so disappointed in LLS

This has nothing to do with my lymph nodes, but though I'm about to go through a SCT, I'm appalled at the way I've been treated and given the run around by LLS, since I was diagnosed in NOVEMBER and applied in NOVEMBER 2012 for copay assistance (because let's face it, med bills and gas for your car aren't cheap) and I just received $84 this past week. Seriously? I'm about to blog about my situation, for there was only one helpful person at LLS that I've spoken to through months of trying to find a leeway I'll never get to. I'm so disappointed.


Rundown of the story: I was diagnosed right after 2 biopsies and during hurricane sandy. So November 1st, I was told I had Hodgkin's Lymphoma and I called the Leukemia and Lymphoma Society right away.

Between sending them in what they needed (remember, this is Nov. 2012) bone marrow biopsies, chemo treatments, anti-anxiety meds and a port placement and an emergency room visit, I was pretty busy for about a month and a half.

So the first week of January or so, i call LLS to see if there's any leeway on my case- not like i'm really thinking about paperwork, but with HL anything helps.

I get this super nasty lady on the phone who treats me like a piece of crap. i doubt that was even recorded.

Cue more chemo, a bleo treatment on my already damaged lungs, hallucinations, black outs, pleural rubs, more tests, more meds...and I don't realize I've heard NOTHING from the Leukemia and Lymphoma Society until months later when my brain seems to be trying to pull itself from it's chemo stupor.

When I call up, they tell me that I'm not eligible for the full "grant" I could have gotten because I'VE LET TIME LAPSE!!

Oh gee,  you think? Maybe some frequent correspondence from your end would have helped? I am the only person in my house during the day, and my Mother has no idea from these things. But it doesn't matter.

So I finally reapply, and they send me, JUNE 2013, and $84 check only for MEDS!!

I am so disappointed and disgusted that a cancer patient would have to go through this rollercoaster just for a little sense of peace that I would tell people just not to bother with LLS. They have one saving grace there, and I won't mention her name, but she can't even help me with this. 

So now, after more tests, a pending stem celltransplant, complete with a catheter placed in my jugular like fucking frankenstein, I guess I can use the $84 to go to and from queens and manhattan.

sorry for venting. I am so mad.

last week

last week was not a good week.
thus the MIA-ness.

my Grandma passed away.
I've been hysterical, but know that she's not suffering now.
The cancer had spread, and she was barely 90 lbs.
I know that she didn't want any food or medicine at the end-
because I was there.

I feel as if she meant- enough is enough...
I'm going to your Grandfather. He's late- where has he been?

So during the funeral last Friday, LML receives a phone call
that his favorite Aunt passed on as well...

Two souls that were making their way up to heaven to be with their loved ones.
And the ones left behind are hurt...but didn't want them to suffer anymore.

The crisis in Japan also sent us reeling and our immune systems have since shut down...
so we spent the day in today, sleeping until 12 pm for the first time since we were about 16.

that being said, i don't know when i'll be back to my regular self.
but thanks for being there for me <3

the globetrotting gamine