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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 421 of 475:
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Nov 17 02:09 UTC 2004 |
A ct scan for making a mold???? I made a mold for my chest radiation
therapy by laying on a plastic bag full of wet plaster. Why would it
be different for a knee?
In addition to the radiation tx, there was a weekly exam by the
radiation oncologist.
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keesan
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response 422 of 475:
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Nov 17 03:08 UTC 2004 |
The CT scan is supposed to pinpoint where the sarcoma regrew after surgery,
and then I would guess they mark that on the mold so that they can aim the
radiation very precisely to kill just the sarcoma. I did not get to ask more
questions because I had to go off to get the IV. A doctor friend of mine
emails me the results within a day or two so I do not have to wait until next
week. For some reason they don't want patients to read these - perhaps
because many won't understand anything.
I am betting that my enlarged thymus is back to normal size as I have not felt
pressure in that area since early October. Last time they told me I could
not possibly feel the enlargement. I could also tell when the fluid around
my lungs was gone before the CT scan indicated that, because it stopped
hurting.
klg - could you feel your thymus was enlarged? And didn't they do a CT scan
before they irradiated?
Today I got another reminder in the mail about this morning's appointment,
when I got home (along with reminders of the next three appointments Sunday
and Monday). Jim gets notices of blood donation dates at the Chamber of
Commerce that arrive the same day. Is there some place to donate at the
hospital instead? It is very difficult to pry from the Red Cross information
about local donating events. Chamber of Commerce is the closest. Once I
managed to get someone to promise me to email this information from Red Cross
and she sent at Excel file that I needed to convert to something readable.
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klg
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response 423 of 475:
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Nov 17 11:55 UTC 2004 |
Yeah. Very difficult.
http://www.wc-redcross.org/blood/blood.htm
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keesan
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response 424 of 475:
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Nov 17 18:22 UTC 2004 |
Thanks, klg. This may be new. A couple of years ago we could not find this
info online. Jim likes to donate at Chamber of Commerce but they are not
listed for this month. This week he can donate at Michigan Union Wed-Friday
2-8 pm, and Friday also at the East Hall atrium. On the 24th at ISR, 9-3.
My young Macedonian friend whose mother died of stomach cancer reports that
her aunt is now in the hospital awaiting two operations for cancer in situ.
My neighbor on the corner has probably just finished her 8th and final chemo
session for the same lymphoma I had. It started with hip and leg pain and
they took a very small X-ray and told her she might have sciatica. A couple
of months later someone thought to scan a larger area. She is still on
crutches but the area of hip bone that was destroyed by invasive tumor cells
is nearly grown back to normal. She was acting really cheery - in our cases
the cure was a lot better than the disease.
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keesan
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response 425 of 475:
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Nov 18 03:07 UTC 2004 |
I passed, nothing is changed including 'mildly' enlarged thymus.
Tonight we biked to the Michigan Union to donate Jim's blood and discovered
they were having a Blood Battle against Ohio State, complete with battle
noises (probably from the radio) and bright lights in your eyes. Jim did not
think he could stand over an hour of this so he will wait for the Chamber of
Commerce in January. Only U of M was listed on the website for November and
the Chamber said Red Cross did not want to collect from them again this year
for no reason they knew of. The Chamber has homemade cookies. Perhaps some
local bank will donate before January.
The CT scan results referred to uneventful administration of contrast
solution. I guess blood all over the floor is normal. I am getting used to
the funny-tasting artificially flavored solution. It is at least no longer
icy cold. The banana version might make me nauseous though. Having drunk
nothing for 15 hours I did not mind the 32 oz of liquid. I decided not to
get up at 4 am for breakfast this time.
I could catch up on sleep now except tomorrow is garbage day, meaning noise
all morning starting at 7:30.
MRI Sunday. Blood draw Monday. Two doctor's appointments then maybe I can
have off until mid February. My chances of a relapse peak at 11-14 months,
which includes February. Maybe I will celebrate the 1-year mark.
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keesan
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response 426 of 475:
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Nov 22 03:32 UTC 2004 |
Today I went for an MRI. They said to come 30 min early and then we just sat
there for 30 min. Almost was a bit late because the med school is now locked
on Sundays, but someone let us in the door. We park there and walk through
the building.
I wore nonmetallic clothing but they made me change anyway, to XXXL gown and
scrub pants. I nearly tripped over them. I don't know how a XXXL person
would fit into the hole in the MRI machine. My short underwear was okay but
they would not allow the long underwear (no good reason) or the t-shirt
(screen printed) or flannel shirt, so I put that over the gown and at the MRI
room they said I could leave it on.
I got earplugs but could still hear what sounded like varying frequencies of
very fast jack-hammer crossed with loud buzz. The strapped down my middle
and feet so my pelvis would not move. I did NOT have to fast first, or keep
my arms lifted up in the air or behind my head. The hole in the machine was
too small to allow that anyway. No IV - it would not have fit into the
machine, which must be a very large circular magnet of some sort.
They injected the rare and highly magnetic element gadolinium near the end
and took another picture before and after. I hope moving my leg in between
did not spoil the picture (I forget, when they took me out for the injection)
Gadolinium is much safer than the iodine used for CT scans but sometimes burns
if it leaks. Mine started to leak so they stopped just before the end.
It is used to provide better contrast for various tumors and other problesm
in the breasts, liver and brain, and for slipped disks. I don't know what
they are using it for here. MRI is what is used to detect bone necrosis due
to overdoses of prednisone but my symptoms don't act like the usual ones for
that and I only had it 5 days at a time. My mother got the necrosis by taking
large doses for months at a time and it hurt to stand. It just hurts me to
sit. I don't expect them to figure this out. But it is worth trying.
This is not for claustrophobes. 45 min in a narrow cylindrical opening that
did not let me move my arms at all and was probably a few inches from my nose
but I had my eyes shut. Cool air was blowing over me all the time - don't
know if it was too make it easier to breathe, reduce claustrophobia, or cool
the magnet.
I studied NMR (renamed MRI) in chemistry, where it is used to identify
molecules from how they absorb different wavelengths (?) of magnetism. Maybe
Rane can explain how it works for imaging. I will read more later. Got to
get some sleep before I get jabbed for a third time this week at tomorrow's
blood draw, followed by the doctor telling me how good my CT scan came out.
Nothing has changed including mild thymic enlargement.
I am no longer cold sensitive like I was for 9 years before I got diagnosed,
when I would get flu-like symptoms if I got slightly chilled, and had to sleep
with a hat to 75 degrees and socks to 80 degrees. I am down to 55 degrees
now without needing a hat. Somehow the immune system was overdoing things.
The hot flashes might be helping. They are back up to about an hour again,
having gone from 50 min to 1.5-2 hours and back down and back up and now down
again. Cannot find much of a pattern.
The thymocytes, which mature in the thymus, are what attacks tumor cells, so
I don't mind having extras for a while.
No blood donation sites are listed this month except a few in Ypsilanti and
the rest are at U of M but we found one for Wed at the ISR, which we hope will
not have battle music. The ISR tends to have lots of cookies at its
receptions so Jim hopes for chocolate chip.
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keesan
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response 427 of 475:
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Nov 22 16:18 UTC 2004 |
Did I mention that to keep me from moving for 45 min they strapped me down
across the middle and then also tied my feet? When they told me I could get
up they forgot to untie my feet.
We were nearly late to the appointment because the medical school doors are
now all locked and you need a special card to get through, as of recently.
Finally someone coming out let us in. On the way back a couple of other people
could not get through that building either, one trying to read the med
library. A nurse tried her card but it had to be a student card. They say
this is something to do with the current regime's war. Perhaps they expected
us to look for anthrax on campus?
Thursday we paid for Jim's Unix Shells and Scripts class with two $100's and
a $1 after they refused to let me pay online with my bank routing number for
his student account. The current regime has made it illegal for anyone to
pay for someone else's tuition. I don't know if this includes parents trying
to send their kids to school. Do 17 year olds have to have checking accounts
now? But there was no problem paying cash. I wonder if paying cash will brand
Jim as a possible subversive element. He might be able to program the medical
school computers to make anthrax bombs, for instance.
Today I postponed my 3-month checkup a week because I still have a sore throat
and I am now sneezing as well. My small neighbor was out of kindergarten for
a week with her sore throat and fever. I DO NOT want to expose the people
there for chemotherapy. Also it would probably affect my blood counts.
Anyway, who needs to get jabbed three times in one week.
Coming out of the hospital, we were let into the medical school by a student
who had a card but did not bother to use it. She showed us that you can just
push the door open because the lock did not latch properly. This is really
high security. We noticed other people holding doors open for each other.
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keesan
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response 428 of 475:
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Nov 30 00:49 UTC 2004 |
The MRI showed nothing and nobody knows why I hurt to sit.
Today we got there an hour early for the blood draw and doctor. They called
me for blood draw while I was taking off my coat. Sometimes it is an hour
wait. Then I waited from 10:15 to about 1:15 to see the doctor, who first
talked to someone from Saginaw who had a bunch of possibly related symptoms
and maybe T-cell lymphoma along with diabetes and breathing problems for 16
years. She can't handle chemotherapy so they keep irradiating. Someone else
has been coming for 8 years for multiple myeloma which the doctor diagnosed
after she hurt her back falling off her bike. Two parents where there with a
small child to see the hematologist about his infusions for hemophilia. Based
on weight, only $500 for a 1 year old, and eventually he will need every other
day. He is missing factor 8 out of 13 links in the metabolic pathway, the
most common link to be broken. He makes no factor at all.
The myeloma woman looked familiar. She comes every week for a new treatment,
the last few having failed, including bone marrow transplant which required
28 days of hospital isolation. She said she told the doctor she was tired
of fighting it but they think the new treatment is helping. It kills the
tumor cells in her bones then they give her a drug to fill in the holes, so
it must be working. Drug approved only this past year (June).
The assistant doctor felt my lymph nodes (they are fine) and said it could
take a year and a half to get back my energy. I probably do not have
permanent heart damage but if I ever have heart problems tell the doctors I
had adriamycin. Nobody knows why it still hurts to sit.
Now that I have passed four scans this year at 3 month intervals, he is
cutting me back to every 4 months for next year - March, July, November - so
I don't need to go there in the snow and ice (depending on how the first day
of spring 2005 treats us). My present for this year.
Then I spent half an hour with the customer billing assistant and the
insurance company trying to figure out why I was being billed $2.89 in
addition to having paid the ^$8000 deductible. THe insurance co tried to tell
me that was part of my 70% of the $10,000 over the first $5000 but I had paid
it all. They will all investigate. I suggested it would be cheaper to just
cancel the bill. I vaguely recall the hospital sending me one $2.89 credit
and one $2.89 bill and promising to apply one to the other. Probably someone
did only half of this procedure. Got to find the papers for them.
We looked at the 3:30 cafeteria offerings and decided against canned vegetable
soup with salty cold pizza and feasted at Dinersty for $4 each including soup
and eggroll. And biked back in the melting snow. Next appointment Friday
with the bone doctor then four months off. I will catch up on sleep tonight.
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keesan
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response 429 of 475:
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Dec 4 02:08 UTC 2004 |
Today I showed up 15 minutes early for my 10:15 orthopedics appointment to
let the guy know he fixed my heel pain and see if he had any new ideas. There
was a shortage of residents and we waited until nearly 2:00. While waiting
I talked to another patient who spent 8 months in a body cast (she said she
could poke a scratching implement through holes in it) after back surgery and
is now unable to work. She takes care of her mother, who spent 10 months
(!!!!!) in the hospital with peritoneal cancer, including surgery,
chemotherapy, physical therapy. We compared diets. Her mother's sense of
taste is still not back. She could not handle sugar, or fruit, and also had
dietary restrictions due to an ostomy. Was too weak to sit for a long time
but regained the ability to walk eventually through rehab. Her fingers are
still numb. It has only been four months since chemo ended so I let her know
it can take a year or more to recover from therapy.
My appoinment consisted of him telling me he was sorry he kept me waiting so
long and there was nothing he could think of to fix my problem. My problems
felt pretty insubstantial by then, comparatively.
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keesan
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response 430 of 475:
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Dec 22 01:24 UTC 2004 |
Progress report. My hands have mostly stopped hurting now that I put the
keyboard on top of the wristrest in the keyboard drawer so I cannot rest them.
I am hoping the sitbones can eventually be cured that way if I can find some
way not to sit on them.
Apparently it is common to get cracks on the corners of your lips during and
after chemotherapy, but it is also a sign of riboflavin deficiency. I have
no idea how the chemo and the vitamin are related, but I looked up common
foods containing it: milk, oily fish ($1/15 oz mackerel at Kroger), beet
greens (we have lots in the freezer) and yeast. The Chinese food store has
large jars of pink distiller's yeast, salty, for $1. One or more of the above
is reducing the symptoms, which also include a scaly nose.
This week I noticed that the hot flashes, which for 15 months have been 45-50
min apart in warm and 90-120 min in cold weather, are now 3 hours apart or
more and may be skipping nights entirely. 4:30 7:30 10:30 (then 11:30 ;=()
Perhaps the zero degree weather or the 50 degree house are helping?
Experiments in not sitting: we found another well-padded office chair at the
curb in need of some wheels. It works without them. The foam donut does not
work - it puts the weight right on the bones. Toilet seat on bucket worked
until I fell off it backwards during a phone call. (Open end up). So now I
am trying it on a milk crate (open end up) which is more stable but a bit low
for typing. I could try two of them but then I might fall over again.
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keesan
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response 431 of 475:
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Mar 24 04:30 UTC 2005 |
One more CT scan down, this past Monday. After I specially requested a
smaller IV needle they got permission to use size 22, which hurt much less
and did not get blood all over the floor like the bigger needles all did.
They need to use an IV instead of an injection because the iodine contrast
solution gets pumped through by a machine to speed things up. I was in and
out in about 5 minutes. Two years ago it was 20 minutes and I had trouble
holding my breath long enough. This new machine also has a motor to raise
and lower it so you don't need a chair to climb up, which is handy since one
arm is not very movable with the IV in it. The lady who runs the checkin
remembered that I want unrefrigerated 'berry' flavor - just like a restaurant!
They have signs asking people not to eat while in the waiting room because
patients have to fast 6 hours. I fasted about 15 rather than getting up to
drink water in the very early a. m. We celebrated with lunch at the hospital
cafeteria. Jim got his usual pizza inside the crust ,and I got salty mashed
potatoes with two kinds of frozen vegetable. We looked very briefly at the
plastic box of General Tso's imitation chicken - deep fried breaded tofu with
very little rice and vegetables'. Next Monday they will do a blood test and
the doctor will tell me I am okay.
I talked to someone who is down to CT scans every 4 months (like me)
but has to continue for the rest of her life due to a lung problem. She also
needs oxygen via a tube 24 hours a day or gets short of breath.
I keep feeling lucky. Lots of people there in wheelchairs and someone
walking back and forth in the hall (they put up those yellow plastic signs
labelled 'cleaning floor' for him to walk between) to make sure he could walk
and breathe at the same time. I recall doing that before I was discharged.
My 86 year old friend who had stomach cancer surgically removed said
finally her digestion is back to normal but now she has a heart problem -
pulse 118 (like mine was when I was sick). She has been going dancing again.
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klg
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response 432 of 475:
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Mar 24 12:01 UTC 2005 |
Notice how she doesn't object to new medical technology (e.g., improved
scanner) that was developed because of our health care system (as
opposed to the sadly-lagging socialistic systems) when she personally
benefits from it.
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scott
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response 433 of 475:
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Mar 24 17:13 UTC 2005 |
Nice to see how cancer survivors support each other, klg. Somebody run over
your dog or something?
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klg
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response 434 of 475:
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Mar 24 17:28 UTC 2005 |
(No. But I killed the Easter Bunny on the way to work today. It came
out of nowhere on a dark stretch of road. Then thud ... thud. Sorry,
folks.)
Nonetheless, I am only pointing out the inconsistencies of, one one
hand, railing against the system in the abstract and, on the other
hand, expressing appreciation of it when it serves your purposes. It
has nothing to do with being supportive or not supportive. Perhaps if
she were to realize what she's doing she might change her position on
the matter. And, anyway, she does not even read my posts, so what's
the difference what I say?
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twenex
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response 435 of 475:
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Mar 24 17:33 UTC 2005 |
I am only pointing out the inconsistencies of, one one
hand, railing against the system in the abstract and, on the other
hand, expressing appreciation of it when it serves your purposes.
If you're so against that, sonny Jim, why do you make a nasty habit of it
yourself?
Because you're a self-righteous, rightwing hypocrite, that's why.
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keesan
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response 436 of 475:
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Mar 24 20:25 UTC 2005 |
Did I miss anything important?
I just calculated that this year my post-insurance medical expenses (not
counting insurance, dental, and eyeglasses and any drugs) will be down from
$8000 to about $6700, and next year $5700 - down from 4 to 3 to 2 CT
scans/year at about $4000 each discounted to about $3000. I pay the first
$5000 then 30% of the rest. I already donated this year's savings to a
tsunami relief fund.
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remmers
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response 437 of 475:
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Apr 20 12:46 UTC 2005 |
Re #436, first sentence: No.
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keesan
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response 438 of 475:
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Apr 20 16:33 UTC 2005 |
Just got my bill for $3971 for the CT scan, not including a couple hundred
dollars of blood tests. The insurance discount knocks off about $1000. Total
for the year will thus be only about $10,000, of which the insurance pays 70%
of amounts over $5000. Unfortunately since I have a preexisting condition
I cannot switch policies every 2-3 years along with all the other healthy
people, when the premiums go up. This year they just went up 25% and they
will probably be double what they started at by the time I am done with CT
scans. $1500 insurance for me, maybe $1800 for Jim, $5000 deductible, $1500
copay, and some dental bills. $10,500 medical expenses this year if nobody
actually gets sick. We got glasses last year.
I am still trying to get my strength back. I can now slowly run about a half
a block, or a block if I force myself. I walked a few blocks with the
neighbor who recently finished lymphoma therapy and was forced to stay in bed
for a couple of months because her hip was affected and was half-gone. She
had assumed she would never get her mobility back, apart from finally getting
off crutches, so I told her not to give up for at least two years. Yesterday
we met someone walking around Saginaw Forest with one crutch (she had recent
hip surgery) and her friend had a plastic cast on her wrist.
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klg
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response 439 of 475:
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Apr 20 16:45 UTC 2005 |
http://usuarios.telviso.com.ar/iscrc/eng/howtofindoutifyouqualify.htm
"How To Find Out if You Qualify
"Evaulation
"It would be best for a patient to come to our facilities for
evaluation. However, this is not always possible for an initial
consultation. For us to evaluate you as a candidate we will need to
have copies of the following:
"Original X-Ray (at time of injury)
Current X-Ray (6 Mos. or Less)
CAT Scan (6 Mos. or Less )
MRI (6 Mos. or Less)
"Your Medical Chart if available. If not, a Medical Report such as a
discharge summary is sufficient.
"If you are located far away we can handle this by mail. Just send us
this information and our neurosurgeon will review it to see if you are
a candidate. The other option is for you to come to Mexico for an
evaluation in person. If you wish, we can arrange for the X-Rays and
CAT Scan/MRI to be done in Mexico. We have made an arrangement with a
Radiology Lab to provide us with these services at very reasonable cost
to you. The cost for X-Rays and a CAT Scan or MRI is approximately
$750."
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klg
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response 440 of 475:
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Jun 11 02:17 UTC 2005 |
A radio report stated that moderate daily alcohol use (i.e., a drink a
day) appears to reduce the risk of developing lymphoma.
Good news from my radiation oncologist today. It's 3 yrs since my tx
ended & don't need to make any more visits unless I want to.
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keesan
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response 441 of 475:
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Jun 11 03:49 UTC 2005 |
Congratulations. I need to have regular CT scans for five years. You must
have had something localized. Thanks for sharing your good news.
On the most recent garlic mustard pull I was pulling with someone whose friend
from 40 years ago is in the hospital with lymphoma, and apparently in worse
shape than I was because she is in pain and can't eat, so I am going to go
along on a visit to assure her than things can get better soon. She had only
one chemotherapy session so far.
People are still commenting on my 'long Afro'. I am one of those people who
had curly hair to start with and ridiculously curly hair now. It is supposed
to last about two years. I am looking for the people who accept donated
hair to make into wigs for other people who lost their hair. Locks for Life.
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keesan
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response 442 of 475:
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Jun 11 03:58 UTC 2005 |
Locks of Love is a program for donating hair to make wigs for children and
no grey hairs are allowed and they need at least 10". Some other places want
12", a few only 8", and one 6", and that is measured in a ponytail. Mine is
so thick I can't tie it into one and it is no more than 5" overall so I guess
I will just have Jim cut it off. No way am I going to let it grow another
5" (10 months). Synthetic wigs are more easily cleaned.
And much cheaper to make. Great Britain provides free wigs for patients (not
human hair, but synthetic).
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klg
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response 443 of 475:
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Jun 12 17:00 UTC 2005 |
(Thanks, But medical oncologist visits & CT scans will be continuing
long into the future. I just don't need to go back to the radiation dr.)
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keesan
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response 444 of 475:
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Jun 12 22:28 UTC 2005 |
How many years of CT scans for you?
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klg
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response 445 of 475:
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Jun 13 02:49 UTC 2005 |
Haven't really been told.
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