The MRI results show that the original tumor is notably smaller and no new tumors have been found. He reiterated the good results from the Pet-CT scan of her head and chest. No additional Cyberknife sessions are necessary at this time. The Doctor performed a neurological test and Satomi passed just fine.
That’s the best news we’ve had in a long time.
Ironically, Satomi’s dizziness and fatigue has worsened and is debilitating. She gets headaches and her eyesight has degraded. The doctors says it’s due to the brain aggravation from the original operation and the Cyberknife. The Decadron is a necessary evil until it all passes. Satomi needs to be patient; It wasn’t that long ago that she had a major brain operation. She is going to try another type of medication so we’ll see how it goes. Hopefully we can taper off of the Decadron as soon as possible.
We’re scheduled for a new set of MRI’s in 3 months. Now it’s all about getting through the symptoms.
Today was a good day.
Life continues and I’m tired-The daily grind is tough.
So I’ve been optimizing our life’s logistics. I’m doing all this because I have the luxury of not having to cook dinner; This won’t go on forever so I’m planning to cook too. Don’t be scared-I know my way around a kitchen. This is all a time management thing. I’m not sure how I’ll maintain dinner at 5 pm. I may have to do the cook-the-evening-before thing. I’m still experimenting.
This past Monday night, I actually cut coupons and went grocery shopping. I’ve never done that before. It was actually fun to save the extra $4.75 but an inefficient use of my time. I think I was at the store an extra hour just looking for all this discounted coupon stuff. It’s been a long time since I made $4.75 and hour. I really need to organize the coupons to match my route through the store; A bit contradictory to our new time-efficient life.
My most stressful times of the day are focused around Jllian’s sleep schedule.
Getting our dear Jillian up and dressed is not easy. She’s definitely not a morning person. With my clothes organizational system, the actual clothes selection and dressing can be done in just a few minutes but that assumes Jillians cooperation. I try to be patient and thus far, haven’t gotten angry. But her “…No, No, No, No, No, No…” yelling in the morning can be a bit much on my nerves. I like to start my day emotionally slowly-it’s always been my quiet time. Now I jump right into the stress. By the time I get to work, I’m already worked up.
In the evening, Jillian is very picky about her sleeping arrangements. She ususally wants to sleep with Grandpa and recently, Mommy. Daddy is not an option if anyone else is around. Jillian needs someone to lie with her until she falls asleep. Only then can they leave the room. The Grandpa option is ending soon as he will be leaving in just over a week to be with my Sister’s new babies up north. Hopefully Satomi is feeling up to it. If not, Jillian will go to bed upset until she get’s used to the idea of sleeping alone. That is our ultimate goal and, to be honest, I think quite achievable with a bit of tough love. The idea of tough love with a 3-year old doesn’t seem really appropriate but I’m not sure what other options we have. Admittedly, my energy level wanes about 1/2 and hour before the girls go to bed so I am not the most patient parent.
I did some online research and read an article about getting kids ready in the morning. One of the suggestions was to bring down one kid at a time, get them ready, and then get the other one. I tried it this morning. I brought Kandice down at 6:30 am, dressed her and got breakfast together. It went quite well. I went upstairs to get Jillian at 6:45am. She was as grumpy as normal but at least I could focus my efforts on her. Dressing went quicker and I had her together before 7:00 but there was a problem-She was obviously upset. The morning routine went so quick that Jillian didn’t have time to really wake up. Maybe she’s like me and needs quiet time in the morning. On other days, I get all this done by 7:15. Those extra 15 minutes make a big difference in the mood of a groggy 3 year old.
I’m working this problem and will eventually solve the Jillian quandry. I have other ideas.
My Sister finally gave birth to her twins early Tuesday morning via C-section.
Zoe Lin Zelinka (5 lbs)
Alyssa Robin Zelinka (6 lbs)
Mother and babies are doing fine and should be home any day now.
We got a call from our Oncologists office yesterday. The Pet-CT scan test results from Monday were in.
There was no evidence of new cancer in her body-That’s good news. That also means that Satomi’s weight gain is due to the Decadron. Hopefully she can get off of the drug soon.
The doctor also said that the brain tumor had signs of healing. Since it isn’t her area of expertise, we took the comment with a grain of salt. A detailed review of the tumor has to wait until our Neurosurgeon appointment next week. That’s where we will find out if more Cyberknife is needed.
Everyone keep your fingers crossed!
It’s Monday morning and I’m tired moreso now than before the long weekend.
The girls are tired from the weekend activities-play, play, play, and no naps. We work hard at getting them to bed at the same time (8:00pm) whatever day it is but that’s not always possible. Our girls, and especially little Jillian, need a couple of hours of naptime or it’s growling grumpy bear in the morning.
This long weekend was mostly one of preparation and organization. Reviewing things to make them efficient or just plain simplier. I get to apply my logistical and managerial skills on my own life. For the first time in a long time, I know what’s in the freezer and where my junk mail is stacked. I guess most people already know this sort of thing but I never really had to-big piles were my filing system. I didn’t do the weekly shopping so why did I need to know what we had?
The living room, family room, and stairs are vacuumed and the kitchen floor is scrubbed. The dirty walls (pesky dirty little hand prints) are clean and any oily residue on the kitchen cabinets and backsplash have been dissolved away. The stove has been soaked in degreaser and scrubbed. The vent hood has been cleaned inside and out (Who does that?).
I think it is entirely likely that I will eventually hire a cleaning service to do this on a regular basis. I wanted to do it beforehand for a better appreciation of the work before I have to talk price. (An hour to scrub the floor-What? Yes, easily an hour to do a good job on that nasty greasy Cheerios covered, underlining of life.)
The girls clothes are completely re-organized and optimized for speed. I pulled the long-sleeve winter clothes and sorted Jillian’s clothes from Kandi’s. Underwear in the front of the pants. Socks in front of the shirts. Big labels on the front of each of the clear-front drawers. I would have lubricated the drawer tracks if I thought it wouldn’t dirty the floor.
On the wall next to the kitchen door is a color-coded calendar of daily school events with special notations for water play, sack lunch or special clothes. This one is invaluable since every day is fr*ckin different-No, I’m not mad-just surprised. Call me stupid but I thought summer pre-school would still be SCHOOL. Nope, I’m completely wrong-It’s summer camp. The sign on the wall now says “Childtime Summercamp”. When did that happen? Field trips, water play, arts & crafts-My kids just love it. Being a kid is pretty good. Sorry, I digress.
My goal in all this is to optimize the logistics of our lives. That way, when the crap hits the fan, the impacts to the rest of life is minimized.
Satomi's Cancer Blog 