How Do You Hold a Moonbeam in Your Hand?

How do you catch a cloud and pin it down?
How do you find a word that means Maria?
A flibbertijibbet! A will-o'-the wisp! A clown!

Many a thing you know you'd like to tell her
Many a thing she ought to understand
But how do you make her stay
And listen to all you say
How do you keep a wave upon the sand

When I'm with her I'm confused
Out of focus and bemused
And I never know exactly where I am
Unpredictable as weather
She's as flighty as a feather
She's a darling! She's a demon! She's a lamb!

She'd outpester any pest
Drive a hornet from its nest
She could throw a whirling dervish out of whirl
She is gentle! She is wild!
She's a riddle! She's a child!
She's a headache! She's an angel!
She's a girl!

How do you solve a problem like Maria?
How do you catch a cloud and pin it down?
How do you find a word that means Maria?
A flibbertijibbet! A will-o'-the wisp! A clown!

Many a thing you know you'd like to tell her
Many a thing she ought to understand
But how do you make her stay
And listen to all you say
How do you keep a wave upon the sand

Oh, how do you solve a problem like Maria?
How do you hold a moonbeam in your hand?

This song from The Sound of Music describes how I felt today after spending so many hours with Mother. I found myself singing it while dead-heading her flowers this evening.  Dad and I were both ready to scream with irritation at Mother by the time we returned from The James today, in spite of having to face our fears about her cancer and discuss options with the neuro-oncologist, Dr. Cavaliere.  She talked with every breath the whole way over, through most of the meetings with the doctor and counselors and the entire way back.  Literally, every breath she took was a sentence, as though she has a compulsion to tell us everything she's thinking, over and over again. 

When you spend that much time with her, you start to hear the replays, and for Dad that becomes especially irritating, especially when they are fictional and fanciful.  He keeps thinking she should know better and straighten up, and he has not yet gotten to that place of acceptance.  I have somehow accepted who she is now, how she is now, and stopped expecting that she should be the Mother I knew two months ago.  Generally, I can tolerate her chatter, but today, with our nerves so on edge about being back at The James and having to talk with an oncologist, we had a very hard time staying patient with her.  She chattered through the meeting with the doctor and we had to remind her a lot that it was supposed to be a "Quaker Meeting".  At one point she got pretty angry with me when I hushed her, but oh well.  Someone had to do it.

This is what we talked about:

Summarized her history to date:
Diagnosis - Brain Tumor 7/29/2011
Admission at James 7/29/2011
Surgery 8/3/2011
Discharge from James 8/10/2011 to Autumn
Followup at James 8/19/2011, today

Headaches at pain level 3 today, needs Tylenol every day for headaches.

Dr. Cavaliere discontinued her Heparin (injected blood thinners, the ones they put in her stomach, making her look like "Carol the Cheetah" because of her bruising), her Zocor (for long-term control of cholesterol build-up, not worthwhile at this point, not worth the side effects), and Keppra, the anti-seizure medication that they had her on as a preventative measure.  She never had a seizure, so there is no need to continue this.

Standard treatment for this type of tumor is radiation, every day for 6 weeks, Monday through Friday, and chemotherapy given by pill 7 days a week.

Additionally, Dr. Cavaliere offered a drug trial, an experimental test drug targeting the blood vessels that the tumors have built into her brain. This tumor lays down roots to anchor itself and this is why it is so hard to surgically remove.  The study is being done in a lot of organizations and it's a "blind" study, meaning half the people get placebo.  It has been going 7 months so far.  The drug was approved for use in trials in the US only a few months ago.  It's a "molecular inhibitor" which targets VEGF, the stuff those tumor roots are made of.  To be in this clinical trial, she'd need to be resident near The James for the full 6 weeks.

Side effects would be fatigue during the 5th and 6th week, both physically and mentally.  That gets better once treatment ends.

She should expect sunburn on scalp and hair loss from the radiation.

The chemo causes nausea, but that can be well controlled with meds.  Constipation during chemo is very severe, so they watch and treat that aggressively.

There is residual inflammation from her surgery causing her symptoms now (the manic chattiness, fantasizing).
"Hypervigilance" is the doctor's term for her hyper talking and wakefulness.  Dr. Cavaliere is hopeful that much of this will resolve as she heals.  Additionally, he is giving her a drug, Seroquel, at night, that should help calm her and ease the talking mania.  The hyper-mouth-brain problem is caused by the neurotransmitters firing too rapidly, and this drug helps to slow it down to a more normal pace and will help her to rest.

He stated that the goals of their program at The James is "Quality of Life and Being Home", not unnecessary extension of life, with little or no quality of life, so Quality over Quantity.

Treating the tumors will help treat her symptoms.  We could expect to see her mental state improve.

Chris asked him, "If this were your Mother, would you treat her cancer, or not?"  He said he would treat it.  With treatment, her life expectancy would be about 12-18 months, with pretty good quality of life, usually.  Without treatment, average life expectancy would be 3-4 months.  Remember these are statistics and every case is different.  His counselor, Julie, told us that a lot will depend on how her body reacts to the chemo.  Sometimes the bone marrow does not do well and they have to stop the chemo treatments.

She can get her radiation treatments at Southeast Medical center in Cambridge.  They have different brands of machines and technology than The James, but it's not very relevant.  The treatments would be essentially the same at The James or at Southeast Medical center.  It's pretty standardized now.

Mother's tumors probably developed to Grade 4 in the last 3-4 months, only.  It originates in the brain and grows very fast.

Symptoms to watch for and report in the coming months: changes in cognition, changes in gait, decrease in visual-spacial ability (interacting with objects around her successfully), arms and legs weak or uncontrolled, loss of vision.

Treatment will probably start 3-4 weeks from surgery, after she has healed more, and the inflammation resolves.

We talked about the options among ourselves, and were again unanimous that to try the clinical trial would be foolish for Mom.  There's no telling whether it will help, or whether she would even be in the 50% to get the medication. Being experimental, it may do harm, and the travel required to be at The James for 6 weeks is prohibitive for both her and Dad.  She is happy and settled at Autumn, with lots of new friends and neighbors nearby, where the nurses can control her chemo dosage and monitor side effects, and it will be a very short bus ride to Southeast Medical for her radiation treatments.  And she can come home as much as possible, to visit, once she is more oriented to her surroundings and her brain is less fantastical. 

Her physical strength, her aerobic fitness, and her strong heart are to her advantage, and although older people sometimes have less success with the therapies, Mom has a very good chance to beat the statistics.

So, we decided to go with chemo and radiation, at Autumn Healthcare and Southeast Medical Center, not The James.  And no clinical trial.

Treatment would begin 3-4 weeks from her surgery, or somewhere between August 24th and 31st.

But - we have a follow-up appointment with Dr.Cavaliere at The James on September 1st at noon to assess how she is doing on the Seroquel.  She is doing so well, in general, that he would like to let her to participate in her treatment decisions, and he is hopeful that she will be able to by then.  As she was today, she could not do this rationally.  But seeing her active mind so "almost there", as he could today, Dr.Cavaliere wants to give her every opportunity to express her feelings and thoughts about it before it begins.  We do too.