Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Tuesday, February 24, 2009

That's Not Right!

Xander is about to suffer another loss of a person he has come to trust and confide in.
His therapist, Ellen, who he has been seeing since Nov., is officially out of our budget.
We thought our insurance would reimburse her $110 hourly fee (yes, you heard it right, ouch, my wallet is screaming somewhere). To see her weekly we’ve been paying a whopping $440 out of our pocket for months with the idea after the bills were submitted, we would be repaid by the insurance company.
Silly us. Never make that mistake. Once you part with your money, The Big I’s (That’s insurance companies. I like this name. They are all about themselves and they watch over every word looking for a reason to REJECT you) will find a way to keep it.
Four hundred forty dollars a month, to put it in perspective, is more than we paid his beloved daycare provider, Jean, who throughout the years (she took care of Xander from 6 weeks for 5 years old) has become a significant part of our family and Xander’s support team.
We’re paying a therapist more each month than we paid her to keep him safe, loved, and cared for monthly. She also basically potty trained him since I was too sick to do it myself.
Insurance should pay for woman like her.
How about this, we could have a second car.
I think $440 a month is more than I pay for my car payment, insurance, and registration fee monthly. I also dare say that in some months you could add gas to this number.
I also hear, we could have a live in nanny. In the Boston surrounds, if you provide room and board (which we could easily do because of the gigantic house we have that was for my imaginary perfect life that would have filled it with adopted kids), the fee for a live in nanny monthly is $380.
Guess what, that’s cheaper than sending my son off for an hour and more stable. Unless she eats like I do, and I’ve never really met a woman who does, we wouldn’t even notice a dent in our food. I also think the difference between three and four people is nominal.
We have had people stay with us for extended amounts of time to help care for me, Heather and Grace, and neither put a huge strain on our grocery bill.
Well. . . . .maybe Heather since being my identical twin she apparently did get the constant eating gene.
What really gets me and upsets me to the point of tears is when I hear (and I often do) “Can’t you get services for free? Aren’t there options?”
The answer is yes. There are free services out there. They are just based solely on finances.
Since I am married to a man that WORKS, and we have insurance, we will NEVER receive these services free, no matter how much we NEED it for other obvious life reasons.
However, if I had become pregnant without knowing who Xander’s father was or if we were divorced, he left, or was otherwise out of the picture, X would receive free care.
If we were both disabled (and Jon qualifies due to his Crohn’s Disease), we would receive free services.
Jon chooses to continue to contribute to society by working, just sitting, behind a desk.
Due to these socially consciences decisions, we are screwed.
We are penalized by the current system
Now, that I’m done ranting about the money, let me move on to the psychology of this problem.
It’s psyche 101. The early years of development are crucial in structuring the remaining years of one’s entire life. Early childhood sets the themes, the tones, and the patterns that a person will mimic endlessly.
It is the foundation, or the sounding board, for which future ideas about themselves and the world will be built.
Do you think I feel a little bit guilty for getting cancer at such a pivotal age in my child’s development?
For damn sure, but I’m doing the best I can to teach him to cope properly.
However, try to explain this to just about anyone that uses evidence based practice and you’ll get a blank, cross eyed stare.
You mean, you can predict and intervene BEFORE there is a problem?
Yes sir, thank you Freud, for creating psychoanalysis.
According to the combined thoughts of many great theorists, X is at a very impressionable age.
In our specific situation, his newly discovered and partially mature ideas of reversibility can possibly screw him in the future.
What’s reversibility? It’s the idea that if one thing works, another similar action could work.
So, take me and my constant medication taking Xander sees. Yes, it is for cancer and all the ailments that have accompanied my treatment, but all he is seeing is that if I have a problem, I take a pill to fix it.
I take a pill again, and if that doesn’t work, I take a different one, and if that doesn’t work, something else. I do this over and over and over again until the problem is solved.
So what’s the message that X is receiving?
Have a problem, drug it.
I fear that in high school he’ll turn into the “Charlie Bartlett” character from the movie of the same title, who manipulates his psychiatrists into prescribing him medications that he hands out to his high school friends as a glorified drug dealer.
At worst, he could take the current message he’s learning and apply it to himself when he becomes depressed and angry later.
But this won’t happen, because I see it, and I’m doing my best to intervene now even though it’s been difficult to find a provider on completely the same page.
If dealt with appropriately, future MDD, PTSD, anger issues, drug use, and so on could be prevented.
It’s a theory similar to Gleevac, America’s miracle cancer drug, that boosts the presence of cancer without disease.
I want the presence of trauma without PTSD and long term repercussions.
This will be difficult to accomplish, because prevention has not yet been included in evidence based practice.
It’s time to expand the evidence to include clear patterns leading up to diagnosis.
That probably won’t work either, since prevention is unaffordable and good care is also unaffordable.
Here is something to think about.
I worked as a registered nurse in a hospital I can’t afford to get sick in anymore.
That’s just not right.
Here’s another one. Not being able to intervene now and protect my son from a lifetime of repercussions due to his mother’s disease that is completely uncontrollable because I can’t afford it.
That’s just not right.
Imagine the costs he could incur in the future in treatment that may be caused by our current situation.
Now put a price tag on it.
That tag is probably more than what it would take to protect him now, but we can’t afford it.
Imagine the costs the system will incur if he decides to go delinquent and deal drugs, crash cars, etc.
Yeah, those costs, your money not mine, could be saved.
But nobody is seeing the current circumstances that predict future behavior.


Heather said...

ugh. i'm sorry. i know that you are doing the best you can for xander. but of course as mom's we will always worry about our children and the effect that our drama's will have on them.

and i can relate so much to what you have said about being a nurse at a hospital and now how it is... and how the "free" programs are not available to us because well, our families are trying to do the right thing.

it really stinks.

Anonymous said...

I so hear you, that is the only reason we have not been able to bring E back to therapy we have such a huge bill right now still we can't catch up it just too much....

andyson said...

You think medical care is a problem, we're trying to sell a condo and get back what's owed on it in this economy - no profit, just what we owe. If neither of us worked, we could declare bankruptcy and not have that debt, but because we're normal, hard-working, upright citizens, we get screwed.

Can't you use your new-found international fame and make some drastic changes in how this country works? Or have I taken too much pain meds tonight?

As always, good, thoughtful and insightful post to how things are broken here in America.

- B