We met with the Endocrinologist. He has been handling Satomi’s thyroid condition for several years so we are quite happy with him. We discussed all of the pending problems and gave him a detailed history of her cancer treatment. We came up with a new plan:
- 2 x 3 mg per day for 5 days
- 2 x 2 mg per day for 5 days
- 2 x 1 mg per day for 7 days
- 1 mg + 0.5 mg per day for 7 days
- 0.75 mg + 0.5 mg per day for 10 days
- and so on…
You can see that not only are we reducing her daily dosage but the duration of each dose also increases. Hopefully this would help stimulate her own glands to return to normal function.
We were also to monitor her blood sugar and blood pressure daily. I do not have a good understanding of the mechanism but her blood sugar had to be in the 70 to 120 mg/dL range after she awoke in the morning. Anything over about 90 mg/dL in the morning is considered high for healthy adults.
Blood pressure also had to be approximately normal and consistent. The women in her family typically suffer from low-blood pressure (100/60) so anything not blatantly high or low would be acceptable.
If Satomi did not tolerate a reduction step well, I was to slightly increase the Decadron dosage and maintain for a few days until the next reduction step.
This is exactly what happened on the 2nd step-Satomi was unusually dizzy and fatigued.
Instead of a 2 x 2 mg daily dose, I upped it to a 2 x 2 1/2 mg dose. Satomi felt better and we continued with the schedule.
Our goal is zero mg per day.
Satomi’s body has been suffering under all of the extra weight. The pain is primarily in her lower back but at times extends to the upper back too. It was heart-wrenching to hear her moan in pain whenever she moved. It hurt so bad she couldn’t get in or out of bed without assistance.
Since starting her vestibular rehab, it got worse. The added physical activity while quite minimal by normal adult standards, was very hard on her battered body.
While at our Oncologist, the pain was quite obvious so the doctor perscribed Darvocet, a mid-level pain-killer. It made a world of difference and Satomi actually became semi-functional again. She could move around without pain and could sleep peacefully.
But it is a narcotic.
After the Decadron mess, the last think she needed was for her body to become dependant upon a pain-killer. I told her only to take it before and after a strenuous day (theraphy, walking long distances, etc.) but not on a regular basis.
We completely disagreed on this point.
Satomi wanted to take it on a regular basis-She didn’t want to be in pain everyday. I really wasn’t trying to be an ass but I mentally drew a misguided parallel between the Decadron and the Darvocet. We argued about it every couple days. There was one instance that she took the drug against my wishes-I got mad and hid the bottle.
A couple of weeks passed and we had another appointment with our Oncologist. Satomi told the doctor about our argument and we all discussed it in detail. After letting us all vent, the doctor gave me a peculiar look and said:
“It’s a quality of life thing. Let Satomi take the pain killers…”
It was that look that made me understand. Who’s to say what the future will bring. In the mean time, there is no reason to suffer in pain. I got it.
Satomi now takes 2 or 3 doses a day every day. It has allowed her to be relatively active with her physical therapy and the occassional walk.
Many years ago, while still at University, I selfishly decided not to attend my Uncle’s funeral. Simply put, I would rather have spent time with my girlfriend at the time than pay respects to my Father’s brother and his family. My decision was foolish and I was filled with regret. The family needed my support and I did not even show up. I vowed never to miss another family funeral.
My Aunty Yachan’s funeral was set for Friday September 4th in Honolulu. I started plans to make the flight and attend.
A couple days later, I was told that Mr. Enomoto’s funeral was also on Friday September 4th in Little Tokyo. I stopped making plans.
Satomi’s family was tied up in funeral arrangements and just didn’t have the time or energy to watch Satomi and the girls. I’m sure they would have agreed but I just couldn’t bring myself to ask. Everyone was just so torn up.
Long story short, I did not attend my Aunty’s funeral.
It was the right choice but I’m still not happy about it.
As you all know, we hate Decadron. Dealing with this steroid has been more difficult than the actual cancer itself.
We have been looking for help for quite some time to properly and safely ween Satomi off of this poison. We started the weening process with Satomi’s Neurologist friend several weeks ago.
After reviewing her new symptoms, the doctor expressed his concerns: the 16 mg Decadron dose on alternating days could have contributed to her heart beat and breathing problems. It seemed that her body’s dependance on the drug was more severe than originally anticipated. The program would be much more complicated. He recommended that our Endocrinologist take over the weening process.
To provide a stable starting point, we returned to the 2 x 4 mg per day regimine from mid August.
After getting Satomi home after a physically and emotionally draining few days, we were trying to unwind and regain our composure when my Dad called. He calmly told me that his older sister, my Aunty, had died in her sleep the night before. I knew that she had been battling advanced lung cancer for some time but had heard through the family grapevine that things were going well and she had been in remission. Apparently she had been talking about a family vacation as recently as the night before her passing. Everyone in my family was shocked but I was just numb.
My Aunty Yachan, as I knew her growing up in Honolulu, was a real sweety. She was a teacher for many years and lived in a nice house in Manoa Valley right next to the big Chinese grave yard. When I first saw the movie “Poltergeist”, all I thought about was her and that house. I guess the idea of a legion of Chinese zombies just never phased her. As I got older I came to think it was because of her strong Faith in God.
I was lucky enough to see my Aunty at my Grandma’s funeral back in August of 2008. We didn’t spend a lot of time together but I remember giving her a big hug. With the distance and Satomi’s illness, I just don’t have much oppurtunity to visit family and friends back there in Hawaii.
She is survived by her 2 daughters-my cousins Carrie and Cindy-and her husband, my Uncle Eddie.
Satomi's Cancer Blog 