The hospital called this evening. I'm supposed to report to the surgical center at 6 a.m. The portable catheter insertion should take, total time, 6 hours. The chemo guys wanted me to trundle across the street to their office afterwards for a chemo treatment, but I'm not sure I'll be up for it. A friend of mine said having both the same day was a giant mistake for her.

So that means the chemo treatment will be Wednesday. I think I'll take my book, my journal, my new deck of playing cards, courtesy of the Aloxi drug company, and my children's book of card games (easy to follow instructions) so I can play solitaire. Estimated treatment time: 2 hours.

Tomorrow evening I'm going to have a photograph taken of me and my hair. Stace suggested it, and I thought for about two seconds and decided I would like one. I'm hoping I feel all right. Wednesday evening Steve and I are having dinner and maybe a concert with Bryan who is flying in that day. And then Thursday at 2:45 is the Official Hair Slash And General Craziness Party. Bethany has been begging me to check her out of school for it; maybe I will. It is an important occasion, after all. My first Mohawk and dye job. If my body doesn't follow the pattern Dr. W told it to after chemo, I'll have to reschedule.

Today I feel like just getting started on the trauma so I can get it over with. I still don't really want to know what it's like, but I'm tired of waiting. I'm as ready as I'll ever be, which is why I'm still up?

To bed!

Happy Birthday to Me!

I am happy that the doctors all agreed to let me have my birthday unmedicated. We went to Steve's favorite cabin in the woods. Time seems to go slowly there; we ate and played games and ate and went for a walk to the beaver pond and waited while Chris caught twelve bugs for his collection, walked back, ate, and then, in a frenzy of activity, packed up and headed home so I could go to the Relief Society meeting. I ran in the house in sweats, and two minutes later ran out of the house in blouse and skirt and Steve drove me to the meeting. I missed the first speaker, but it was lovely being there. I soaked in the feelings and really appreciated Dieter F. Uchtdorf's comments, especially those about how we are treasured daughters of God with infinite worth, and that it is our purpose to seek and experience eternal happiness and joy. So if I can't feel like I'm doing much but lying around feeling sick, at least I know I can create smiles somehow.

I think I'm resigned now to just go through what's happening and do my best to come out of it a nice person still.

Today was teary.

I just don't, don't, don't want to do this!

I don't like the idea of having a portable catheter sticking out of me for three or four months. I don't want evil poisonous drugs flowing through my veins. I don't want to feel yucky. I don't even want to plan what day to feel yucky! I don't want my hair to fall out -- I'm so vain about it. I love it! I love having people tell me how beautiful it is. I love it brushing my elbows when I wear it down. I don't want to feel tired. I don't want other people to feel like playing Visit Miss Scarlett Clue with Reuben when I don't. I don't want to feel too sick to read Harry Potter with Joseph, or to listen to Nathaniel's long narratives about his group's inventions during science class, or to read Sariah's saga about Silky, Milky and Bonquetia, or to help Bethany find fabric scraps for sewing stuffed snakes, or to take Chris up to the bell tower to catch unfortunate moths and katydids having parties on the huge lights. I especially don't want to feel too sick to lie next to Steve and hold his hand while he tinkers on his computer and I read.

Bad cancer! Back! Down, boy! That's chemo talking. But *@%#! I DON'T WANT TO DO IT!

If you don't want sobering news, stop reading now!

Here are the basic points from the appointment with the chemotherapy guy.

1. They want to do a genetic test to determine if I have a couple of defective genes that make cancer recurrences nearly 80%. We are checking on insurance coverage of the test. Possibility of me having the genes is 5% or less.
2. I will have a chemo treatment once every three weeks for 18 weeks. This translates into about 5 months, give or take. Then they will wait three weeks and then my radiation treatments will be Monday through Friday for 6 1/2 weeks. Altogether, approximately 7 months of treatment. They will give me anti-nausea medications as well.
3. They are calling Dr. C, my surgeon, to arrange a time for him to "install" something called a "portacath" so they won't have to hook up an IV for each treatment. They can just hook the tubes up to the portacath. They're hoping to schedule for this week and start chemo next week.
4. The day I receive the chemo drugs is considered day 1. I'll feel fine on days 1 and probably 2. I'll feel like I have the flu on days 3-6. I'll feel very tired on days 7-14. I'll start feeling better on days 15-21. Steve and I need to decide whether it would be better for me to feel yuckiest during the week or on weekends, so we can choose a treatment day.
5. They have no predictions on exactly how this is going to affect me. We will just have to do it and see. They did say to plan on losing my hair, feeling tired, having food and drink taste like cardboard, having a metallic taste in my mouth all the time, having muscle pain and joint tenderness, and possibly loss of appetite and mouth sores.
6. I will need to be very careful about monitoring myself. Any fever/chills mean I immediately go to the emergency room or the doctor's office. Nausea means I call and we try different anti-nausea medications. If I am unable to drink 64 oz. of fluids every day, I have to go to the office to get intravenous fluids. If my skin starts to crack and bleed, I need to go to the office. I need to try to avoid sick people. Lots of luck, with six children and a schoolteacher husband :)
   

The good news is that my insurance will cover nearly 100% of costs associated with treatment, and that having chemotherapy and radiation increases my chances of remission and living cancer-free to 70%.

Thank you all for your prayers and help and phone calls and emails and letters and cards and visits. I love you! We're going to beat this thing!

p.s. extreme locks-for-love hair slashing and general haircutting craziness coming up. expect photos. my only chance to look like Joseph's true mother (with the help of a platinum blonde wig!) and to be a redhead.

Have been all day without the giant Ace bandage around my chest and have felt fine. I went with Nanika to a ballet class, just to see her dance, I guess. It was fun to see her out there. I asked Kathleen a while ago about dance classes, but there aren't any public modern dance classes, really. Dancing is one of the few forms of exercise I really enjoy; others are walking up The Big Quail Valley Hill with Stephen, and using a jumprope.

Maybe I should start dancing again. I'd probably have to start as a beginner, since I haven't danced for 15+ years. How many, exactly? I must have started when I was 7 or 8 and stopped at about 25, which means... [calculations take a while with my current state of mind]... 17 years? Wow.

As I sat there watching, I was amazed at how many terms were familiar to me, and how I could visualize what my body would be doing if I were out there at the barre. I could almost feel it in my muscles. I can't say I was ever a very good dancer, but I enjoyed it and learned a lot. It would be interesting to see if it comes back.

I'm very tempted to sign up: they're sure to have a beginning adult class. I would love to know if I would feel well enough to, but there's no way to know how the chemo will affect me. I think it's the not knowing that gets me.

Yesterday I visited my surgical oncologist and had my drainage tube removed, so I am no longer being assimilated into the Borg hive, ha ha. It felt so good to lie down without that thing being under me. According to the Dr., I will need both chemotherapy and radiation. The rationale behind chemo is that 1) I am young, and 2) there is no guarantee that cancer cells haven't spread farther than the surgery went. If cancer made it to one lymph node, it could have gone farther, and 3) we want to make the best effort to get it all now so we don't have nasty surprises later.

So I have an appointment with the radiation guy on Sept. 19, and one with the chemo guy on Sept. 24. And in between, I wait and plot about who is going to cut my hair.

The sur. onc. was encouraging about how my incision looks and how well I can move my arm around, so my exercising is paying off, I'd say.

I am enjoying reading lots of books and going on walks with friends and not feeling nauseous. I must go eat now, says the clock.

If I get a choice, I will choose the lose-my-hair chemo drugs over the feel-nauseated-all-the-time chemo drugs. And I will chop off my hair and donate it to Locks for Love and then get a Mohawk and take a picture. Then when I'm bald I'll buy a red-head curly wig and a long platinum-blonde wig and some funky hats to wear.