Out of our hands

People have asked how to help.

There is only so much I feel able to say "YES" to.

After that I get uncomfortable. 

Very much so.

After dinners are delivered, and my kids are pawned out, and the house cleaning is done, I have no capacity to say YES to other things.

It feels wrong to ask for, and to take help.

Really wrong.

For Kyle and I, who have managed to do so much on our own,
without asking for help...to ASK for help just feels so wrong.

Hard.

Hard.

Hard.

A few people have asked about financial needs.

In some ways I feel CANCER is a rich mans disease.

People have suggested flights to China for new treatments
and trips to the "top hospitals" here in the USA.

To be able do that, you must be able to afford more doctors, and more time, and more treatment.  You have to have the luxury of flying around the USA, and the world, chasing the latest and the greatest treatments.

And for those people, the people that can do that--that is WONDERFUL!  They are so very lucky that they have that ability.

I am truly glad some people can do this, fight that fight,
with this AWFUL disease!

I sincerely mean that.

Sincerely.

The rest of us have to make do with what we have, however.

We have to not only worry about fighting an awful disease, but we also have to worry (every day!) about the costs associated with it.

So you take an already bad thing and compound it.

But that is life, and that is reality.

That is our reality.

It's not good or bad, it JUST IS.

So to the people who I asked I have said this...

I have told them "YES, cancer is expensive" and "YES, when the time comes that Kyle can't work...well, that makes new problems that are even harder to deal with."

Hard problems compounded with terminal cancer---GOOD TIMES people!

(Insert MORE swear words here)

Thinking about all those things makes it hard to breath too.

When the day comes that Kyle can now longer work, and it WILL come, his long term disability takes 2 months to kick in, and then only covers 60% of Kyle's monthly salary.

Meaning for two months he has ZERO salary.

After that, it's 60% of normal.  Can you see where we're going
here?

(Which, for the record, is VERY typical of disability insurance-and in no way a bad reflection on my husbands workplace--a job he LOVES by the way, with people who have been NOTHING but supportive of him and our situation.  Two HUGE thumbs up for all of them!) 

But for me, who is left with all of this, it causes...

Worry.

(worry worry worry)

(and more worry)

I wish I could say we were millionaires and this would be okay.

But I cannot.  We are not. (darn it!)

We did what we thought best a zillion years ago and had a working daddy and a Stay At Home Mom.

Now it seems like a really dumb idea.

Like seriously, WHY did we ever think that would be a good idea?

But that's another bridge we will have to cross (Well I guess
it's MY bridge to cross when the time comes).

Jobs and health insurance and 4 children, OH MY!

(more worry)

Can you start to see why I'm not sleeping at night?

So what I did say to the people who asked is this,
"Someone else take this over for me and just do it!
I cannot!"

And then I had to let that problem go...It's out of my hands.

That, by the way, is STILL hard.

(Why do I have to be so proud and stubborn?)

A few friends and family members have set up a link where
donations can be made.

We are NOT asking, but people have asked if they could, and so if you were one of them, there is now a chance and a place.

(And I cannot tell you how hard it is to even type that out...)

Have I mentioned how private Kyle and I are as well?

That this is excruciating to be this "public"...but so many people have asked, and want to follow, and to know and it's not fair for all of you who love him to NOT love him, and watch him,
and know.

So we're stretching OUT of our comfort zone into our "new normal".

The thing is, the future is very uncertain.

We don't know how much TIME there is.

The statistics are not great.

And we know that there WILL be an "end"...sadly, at some point
in future.  That's the truth about "terminal cancer".

We don't know if we will be granted many weeks, or many months or even some years--there is absolutely NO predicting with this cancer.

Stranger still, as I type it out it STILL doesn't seem real.

I can type it and say it over and over and even though I know
what's coming...it doesn't feel real.

Maybe that's for the best.

Maybe I couldn't get out of bed if I knew the what's and
why's and how's and when's.

I'm pretty sure I couldn't.

So for today...

It's out of our hands and into someone else's.

That's what I've got.

Hopefully the link below works and you can click it and go
to Kyle's "You Caring" page.

Thank you to the people who took this out of our hands and just did it.

Again with the gratitude.

Always more gratitude.

Kyle and his girls.

http://www.youcaring.com/medical-fundraiser/team-kyle/50207

(ok well my link doesn't work....I will see if someone smarter than me can make it work--you can always copy and paste if you're good at that stuff.)


UPDATE:

Just to let people know the "cost of cancer"....in addition to the $4500 "out of pocket" ($1500 in co-pays plus a $3000 deductible) JUST to be diagnosed (tests, Dr visits, labs, PET scans, biopsies, CT scans, endoscopy, etc etc etc)--(we do pay this in part) we got our first chemo bill in the mail today. **One week** of chemo costs $7788.50 (of which our plan pays some, we pay some--not sure on those numbers yet). So for one round of treatment for Kyle ...(A "round of treatment" for Kyle consists of 9 weeks, 2 on and 1 off of chemo for the 9 weeks...) it costs: $46,731 (obviously *not* all out of our pocket). $46 THOUSAND dollars. That's an amazing and insane number. INSANE! And I want to throw up. I thought I would share though so people can understand the burden that really comes with this. It's emotional, physical, spiritual, mental and financial. It seems that NO area in our life goes untouched. :(

UPDATE TWO:

**Just so people don't panic--the $46K number is *NOT* our out of pocket.  That is simply the cost of one round of chemo.  Billed. Period.  It would be our cost (or someones cost) if we (or they) had no insurance, or no job, or maybe really crappy insurance.  My point is: that there is a HUGE cost to fight this disease and not everyone even gets *the choice* to fight because they are not insured, or under-insured, or without a job.  That's the part that makes me sad/mad... IMO no one should ever have to choose whether a loved one has a fighting chance because cost is an issue.

What if Kyle had had this same diagnosis 3 yrs ago?  He had no job and we had no insurance.  He was not a lazy bum who had never contributed to society.  He lost a good job and then went for 7 months without one.  Bad economy ...bad luck.  We would have had to choose between bankruptcy and treatment OR his life.  There are people making this choice EVERY DAY.  I don't have a good answer, but the question haunts me.  The fact that someone would *EVER* have to choose between their life, and the cost to fight for that life, that leaves me heart-broken.