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first, Terry has had various minor dental work done, fillings,
etc....didn't seem to concern our dentist at all that Terry has CML
Terry did smoke some as an older teen....and a "bit" during his young
adulthood.....when we were young married, he would smoke some at work...but
never, ever at home, etc. Yes, enough to be a factor that it could
have caused CML....but he is 47, hasn't really smoked anything but a once a year
cigar since he was 25 maybe.
we think that Terry got CML from benzene exposure working in the printing
industry. He ran different size printing presses, and was even the OSHA
specialist for one print shop. ha ha now!! The thing is
that while he was working in the industry, he made good money, and possibly the
whole time, he was being exposed to a chemical that has given him cancer &
has now devastated us financially.
what a mess......& yep, we did sign up with a Dallas law firm for a
class action lawsuit. They assured us it would be years before going
to trial, and certainly to not count on anything....especially as Terry did the
research for them as to the chemicals used....he found many companies were
bought out by others such as 3M, or were out of business. So,
whether we get $4,000 or $4 million.....well, it would go towards the
massive debt, trying to buy his 20 some odd prescriptions he takes now,
etc. Wow, we might even be able to have a house, etc.
LOL!!!
You do go through a stage of ANGER ...wanting to blame whatever or whoever
has done us wrong.......eventually in order to live a fairly happily daily life,
you must just move on......Yes, if it is definitely smoking or dark colas, etc,
then you would want to cease the continuous exposure. For Terry and
his poor health, he can no longer work in the printing industry. As
he cries out in pain throughout the day or night, he will never be able to stand
8 to 10 hours a day at a press. At least now, he is able to work
fulltime....took 2 years through this journey for him to even do
that. But, I always think ahead as to what if he just can't any
more.
Katy, we did consider divorce, but it would not have helped our
situation...... even with working part-time, Terry wouldn't qualify for
Medicaid in Texas. He could only earn $350 a month to get
Medicaid...and we had 3 children still at home, and if he could work, he
certainly wanted to, and will continue till he no longer can
work. SS & SSDI both were denied, since he could work some, even
if not fulltime...and he could work at any job, even if could no longer work in
his field, nor earn his previous rate of pay. We consulted an
attorney for appeals, but they said that Terry could not work for a year in
order to have a good case. Jeez.....Terry wants to work, but
has a serious illness & there is no help for those of us who were born in
America. I certainly believe that we all need to be responsible, but
if we had to shell out the $70 or so for every appt he has to go to, he would
have just given up.
Katy...just for your grins.....when Terry got diagnosed 11/04 & a
lengthy hospital stay.....when he was discharged we were sent home
"ignorant". There was no plan of action, etc, other than go see the
oncologist in 2 weeks. When I called & they said the first appt
was $565, I explained that there was no way we could pay that & could we
have a referral to some place else. The lady said what could
you pay?.....and I said well, what else would we be looking at.....she said a
$50 weekly lab bill, etc. Remember, that Terry was not able to work
at all at this point. She said well pay for the lab bill and then
pay a payment on the first appt....I stood my ground & explained that we
couldn't do that, and thanked her....that is when she finally explained that
they did have a program for Terry to apply for aid from the cancer center if he
qualified. So, I picked up the forms....filled them out, and was
glad he was approved. Then, about a week later, (they had given
Terry one day of Gleevec in the hospital) we get a call from the center saying
they were trying to rush a 30 day supply from Novartis & we had to answer
some basic financial questions....again, we were approved.....but the gal told
us that Gleevec cost a $1,000 a DAY. So, for months that is what we
understood was the cost of Gleevec. Novartis approved us for 6
months, and every time after that.
Anyway, in light that Terry couldn't see all the other docs that we
were referred to for other health concerns.....the focus was on that his
medicine cost $30,000 a month. It was VERY disconcerting for months
on end, and obviously contributed to my stress wondering what we were going to
do if & when we lost the free oncologist and free meds.
Then, shortly afterwards, they did the big lab work for the BMB, that is sent up
north somewhere, and we got that bill of $2800. We had NO clue that
we would get a bill that high, nor did the doc even think to discuss it with us
after we repeatedly had to beat it into his head there were no funds available
for groceries hardly, much less lab bills. So, between the weekly
labs & now this big lab bill....the $50,000 hospital bill...all the other
medical bills from the hospital stay......we were daily amassing medical
debt. We sent letters out, applied for aid or indigent care from
each doc & lab place....most would work with us, some wouldn't.
Even if we had the insurance that Terry has now, we still don't have the
funds to begin to pay co-pays, etc......as it is from his Feb hospital stay, he
still hasn't been able to go see all the docs he was referred to due to either
we pay for his meds, or do we pay the co-pays for appts? We finally
had to drop him seeing the endochrine doc because we just can't pay the co-pay,
the balance due from the hospital stay, etc. So, luckily our family
doc is helping us with following Terry's thyroid by asking the oncologist to add
certain lab tests whenever they are drawing for Terry's regular
labs.
We juggle as best we can. Even if we had been in better
financial shape, savings, etc, we would still have run out of $$ by
now. Our cars are getting old, but paid for...we have no home now,
etc. Sold everything that had any value & junk that
didn't. I even was going to list my china on ebay...and my sister was so
horrified that she came one day & packed it up when we were moving &
said she would store it, if for no other reason than for our children to have it
one day. I even offered to hock my wedding ring, but Terry drew the
line at that.
now, as Thanksgiving approaches, my youngest child reminded me that she has
been contemplating what to share with her grandparents when we go around the
room to share what we are thankful for from this past year. I can
only say that Terry will be at 2 years since his diagnosis & given how sick
he got this spring, it is a miracle he is alive. OH!!
Chrissy wondered also about how long before you were diagnosed......we think he
actively was ill for at least one to 2 years because of his symptoms...tired all
the time, didn't really care about things, etc.
Lora --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group.
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