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."

Get a playlist! Standalone player Get Ringtones

Sunday, August 23, 2009

Life Has a Mind of Its Own

Lying in bed for the sixth hour straight, staring at the ceiling and hoping and praying that I am just extra tired from this past week's combination of treatments and procedures (maybe taking care of a sick X too?) and not clothes lined by what ever virus xander had last week, I'm thinking it's pretty clear life has a mind of its own.

If it didn't I wouldn't even be here.

Believe it or not, I know where your mind is going, and it’s not there. It's not what you're thinking.

I wouldn't be here living the American dream with the beautiful country estate, engineer husband, 1.5 children, perennial garden and german shepard.

No, that was not my plan.

This scenario was one of life's crazy twists that happened.

Thank goodness it did, because this NH country living set up has really worked well as the primary backdrop to restfully fighting cancer (how much of an oxymoron is that?).

Though life has set me up in relatively good condition to fight a horrible condition and system by making sure I was significantly educated, financed and insured, there are always variables.

Yes, variables. Variables. Variables. Variables.

These are why I am broke, broke, broke.

But variables are really the spice of life.

X was a variable.

Lex was a variable.

Let’s talk about her.

Our niece has always been a much loved member of our family who we pledged to care for and give all the chances x would have.

She is Jon’s sister’s first daughter.

She was a deal breaker when J and I got together. If I wasn't willing to mother her should he become gaurdian all future dates were off. We gave our word that we would take on and kept it, with sabbaticals when we thought my cancer was temporary.

I am sure many of you have wondered why with all our problems we have kept our dedication to her.

It’s simple. Life isn’t always about us. We’ve had our time. We stated we would allow her to have the best possible childhood given her circumstances, and hope with our intervention, she would succeed in life.

There were always places in the budget where we could cut.

But now my cancer is here, my medical costs have sky rocketed, I have gotten a pink slip from an "insurance company" and we have all ready cut from the budget all we can.

Where do you think we are looking to cut next?

This obviously isn't by choice.

We gave a child our word that we would love and protect her to the best of our capabilities, and really to a child, if you don't have your word you have nothing. We just can no longer afford to eat, pay our bills, and clothe a child that is not legitimately ours, even though we have taken the responsibility for years.

We will not be signing her up for sports in an attempt to help her socialize and assimilate.

There is no cash for that.

Will we be buying clothes that fit and are appropriate for each season?


I can’t count the times she has come to our home with shoes too small or clothes that she would freeze in.

We won’t be able to provide the security of these needs anymore.

It was never our responsibility anyway.

We were trying to show our niece the love and safety the world had to offer that she hadn’t encountered elsewhere in the world.

Even worse, do you think she'll even be coming around to have family time? No, there is little time for that, even if Jon has been her primary male role model and we are the only young married couple she knows.

I am too sick. He is too stressed and we now no longer have the flexibility to consider providing a minimum for 2 kids.

So due to the economy, the state of our health care system, and my overall lack of health, we're going to have to let Lexi go.

She'll just fend for herself with what her single unemployed, "disabled" mom can provide her along with her two other children.

America looks out for our young and innocent doesn’t it?

The “insurance” company pink slipped me, and now these are the affects. This is what occurs when corporate America brings down the gavel with it’s small print, cutting off rightfully owed services in exchange for healthy profits.

Children suffer.

Alexis is suffering.

I am sure there are so many others out there who have been forced to suffer loss after loss after loss, like we have. Little do we know when we start that it is just a never ending cycle that will not stop taking until we have been robbed of everything.

And we thought losing our health was enough.

I thought losing my functional capacity was enough. I thought losing my roles as a caretaker and a mother was enough. I thought losing my career and my license to work as an RN was enough. I thought it may end at me sacrificing my 20s to a terrible disease.

Silly me, there’s more to be had.

Now, we can't even afford to be role models to a child we have cared to for eight years.

This is sad. This is wrong. It’s downright reprehensible, but life goes on with a mind of its own.

Now, how do we explain this to a nine year old?

No comments: