Thursday, February 2, 2012

Our Cancer Journey - Week 7

Tomorrow we begin the third cycle of Cytoxan/Adriamycin.   In the journey thus far, Kathy has had good days and bad days.   High energy and low energy days.    Meal days and BRAT (Bananas, Rice, Apples, Toast) days.    We frequently discuss the factors that put Kathy at risk for cancer at this point in her life.   We talk a lot about the future.

Kathy's typical pattern is

Friday - Chemotherapy infusion day, good energy, good appetite, some jitters from the steroids
Saturday - Good energy, good appetite, some jitters from the steroids
Sunday - Waning energy, moderate appetite, bone pain
Monday - No energy, moderate appetite, extra sleep needed, bone pain, bland diet
Tuesday - Low energy, extra sleep needed, bone pain, bland diet
Wednesday - Low energy, bland diet, extra rest needed
Thursday - Moderate energy, bland diet
Friday - Moderate energy, stomach pain, bland diet
Saturday - Moderate energy, stomach pain, bland diet
Sunday - Moderate energy, stomach pain, bland diet
Monday - Good energy, moderate appetite
Tuesday - Good energy, good appetite
Wednesday - Good energy, good appetite
Thursday  - Good energy, good appetite

What environmental risks caused the cancer at this point in her life?  Exposure to the cadmium and other heavy metal pigments in her traditional oil paints? Pesticides in the environment? Bisphenol in cans? Free radicals?

We've talked about psychoneuroimmunology, the impact of mood and outlook on the ability to combat disease.

The past two years have been challenging for Kathy - helping our daughter grow from high school to college, transitioning to an empty nest, creating an art gallery business in a challenging economy, sharing the stresses of my Federal/State/local work (especially Meaningful Use for several hospitals and 2000 doctors), and supporting the health needs of our parents.

Although they past few years have been stressful, all the events are consistent with our expectation for this stage of life.

One event in the past year was a bit out of the ordinary.  A 19 year old with a very poor driving record (4 points on his license, 1 high speed collision, 1 hit and run etc.) drove down the wrong side of the road around a line of traffic and hit Kathy's car as she was exiting a parking lot.   It was very clear from the position of the impact that it was caused by a driver violating the law.

Kathy filed an insurance claim and provided all the details of the accident.

The 19 year old driver lied about what happened.

Our insurance company decided Kathy was at fault, gave her a point on her driving record, and added a multi-year surcharge to her insurance.

When Kathy pursued the issue, noting that the 19 year old with the poor driving record was lying, the insurance company told her that without a photograph of the accident or an independent witness who was willing to verify the events, they would have to believe the 19 year old because Kathy was exiting a parking lot and that makes her at least 51% responsible.  Despite Kathy's over 30 year good driving record, the insurance company representative literally ended the conversation with the statement "Life isn't fair".

That episode temporarily caused Kathy to lose her faith in humanity and gave her a sense of helplessness in a hostile world.

As with any conflict or issue, for everything there is a process.

Kathy appealed the ruling to the Massachusetts Board of Insurance and wrote an eloquent letter stating the facts.

Today the Board of Insurance ruled she was not at fault, rescinded the point on her license, and demanded that the insurance company refund/rescind the surcharge.  She cried when she opened the letter. The nice guy can still finish first.

This weekend we'll continue our search for local farmland by touring Harvard, Massachusetts with locals recommended by our next door neighbor.  The cancer diagnosis constrains our possibilities but has not dulled our enthusiasm for a long and fulfilling future.


Paul Levy said...

The bureaucratic processes put in place by our societal institutions can be the most infuriating parts of life, as they indeed create a sense of helplessness. Especially so when you are feeling vulnerable for other reasons.

You either fight them through, painfully step by step, as you did with the insurance matter -- or you let them wash over you as irrelevant in the big scheme of things. Either approach has merit!

It is interesting to think, though, that those same processes dehumanize the very people who are "doing it" to you. We create companies and agencies in which staff people are faceless and unfeeling in part because we design their work environment to be uncaring to those staff members.

How poignant is this in the health care environment, where much the same often happens!

In any organizational setting, then, our job as leaders is to help design and promote a work environment that empowers every single person and gives him/her a sense that s/he is valued for what s/he bring to the organization -- that gives them the tools to treat every client/patient/customer as they would want a member of their own family treated.

Ninad Mishra said...

Moving piece John. I used to read this blog for your insight into health IT etc. but increasingly I am landing here just to know how is everything with you and family.

Your poise in the face of so many challenges gives me strength as I face the prospect of failing health of my parents separated by vast distance.

Our prayers are with you.

joebeone said...

I hope things only get better.

Fascinating about the car insurance issue... makes me wonder what she could have done to document the issue better. The only thing I can think of is an iPhone-like HD video immediately upon being hit where you verbally talk through what happened and highlight damage to the car. Of course, proving authenticity of that kind of a record could be difficult, but it's a start.

Catherine said...

A bicylist here in AU recently got absolved of wrongdoing because he wore a camera on his helmet which recorded the accident.
Would a camera inside a car be lawful and/or useful?