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.

creature-like

i realized the other day why having hodgkins lymphoma/going through chemo/having them pull bones and tissues out of you/and an endless brigade of petscans makes me feel like a creature.

that's why. poked and prodded practically everyday with no chance at the normal life one once reveled in.

make sure her bloods are up!
make sure she's not dehydrated?
make sure this and that...

don't get me wrong, i love MY doctors. but the doctors over at the stem cell place make me feel either dumb, or less of a person by having to shlep to their place of work at the times they want me to shlep there.

i don't want to shlep. i am a person. can i have one day free, to sleep. can i be selfish and ask for two free days during the week? i don't want to be your lab experiment. i'm only coming here to make sure my lymphnodes go back to normal and there's no more "cancer" in me.

so here's the deal that i know of so far...

• petscan tomorrow to see how far i've come after 2 ice chemos (after the 12 other chemo's I've had, where half supposedly only worked)
• when they will draw my stem cells from me including plugging a frankenstein-like thing into me to drain them
• if i will need another ice chemo
• when i will go in for my auto stem cell transplant. that means, they are using my own stem cells because they are healthy and not disease ridden. 
• then, 3 or so weeks in the hospital to get the stem cell transplant.
• one week of around the clock intensive chemo to eradicate whatever trace of disease in my body could be left. this will weaken me.
• the day after that, they put my stem cells (after the thaw them out, of course) back in me.
• then there's a wait to see how many days it will take for my blood counts to come up by themselves. until they start working normally, i will be at risk for infection.

in the meantime, my family has been taking care of me, and making sure i eat. i've been eating a lot, because i don't eat when i'm around chemo-times. (i just can't deal with hospitals or the food there even though i know they are trying to make me better)

yesterday, my sisters went to take blood tests for me. because, just in case my own stem cells don't work, maybe one of them will be a match. 

mine will work. 

when i get home, the house has to have been sterilized from top to bottom and i'll probably need weeks to recuperate and make sure i'm not tired before i slowly start to go out again. a small price to pay for the rest of my life, yes.

am i scared? um, yeah. hello? shit.

am i bald? my head looks like mr. clean's head. only cuter. and less hair.

i'm on ativan for anxiety, which i don't take all the time-- only if i get "that way" and it's been helping me sleep a little because i've only taken it at night.

other problems i may have later? NONE, i'm saying none. i don't care what they say. 

and i would like my hair to grow back fast and normally. is that too much to  ask??

in the meantime, the worst part of this is me thinking that i'll either puke, hallucinate, or stay at the hospital even at all. 

i don't even know what else to do.3 weeks at a hospital being bored, tired, and bored. blah.

happier notes: my teeny nephew has gotten massive grades at school, he's just wonderful. my nieces are the yummiest ever, and my oldest nephew is going to be 17 this summer. holy. cow. and my friends are so amazing, i've gotten very, very lucky.

i'm also writing a book about my hodgkie story. publishers, anyone?

i don't want to have to miss all the fun events going on this summer but i guess i gotta so i can get better. blah. this makes me mad. so....

i hope you're enjoying your summers, please do so for me!!!

love me,

the globetrotting gamine