Wednesday, April 5, 2006

day 285 - CCCMA

i thought i'd take a few morning and try to catch up a bit .. this appears to be easier said than done .. my fingers aren;t going anywere i intend then on going!  this entire litte paragrah has taken me at least 10 minutes .. makes me give considertion to composing voice entries !!

can YOU say numble fingers ??? hehe



here is a little blurb publised by GotCancer . org featuring the CCCMA shirt my sister Nancy got for me !!  just thought i'd take a momemt and share it!! here i am with my nephew, Michael :)

She's a Fighter


Tune in to "Just One Girls Head Noise" - Pamela's chronical about her battle with lung cancer. Be sure and keep track of her "quit days" too, as it wasn't that long ago that she was <whisper>smoking</whisper></WHISPER />. These days she's a CCKMA'er, as you can tell from her photo!


» Go CCKMA!
» Want to add your photo?

gotCancer.org Action Shots



i can't believe how totally and completely exhausted i've been the past few days .. all the while, attributing it to the brain rads and finding out that this is more than likely because of the dexamethasone (steriods) .. these pills control the swelling in my brain, the side effects are sometimes intolarable !!  i can't wait until i'm off them completely and don't need them anymore !!

today they start weening me from the steriods (i guess it could be bad to just stop taking the pills) so they have a plan to reduce the dosage by 1/2 gram per week, which will take 4 weeks to eliminate the drug from my system.

i have to confide that i'm nervous .. these are the drugs that are controlling the swelling in my brain, reducing the chances of having another seizure .. me has a feeling i'm going to be sticking close to home for the next few weeks (just to make sure!!!)  wish me luck .. wish me a seizure free life please :)



backtracking a few days so i don't forget to share whats been going on .. my son left friday morning to attend a dirt bike memorial for one of his friends .. my daughter came and spent the weekend so i wouldn't be alone .. it was awesome spending time with her again !!  when my son arrived hone around 7 pm, he surprised me by saying "i missed you!!" i missed him too :)  i wanted to tell him that even though i've been emotional lately its NOT because i'm sad .. i'm just feeling overwhelmed at times .. i started to explain .. "my life has been ... " .. "no Mom" he corrected me gently "your life IS!!"  a subtle correction for sure, but an attitude that i want to adopt as my own :)



i was in the process of attempting to clear off my computer desktop 2 days ago and ran across my son's request to the Unversity of Hawaii to take a leave of absense for 2 semesters because of my health .. obviously he had assistance with the letter because of all the precise detail .. but non-the-less it really shook me up to read the words he has write ..

"Unfortunately she has not responded to any of the treatments.

She is living alone and has n o one to cre for her and is increasingly unable to care for herself.   She is extremely fatigued, unsteady and weak and only semi-ambulatory. Her cognitivie function varies from day to day.  My M
other desperately needs help and I am truly the only person who can provide the assistance that she requires."

He goes on the explain that he requires 2 semesters leave.

i know there was so much more that i wanted to write, its just that its taken almost 3 hours to get this far !



i am a collector of stuff .. a teacup collection started by my paternal grandmother; a harmonica collection started by my paternal grandfather; pill boxes for my daughter; dice collection for my son; ceramic artwork prepared by my children; troll collection for ME !!  shot glasses for ME !! Beanie Babies for ME !!  i have NO idea if any of this stuff means anything to anyone but i know i just can't ignore the fact that something needs to be done with all this stuff .. it appears that a huge gargage/estate sale is in my near future .. i know f sure i'm going to need help organizing .. i have an entire attic full of clothes and unused funiture .. it appears that i'm gonna have my hands full for several months .. i just hope i have the strength to pull it off
!!



i had the shock of my life yesterday .. i subscribe to monster . com where employers advertise for employees .. imagine my surprise when i realized my employer was advertising to fill MY job .. what does this mean for me?  i have NO idea but i think its about time that i start looking into receiving social security and/or california state disability benefits .. i don't even know who to ask .. i also need to make sure that if i'm placed on medical disability that i don't lose my life, dental and medical insurance .. that would screw things up for me for sure .. does anybody have any idea who i can get these answers from?  i really am clueless !



i got my daughter to help me take a few pictures of the gifts i've received the past few days !!  hopefully i'm going to have the energy to post the pictures and thank my friends :)

enough rambling eh?!?

let me see now if i can post a few pictures .. and as always, thanks for sticking around and sharing my head noise (ps .. my default dictionary is still MIA so please pardon the lack of spell check!!!!)

xoxoxox

12 comments:

suzypwr said...

You apply at the Social Security Administration for Social Security Disability. I don't know about California state benefits - but I am guessing your SSA office can direct you.

Your son needed to exaggerate some to convince the school he needed to go - I wouldn't worry about what he wrote :)

xoxo

pennietoonz said...

Hello there! Jackie sent me your way. I have been reading your past few entries and want to let you know that you are in my prayers. I was diagnosed with leukemia last year, so I know some of what you are going through. I applied and was approved for disability through social security. I also have long term disability through work, so that helps some. I could no longer afford to pay for benefits once I went on long term disability, but I have managed to get some prescriptions for free and some reimbursements for things from the Leukemia Society. There is lots of help out there. The thing is, it takes time and it`s so much paperwork! I am preparing to go back to work soon and I have hair again. :) It`s been a long year! If I can help or you need to talk, please don`t hesitate to email me. Your children sound absolutely wonderful!
God bless you -
Penny
http://journals.aol.com/pennietoonz/PennysPlace

geminiwilder said...

oh, who cares about spell check??!   =)

looks like you have some nice collections going - good thing you
have sisters to help!  your son is a prince.  and your employer, well,
i don't know about that. i guess he has to do what he has to do.  

you can begin online with SSDI (social security disability insurance)
and see what directions it gives you.  it gets to a page where finally,
if you are completely lost, there is a phone number - where it
promises you will be able to speak to a real human being!
(haven't tried it, so no promises there, lol)

jandnchgo said...

Pam,

Regarding your concerncs re: disabilty.  Better get going with that one ASAP. If it is anything like here in Illinois.......it could take a while.  I have MS and luckily the company I was working for had a LONG TERM disability benefit that I was entitled to. Unfortunately, most insurance companies are best at initially DENYING EVERY claim as they did with mine. I had to hire a lawyer to fight it...........eventually we won and I now receive a check monthly.  However, this particular disablity policy also MANDATED that I MUST apply for Social Security Disability also.  (Obviously, if SS is approved, this REDUCES the amount that the insurance company is liable for....First, check w/ your employer re: LONG TERM DISABILITY.  If you can, you should do that TODAY.  If they have a benefit, request the paperwork IMMEDIATELY.   As far as Social Security...........here in Illinois one can apply online.  Good Luck.  Let me know if there is anything I can do.

Zoe
(jandnchgo@hotmail.com)

princesssaurora said...

{{{ Pam }}}} You are winning the fight!!!

Be well,
Dawn

nyuknyukpik2 said...

maybe you can find a shelter to take the beanies--or the local police station or fire station--it seems like a good home for them!

thegirlnexdoor77 said...

Pam, have you spoke to your employer?  My dad worked with a guy who had  cancer and they paid him even while off and unable to work...He might just need the help to catch up on things....And you might not need to apply for Disability...Or you might want to so things are set in case it does happen that you need it....You can also sign the kids up as well...for benifits...I contacted the Social Security office and they got the ball started...Hugs to you....TerryAnn.

butterflies4me04 said...

Pam, I am so sad to see that you are still feeling down!
Keep your battle going .. you'll come out on top!
That's very sweet of your son!

Theresa

ajquinn354 said...

Pam, hopefully you'll be able to get some answers soon on whats going on regarding your insurance and job situation, give your employer a call, they've treated you fair through all you've been going through and sure they'll be glad to talk with you and explain thing; at least I hope they will dear. Oh your son is so caring, how blessed you are to have a son who puts you first Pam; shows how much he loves you.  There's local organizations like senior centers, hospital centers or children homes that could use some of your collections you have.  The ceramic  artwork your kids made you, give it back to them or maybe to your ex so he would have this to enjoy. I o loved all your pictures of you and your beautiful gifts you received. You are always a ray of sunshine in any picture i've ever seen you post Pam, you bring a smile to my face whenever I see one of your pictures, you just brighten all of our lives dear.  Bless you.....AJ

rachealcarol said...

It's amazing how you think just a small collection I'll start............and then it grows and grows.  Very hard to part with too :)  I think they'll be wrenching them from your hand at the garage sale but good luck with the clear out. Rache x

cneinhorn said...

your doctors office might be able to direct you where to start as far as collecting SS benefits.  The nurses at the oncology office I used to work at helped with that from what I remember.  

as far as your employer...try not to worry about it right now.  just concentrate on you and getting well.  

I love your son.  He's the best.  Both your kids are.  peace and blessings to you Pamela  :-)  nettie

srmaharshi said...

Your nicotine patch may be the reason you did not respond to chemotherapy, according to recent widely publicized research on lung cancer patients (Google "nicotine patch, chemotherapy" if you wish to learn more about this.) Happy birthday on Monday! All the best to you and your family--Sincerely, SRM