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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Sunday, September 4, 2011

The Bright side?

It's been a week since my last post. I've been battling with a lung infection. My lungs are a constant battle, but recently, I've been paying very close attention to any alterations in my health status in this arena.
How was that sentence people?
It sounds like something straight out of nursing school that I would have been forced to write.
But really, I know my lungs can kill me. I've heard too many stories from too many people who thought they were heading towards recovery only to be bested by their lungs and sent to an early grave.
Thank you for the compliments on "The Opportunity in Loss." I can't take complete credit. My writing is a gift. I wrote it in bed in so much pain from a flare up of GVHD I couldn't even open my eyes. Every once and a while I feel the hand of God, the universe, whatever you like to call it on me as I write.
But enough about that.. ....

This week started with Hurricane Irene, and had me running in crisis mode from then on.
J watched the computer weather compulsively as Irene approached.
I was too sick in bed to even comprehend the severity of what might happen. It never crossed my mind that we could be stranded at home with no way in or out, that we may need food dropped from FEMA, or that our kayaks may need to be our mode of transportation, but that's what happened to our neighbors less than 5 min. away.
Irene attacked indiscriminately. It flooded an entire shopping plaza including Kohl's, JC Penney, Sears, The Paper Shop, Game Stop, etc., but left a Shaws untouched that was less than 500 ft. away
Luckily for me, both J and mom were prepared for the worst and had discussed contingency plans.
As J sat staring at the computer, we were shocked to see Irene split in two, sending one side harmlessly out to the ocean and leaving the other to continue up the CT River, safely away from us despite living min. from the river.
Others weren't so lucky.
Mon. schools were canceled as the damage was assessed. I stayed home with X and his "best friend/ best cousin/ brother," whatever, C. I continued to hack and spit. I barely remember Mon.
On Tues. J left on business for the week to San Diego and I received a great gift from a long time friend.
My goal this past week was to declutter. I wanted to get rid of the areas where art supplies, electronic cords, toys and medical supplies were all shoved and disorganized. Ironically, a lifelong friend of ours called to offer to help to just that!
She carried the boxes up and downstairs, an impossible feat for me.
The house is more organized, but I doubt J has even noticed.
Beyond this, my last PET scan was like getting hit with a brick of reality.
It's long past time to "get my affairs in order."
In the past 3 weeks, I've met with our Priest. I have a cemetary plot. We've met with a lawyer regarding our wills.
I had a will created on Legal Zoom, which is adequate for someone like me, with no assets and everything in shared name with someone, but part of getting organized is purchasing our home.
Our lawyer, Mike Fuerst of Buckley and Zopf in Claremont, stated if we were in fear of the 2 million insurance maximum being reinstated then we should not purchase our home.
However, with the ACA the cap has been removed and we are free to purchase without fear that my medical bills will bring us to foreclosure.
Even with the housing crisis, 50% of foreclosures still include medical related debt. I pray sometime people won't have to fear being homeless on top of surviving.
Through buying our home with interest rates so low, it's possible for J to cover the mortgage, taxes, and insurance. X's SS could cover almost the entire mortgage.
My goal is to get our finances in order to the point J and X can continue living their lifestyle here without any contribution from me, needing to take in boarders, or working hours of overtime. I think we're going to be able to do that!
I spent Weds. trying to clear out mylungs with inhalers, duonebs, and lots of coughing and hacking.
X had his soccer practice, but he also had a minor emotional breakdown like he has been everyday since school started.
I can handle these. I can predict them, but they're exhausting for a mom in cancer treatment with a lung infection functioning for the week on my own. I finally made the decision to consult a psychiatrist, for medication, which was the worst debacle in our health care journey in a long time. That's a post in itself.
Thurs. I ran to DHMC to be checked then to Borders which is going out of business only to exhaust myself.
It turned out C, my nephew and X's favorite mate, didn't have school Fri. so he could come to the fair with us so he came over.
I've found, with certain friends, it's easier for me to have X and them at my home when I'm having a hard time. They occupy themselves.
Well, we'd been discussing jack knives, what they can do, and safety. I showed them mine so C had brought hit. They wanted to make bow and arrows with indian arrowheads they had.
Mom and I gave the safety lesson and laid down the law that no whittling would go on off of the deck without supervision.
Well, they disobeyed and we ended up at the ER with a cut on his thumb where we waited 2.5 hours, so long that the wound could no longer be surgically bonded together, which was the entire reason we went.
The cut wasn't huge but it was bleeding profusely, even 2.5 hrs later when they finally got to him.
J had the same injury 2 weeks before. We debated the ER. A surgical glueing or derma bonding was in order, but we went with the over-the-counter new skin, which held but not well enough for an 8 year old. He needed something tougher.
He got a steri-strip.
That's a whole other post too.
Fri. was supposed to be Fair day and we were so excited. I'd slipped the psychiatrist appt. in at 10, not telling X to avoid the drama. We got there only to find we had an appointment with a psychologist!
X has a psychologist. I wanted an MD, someone who could prescribe. Needless to say they wasted important time.
We went and enjoyed the fair but my energy had been zapped.
And this is all why my week sucked.
Let's look on the bright side though, At least I didn't have my home washed away with no insurance.

1 comment:

Anonymous said...

Yo Girl ... had suspected last week was a bear. Sorry to hear that was correct. Hope that the weekend has been a good one ... & that X is healing.

Know that you are in my thoughts ... & text me if there is something I can do to make things easier.