiation. I got up a half hour later than I would normally get up on a rad day and while I was showering and getting dressed I kept thinking I had to go to rad and remembering that I didn’t have to go to rad. Then I would feel this wash of relief and lightness. At least I got to enjoy this feeling for one morning, tomorrow morning I have to go back downtown to see the med onc, the prospect of which is causing me some anxiety (okay, more than some). I’m nervous about what he is going to propose I do next. I really don’t want to do chemo :-(( Well, this afternoon I have Open Studio so maybe I can put my anxiety into some artwork.

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Outdoor School

My friend Miriam over at her everydaymomblog was writing about our two daughter’s 2 night trip to Outdoor School with their school class this week. I know exactly what she means about the lack of that ticking down effect when you don’t have to go pick up your child from school each afternoon. This was made even more poignant for me as the 2nd day she was away was my first day of not having to run downtown for radiation. A. and I really enjoyed our time together (since he’s still out of work I convinced him to take some time off from his job search and come play with me). We went out to dinner twice and out to lunch once, got a tour from the head of Z.’s school of an old run down building they’ve acquired for future administrative offices along with a nice chat with him afterwards and did some investigational shopping over at Ikea (we’re getting ideas) without our talkative child interrupting our thoughts and conversation every 30 seconds. On the other hand, like Miriam, I missed her a lot! Z.’s been away from home numerous times before, with family or a sleepover at a friend, but this is the first school trip. I knew she was having an absolutely fabulous time so had no worries, well except for a passing concern over whether she would wear the cold weather clothes I packed her on the cold day and the warm weather clothes on the warm day (as I suspected she got it backwards), but decided that if she were too hot or cold she’d work it out herself and dismissed it pretty quickly.

A. picked her up from school early, when they returned to school from the trip, rather than waiting another hour and a half for school to let out. It was sleeting outside so we figured that might only get worse and also that she might be ready to come home and relax (and see Calvin the cat). A. got an earful about the trip on the car ride home so by the time she got home to me she wasn’t so interested in talking about it, preferring to play with the cat and hang out in her playroom (where at dinnertime we found her napping). Later that evening though the two of us sat down together and she regaled me with stories about the trip, acting out all the skits that were performed by the other kids (she said she was beading a gecko when they were putting the skits together) and telling me all the food they ate (she even tried a new food, bacon), the physical challenges (like the 11 foot wall they had to scale, they made a human ladder), who was in the bunk below her, etc. and how one of the two very pregnant teachers wasn’t there because she was having her baby instead. I’m so glad that she had such a great time (and she gets to do it again next year as the 3rd and 4th grade do this together each year).

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They spelled my name wrong (doesn’t everybody?) but that’s okay, I’m done!!

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