I took Satomi to see her Neurolgist friend yesterday. He took a complete history and reviewed te MRI from early July in detail. It was quite informative.
He confirmed that the tumor had signs of shrinking which agreeed with the Neurosurgeon and Oncologist opinions. He also noted that the MRI showed only some relatively minor of edema (swelling)-This was a surprise. We had though all this time that swelling was the primary cause of Satomi’s dizziness. The culprit seems to be scar tissue around the tumor area. The scar tissue is basically dead tumor and surrounding brain cells. This tissue is slowly removed over time by being re-absorbed in the body via the macrophage system. Based on the small amount of swelling, the overall effectiveness of the Dechadron would be minimal. That explains a lot but doesn’t help Satomi in the short term. She is going to be dizzy for what could be a long time. No one can say for sure but the macrophage system is vey slow so it could be many weeks or months before the scar tissue shrinks. We’ll have to see how it progresses.
Now Satomi’s goal is to get off the Decadron. That’s not so easy. Decadron supresses adrenal and pituitary function so the dosage must be reduced over a relatively long period of time. According to the Neurologist, aggresive dosage reduction may also have unexpected Neurological effects. I didn’t ask him to expand upon “neurological effects” but it doesn’ sound good. On her own Satomi had reduced her Decadron from 12 mg daily to 8mg daily. The Neurologist agreed and instructed us to maintain the present dose for a week. The following (2) weeks would maintain the dosage level but skip a day between dosages (i.e. Instead of 8mg daily for 2 days, she is to take 16mg on day #1 and none on day #2). That seemed a bit weird but I would ask our Radiation Oncologist about it for clarification.
For these past 2 weeks, Satomi has been almost continuously fatigued and dizzy. The diuretics helped with some swelling in her right hand and foot but didn’t make much difference in her weight. The diuretic did make a distinct change in Satomi’s blood pressure-Now it’s just about normal even when she’s exerting herself.
Her emotional state changes but is mostly good. Now that she has a plan, she’s moving forward and that seems to give her strength.
Satomi had a revelation about life and decided to take charge of her recovery. I was pleasantly surprised by her newfound positivity and drive.
She walked up and down the stairs 3 times that afternoon. It was very painful and she needed my help but it was good to see.
We all need to keep this up.
Satomi is in a terrible state of mind and is barely holding it together. She’s very frustrated and wants help. I was surprised by this episode. Just a couple days before she seemed fine. Maybe it’s the Decadron. From what I’ve read, emotional instability is not so uncommon. I asked about our original plan to see her Neurologist friend and have him monitor her medications.
She was determined to be admitted into the hospital-actually her hospital. She had the idea that being admitted to Tustin Rehab would be a huge help to her situation-a few days of round-the-clock care, Neurologist visits, therapy visits, everything that she needed to get better. Satomi contacted some of her friends there and they started the ball rolling.
I was skeptical and a bit hurt by the situation.
Mistakenly I used my brain to analyze the situation. I asked her what she hoped to gain from a few days of care. She may get tests done quicker and in-patient help but what change could be facilitated in 72 hours? The practical answer is “not much”. I told her that the insurance company would not pay for a glorified hotel stay and we couldn’t afford to pay for it out of pocket. She said the employee discounted cost for the bed was $900 per day. I said that was way too cheap for a hospital and likely didn’t include all those other things she needed (Neurologist visits, therapy, tests, drugs, water, food, air, sunlight, etc.) She said that she had already planned to pay if the insurance rejected it or she wanted to go to the Emergency Room.
I had to really resist getting angry. She was losing it. She was going to hear back about the admission later that day so I shelved the discussion.
I sat in my office and thought about it for a few hours. While my original view remains true, I was stupid not to see the advantage beforehand. Satomi receiving care there would really help her state of mind. The money was a huge concern but maybe this was just something she needed to do. I told her a few days would be OK. She waited for news from her friends at the hospital. She seemed to take a lot of comfort in knowing that her friends were on it.
It took a few days but we later found out that our insurance refused to aprove admitting her. Accordig to the nice rejection letter we got, she was an excellant candidate for out-patient care. Lucky for all of us that she was in a better mood when the news came in. She eventually calmed down and considered the hospital stay unnecessary. Her emotional state is back near normal now but I was quite scared.
It’s hard enough for me not to lose it.
It’s been over 2 weeks since getting the good news about the MRI and the Pet/CT scan. You would think things would have gotten better.
Satomi’s dizziness has been terrible. A few days before our appointment on Tuesday 7/14, the dizziness had gotten worse and per the Neurosurgeon’s and Radiation Oncologist instruction, we increased the Decadron dosage. Before the increase Satomi’s daily dose wa 4mg; afterward, we were back up to 12mg per day which is about the same as the post-operation dose. And to top things off, the improvement to her dizziness has only been minimal.
On several occassions since then, we have tried to reduce her daily dosage. It has been an impossible task. Any reduction causes her to become very dizzy. While at the previous appointment, the Neurosurgeon presented it to us very plainly: If the dizziness get’s worse, take more Decadron. If it’s the same or get’s better, take less.
As an engineer, “more dizzy=more drug” relationship was exactly what I needed. Unfortunately, the amount of drug needed to make any sort of difference was disproportionately large while the smallest reduction resulted in huge dizziness. How does that make sense? It doesn’t-at least to me. I acknowledge the fact that this brain/Decadron thing is a bit more complicated than my equation. We’ve come to the conclusion that we needed knowledgable outside help with Sat’s medication management. We saw her Oncologist on Tuesday (7/29).
The side effects of the Decadron have been very hard on Satomi’s body. She gained more weight and is now about 180lbs or 35 to 40lbs more than normal; it’s only been a few months. Our inital thoughts were that it was mostly a collection of fluid in her abdominal cavity but the CT scan didn’t support that. It seems to be fluid/fat throughout her body.
Most of her recent ailments are due to the extra weight. She has difficulty breathing, her at-rest heart rate is elevated, her blood pressure is high, her muscles are weak and they fatigue easily, her back and ribs hurt, her skin is stretched like a balloon, and she get’s muscle cramps. There is more but you all get the idea. She is far from comfortable and far from happy.
After discussing all of this, the Oncologist recommended we hold the oral chemo for a month. There is some chance that the chemo drugs may be aggravating the Decadron effectiveness. Since Satomi’s MRI and Pet/CT scans were clean the Oncologist didn’t consider this delay to be overly threatening. I agreed but am adamant that the hold only be for the 30-days. During that time, we are to make any and all efforts to reduce Satomi’s Decadron dosage. The Oncologist also perscribed a diuretic in an attempt to remove some of the liquid in Satomi’s tissue. I am not overly optimistic that the diuretic will make any change but it won’t hurt to try it.
The Oncologist also gave us a referral to a Neurologist. Her thoughts are that the Neurologist is better equipped to deal with the Decadron/dizziness problem. We tend to agree with that-Satomi has a Neurologist friend that has informally counciled her on her condition on several occassions. Now Satomi is going to become his patient officially.
The primary problem is that the Decadron stimulates appetite. Since Satomi is so dizzy that she spends most of her time in bed, the increased food intake has no where to be burned off. That’s an impossible situation to be in.
Seeing all of the side effects, it’s hard to fathom the need of such a drug but I am being short-sighted; without Decadron, all indications are that wifey wouldn’t be here now. But, I should have taken the hint when damn near every Doctor refered to Decadron as a necessary evil, although in not so many words.
We just started this no chemo regime last night so we’ll have to see what happens.
My Dad, the girls’ Grandpa, left early yesterday (Sunday) morning. He drove up to San Jose to be with my Sister and her new twins. My Mom, the girls’ Granny, is already there helping them out. I know it was very difficult for him.
The girls missed him immediately. On several occassions throughout the day, Jillian asked me “where’s Grandpa” in a soft whisper. She doesn’t say anything in a soft whisper. In our house, loud is the only way anything is said. She knew Grandpa was gone. If not she would have just screamed out “Grandpa! Grandpa! Grandpa!” as she’s become so accustomed to.
Putting Jillian to bed late last night involved a few tears but eventually worked out fine. She was very tired from a long day of fun and activity. Both Kandi and Jill decided to sleep in their own bed. They decided Grandpa’s room was too dark and scary without Grandpa there to sleep with them.
Satomi's Cancer Blog 