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Grex > Health > #89: Sindi Keesan's Lymphoma Journal Part 3 |  |
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| 25 new of 475 responses total. |
klg
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response 450 of 475:
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Jan 4 17:08 UTC 2006 |
Current issue of CURE magazine has an interesting article on lymphoma.
It appears that researchers have identified characteristics of
different "strains" of the disease and are able to customize treatments
to the particular strain.
CURE is, I think, available on line.
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keesan
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response 451 of 475:
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Jan 4 17:30 UTC 2006 |
This is not new. One of the drugs used is a monoclonal antibody. It attaches
only to lymph cells that have a certain marker on them. Most cancerous
lymphoma cells do have this marker, about 15% do not (they lost it). People
are working on developing similar treatments for other forms of cancer. You
can also attach radioactive iodine to this drug, so that when it attaches to
a lymph cell, not only does it act to attract the other cells which kill these
marked cells, but it kills them directly. It also kills nearby cells, which
include more lymph cells (some of them inside a tumor and not directly
accessible) and other non-cancerous cells, which is why you don't use this
drug if other things will work. At one point they kept patients in the
hospital for a week afterwards, behind a lead curtain, to protect other people
from the radiation.
By the way, I passed another checkup in early December and only need to go
twice a year for the next three years. They recommend flu shots for people
who had lymphoma, because we might still have weaker immune systems. (Mine
appears to be normal, judging from the blood counts).
I got billed $29. The county clinic in Ypsi only charged $15 two years ago
but it was a much longer trip, and a 2 hour wait. The nurse kept me in the
room for 10 minute afterwards to make sure I had no reaction. I needed a
prescription to have it done at the Cancer and Geriatrics Center because there
is a shortage of flu vaccine this year. Apparently people think it will
protect them against avian flu.
A friend's mother had surgery and is undergoing chemotherapy for breast
cancer. (They wanted her to do it in reverse order but she is 75 and did not
want to be too weak for surgery, having heard that chemotherapy is very hard
on you). They offered the older treatment with methotrexate, or a newer one
consisting of two months of Adriamycin and Cytoxan (two of the drugs I had)
then two months of Taxol. They said the older treatment had less side
effects, and her 10-year cancer-free-survival rate would be 15% with the new
treatment and 5% with the old one. She figured she would die anyway so was
going to choose the older treatment but then I looked up some other
statistics. 5-year survival rate (with or without cancer) is 50% for her
Grade III (rather advanced) form, which includes deaths (by age 80) from
things like heart attacks, strokes, and being hit by a car. What percentage
of non-cancerous 75 year olds live another 10 years? I also pointed out that
her cancer is relatively slow-growing and that they find new treatments every
few years. If she was still around in 5 years and the cancer recurred, there
were already alternative therapies that could knock it back for another few
years. My aunt was treated for breast cancer at age 86 and died at age 88
from a fall.
The friend's mother chose the more aggressive therapy. It also helped that
I described my side effects. She was concerned about the Adriamycin escaping
from the vein. It happened to me, my hand hurt for a week, it was worth it.
The 'milder' therapy can cause all the skin to peel off your hands and feet
but does not make your hair fall out. I told her mine did not fall out, just
thinned, the first few months, and to wear a hat. That the side effects were
cumulative and worse if you took five drugs not just 1 or 2 like she will
have, and did not get so bad for the first few months, which is all she is
doing. (This info actually all went through someone else because her daughter
thinks her mother does not want anyone to know what is going on.)
I still have the side effect of lymphoma that it hurts to sit, and my strength
is not back to what it was, but I am working on it. The neighbor who had
lymphoma a year after me went for a walk with me along the river for 90
minutes and wants to go again. We went slower up the hills. Jim put a
trampoline next to the basement piano for me. I climb stairs to use the
manually operated washer (6 times per load).
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tod
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response 452 of 475:
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Jan 4 17:41 UTC 2006 |
Congratulations on your checkup.
Why do you climb stairs 6 times per load?
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klg
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response 453 of 475:
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Jan 4 17:54 UTC 2006 |
(A trampoline in the basement? I'd pay to see you use it.)
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keesan
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response 454 of 475:
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Jan 4 19:55 UTC 2006 |
I told you, the washing machine has a manual control. Jim made it from a
large computer power supply case, added three toggle switches and a 12 minute
mechanical timer (which cost money - I used to use it to time my electric
frying pan so I would not forget it and burn things). Turn on the big red
switch, which starts it rotating, then the first toggle, to feed in water,
and the timer for 12 minutes. Go back upstairs. Come down and turn off the
water-in switch and turn on the second switch to pump water out, timer for
3 minutes. Upstairs. Downstairs.
Leave pump switch (#2) turned on, also flip up #3 to spin. Stick around for
a minute to make sure the machine is not going to walk off the platform, with
timer set to 3 minutes or so depending on load size. Upstairs, downstairs
(or use the bathroom, which is also in the basement, or bring a book). Turn
off #3. This is a wash cycle. Repeat twice for two rinses. If you want
spray rinse, stand there and turn #1 switch on for 5 sec, off for 5 sec,
repeatedly, during the spin cycle. If I stick around during the spin cycle
instead of going upstairs, that is two trips each for wash, rinse, rinse.
If I don't spray rinse, it is 9 trips.
The trampoline is a small one we found at the curb and Jim fixed and it is
in the basement because it is cooler there, and next to the piano, and I can
use it to warm up while practicing piano. How much do I get paid per minute
of exercise, klg? This basement is not the one with the washing machine, that
is at my apartment.
I should get back to doing pushups. I started by standing, leaning against
the wall, and progressed to doing them on my knees, 50 of them. In high
school we had to do 15 each situps and knee-pushups to pass a fitness exam.
When I started in 2005, I could only do about 3 against the wall.
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klg
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response 455 of 475:
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Jan 4 20:32 UTC 2006 |
Can Jim turn a dishwasher into a snowthrower?
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tod
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response 456 of 475:
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Jan 4 21:27 UTC 2006 |
re #454
That sounds wild with all the switches. I'd totally forget what cycle was
next.
How long have you been playing piano?
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keesan
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response 457 of 475:
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Jan 5 02:54 UTC 2006 |
Re 455 - why would anyone want to own a dishwasher or a snow thrower? They
both make an awful racket and waste fuel.
Re: 454. From age 7-14 lessons, and I started lessons again last summer but
my teacher just graduated with an M. A. and it is not good weather to be
biking to north campus for lessons.
I can tell what cycle is next from which switches are up or down.
If 1 is up, turn 1 down and 2 up, if 2 is up turn 3 up, if 2 and 3 are up,
turn them down and turn 1 up. Simple, except when I forget.
My neighbor with the dirty laundry keeps bringing me breakfast. I can see
why he is not skinny - hash browns (fried), biscuits and gravy, and he was
going to bring hamburg but I reminded him I don't eat hamburger so he offered
veggie burger and brought fried breaded shrimp. I am going to have to risk
hurting his feelings and turning down the next breakfast. Once it was oatmeal
(and some other things to go with it as an antidote). The breakfast pizza
one day also had hash browns on it (and some little greasy red things that
I ignored).
I just got an email today asking me to volunteer to test out the new U of M
Cancer Center website. It is an hour next week, but two hours to get there
and back (North Campus) or maybe more if it gets icy again. Good exercise.
At the Survivors' meeting last spring I was the first to volunteer to sort
little pieces of paper with topics on them into related piles and I must have
left my name and email address then.
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tod
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response 458 of 475:
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Jan 5 06:25 UTC 2006 |
That's alot of grease and carbs. I've been having wraps for breakfast (if
I have breakfast.)
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klg
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response 459 of 475:
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Jan 5 11:54 UTC 2006 |
Answer: You give her a shovel.
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keesan
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response 460 of 475:
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Jan 5 16:55 UTC 2006 |
What is 459 in reference to? I have several shovels.
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glenda
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response 461 of 475:
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Jan 6 10:35 UTC 2006 |
Re #457: Why have a washing machine that wastes water and fuel and makes a
racket.
I use a dishwasher to free up my time for other more fun or
productive things (like homework, other housework, charity knitting, petting
my kitties, etc.) and to sanitize the dishes (a dishwasher can wash dishes
with a much higher temperature water than my hands can handle). I don't find
the noise any worse than some of the music played by my neighbors or Damon's
games. Modern dishwashers really aren't that noisy.
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keesan
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response 462 of 475:
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Jan 6 14:48 UTC 2006 |
My washing machine does not use any more water than hand washing and possibly
less, because it spins them dryer than I can wring them and can wash in colder
water than I want to handle by hand in the winter (for rinses). My dishes
don't need to be sanitized, they are not infected, and the detergent and water
remove any food that bacteria cold grow on. And I find it takes no more time
to wash and rinse a dish that to put it into a dishwasher and take it back
out, and it takes up much less space, and I don't need to own as many dishes
because I don't need to have enough to fill a dishwasher, and I can use milder
detergent that does not degrade the glaze or smell bad, and listen to the
radio while washing, or wash dishes while waiting for the pressure cooker to
reach pressure or the microwave oven to cook potatoes.
I once lived in an apartment with a dishwasher that was broken, and they took
it out for a while and we could store our potatoes and onions in the space.
THey put in a new one, which was harder to store potatoes in.
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tod
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response 463 of 475:
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Jan 6 18:46 UTC 2006 |
I use the dishwasher maybe once a year..and that's only as a drying rack.
I do not trust another human being to wash the dishes as well as I do..let
alone trust a machine.
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keesan
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response 464 of 475:
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Jul 13 12:54 UTC 2006 |
I passed another CT scan late April and the doctor said since all my results
were good so far, instead of switching from every 4 to every 6 months I could
go 9 months, which will save me the cost of a CT scan or two (and some IVs).
I found a desk chair with spring that are sprung and if I sit on that instead
of just thin cushions most of the day it does not hurt and I am getting better
quickly as long as I don't sit on other things.
I went swimming twice, the second time got a ride with a neighbor and swam
a mile, same as my maximum last year. So we took her 6 year old step
granddaughter to play on the really nice equipment at Independence Lake and
she happily swung across one arm at a time on a set of bars that I could not
even hang from with both arms for more than a few seconds. So Jim put up a
bar for me that I am exercising on. At about 5'. I can do diagonal pushups
and pullups and also hang from it, and some day maybe do a real pullup.
I can also run a block slightly uphill, or two on a level surface, before
getting too out of breath. One of the chemotherapy agents (adriamycin) causes
heart damage, maybe that is why I get out of breath? I will try to run every
day and some day get around the block, but probably not do a marathon.
This year I only have to pay for one CT scan. $3200 plus $400 for the
doctors', after the insurance gets its large negotiated discount. THe second
scan in a year puts me over $5000, at which point the insurance starts paying
70%. A neighbor says Washtenaw County has free health insurance for anyone
making under $17,000/year that has very cheap doctor's visits ($25 copay) and
practically free drugs ($3 copay) and free emergency room service and free
preventive care. (I get 80% of up to $400/year paid). You have to prove you
are not eligible for Medicare, he said (Medicaid?). Does Medicare provide
free preventive care?
I wish there were a closer place to swim without chlorine.
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keesan
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response 465 of 475:
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Jan 30 03:00 UTC 2007 |
Jan 29 CT scan without any X-Ray contrast solution, meaning no IV, meaning
it took 1/4 as long and did not hurt. They don't know in advance so I worried
about it all week anyway. It should also be somewhat cheaper.
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denise
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response 466 of 475:
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Jan 30 18:19 UTC 2007 |
I hope you get good news about the results of the CT scan, Sindi. Let us know
when you find out.
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keesan
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response 467 of 475:
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Jan 30 19:18 UTC 2007 |
Thanks, denise. I emailed the nurse to ask.
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keesan
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response 468 of 475:
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Feb 5 19:53 UTC 2007 |
She forgot to answer. Today she apologized. Everything normal. I was
supposed to have the IV/contrast dye part of the CT scan but she forgot to
tell the radiologist so they skipped it. Instead of every 6 months for the
last three years, I had last week's scan after 9 months and the next will be
in December (11 months, same calendar year so the insurance will pay a bit
of the $6000 total, maybe $500), and the one after that at 13 months, and in
exchange I only need to get a general checkup and blood tests in between
scans. This is saving us three CT scans at $4000 each. The doctor told me
my chances of recurrence were now very very low and I made his day. I hope
he tells lots of people that today. We finished off the hospital trip by a
nice chat (in Russian/Ukrainian) with an 80 year old man from near Kiev
waiting for his wife. They know 10 words of English and were delighted to
talk to a real American. We know one of their four regular interpretors.
He told us how 3 years ago before they came here they could easily afford,
on their pension, to stock up for the winter on potatoes, onions, cabbage (to
make sauerkraut), cukes (to make salt pickles), and tomatoes (also to
preserve) but prices have doubled since then relative to pensions. There are
serious economic problems in Ukraine. They came because their son in law's
brother somehow got a visa and they can all invite immediate family.
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keesan
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response 469 of 475:
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Feb 6 04:26 UTC 2007 |
My neighbor on the corner said she is now down to a scan every 6 months and
also feels fine (after the same type of lymphoma). We are planning to go
swimming at the lake again, but not immediately.
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keesan
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response 470 of 475:
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Jul 5 21:17 UTC 2007 |
The cancer doctor is letting me get CT scans every 12 months instead of every
6 months for the last three years of checkups (out of 5 total). After 3 years
of checkups the chances of recurrence are very low. But I need to get blood
tests every 6 months so I had them done when I had my annual physical. The
doctor told Jim he did not need annual checkups (at least not PSA tests) and
then checked my lymph nodes. He diagnosed my soreness in sitting as ischial
bursitis, an inflammation involving a sac where the tendon and bone connect
(?). One possible cause is pressure. One possible treatment is stretching
exercises (probably won't help in my case but I tried them anyway, however
they aggravate the pulled muscle or tendon that I developed a few years ago
while sitting on my left foot to relieve the pressure on my sitbones). For
some reason the bone doctor who gave me an X-ray and an MRI never thought of
this. It sounds reasonable. The doctor said I could have the physical
therapy dept show me exercises. I looked them up online instead, much much
cheaper.
A treatment is to sit on a foam cushion with cutouts. I will try styrofoam.
The cancer doctor said I should not be getting more frequent viral infections
after chemotherapy, but both my neighbor and I seem to be sick about 3-4 days
out of every week, generic infections.
This week I have been sick for 6 days with something that Jim had for 3-4 days
so I called the general medicine dept asking why, and the nurse there said
after chemotherapy, maybe forever, I can expect to be sick 3 days longer than
anyone else. This is a virus that is going around and I should be better in
a day or two. Generalists often have a better overall picture. So do nurses.
I wonder if my immune system memory was affected (fewer memory cells).
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keesan
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response 471 of 475:
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Feb 2 19:36 UTC 2009 |
The same doctor is letting me not see him annually for blood tests and exams.
I can ask my regular doctor to do them instead (for which the insurance will
pay 80% since it is preventive and not diagnostic). I passed my very last
CT scan and had normal results on all three blood tests this week.
The beginning.
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denise
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response 472 of 475:
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Feb 10 21:14 UTC 2009 |
Glad to hear the good reports, Sindi.
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keesan
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response 473 of 475:
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Apr 22 04:05 UTC 2009 |
My health insurance premiums are up 50% over last year, because they stopped
offering this plan and anyone who can is switching to something else, which
leaves those of us not able to switch in this group, and much higher premiums
since some of the people who cannot switch are sick. I am not sick and was
told I have near zero chance of recurrence, but no insurance company will
issue me a new policy. Except my agent says BCBS might have just come out
with something relatively cheap because they have to charge the same to
everyone, of all ages, whether or not they have any preexisting condition.
Preexisting conditions are not covered for 6 months. It does not pay for
any drugs, or preventive care unless you go over the deductible, but it is
cheaper than my current $8000 deductible (plus $1000 deductible for drugs)
policy is going to be next year and the deductible is only $3500. Another
agent says BCBS stopped offering this policy April 1. My agent was explaining
something about it and thinks they are starting it again May 1. I hope he
is right.
Some insurance companies want a physical exam, one wanted you to have blood
pressure under 140/90 (ours is 100/65 or less) and cholesterol under 220 (ours
is 40 or 50), another was fussy about weight and height. BCBS wants a medical
history but they cannot charge differentially based on it.
I was told Medicare only costs $53/month but you have to pay 20% of all costs,
or you can get supplemental insurance and pay up to $200/month (if you want
drug coverage and no copay). Something to look forward to. If my policy
keeps going up 50%/year I can switch to a more expensive BCBS (about
$100/month more than the cheaper policy) in a couple of years.
Then there is dental insurance, which pays 80% of preventive care if you pay
premiums equal to about the cost of preventive care, and after the first year
also pays 50% of the cost of fillings up to $1000 including the preventive
care. The agent says most people don't think it is worth the cost.
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keesan
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response 474 of 475:
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Apr 24 22:22 UTC 2009 |
We got the forms for American Community Mutual Insurance and they now have
higher deductibles, up to $7500 after which you pay 40% of up to $20,000 for
$15,500 out of pocket. A $5000 plus 40% ($13000) policy is only $190/month
and pays for nothing at all until it hits $5000, except for accidents if you
get treated within 30 days. (Maybe they figure this is cheaper in the long
run for them). I am not eligible because I have a preexisting condition.
We had a long list of conditions to check off or not for Jim - he has not
had any miscarriages, or embolisms, but he did injure his knee and was tested
for Lyme Disease. You only need to list conditions within the past 10 years
so when I am 63 I can get cheaper health insurance again for a year and a half
before Medicare.
How do sick people come up with $7200/year for BCBS insurance while also
paying their medical bills (the deductible)?
Until April 1 BCBS had a $190/month policy for anyone of any age and medical
condition (but would not pay for preexisting conditions for 6 months). I
should have researched this sooner.
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