07-30-2006 - 06:05 am

I have been reading voraciously. I received two GREAT books written by an oncologist on everything you'd ever want to know on brain tumors. Read a book by a cancer activist. Am subscribed to an email list for brain tumor folks. I think I just went into shock for a few months, but now feel like I am ready to sort through info and come up with a general plan for treatment when an MRI shows things aren't going well. Feeling empowered.

Two more days of radiation and one week more of chemo to go. I had my last meeting with the oncologist and radiologist on Friday until the MRI on Sept 1 to see if the treatment has stopped the tumor. It almost felt like that last RE's visit. The one that you felt panicked because he 'cut you loose' and you weren't going to get an OB appointment for another 8 weeks and you're not sure who designed such a stupid system. After all the work and worry and sweat, it is hard to just be let go with the 'have a nice month off!' comment. I've been hearing a clicking in my head (sort of like when a sinus cavity is changing pressure) and was terrified it was the tumor coming back. Dr assured me it is normal and I'd probably hear it the rest of my life. That's ok. I found a homeopathic 'cure' written up in a neurology journal that also referenced research done at MD Anderson. Ran that by the oncologist and he kindly noted that it was bogus and the guys at MDA were probably pretty torqued about the reference. I felt rather sheepish...I try VERY hard not to waste my doctors' time with useless questions. I did however gain another level of respect for my oncologist. When I brought up the remedy name, he IMMEDIATELY Googled it, read the article, then mentioned how they had cleverly used words to make the claim sound better. No poo-pooing me or just ignoring me. I was very impressed. Of course, I will follow up the claims on my part, albiet with a bit more skepticism...

After the appt, I went to the natural foods store and bought $169 of organic produce. Yeah, I know it won't cure anything, but it sure makes me psychologically feel better! Went to bed early Friday night...kids have been great the past two nights when I've been getting them to bed. DH has gone back to work, so I am back on full mom duty. Looking forward to getting a bit more energy back next week to handle that.

Saturday, I woke up and felt pretty energized. Managed to feed kids, do 2 loads of laundry and clean the downstairs before DH woke up. We even trimmed and painted nails and put up hair too! Because the natural foods store trip was so prohibitively expensive, I decided to reclaim my raised beds that went out of control when I had my surgery in May. I found the deer had been eating the tops of my tomato plants. We will be putting up fencing on Sunday. I have some carrots that survived and we will be enjoying those. Pulled all my broccoli and lettuce plants that had gone to seed. Spent three hours pulling weeds and pulling weeds and pulling weeds. I still have two more beds to clear (of 7), but feel like I can actually go get some late summer crops (squash and peppers) and start planning my fall crops. After garden duty (dh was keeping the kids busy by giving them lawn mower rides), the kids and I attacked the van while dh worked on home repairs. We vaccumed and shampooed the carpets and I washed down all the carseats and plastic surfaces. EEEUUUWWWW. Then we herded the kids onto the front porch for grilling bison and mixed veggies. Dessert was yogurt. All of it was organic. Yum.

It felt good to get so much done, especially in one day. I was tired and crashed at 9:20, but the kids crashed at 9:15, so it was ok. I realized that we had been leaving the house all weekend for the past few weekends and that meant we were neglecting the homestead. I don't know if we felt we had to leave to enjoy ourselves? I do know when I am tired, it 'feels' like planning things or making decisions is like trying to swim laps in a jello ocean. Even the smallest decision feels like a HUGE effort. Since I am the planner in the family, if I am too tired to plan, we do the easiest thing requiring the least effort. Regardless of the reason, I felt like the 'old' me was back and enjoyed every minute. The kids were really relaxed and surprisingly helped out a lot. We were very productive and yet had loads of time for hugs and kisses. We enjoyed a whole day of each other's company at home. A home that looked a lot better after we spent some time there... Tomorrow I might even tackle painting the front porch step risers and railing. Then on to planting. Or not .

Lauren has been asking questions about my hospitalization in May. She's also been asking me why my hair is falling out. I'm taking the opportunity to introduce the concept of what doctors and hospitals are and how some medicines can make funny things happen to you while helping you get better. I've also incorportated some ideas like it is called a tumor; no one knows why it happened; it is random; no one (like her) caused it; the doctors are doing what they can to make me feel better; yes I do feel better; I missed her while I was in the hospital; wheelchairs are used because some people can't walk very well when they are sick. I also told her she can ask questions any time she wants to and she seemed to lose interest at that point. I backed away from the whole subject and hope that she will ask again as she can identify what her concerns are.