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Grex > Health > #89: Sindi Keesan's Lymphoma Journal Part 3 |  |
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| 25 new of 475 responses total. |
keesan
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response 446 of 475:
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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.
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klg
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response 447 of 475:
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Jul 27 00:35 UTC 2005 |
So your prostate reading is o.k.?
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keesan
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response 448 of 475:
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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).
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keesan
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response 449 of 475:
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Jul 27 18:57 UTC 2005 |
The nurse practitioner emailed me that my CT scan was fine, and my blood tests
showed platelet count of 114,000 when normal is 150,000 to 400,000. I am
usually in the middle of normal. I noticed that a cut bled a lot recently.
I did some web research and discovered that prednisone, which I took until
a week ago, for 10 days, 15 mg/day, for systemic poison ivy, reduces
lymphocyte count and elevates platelet count (and is given to elevate platelet
count). A symptom of withdrawal is reduced platelet count, probably because
the body stops making the natural equivalent of prednisone (a steroid hormone)
while you are taking the drug, and has to get back to making this hormone,
which controls the production of other things like platelets. Taking
prednisone decreases your immune response, so it is given to people with
autoimmune diseases, who then get bacterial infections. I also noticed
diarrhea during and after I was taking it, finally going away. Other
withdrawal symptoms are headaches and nausea, but I got those during not after
(threw up 10 times after the first pill, at night), maybe because of
fluctuating levels.
Luckily my count was not low enough to require treatment, she said. Also not
low enough to redo the tests. The low platelets might be why they had so much
trouble with my veins - or low something else?
Prednisone also affects people's menstrual cycles but I don't have one any
more because chemotherapy causes premature menopause. It did, however, put
the frequency of my hot flashes back to what it was over a year ago. I notice
that the frequency is 90 min in the afternoon, 50 min at night, probably due
to gradual decline in estrogen over the day. Sort of hard to throw off the
covers when it is too hot to sleep with covers. Finally got one good night's
sleep last night anyway, when it dropped to 60 out, 70 in.
The body normally puts out about 7.5mg of prednisone equivalent (probably for
the average person and I am smaller) so adding 15 mg for me was like
quadrupling normal levels. During chemotherapy I had to take 100 mg.
I also had the same side effects of being 'hyper' and having trouble sleeping
(I was lucky if I got 5 hours this time). A withdrawal symptom is sleepiness,
and I have been falling asleep in the afternoons or evenings, once while
visiting friends. I have to apologize and offer my excuse.
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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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