We just got a call from the Oncologist’s PA. She said the bloodwork came back fine so everything is functioning. That’s good news but the MRI and Pet-CT is more important.
We’re at the Pet-CT scan place now to see if there is any sign of tumor.
The original Pet-CT order said to measure up to her upper neck but I asked the tech to do her whole head. I wanted a full image for the Doctors.
Satomi is a bit worse today. Yesterday she was fatigued and dizzier. She’s so dizzy she upped her Decadron dose and you all know by now that is our last choice. Our last episode in the ER was due in large part to the Decadron upsetting her stomach.
She’s now on Nexium instead of Prilosac; it’s suppose to be much stronger. She also has the Pepto close at hand. I’ll be watching her closely tonight.
She took her brain MRI last Thursday. The results will determine if she needs more Cyberknife. It would be heartwrenching if she needs more sessions. The radiation induced dizziness has a big effect on her emotional state. It is suppose to be getting better.
Satomi’s gained a lot weight since being on Decadron-something like 25 to 30 lbs over a couple of months. On her 4′ 11″ frame, it’s a drastic change. The Oncologist says that the weight gain is likely due to the Decadron but ordered bloodwork to check if there is any problem with her liver or other internal organs. The weight gain has created other problems for her-elevated HR and blood pressure, difficulty breathing, muscle cramps. These past few weeks have been manageable but definitely haven’t been pleasant. The Oncologist also ordered a Pet-CT scan to check everything; its set for tomorrow afternoon.
The results of these tests will quantify her progress. To be honest, I am quite worried. Her present condition is explainable but I have little confidence in optimistic statistics. Thus far, we have aways gotten the short end of the statistical stick.
Good results are a chance for a normal life-for a while anyway. At least until the next set of tests in a few months.
Living life 3 months at a time is no way to live.
Satomi’s Baachan died last week. She was 99 years old and one tough lady. She was sick for a while so her passing was not a surprise. The funeral is this afternoon in Little Tokyo.
Of course we plan to attend but it’s going to be a long day for Satomi. She had to get to work early for some sort of staff meeting and there’s a Doctors appointment in Irvine late this afternoon. A lot of driving and no rest. If Satomi gets tired, we may forgo the actual burial afterward.
Satomi’s Baachan and the family deserves every respect but I’m afraid that this funeral will be very difficult for me. Death is something I try not to think about.
[Updated 7/01/09 8:00pm]
The funeral wasn’t so bad. It was a nice tribute to Baachan. It was a bit awkward as many distant relatives/friends asked how Satomi was doing. I gave them all the answer “Given her condition, she’s doing quite well…” True but a bit distant to preserve the mood.
I’d say the only time I felt uncomfortable was when I helped Satomi walk out of the room after the service. We were near the middle of the family processional and had to exit via the center aisle. Maybe it was my eyeballs playing tricks but I’d swear everyone was watching Satomi as she passed. I guess she looks a bit different than most of these people know her.
The service lasted until 2:30pm so we couldn’t go to the burial; we went straight to the Oncologist in Irvine.
As you’d expect, Satomi cried at several points in the service. It set the tone for the doctors appointment-she ended up crying there too-but thats for another post.
This dinner in bag thing is a friggin great. All of you that are working with Satomi’s best friend-Irene-are just lifesavers. We’ve only eaten (2) dinner’s like this but it’s a big relief. I don’t have to worry about cooking after a long day.
Thanks so much!
Our daily life is so much more hectic than it has historically been. After dinner and a long day, it’s a huge stress to deal with getting the family together and getting the girls to swim lessons twice a week. On those days, baths and bedtime are delayed as much as an hour and all of you with kids know that a daily routine is important. So we are opting to reduce swim lessons to once a week.
Kandice will miss the extra lesson since she absolutely loves the water. She’s made obvious progress each time she goes. Although we do pay for an actual lesson, Jillian mostly just sits on the step and splashes around. She’s not so comfortable around the teacher or deeper water yet. I doubt if Jillian will even notice the reduction to once a week.
Of course I also like the cost savings but it’s mostly a means to maintain my sanity.
Satomi's Cancer Blog 