response 428 of 475:

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.

response 430 of 475:

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.

response 432 of 475:

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.

response 434 of 475:

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?

response 436 of 475:

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.

response 438 of 475:

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.  

response 440 of 475:

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.

response 442 of 475:

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).

response 444 of 475:

Jun 12 22:28 UTC 2005

How many years of CT scans for you?

response 446 of 475:

Jul 26 22:45 UTC 2005

One more CT over with.  I arrived 20 minutes early and then spent 40 minutes
convincing them that I really did need both the oral (barium sulfate
suspension) and the IV (iodine) contrast medium.
Someone else was trying to convince them she was allergic to one or both of
these and was supposed to get some alternative.  I recall my first CT scan
when they said not to drink the oral stuff then gave it to me AFTER the IV
and I had to wait 2 hours with IV in my arm, which made me suspicious.

While waiting around the extra 40 min I talked to someone in remission from
stage 4 lymphoma who also had pneumonia, because it was squeezing her windpipe
and lungs (it was in one lung), and she was still taking pain medication but
her blood counts were finally closer to normal.  Part of the pain was in her
bones which hurt because of the medicine given to make them produce more white
and red blood cells.  Someone else told me about her every-2-week treatment
for breast cancer that got into her liver.  She will be doing this forever
(with luck, assuming it continues to work) but has only been 22 months.  She
used to throw up for 5 days after each treatment but they found a better
antinausea drug.

Someone else was holding her nose over the banana suspension so I recommended
berry for the second dose.

They used a smaller (no 22) IV needle which went it right the first time with
no blood on the floor, which is about the only thing that went right today.
The IV would not work right, until the technician tried out about ten
different arm, wrist, and hand positions.

The doctor's appointment went fine and involved no blood draws.  Jim was told
maybe he should have B12 injections because low B12 meant you were not
absorbing it properly.  I explained he was not eating any B12 (animals).

After a bit of food and water (having had neither since supper) I went for
my blood draw and it took three tries, all painful, to get one working, which
landed on top of the IV hole and is still purply blotchy and hurts.  I was
unthinking enough to yell ouch on the second one - which you do NOT do in a
room full of people about to be jabbed similarly.  

Jim is getting tested for selenium because he read it prevents cancer if you
add it to diets that are deficient in it.  I tried to convince him that a
whole grain diet high in beans, vegetables, and fruits, would be a lot less
deficient than the typical hamburgers and fries diet.

We looked at the cafeteria offerings (vegetable soup or meat or salad) and
came home to make our own.

Next CT scan will be in November.  If I get the expected good results on this
one we plan to take a month off before that to travel east.

This particular doctor does not recommend unnecessary tests so we got only
what we asked for - no mammograms, PAP smears, PSAs, glucose or cholesterol,
colonoscopies.  He advised us to avoid smoking and to wear seat belts.  We
countered with bike helmets.  Heart disease kills five times as many Americans
as cancer and the five most common cancers are not ones we are prone to get
genetically or environmentally.  We both had blood pressures of 102-104/60-62,
no family history of early circulatory problems, good diet, exercise, no
drugs.

response 448 of 475:

Jul 27 14:08 UTC 2005

Jim's was fine two years in a row.  He asked about colonoscopy and was told
to do a home occult fecal blood test instead ($24 charge by the lab to
evaluate it, or the doctor thought maybe you could get the chemicals to do
it at home yourself somewhere).  The insurance pays 80% of lab tests and
general exam up to $400.  I only got the usual three blood tests for cancer.

Unfortunately our doctor friend who sends me the results immediately is out
of town, so we will have to wait a month or two for lab test results, or a
week for CT scan once the lymphoma specialist finds time to look at them. 
We were told to fill in a comment form by this doctor, who is trying to
convince the hospital to let doctors automatically email test results to
patients without having to reformat them first and look up email addresses
etc.  He is a 'real' doctor, not an intern, and says he will be too busy all
week on the wards to deal with test results that are normal.  He also said
to suggest they provide a way to scan things into patient records that the
patients bring in (such as my typed summary of our health).

response 450 of 475:

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.

response 452 of 475:

Jan 4 17:41 UTC 2006

Congratulations on your checkup.

Why do you climb stairs 6 times per load?