Item #87 entered by Ken Josenhans(krj) on Thu Sep 25 20:52:42 2003
Sindi Keesan's Lymphoma Journal
This item is Sindi Keesan's continuing journal. The first section
is in the previous Agora conference, agora46, item 167. ( item:agora46,167 )
480 responses total.
#1 David Hoffman(dah) on Thu Sep 25 20:54:31 2003:
Looks like SOMEONE forgot to switch logins. Oh well. At least now we know
who Sindi REALLY is. (It's not like someone like that could be read, you
know.).
#2 Sindi Keesan(keesan) on Thu Sep 25 21:50:01 2003:
Summary of events - I was diagnosed in August with 'large B-cell lymphoma'
- stage IV intermediate grade after several months of weight loss and other
symptoms, which was first caught by a couple of blood tests (complete blood
count - abnormally high white blood cell count, and complete metabolic panel
- high alkaline phosphatase value) done routinely. I was eventually down to
93 pounds, very tired, shallow breathing, while the testing was going on one
test per week (CAT scan, biopsy of the spleen which detected two masses =
tumors composed of lymphocytes which are part of the immune system). I also
had some enlarged lymph nodes in the abdomen and a lot of fluid produced by
the cancerous lymphocytes accumulated in the space around my lungs (which
makes it stage IV - just spleen tumor would be stage III).
I called a doctor friend after the spleen biopsy got infected and he
personally drove me to the hospital the next day, where I spent ten days
fixing the problems caused by the tumor (fluid drainage, transfusion since
I was not making enough hemoglobin) and had my first chemotherapy. I had a
nice private room because all the rooms for hematology/oncology are private
due to people's reduced immunity. No flowers allowed on that floor. They
eventually decided I was stabilized and let me go home where I could sleep
without being interrupted for blood pressure readings, and eat real food.
Hospital food is all low-fat high-sugar 'heart smart'. Jim Deigert (jdeigert)
spent most of his waking hours holding my hand during minor surgeries and
making sure that I ate something and he is now still feeding me while I
recover from the exhaustion due to the lymphoma and the therapy, and gain back
enough weight that I can build back the lost muscle.
I had a second chemotherapy last week Monday. The first one consisted of
three drugs which prevent cells from dividing and therefore wiped out my white
and red blood cells. On the 10th day I had very little immunity left and was
bleeding easily when I blew my nose. My count of neutrophils (the cells that
attack infections) had dropped from a high of 35 to a low of 0.1. The high
value was due to fighting off the cancer and the low value to the drugs.
The normal value is 1.4-7.5
Three weeks after the first chemotherapy 'absolute neutrophils' (k/mm3) had
gone back up to 8.3 (slightly above normal - I was catching a cold). I fought
off the cold okay. On the sixth day after treatment I developed a thrush
infection of the mouth (fungus) which I had had for a large part of the first
cycle but it stopped bothering me after 3 days (which I thought was due to
taking the proper antifungal drug for it).
Today (10th day of the second cycle) they had me come in for another blood
draw (they took one vial of blood). I was expecting 0.1 neutrophils again,
and low platelet count (platelets work to clot the blood) and other low values
showing that my bone marrow was still not back to producing blood cells.
The nurse came out and told me to take off my mask. All of my values are
normal. Neutrophils 5.4. I can have visitors for the next ten days and
probably for the past few days it would have been okay. I have no idea why
my values are normal this month and were so low last time but I am not
complaining.
Today we also pushed my walking ability to the limit. I had been bedridden
for a couple of weeks before hospitalization due to extreme fatigue and then
ten days in the hospital was tied to near the bed by an IV drip (for
rehydration, antibiotics, etc.) and a tube delivering oxygen to near my nose,
so my muscles continued to disappear. I have been walking around the house
since then, and after the first few days of having trouble even sitting up
in bed Jim dragged me outside to walk to the near corner, then the far corner,
then both, then yesterday we walked around the library and bank and also all
the way around the block, which I thought was the limit.
Today we walked from one hospital building to the other and then the cafeteria
(where we had something unbelievably salty for lunch - JIm ate half of my
'chimichanga' and his own pizza) and then back to the original building and
then the car. I was really wobbly by the end, and I had to stop once in a
while and sit, but this was about 10 blocks I think. Next time we will go
farther around the neighborhood but there are no nice comfy padded benches
to rest on, in fact I cannot even sit on the park benches unless we take along
cushions because I have no built-in cushioning.
My pulse when I entered the hospital was 120 resting. It is now 100 after
exercise and has been down below 90 resting (but went back up after I spent
a few days in bed after chemotherapy).We had our.
#3 Sindi Keesan(keesan) on Thu Sep 25 22:20:08 2003:
Got interrupted by a beginner trying to send telegrams (it was empty).
We had our first visitor this evening. Someone we had met this spring on a
plant walk, who had invited three of us to lunch and to pull invasive garlic
mustard from the local city park (which she had helped the city to acquire).
I had promised last spring to introduce her to some friend with a nice flower
garden and then had Jim call to apologize that I had not done so. She stopped
by with homemade cookies and we chatted about her family's medical experiences
- son had brain surgery at age 4 to remove a tumor, husband has been treated
twice with tuberculin virus to boost his immunity in the bladder to fight off
cancer. She said the second treatment nearly killed him. They inject the
virus just into the bladder. He also has had strokes. I am lucky.
We plan to walk in her woods again when I am a bit less wobbly on my feet.
First I have to walk the several uphill blocks to Eberwhite woods, prove I
can cross Liberty St. without getting killed (there are now helpful islands
in the middle every so often), and walk around there for a bit. I think I
will spend the next two days with sore muscles first.
The cancer center pharmacist gave me an 800 number for Bedford Labsk which
makes one of the three chemotherapy drugs used first cycle. (The second cycle
also included a monoclonal antibody specific to my type of lymphoma - which
is the only one of the drugs without side effects after treatment). I have
a very rare side effect in that I have nearly lost my voice and keep choking
on liquids and even on my own mucus (I had a cold) due to a swollen throat.
The company will check this out and contact me and/or the doctor in case I
need the dose reduced or the drug discontinued. I am hoping this is a
temporary effect, like the bone marrow depression, hair loss (I only lost a
little bit for a few days so far), and nerve damage (tingly fingers and shaky
hands - will go away after treatment ends in January, probably).
I don't have the problems some people have - no nausea, no appetite loss
(perhaps they did not lose as much weight as I did first or were fatter to
start with). No reaction to the antibody at all (fever, chills, drop in blood
pressure). I don't need surgery (other than the two fluid drainages, bone
marrow and spleen biopsy during hospitalization) or radiation. The spleen
tumor seems to have disappeared. They will check with another CAT scan in
a month. I have four more chemotherapies to go and at least 15 pounds to gain
(6 down - in one month). I have the easiest type of cancer to treat but it
tends to come back again after 5-10 years and people just repeat treatment.
I am not strong enough to work (self-employed translator) nor have I found
any chair padded enough to sit in for long as my bones all stick out.
I referred someone who found my website and had something (poetry?) in
Albanian that she wanted translated, to a native Albanian with good English.
#4 Sindi Keesan(keesan) on Fri Sep 26 09:34:53 2003:
My platelet count is now 433 - normal being 150-450 (my blood clots well)
and my lymphocyte count is 1.1 (normal being 0.8-5.0). This means I have low
normal lymphocyte counts. The lymphocytes found in blood are small or medium,
the large ones being found in lymph node. It is the large ones that became
abnormal (uncontrolled multiplication) so this count is not related to the
cancer, which is 'large B-cell lymphoma'. I don't know how the large ones
got to my spleen to form a mass - perhaps they do travel in blood sometimes.
My hemoglobin is 12.7 - normal is 12.0-16.0 - meaning I am making my own
hemoglobin since this is slightly higher than after transfusion (10.8). In
the hospital it went up on its own to 11.3 at the time of discharge and was
12 three weeks ago. It was 13.1 just before chemotherapy so this means
hemoglobin production was slightly depressed by the chemotherapy.
There are also various other measures of blood iron - red blood cell count,
hematocrit (the percentage of your blood that is red blood cells, determined
by centrifuging it). Mine is 38.6 (normal 35.0-48.0). When my father was
on kidney dialysis at home my mother had to take his hematocrit every
dialysis. We had our own centrifuge. She hated the sight of blood.
When I was in high school biology we were also supposed to prick our fingers
and take blood to look at on a slide. I was not good at this and nearly
fainted trying so the teacher had to take mine. I recall having a high
hematocrit (about 45?) and also a high lung volume (which I need to get back)
and lots of white blood cells.
Red cell distribution width - high ???
My alkaline phosphatase is 133, normal being 30-130. In July I had an
abnormally high value, which indicated problems. Creatinine low normal,
sodium and chloride high normal (before the salty lunch), potassium ditto.
Muscles sore.
#5 Reverend Salvador Dali Parton(happyboy) on Fri Sep 26 14:06:59 2003:
awesome sindi, you sound like you're on the upswing!
#6 Sindi Keesan(keesan) on Fri Sep 26 16:04:49 2003:
Yes, at least as far as blood values. I don't know why some people need to
get injections of Neupogen and I did not - as I said, I feel very lucky
compared to just about everyone else who has been through this.
Today someone in Spain (another translator) wrote me that he also had
'mucositis' which somehow combined with the nausea to make it even harder to
eat. Lots of thick mucus all the time. I also have been coughing up mucus
- wonder how that is related to the voice/swallowing problem. One more thing
to tell the drug company, I guess. No word from them.
Jim called to find out why the mattress pad that they mailed last Thursday
was not here in 2-3 UPS business days. They had not mailed it yet.
This morning before I fell asleep for 1.5 hours we went for a walk and I made
it up the hill to orchard remains at the local nursing home. It is mostly
grass now but also about 10 apple trees (a couple of which are pretty good),
two pears and one sour crab apple. In a week or so we may try drying apples.
The second batch of dried pears is good. The pears come from full-size trees
maybe 30-40 feet high. Nowadays orchards are on dwarf trees. So the pears
we get are those that ripened enough to fall on the grass. There was a man
there from Pinckney with two 5-gallon buckets collecting fallen apples to put
out for the deer so he could shoot them. On the way back from the hospital
we also spotted a small patch of apple trees between two streets, two of which
have good apples. There must have been a lot of orchards in town once.
I recall picking apples from one that used to be on Liberty in the 70s before
it became housing.
I was going to suggest walking in another direction but discovered Jim asleep
in the kitchen and sent him to bed. I think I am over the cold faster than
he is.
The AIWA finally went back together last night (apart since Saturday). Now
the CD tray won't even open but since it won't play who cares. I messed up
the preprogramming for #1 again but set CBC, WKAR (Lansing) and Toledo to 2,
3, and 4. I cannot imagine someone programming 10+ stations.
Reading Gaskell's Wives and Daughters, where people continue to die young of
some undefined disease, or consumption, and there are also two invalids slowly
dying, and widows remarrying widowers, and children dying in infancy of
scarlet fever.
I continue to get spam about new ways to lose weight fast. I was discussing
Prilosec (a drug given with prednisone to protect the stomach lining) with
another cancer patient and discovered that my spam filter was catching the
subject line. I am filtering on the string 'lose'.
Today I weighed 100 pounds, a milestone. I never thought I could gain 2
pounds per week even trying. Sept. 1 I weighed 93 pounds. In the hospital
my weight fluctuated depending on the ratios of the saline drip and how much
Lasix they were giving me (which took the fluid back out). It was up to 110
one day that I had edema in my feet.
#7 Sindi Keesan(keesan) on Fri Sep 26 20:16:03 2003:
This afternoon we walked to the far end of Jim's block, then the next long
block, around that, and back. Just under 1/2 mile if these are 10 blocks to
the mile. Halfway to Main St. My legs are still feeling wobbly this evening.
The dried pears came out like candy. We are discussing how to blacken the
skin of an eggplant for making ajvar while also baking the inside. You mash
the baked peeled red peppers (that we did a few days ago) with mashed eggplant
and some fried garlic and onions and then maybe fry the result.
The hospital billed us for Jim's non-diagnostic blood tests which I had
carefully had them mark S-preventive so that they would bill them properly
to the insurance company and the PPOM company that the bills go through (and
get discounted through). First time around they billed this wrong, I had
called and asked them to fix it. Still not fixed. The insurance does not
pay for diagnostic tests (unless you go over the deductible) but it does pay
80% of $400 worth of diagnostic tests. U of M is not going to get paid
anything until they get the billing redone. In my case I am better off having
this billed as diagnostic since the insurance will pay for it (I am over the
$5000 deductible already by a large amount). I bet they billed mine as
preventive. My bill has not arrived yet. The statements are arriving in
rather random order.
We are invited to the annual solar homes tour two days before my next
chemotherapy and may go (in a car, hardly appropriate). One of the two
sponsors is a friend who installs solar panels, and there is a drawing for
a solar power system which Jim plans to use for his hot water. He is sure
he will win. He once won a roller shutter for a patio door. (He put it on
a double window as he has no patio door). And a Cleveland Rocks mug for me.
Leslie Science Center and the Recycle Ann Arbor 'En-House' exhibit are on the
tour along with four houses (one of which probably belongs to our friend)
with solar water heaters etc. This is one week from now. I biked to the one
last year, which included houses all over Ann Arbor, and met the architect
who designed one and was still living in it since the fifties. His double
glazed windows were still working properly, to his amazement.
#8 Still Maxin' and Relaxin' the the Pacific NW(jaklumen) on Fri Sep 26 21:23:35 2003:
Keep on doing good, Sindi =)
#9 Sindi Keesan(keesan) on Sat Sep 27 12:19:10 2003:
Yesterday my landlord called here to tell us inspection is Tuesday and put
9V batteries in the three smoke detectors. (Every inspector had their own idea
on where to put a smoke detector near the kitchen so as to wake someone
sleeping in the bedroom that nobody every sleeps in.) And make sure the
windows all have locks that work. And his answering machine was not working,
did we have another he could use...
Jim got to talking with him and his brother is also doing chemotherapy and
had a white blood cell count in the thousands. (It is supposed to be
somewhere in the thousands - 1-5 k/mm3 means 1000-5000). Epidemic of cancer?
Is there anyone reading this who does NOT know someone else who had cancer?
#10 Sindi Keesan(keesan) on Sat Sep 27 16:27:56 2003:
Our morning stroll turned into an apple-tasting event. The orchard at the
end of the street next to the nursing home has about 20 trees left - the rest
has gone to grass. The pear tree branches try to grown straight up and they
were both already about 40' high, and apples a bit shorter, so we just picked
up windfalls and sampled. Several tasteless red delicious. A couple of mushy
and almost as tasteleses McIntosh. A couple of nice tasting red apples with
soft white fless. One tree still has most of its large green apples and they
taste like Granny Smith. We stook home a sampling for drying and oatmeal,
along with the last of the pears. Our company including two squirrels chasing
each other - I don't know why they bothering eating all of Jim's pears. Also
two very large crows. I sat on the grass wishing I were not allergic to
beestings.
The early evening walk is scheduled to be on the half-circle new road with
80s and 90s houses that was built where there used to be a swamp (left for
drainage purposes). They are all enormous and we call them garage houses as
that is about all you see from the street. Some day the fashion may switch
back to something cheaper to build and heat. THe neighborhood is mixed - west
of Jim's house mostly 20s and 30s houses with porches, then 40s Cape Cods and
a few infills of long narrow 50s houses, some flat-roofed 60s duplexes.
Maybe I should be doing aerobic exercises to get my pulse down from 100
resting? My muscle strength is improving but not the pulse.
#11 Sindi Keesan(keesan) on Sat Sep 27 21:46:15 2003:
Today I got a bill from the hospital for $138 worth of blood tests for Jim
(routine) that the insurance was supposed to have paid 80% of (up to $400)
that someone apparently did not bill correctly. Also a second bill from St.
Joe's for a test that was done at U of M - I know because I personally carried
the sample to U of M. Pap smear. With the name of the doctor on it again.
Someone at St. Joe's had promised to fix this about a month ago, after the
accounting person at teh doctor's office claimed she had nothing to do with
it. I think I had better fax her the bill and ask what is going on. $38.
I dare St. Joe's to prove they did anything for the money other than generate
bills. The doctor usually has tests done at St. Joe's but my insurance
insisted on using U of M. The first person I called at St. Joe's denied that
St. Joe's had any responsibility and told me to call the doctor, who told me
to call St. Joe's.
#12 Tim P. Ryan(tpryan) on Sun Sep 28 14:30:09 2003:
I'b beginning to wonder if instead of imcopitence, it is out
and out fraud. My freind in Florida had to clear up bunches of bills
that his dad incured before passing away. I can see how easy most
people pay to get it past them.
#13 Sindi Keesan(keesan) on Sun Sep 28 21:57:16 2003:
My friend in Budapest, who was a roommate at a Slovene summer school in 1973,
tells me the Slovene for spleen is revnica. I now have no excuse for not
writing my Slovene friend in Trieste whose sister just went through
chemotherapy for stomach cancer.
Had a nice visit from Ken and Leslie this evening. They sampled our dried
fruits and discussed music with another visiting friend. This time I was able
to sit throughout the visit. Two weeks ago when Ken visited I gradually
dropped onto the pillows. He brought five more Baroque and Classical CDs to
listen to from Friday evening through Sunday evening instead of jazz, folk,
and rock music (also 4-7 weekdays). Leslie will try to make a CD of her Don
Giovanni performance if she can find the time.
Today's walk was in a neighborhood of rather boring and similar 60s duplexes
which they tried to vary by alternating brick and plywood trim.
#14 Sindi Keesan(keesan) on Mon Sep 29 13:19:52 2003:
Bedford Labs sent me to 35K MSWORD documents about the side effects of
Doxorubicin. (2K more and grex would have refused the emails). Also they
tried to report my adverse reaction to my doctor and got both my name wrong
(Bea) and her email address. Nobody can understand me on the phone.
Now I need to decipher the MSWORD. I hope this 486 at Jim's house has Antiword
already on it but I have a few other programs that should also work if I don't
care about correct formatting.
St. Joe's says the $38 bill was because my doctor 'requisitioned a pap smear'.
First time I heard of being billed for a requisition rather than an actual
test. I am certain they never got my pap smear as I carried it physically
to U of M to be looked at. They will call back. The person I talked to last
time (second time I called) is not in today.
U of M Billing finally figured out that the doctor put down the wrong code
for preventive care. Meaning I have to call this doctor and try to argue with
the accounting person there who hung up on me last time I called about teh
St. Joe's problem claiming she had nothing to do with it. Perhaps I can get
the insurance company to phone her and explain how to bill properly?
I expect about 2K of text to come out of the 35K MS files. Wish me luck.
The doctor does not have email. The fax machine is turned off most of the
time. They were out to lunch at 12:30 and 1:00.
#15 Sindi Keesan(keesan) on Mon Sep 29 14:01:57 2003:
I read the 1-page text version of the WORD file and I apparently have
'mucositis (stomatitis - esophagitis)' which can lead to ulceration and severe
infection. The mucus only started this second cycle. So it is not just from
having a cold. Maybe they should discontinue the Doxorubicin which is what
is causing it. ANother translator in Spain had mucositis. I had not reported
the mucus as it just started - I cough it up every hour or two after a
coughing fit.
This information was on the package insert. The pharmacist did not need to
look it up in Micromed. I ought to find out just what esophagitis is now.
#16 Rane Curl(rcurl) on Mon Sep 29 14:41:51 2003:
Stomatitus is an infection of the mouth causing ulcerative lesions of the
oral mucosa. There are lots of causes (infections, trauma, caustics,
regurgitation, etc). Esophagitis is the same thing of the esophagus.
#17 Todd(tod) on Mon Sep 29 14:56:07 2003:
#18 Mary Remmers(mary) on Mon Sep 29 15:32:11 2003:
Tod, do you have ALS? I've just read about the Desert Storm / ALS
link.
#19 Sindi Keesan(keesan) on Mon Sep 29 16:10:32 2003:
I wonder if esophagitis can be aggravated by spending too much time lying down
in bed. One cause of it is gastric reflux which would be treated by reducing
stomach acid using Prilosec but I was taking that when this started. I will
be spending a lot less time in bed now. In the hospital the head of my bed
was elevated so I could sleep on my back. I stopped having to sleep on my
back a few days ago when my ribs stopped hurting (due to pleural effusion -
fluid in the wrong place similar to what was around my lungs). Elevating the
head of the bed reduces gastric reflux. The problem developed after I got
out of the elevated hospital bed.
I think I have figured out the many things that went wrong with the billing.
1. The doctor is supposed to fax U of M the correct diagnosis code for Jim's
lab tests (preventive instead of diagnostic).
2. We were both billed $7 by the doctor for taking 'hemoccult' (fecal occult
blood) samples but never got any tests done on them. I had to pay the full
$7 because they billed it as diagnostic instead of preventive - I paid it to
save time instead of money. Jim's only cost 20% of $3.34 after PPOM discount.
3. I was billed $38 for a pap smear done at St. Joe's. Apparently it was
really sent there to be analyzed.
4. I was given two samples to take to U of M, and told one of them was for
fecal leukocyte smear (white blood cells in feces) and one was my pap smear.
I submitted them as such. U of M never billed for pap smear but they did bill
for fecal leukocyte smear. They did not bill for hemoccult testing.
What I think happened was someone gave me Jim's fecal smear and told me it
was a pap smear. The doctor forgot to order hemoccult tests for both of us
after taking the smears. And forgot to give me my pap smear and sent it to
St. Joe's instead.
So I have paid $7 plus 20% of $3.34 (65 cents) for smears that were not tested
for fecal occult blood (one was tested for something else) and my pap smear
was sent to the wrong place, which means St. Joe's is billing me for it and
the insurance won't pay anything, so I suggested that the doctor pay my $38
- 80% of the St. Joe's bill plus $7.65 adds up to $38.65.
How many mistakes did the doctor's office make?
If they don't pay for their mistakes I will notify PPOM that this doctor is
not following the rules.
#20 Todd(tod) on Mon Sep 29 16:53:01 2003:
#21 Mary Remmers(mary) on Mon Sep 29 18:25:58 2003:
I was asking if you have ALS. I have no idea what
your response means. But there is no need at all
to answer the question if, for whatever reason,
you'd rather not.
#22 Sindi Keesan(keesan) on Mon Sep 29 19:17:50 2003:
Pulse after walking 120. Pulse 2 minutes after walking 96. Pulse while
sitting (leaning against pillows, actually) 92. Pulse while lying down after
having walked around the house a bit - 72 (shortly after awakening).
I had no idea sitting could make my pulse race.
The nursing home (past which we walked on the way to the orchard) has a new
looking garden area with lots of flowers, bird feeders, and seating, and some
memorial concrete 'bricks' with names in them. Got a few more pears.
#23 Sindi Keesan(keesan) on Mon Sep 29 23:51:00 2003:
Mail that I am sending to umich.edu (two doctors) is coming back to me with
'remote protocol error'. What is going on?
I found another website with a very long list of side effects of doxorubicin.
Apart from the lowered blood counts, I don't have ANY of the more common ones
(over 5% incidence) such as nausea. I DO have a couple with under 1%
incidence, lucky me - the laryngitis, voice alteration is listed as such.
I don't know if it is related to esophagitis, hopefully I don't have that.
I feel like my gullet is somewhat swollen. I wrote the drug company again
to see if they can find out whether this will go away some day.
Other effects are somnolence, insomnia, weight gain, anorexia, constipation,
diarrhea, erthyrodysesthesia and other words I did not look up. Maybe 100
side effects.
Tachycardia and bradycardia (heart rate faster or slower) and various sorts
of heart damage. I asked about that too - what are other people's normal lying
down and sitting pulse rates? Does your pulse go up 20 when you sit up?
#24 Joe(gelinas) on Mon Sep 29 23:57:38 2003:
(Try forwarding the message, with full headers, to postmaster@umich.edu,
Sindi.)
#25 Joe(gelinas) on Mon Sep 29 23:58:23 2003:
(I meant the rejection notice, not the original message.)
#26 Rane Curl(rcurl) on Tue Sep 30 02:13:15 2003:
I've had my recent mail to umich.edu rejected the same way. They have
a problem.
#27 Sindi Keesan(keesan) on Tue Sep 30 10:23:47 2003:
I had all the mail I sent rejected after that including some to other places.
I will try again tomorrow.
A friend sent me a copy of an Ann Arbor News article about Bexxar, the
radioactive form of Rituxan (sp?) which apparently was approved for general
use this June. I hope I don't need it but I sure timed things right. The
article says Dr. Kaminski plays classical piano.
Since I can't send mail through to Bedford Labs I may phone again and ask them
to find out how long the laryngitis is likely to last after therapy ends.
The third batch of pears is doing well. The tree is out of pears. Jim says
that our ajvar does not taste like the commercial stuff. I read him the label
- salt, sugar, vinegar. We did not add these.
I think the radioactive Bexxar may have been used primarily on patients whose
bone marrow was cancerous. They have no immune system left (perhaps due to
treatment?) so the regular antibody method would not be of much use since it
simply labels cells for attack by the immune system. The radioactive form
kills these labelled cells directly. But only 95% of B-cell lymphoma cells
have the protein needed by the antibody for recognition so neither method
would work on the unlucky 5% of people whose cells don't have that protein.
People are working on another antibody that recognizes another protein.
#28 Sindi Keesan(keesan) on Tue Sep 30 14:55:22 2003:
I read some more about Bexxar. For a few days to a week after treatment with
this drug (which contains radioactive iodine) the patient has to stay in a
hospital room, either private or shared with another Bexxar patient, with lead
screens around the bed to protect the nursing staff from the irradiation.
Hospitalization is to protect innocent bystanders from being irradiated by
the patient. This does not sound like a terribly safe treatment for the
patient but it is better than dying when all else has failed.
#29 Todd(tod) on Tue Sep 30 15:03:53 2003:
#30 Rane Curl(rcurl) on Tue Sep 30 15:06:55 2003:
It might be interesting to do it in a cloud chamber.
#31 Todd(tod) on Tue Sep 30 15:11:12 2003:
#32 Rane Curl(rcurl) on Tue Sep 30 16:52:52 2003:
Some do, but one can make one at home of the diffusion type. It is at
ambient pressure but cooled below with dry ice, and a pad with alcohol on it
is but at the top.
#33 Todd(tod) on Tue Sep 30 18:29:05 2003:
#34 Rane Curl(rcurl) on Tue Sep 30 19:58:33 2003:
http://w4.lns.cornell.edu/~adf4/cloud.html
#35 Sindi Keesan(keesan) on Wed Oct 1 16:34:29 2003:
Jim's neighbor two houses over, who walks to work at the ISR, left a lemonade
cup full of cut flowers from her garden and a card with an offer to pick up
anything we wanted at the food coop or farmer's market.
The drug company that makes Adriamycin (doxorubicin) says they cannot do
anything except send me info from the package insert, and forward symptom
reports to the FDA. I hope my voice comes back next year.
#36 Sindi Keesan(keesan) on Wed Oct 1 16:39:30 2003:
Today I weigh 101 pounds and the second virus that I have had this month is
finally at the sneezing stage (after five days of intermittent headache,
chills, stuffy head). I need to get over this before chemotherapy next
Monday. Jim even turned on the heat to keep the room at 65 degrees.
My lymphoma-inspired high white blood cell count seems to have protected me
from all the colds going around for several years and now it is my turn to
get all of them in a row, I think. This one has intestinal symptoms, just
what I need when the chemotherapy also has the same effects.
Off to find a handkerchief.
#37 What I wouldn't do for an abstracted body experience.(dah) on Wed Oct 1 16:46:25 2003:
Poor keesan.
#38 Dan Cross(cross) on Wed Oct 1 17:32:20 2003:
Yow, that sucks. But, Sindi, I must say that, from my perspective, you've
been doing wonderfully so far. Keep your head up, and if you keep the
good outlook you've had so far, I think you'll do just fine.
#39 Todd(tod) on Wed Oct 1 18:41:57 2003:
#40 Sindi Keesan(keesan) on Wed Oct 1 19:31:53 2003:
Thanks for all the support. It is not a bad cold, and I did manage to get
over the first one before my 3 days of low resistance and not catch this one
until afterwards so my timing is so far perfect.
I had to refrain from shaking hands with two visitors today (Jim's old
neighbor from before I met him, and his wife) not because they might get me
sick but vice versa. They told me about a friend who had surgery twice for
a non-malignant brain tumor and the surgery somehow removed her sense of taste
so she has to work at eating enough. She lost the hearing in one ear too.
It was 45 and windy and I thought I should skip today's walk until my headache
at least went away (it is mild but I am taking it as a warning) so I decided
to learn to climb stairs instead today. I can already manage the three steps
to Jim's house without his help so I decided to climb five of the stairs
leading to his upstairs. I made it to the top (and threatened to help him
clean up his room) and back down. Down was a bit wobbly. I suppose instead
of climbing one more step every day I can climb all the steps one more time
every day. I have eliminated one excuse for not working - my apartment has
a basement bathroom. But it is 1.5 miles from here and I cannot walk that
far yet.
I could also exercise by lifting the medical dictionary - with both arms.
If I try with just one hand it stays glued to the desk by a corner.
Yesterday we found two more sour apple trees at another nursing home.
Our visitors declined to try the dried pears because they are not eating
carbohydrates including fruit. A few years ago they were doing a grapefruit
diet. Fads change. They urged me to eat chocolate ice cream.
I am reading a book about kitchens of great chefs. Apparently now that
everyone has a restaurant style gas stove the latest fad is to cook over a
wood fire instead. I predict kerosene stoves next - still in use by people
in small villages in Vermont and I think the Amish. There are models where
you can use either wood or kerosene. One chef has to 'movable islands' =
tables on wheels.
#41 Joe(gelinas) on Wed Oct 1 23:23:53 2003:
Zingerman's Roadhouse is reported to have a wood stove, but the one visible
from the dining room looked like gas. It had the knobs, anyway.
#42 Todd(tod) on Thu Oct 2 11:15:41 2003:
#43 Sindi Keesan(keesan) on Thu Oct 2 11:40:07 2003:
One of my neighbors built on a house size addition behind the house which I
think they are heating with wood. When they heat, the whole block gets
smoked. Not appropriate to heat with wood around neighbors.
Today my virus is a bit worse so I went back to sleep until 11 when UPS rang
the bell to deliver my 3" 5.5 lb/sq. ft. quilted covered foam mattress topper
ordered two weeks ago. The first time I ordered it never got shipped so Jim
called a week later and someone said he would go ship it immediately.
What we got has a terry cover and is 20 lb (Iower density). They said to tape
it back up for UPS to pick up (probably tomorrow) and they would mail out the
proper model today. They also did not include the requested invoice or
receipt that I needed for insurance to reimburse me but will send one today.
Good thing I am not busy.
I am about to phone U of M to see of they send pap smears to St. Joe's to be
analyzed and if so to find out why St. Joe's billed me directly instead of
U of M. I think they said something about sending them out. Wish me luck
finding someone who knows what happened at both hospitals.
#44 Sindi Keesan(keesan) on Thu Oct 2 12:55:12 2003:
The drug company (which has apparently been renamed from Bedford Labs after
the city in Ohio where it is located to 'Boehringer Ingelheim Ben Venue
Laboratories) suggested I call the National Cancer Institute (still getting
govt. money) for more info. They found reference to the ovarian cancer study
in Physician's Desk Reference (as standard reference book on current drugs)
with 1% incidence of laryngitis but 5.5% incidence of pharyngitis - same study
I found online. I think what I have is swelling of the throat which is
interfering with swallowing and talking. They also found in a textbook on
drugs reference to the swallowing problem as anaphylactoid (allergic like
beesting reaction). Hopefully all anaphylactoid reactions eventually clear
up when you stop aggravating them. One time when I got my ankle stung and
my whole leg got swollen up it took a few weeks to unswell and I was still
getting hives from cold water or air all summer after that. I will try to
avoid cold liquids and foods and hope this is all cleared up by next summer
(a few months after the last treatment).
#45 Joe(gelinas) on Thu Oct 2 13:20:04 2003:
(I like the smell of woodsmoke.)
#46 Reverend Salvador Dali Parton(happyboy) on Thu Oct 2 13:36:15 2003:
(sets your house on fire)
#47 Sindi Keesan(keesan) on Thu Oct 2 16:50:36 2003:
U of M has agreed to pay the $38 billed by St. Joe's, on the assumption that
the pap smear slide that I brought to U of M with a form labelled St. Joe's
was accidentally sent from U of M to St. Joe's. The doctor is supposed to
get the correct U of M requisition forms.
We went for a walk and nothing in this area has frozen. There was a purple
butterfly bush in full bloom with an orange butterfly on it.
#48 Dave Lovelace(davel) on Fri Oct 3 09:18:48 2003:
(wood smoke tends to encourage my asthma.)
#49 Sindi Keesan(keesan) on Fri Oct 3 09:20:30 2003:
Today my head does not hurt and I slept with one blanket instead of three (in
a heated room) so I don't need to worry about being sick during chemotherapy
on Monday. (I may push my luck by going to a church rummage sale - warmer
place to walk than outdoors anyway).
#50 Sindi Keesan(keesan) on Fri Oct 3 12:46:30 2003:
Hello from the main public library, where I just climbed from the main to the
middle floor to help Jim renew his car license plate by mail. Grex's version
of Lynx (2.8.4) does not do SSL. Mine does but I don't seem to be able to
get through to my ISP. Maybe they changed phone numbers - have not used them
for a couple of months. I hope the new grex uses the latest lynx with SSL.
Today's exercise has been the Baptist Church rummage sale, which I dragged
Jim to and from. He got a pair of shoes for $1 and a basin wrench and some
tupperware with rounded ends about 6" long and 5" high - what was this
designed for? 2" wide. Someone suggested pickles (rounded ends slightly
flattened in the middle). I got a second pair of knit pants with elastic
waist that don't fall off like all my other pants do and a men's small shirt
with long enough sleeves (usually need to get M) that is not ultra-baggy.
Jim also got an interesting plastic container with a piece that fits inside
and has holes in the end of it that he thinks might be useful in making tofu.
And a fitted double sheet with holes in it.
The library computer chairs are somewhat padded but I have to stand again.
#51 Richard Murphy(murph) on Fri Oct 3 13:04:36 2003:
My mother used (well, I assume she still does) such shaped tupperware for rice
and other such things. They line up well in the cupboard or on top of the
fridge so that you can see many more containers than if they were square (and
you'd have to put some in front of the others). Hers were somewhat taller,
though, I think.
#52 Sindi Keesan(keesan) on Fri Oct 3 22:42:43 2003:
Jim thanks you. He just noticed that one of the narrow ends is clear so you
can see inside it.
I would guess the rounded ends make it easier to get the top on and off.
#53 Scott Helmke(scott) on Sat Oct 4 08:53:16 2003:
(Square ends probably would have worn out at the corners of the lid, since
there would be a lot of stress there. Tupperware did actually worry about
quality of their stuff.)
#54 Glenda F. Andre(glenda) on Sat Oct 4 12:22:58 2003:
Round ends are easier to clean, no corners for things to get stuck in.
#55 Sindi Keesan(keesan) on Sat Oct 4 12:55:56 2003:
Our freezer containers are all square. They also tend to break.
Are all tupperware containers rounded?
#56 David Brodbeck(gull) on Sat Oct 4 17:35:07 2003:
I don't think I've ever seen one that had a sharp vertical corner. They
were always radiused.
#57 Sindi Keesan(keesan) on Sat Oct 4 19:14:08 2003:
Today for exercise we walked to Huron near 8th St. to one of the houses on
the solar homes tour, where we knew the owners (one of whom translates Russian
and Ukrainian). We stopped at a yard sale and paid 50 cents each for a
microphone (which included a small to large adaptor plug) and a digital clock
(which needed a new battery). We then admired the four solar panels
(amorphous, set up to work on cloudy days when only a few cells actually
produce energy - the crystal ones need all cells to get sun), and a box with
8 6 volt batteries, and a 48 to 12 volt convertor, and a breaker box with
DC/AC breakers, and the 12 cu ft. refrig/freezer with good insulation that
these are all operating. There were only 5 days they needed to use house
current for it. Total cost somewhere about $5000, system good for maybe 20
years with 1 or 2 battery replacements (cost unknown).
Also a gas tankless water heater that has the drawback of only working when
you run 1 gal/min through the faucet. It won't work with a low flow shower
head, or to wash dishes in the sink unless you waste lots of water or fill
the sink (but they use a dishwasher). I shower at 1/2 gpm (hot and cold
combined - we measured once). So instead of wasting heat when it leaks out
of the tank, you get to waste hot water.
I walked 1/3 mile each way. On the way back Jim found at the curb a windup
Big Ben clock that does not work (he is happy to have a chance to take it
apart) and a large plastic container that is not Tupperware (it has squared
corners). And three long 2x6's that he left there.
The other five solar sites were too far for me to walk and we have already
been to Leslie Science Center anyway. The Reuse Center has some new solar
power exhibits that will probably stay there.
The total cost was only for the panels and 12V DC refrigerator (Sunfrost).
#58 Sindi Keesan(keesan) on Sun Oct 5 13:12:41 2003:
My hair only came out in small clumps for a few days last month - I think it
was shortly after therapy. But individual hairs are still coming out in the
bathwater (and in my meals). The area around the part looks a bit thin but
I don't expect to be losing a whole lot more hair. Probably it is the bone
marrow patients (chemo every day) and leukemia patients (weekly) who go bald.
As the pharmacist predicted, my feet are now also somewhat numb but not so
much on the toes as on the soles. In my hands it is the last joint which is
numb. Neuropathy (temporary nerve damage - maybe the myelin sheath is one
of those things that grows fast and was affected by the toxic drugs so that
part of it has not regrown and nerve impulses get blocked).
I can now cut my nails using a toenail clipper and just one hand. When using
my left hand I need to grip with the hand, not just a few fingers. A month
ago I needed to put the clipper onto a hard surface and lean on it with a lot
of weight, meaning my hands are stronger now.
Today's walk will be across Liberty (there is now a nice island in the middle
to make things easier) to Zion Lutheran Church where there will be a concert
of Russian church music (some of which I used to sing - but I certainly can't
join in today considering I have laryngitis. I was a second tenor because
the other tenors could not read music and the first tenors sang melody,
similarly to shape note singing.). Chesnikov and Bortnyansky and Chaikovsky.
We made it almost to Liberty a few days ago to check out some apple trees.
Not many events are scheduled within 1/2 mile of here but Main St. is only
1 mile. My world is slowly expanding again.
I just read in a library book that people with celiac disease (gluten allergy)
are more likely to develop non-Hodgkin's lymphoma. Perhaps the lymph cells
are involved in the allergic reaction and therefore multiply faster and thus
have a greater chance of becoming cancerous? I should read about the lymph
system in my histology book. The spleen and thymus are involved somehow.
#59 Scott Helmke(scott) on Sun Oct 5 13:20:15 2003:
All the way from Jim's house to Liberty is great improvement!
#60 Sindi Keesan(keesan) on Sun Oct 5 19:25:47 2003:
Past Liberty up the hill to Zion. As soon as we reached the island in
mid-Liberty a row of four cars stopped for us.
The singers were one woman and three men, the women singing what I expected
to be a tenor part, and the music was more complex than what our many voiced
Russian Byzantine Liturgical Choir used to sing. Two pieces were fugal, and
two had the 'tenor' or the bass singing one part with lots of words while the
others accompanied with a repeated phrase. The folk songs were in operatic
style (orchestrated like most E. European folk songs done by traveling groups)
but well done. They ended with God Bless America in English. The group sang
mass at a Russian church in some Detroit suburb this morning and they are
singing at five churches a week until Nov. 10.
Jim got sick on eight cookies and we met someone who teaches German literature
and explained that the French video (Marquise of O....) which we got from the
library, which was in German and set in Italy during the Franco-Prussian war,
was supposed to have been taking place in Germany (according to the original
novella). I never could figure out why the Russians were fighting the Germans
in Italy during a Franco-Prussian war. Some movies follow the original plot.
Time to pack lunch and supper for tomorrow as I have to give blood at 1:10,
see the doctor at 1:45 (more likely an hour after that) and then do
chemotherapy which will last about 5 hours. They close at 9:00. I need to
find a portable radio/tape player with headphones to mask the noise of all
the other patients in the room watching TVs. I hope they don't give me two
Benadryls again as it won't be fun being 3/4 asleep in a chair for 5 hours.
Just one after a beesting once was enough to put me to sleep all afternoon.
#61 Sindi Keesan(keesan) on Mon Oct 6 11:52:18 2003:
jor (see another item) who is looking for some place cheaper than a hotal in
Ann Arbor while he is in town seeing a doctor phoned in response to my offer
of my apartment (which is quiet this week while the upstairs neighbors are
away) just as I was plugging in the phone so the answering machine got it.
He was at the U of M Hospital (somewhere) and I am going there shortly and
we have missed each other until tomorrow. Unless he checks email at the
hospital (not having left us the phone number there). This seems like a
perfect way to stop wasting my apartment.
Jim is packing applesauce into which to grind up my 7 pills.
I wish it was the back of my hand rather than my fingertips which was numb
so I could feel things other than the IV.
#62 Brooke Edmunds(edina) on Mon Oct 6 13:33:29 2003:
How does taking the pills in teh applesauce work for you. I did that once
and the pills totally affected the taste of the applesauce (made it bitter)
almost to the point where I couldn't have it.
#63 Sindi Keesan(keesan) on Mon Oct 6 22:52:31 2003:
The benadryl is really bitter, in fact I almost choked on it, but I washed
it down with cranberry juice to get the taste out. They let me take just one
instead of two Benadryl because I am small. The three nausea pills were
nearly tasteless. What sorts of pills did you take and why?
Not my luckiest day. The blood draw person hit a nerve or something and it
hurt a lot for half an hour afterwards. The IV went in and maybe also hit
something and it hurt continuously for all 4 hours (better than the 7 hours
last time). The drugs went in without any problems.
We managed to get hold of jor and if he does not do surgery tomorrow we will
show him apartment and try to get it livable so he can stay there while
recovering (if he can manage teh basement steps and being on his own). There
is also a spare room possible at Jim's house if he needs more help, right next
to the bathroom, with food in the kitchen. It can't be any fun to be sick
all on your own. JOr is willing to help dig up weeds before surgery.
Jim is calling me for 'supper' - I did not feel much like eating with a needle
in my hand. High in fiber and liquid and potassium - cauliflower etc. soup.
#64 klg(klg) on Mon Oct 6 22:58:37 2003:
See the advantages of a port now? No muss, no fuss. Never felt a
thing.
#65 Sindi Keesan(keesan) on Tue Oct 7 11:03:34 2003:
But I don't need to go around with some foreign matter in my arm, and wrap
it up with saran wrap and tape to shower, and I can use the tub instead.
Yesterday they agreed to give me just one Benadryl instead of two (but two
Tylenol) before the Retuxan (I had no side effects and my pulse sitting is
now 72 or 80), and I stayed wakeful in the recliner chair (which was as usual
too big for me so I sat cross-legged). Benadryl in applesauce tastes so bad
I almost gagged on it. The three antinausea pills before CHOP were tasteless.
They infused Ativan (sp?) to protect me from the next three anticancer drugs.
That acts like prednisone - 5 lb fluid retention and keeps you awake. At 10
pm the Benadryl won out (I felt asleep on my feet) assisted by the 5 hours
sleep the night before. For the next four days prednisone (with Prilosec an
hour before to protect the stomach lining) will keep me from sleeping and
cause slight constipation, followed at discontinuation by rebound symptoms
after which oral thrush for three days while my immune system recovers.
They say the first week is when people are most tired, and the tiredness is
cumulative. So far I am okay. Got to clean up my apartment for a guest.
Jim is off to purchase four days' worth of prednisone. They won't give us
a larger prescription because some people take them too long by mistake. The
first pharmacy did not have them, Village Pharmacy did - not on the list that
the insurance pays for at $10/month supply but they are only $8.
While waiting from the 1:00 blood draw until they found me a space at 5:00
pm, after the doctor's appointment (he said I am doing amazingly well) and
talking to the pharmacist (who thinks the laryngitis will clear up next year),
we met a man who JIm asked if he heats with wood (he does) from Grass Lake.
He has multiple myeloma and has been coming for treatment and sometimes
hospitalzation for 4 years and gets infused every other day. This was the
wrong day - he was waiting for nothing. There is an occasional week off.
He says he lost 75 pounds and was in a wheel chair for a while and still
cannot crouch but they are trying a new drug and he is hopeful.
We got out after 9:00 pm and the cashier at the parking structure was no
longer taking the $2 fees so I bought bread with it instead.
Got to get off by 11 for jor.
#66 Christopher L Goosman(goose) on Tue Oct 7 11:13:01 2003:
Maybe I missed it, but why can't you just take pills, instead of having them
put in applesauce? Before I could take pills with liquid, I would use a
cracker, and then place the whole pill in the mushed up cracker in my mouth
and swollow the whole thing. Bread would serve the same purpose I guess.
Some pills (maybe none that you are taking) actually release in a particular
manner, and should not be ground up.
#67 klg(klg) on Tue Oct 7 12:10:56 2003:
Perhaps a better questions is, "Benadryl comes in liquid form, doesn't
it?"
#68 S. Lynne Fremont(slynne) on Tue Oct 7 12:33:03 2003:
yes, benedryl does come in flavored liquid for children
#69 Sindi Keesan(keesan) on Tue Oct 7 15:24:42 2003:
They thought about giving me liquid benadryl but had already checked out the
pill and besides I needed two (solid) tylenol so Jim just mashed them all up
together. I choke when I swallow even plain liquids - something probably
related to the pharyngitis/laryngitis. The pills would stick and choke me
too. Heating the liquid a bit seems to help but I just choked a bit on warm
tea I was using to get down the Prilosec that I need to take an hour before
the prednisone which I need to take with FOOD (says the bottle).
Jor stopped by, dialed mnet to check his email, talked to us over a brunch
of more oatmeal than he normally eats at one time, and went off to get a cell
phone so people can find him until he gets settled again. We went off walking
to Village Pharmacy about 3/4 mile each way with a short rest at Vet's Park.
At the pharmacy I talked to someone purchasing Neuopgen for his neutrophils.
He has had AIDS symptoms since 1982, treated with various regimes since 1989.
I hope I last that long. Someone in the chorus that I can't sing in this year
said her mother was treated 18 years for lymphoma and found it helped to go
on increasingly longer walks and also do weight training.
Kiwanis Club sent flowers.
Near the pharmacy is Value Village. They have $5 printers, a $4 scanner, and
a $8 6-CD Pioneer CD player. My 1-CD Pioneer used was $80 in 1991. Perhaps
we don't need to fix CD players any more. Also found a stainless steel
pressure cooker like our two aluminum ones in which the lid has the gasket
on top and is pushed up instead of turning. It should be easier to use and
not wear out as fast but I doubt we can find replacement parts.
Also found half an apple tree at the top of the Vet's Park hill - the trunk
is over a fence. Nice tasting. Three blah red delicious at the movie
theater, with pink flesh. The sour green apple tree near Jim's house still
has most of its apples.
I am supposed to drink 12 glasses of water a day but I think oatmeal and
apples and lentil stew will count towards that and besides I am smaller than
their average patient who is probably 200 pounds. Have to flush out the
chemotherapy drugs and whatever cells they killed. Three down plus 2 cups
of oatmeal. Lemon-grass tea seems to make me choke.
Jim is taking aphoto of me dressed for winter with the new flowers. The
batteris seem to be dead.
#70 Brooke Edmunds(edina) on Tue Oct 7 16:01:37 2003:
If they want you to drink 12 glasses of water, my suggestion is to try and
get as close to it as you can. I'm supposed to get 8 - but right after
surgery, I was concerned becuase I just couldn't get it all in, and when I
asked the nutritionist, she said 8 was the goal. Just try to get it in.
You're trying to flush chemotherapy out - I'm just flushing fat - your waater
intake is far more important than mine.
#71 Sindi Keesan(keesan) on Tue Oct 7 18:09:56 2003:
Two cups oatmeal, one cup lentil stew, one cup tomatoes, two cups milk, two
cups tea. The 12 glasses was at some website and may be appropriate for
someone who lives on meat sandwiches (not much liquid in them) and weighs
twice what I do. I am going to the bathroom pretty frequently already.
Water comes in foods, not just cups.
We had a nice late lunch with jor, who is willing to learn to install Win98
so he can show Jim how, and also to help weed the yard while he can see to
do so. They are out right now trying to fix the starting problem on his car
then we will show him my apartment.
#72 Tim P. Ryan(tpryan) on Tue Oct 7 20:21:40 2003:
Hope you don't mind getting the floriculturally diverse
polyfragrant soilistically challenged multipetaled victims of
pesticidal food chain chauvinism.
#73 Sindi Keesan(keesan) on Wed Oct 8 15:36:16 2003:
We are eating mostly organic fruits and vegetables, if that is what you mean.
Yesterday before taking jor (john) to see my apartment we fed him breakfast
and lunch and Jim 'fixed' his car until 7:30 pm (cleaned spark plugs and added
some fluids) at which point I started feeling the effects of all the drugs
so let them go without me. They came back at 8:00 - my help is needed to
uncover the bed and kitchen. John is staying in Jim's small spare bedroom
instead on a futon that Mary Remmers gave us. He spent the morning automating
the m-net idle-out program and now they are trying to install Win98 on a
curbside find 500MHz pentium on which Jim managed to kill Redhat 9 (which was
too slow anyway). We will take him to outpatient surgery Friday and if he
feels well enough afterwards, bring him back here to save the cost of an
uninsured hospital room for the night. (same cost as three months in Jim's
small room used to be last time he had a paying roommate). He is a perfect
guest and even likes Jim's cooking (including the Indian hot pickled lime).
By Saturday I should be feeling enough better to help more.
The chemotherapy drugs are, I think, what is giving me hot spells. The
prednisone that I took at 4:00 pm (one hour after taking Prilosec) wore off
about 10 pm so I started losing the retained fluid and had to go to the
bathroom every half hour until 2:30 am. We walked to the pharmacy after a
very late breakfast, about 3/4 mile each way, and got back to discover that
instead of 8 pills (2x50 mg per day) they somehow multiplied to get 16 pills
but charged for 8 so next month's supply is here in advance. Today I woke
at 7:30 and took the pills by 9:30 and then napped. The jitters hit again
around 2:00 so we went for a jittery walk. The man-eating ladybugs are out.
We found another wind-up clock where the first one was, and a lot of old Win31
and even Win20 disks and a snow shovel (just in time). I had to choose my
streets carefully to avoid the sun (which can cause a reaction due to one of
the drugs). Jim also found a bunk-bed frame but left it there.
Anyone know why there were a lot of very slow bees crawling all over the front
steps at Zion church Sunday afternoon?
Jim wonders where to buy cheap recordable CDs so the neighbor can download
and copy him some software for use with Win98 (picture editing). Would K-mart
have cheap ones? Something within easy biking distance please.
I am eating rather tasteless but wet and fibrous and potassium-containing
yellow watermelon from a friend's organic farm. Jim got all the cracked ones.
Prednisone tastes only half as bad as Benadryl.
#74 Scott Helmke(scott) on Wed Oct 8 19:20:36 2003:
Cheapest CD-Rs are at Comp-USA, in packs of 25-50. I'd be happy to share a
smaller number out of my current 50 pack.
#75 Tim P. Ryan(tpryan) on Wed Oct 8 19:33:54 2003:
re 72: getting flowers
#76 Lawrence Kestenbaum(polygon) on Thu Oct 9 01:40:46 2003:
Following my throat surgery last year, when my throat was much too raw for
ANY solid pills, let alone the horribly rough and terrible-tasting Zantac
pills, I had a prescription for liquid Zantac. Wonderful stuff, delicious
peppermint flavored syrup. But it was very difficult to fill the
prescription -- most drug stores were out of it, and the others would
offer a small fraction of the prescribed quantity. Zantac pills are OTC,
but the liquid form is mysteriously prescription-only, and very expensive.
Later, I heard that liquid Zantac is usually for children, hence, the
quantities in stock were likely to be small.
#77 Sindi Keesan(keesan) on Thu Oct 9 08:15:53 2003:
What is Zantac for?
I have emailed the cancer center nurse to ask if I can take half as much
prednisone. I got to sleep after 1:30 and woke before 3:30 am last night.
Scott, thanks for the offer of the CD but I don't want to take the faintest
chance of catching your flu before at least January.
Is Comp-USA within a couple miles of Jims house near Zion Lutheran Church?
We will see if another friend can drop off a CD today.
I will probably have to start again tomorrow with the thrush treatment. Maybe
some people consider the fruit/banana taste delicious due to the 33% sucrose?
Someone else suggested that maybe just a salt water gargle would work instead.
#78 Dave Lovelace(davel) on Thu Oct 9 09:07:30 2003:
Sindi, Comp-USA is almost next to Best Buy. Turn off AA-Saline Road at the
traffic light by Meijer, then go on past Meijer a short way. It's rather more
than a couple of miles from Jim's house, though.
#79 Sindi Keesan(keesan) on Thu Oct 9 12:02:08 2003:
Jim is not going to bike to Best Buy area. AA-Saline road is one of the worst
roads to bike on - full of cars and trucks, shoulder is thick gravel. We will
get a CD-R from a friend, no hurry.
Jor is looking for linux scanner software for Jim's latest scanner. I have
a pointer to the correct linux software for my BW scanner (HP).
I slept from 9:30 to 11:30 (part of it, anyway). Jim is pushing watermelons.
I have to wait until after the prednisone period ends (through Friday) before
doing the salt water gargle. Last cycle the thrush started on Friday
(overlap). Maybe I can just rinse all the salt out?
Tomorrow is a Zion rummage sale to walk to. Wonder where to go today while
avoiding that nasty sun. We are planning to get jor to surgery around 10:30
and pick him up late afternoon once he wakes up. Maybe he would like to
listen to Jim's books on tape for a few days. Jim made a big pot of oatmeal
this morning but finished it after jor went off on errands (finished cooking
it, and finished eating all but my small bowlful!).
#80 Marcus Watts(mdw) on Thu Oct 9 12:22:02 2003:
"Very slow" bees probably means either (a) they were cold, or (b) they
had been sprayed with something nasty. Honey bees do swam and find new
haunts every so often, and I suppose other bees might do the same.
Swarming bees are usually less aggressive.
#81 Sindi Keesan(keesan) on Thu Oct 9 15:31:30 2003:
But what did they want from the church steps?
Today we set off on foot for the library but I was so tired we just did a loop
through the 70's chicken-coop-style neighborhood, where people have planted
a lot of interesting things. I am going back to sleep again now. Prednisone
also causes muscle weakness in addition to lack of sleep. I will do library
next Tuesday when my immune system comes back. I might sleep until then
starting Saturday when the prednisone wears off.
Jim put the living room back together as a living room now that I am in a
bedroom. Still waiting for the 3' wide 3" thick mattress topper. They think
they mailed it a week ago and UPS takes 2-3 business days to deliver.
We met a new neighbor who was out working in her front garden and Jim tried
to convince her that it was the easiest thing in the world to add a basement
toilet. The houses on this block are mostly built the same way. You just
need to bash a hole in the basement floor in the right place and cut a hole
in the cast iron drain, he says. A day's work, maybe two..... She has
planted four small burning bushes. The one next door is about 8' in diameter,
or maybe 10'. Lots of new fall color - maples, dogwoods, sumac, berries.
Jim's 12' tall jerusalem artichokes that came into the front yard along with
compost for the last housemate's cabbages are covered with yellow flowers.
They are bigger than some of the trees.
#82 Sindi Keesan(keesan) on Thu Oct 9 19:30:02 2003:
Got another 1 hour nap after the walk but am still exhausted. About a week
ago my soles of my feet started to feel numb. Today I can tell the drugs are
working because now the palms of my hands feel numb, not just the finger tips.
They said the side effects could be cumulative and that I would feel more
tired each time but last time I had a cold so I can't tell how tired I would
have felt without it. No cold this time at least.
Jor just went for a walk. He is probably feeling even more jittery than me,
having looked up on the web everything that could go wrong. I told him to
concentrate on things he could change and try to stop worrying. He can do
a good job following instructions during recovery.
Jim is cooking. I watched a video. Jor watched it with one eye. I happened
to pick one about a blind boy, accidentally.
#83 Still Maxin' and Relaxin' in the Pacific NW(jaklumen) on Thu Oct 9 20:08:47 2003:
Zantac? Heartburn, right?
#84 Glenda F. Andre(glenda) on Thu Oct 9 22:53:40 2003:
Works similarly to Prilosec. It is now available over the counter at a
reduced for Rx strength. Didn't do much for me. Not like the magic purple
pill.
#85 Sindi Keesan(keesan) on Thu Oct 9 23:23:22 2003:
I asked the price of the Nexium purple pill - $7 each!
The Prilosec is supposed to keep the prednisone from making my stomach lining
bleed. Only one more of each to go this cycle before I can sleep again.
Today things are starting to taste funny including water which probably means
the thrush will be here tomorrow. I gargled salt water.
Are there cheaper cell phone services than 15 cents/min evenings?
#86 Steve Gibbard(scg) on Fri Oct 10 02:16:30 2003:
The standard nationwide cell service rate now seems to be around $35 per month
for 500 minutes per month. That's 7 cents per minute if you use all 500
minutes, but considerably mroe per minute if you use it considerably less.
#87 Sindi Keesan(keesan) on Fri Oct 10 06:32:02 2003:
Thanks, I will tell jor. He got something in a hurry so people could find
him while he was in transition. Regular phone service is still cheaper unless
you make lots of long distance calls and few local ones. (I pay 5 cents/min
to call Hawaii but 15 cents for Michigan.)
Today I managed to sleep between 12:30 and 5:30. It gets light about 7:40.
I checked my first cycle blood values and today is when they will probably
drop in half and then keep dropping, but half of my last value is still low
normal. Normal is 1.4-7.5 k/mm3 and I was 4.2 on Monday. I expect to be up
to about 5.4 next Thursday based on past history so Tuesday might be low
normal again. This is sort of interesting, more so on 5 than 2 hours sleep.
The prednisone also induces hunger. I expect to be sleepy and not very hungry
when I stop taking it Saturday.
The 4.2 blood value is neutrophils (which fight off bacteria). My platelet
count is high normal (stops bleeding) so I can still floss my teeth.
#88 Sindi Keesan(keesan) on Fri Oct 10 13:04:19 2003:
Jim (and maybe I) will go back to Kellogg Eye Center around 3:00 to keep jor
company while he wakes up and to get instructions for recovery. For some
reason they don't trust the patient to understand it all after general
anesthesia starts wearing off.
While delivering jor this morning Jim ran into a nurse who was sure she had
seen him somewhere. After exhausting all other possibilities, they discovered
that they had both attended the 2-year nursing program at WCC together about
20 years ago.
People ask Jim what he does for a living. He has decided he is a homemaker.
#89 Rane Curl(rcurl) on Fri Oct 10 15:52:33 2003:
He could be a "home technician".
#90 Drew(drew) on Fri Oct 10 16:52:37 2003:
Re #87:
To get the cheaper interstate rate (instead of the jacked up "local zone"
or whatever the phone companydoes with your call) for calls instate, prefix
all calls with the access code for your favorite long distance company - even
if you have it as the default. Manually reroute them to force them through
the cheaper company.
I personally use 1010629- which is 4 cents per minute, no minimums, and
no monthly fees.
As for cell phones, I concur with you on that conclusion.
#91 Rane Curl(rcurl) on Fri Oct 10 17:11:29 2003:
You can get $19.99 cell phone service. We also use an AT&T Calling Card
that was sold at Sam's Club for 3.5 cents/min.
#92 Sindi Keesan(keesan) on Fri Oct 10 17:39:23 2003:
Where do you get the 19.99 service?
Jor is still not ready for pickup. Jim called at 4 and was told at least one
more hour but not whether he was in the recovery room yet. I spent 7 hours
in the recovery room after minor surgery since it got infected. I should get
offline soon.
Apart from being exhausted it has not been a bad day. My cousin mailed me
a box of novels. The neighbor sneaked over with some apples for us and
mentioned that she is the one that told Kiwanis I was sick (they sent
flowers). Someone else at Kiwanis will stop by in an hour with some little
thing for me - we set him up to use grex for email (and got the rest of the
computer from his son working with Windows and Netscape for him but he forgot
again how to print, having learned at age 81.)
Got to check on jor again. Surgery was supposed to start around 11:30 and
take maybe 4 hours at most - hope it went okey.
I don't make enough Michigan phone calls (outside of Detroit, which Jim calls
twice a year for 7 cents/minute) to bother with another service. I called
Lansing once this year. But it is odd that the local company charges twice
as much for Lansing as Detroit.
#93 Sindi Keesan(keesan) on Fri Oct 10 20:12:08 2003:
I have procmail set to filter (to a 'penis' folder) subject lines with
p*e*n*i*s. The nurse's reply to my question about prednisone ended up in that
folder. They give everyone 100 mg and may be able to adjust my dose next
time.
Jim fetched jor home about 7:30 and went off to get him some expensive
eyedrops. It is no fun coming home from surgery. Nausea and vomiting are
common and all lights and noises are painful. He is trying to sleep on the
couch (the painkiller should have worked by now). It is supposed to get a
lot better within 24 hours. They go back in the morning early. I did not
hear about the details of the surgery.
Some friends from Kiwanis with a nice flower garden brought me pink roses and
altheria (?) and baby's breath in a vase.
I am done with pills for a couple of weeks. Now Jim gets to meter out things
to jor instead of mashing up pills for me in applesauce. He may get up every
4 hours with the pain pills since it is hard to take them at the right time
when you cannot see to read a clock easily. Jim is a nice guy.
#94 S. Lynne Fremont(slynne) on Fri Oct 10 23:06:20 2003:
No kidding. Jim should get a medal of honor or something for being
kind.
You can get $19.99 nationwide cell phone plans from T-Mobile. I have
that. I get 60 "anytime" minutes and 500 weekend minutes. Since I use
my cell phone mostly on weekends, this works out for me. I think the
regional plans might have more minutes but I am not sure. I wanted the
nationwide plan because one of the times I most want a cell phone is
when I travel.
#95 TS Taylor(tsty) on Fri Oct 10 23:28:22 2003:
smoking marijuana, i have been told, increases the appetite.
perhaps simply ingesting (not smoking) some 'brownies' would do the
same. at this point in yuor recovery - even not being a doctor - i would
come VERY close to making the consumption a requirement.
consider it.
#96 Rane Curl(rcurl) on Sat Oct 11 00:18:02 2003:
The "nationwide" plans I've read about let you call nationwide with
additional cost, but you can't call *from* nationwide everywhere
without further charges.
AT&T and Cingular also have $19.99 plans.
#97 S. Lynne Fremont(slynne) on Sat Oct 11 00:43:47 2003:
I can use my cell phone anywhere in the USA where T-Mobile has coverage
which is pretty much limited to major population areas. I have used it
in Seattle and Chicago with no further charge. I can call nationwide
with no additional cost. Long distance is free with my plan.
#98 Steve Gibbard(scg) on Sat Oct 11 01:00:18 2003:
With the exception of T-Mobile and Nextel, whose phones just don't work where
they don't have coverage, most of them now let you make calls for "free" from
the areas where they have their own coverage (ATT's coverage seems to include
lots of non-population coverage), and charge for calls from elsewhere. The
only place I've been where my ATT phone was roaming recently was Northwest
Montana.
#99 Colleen McGee(cmcgee) on Sat Oct 11 08:23:30 2003:
My Verizon nation-wide plan is both placing and receiving calls any where
Verison has coverage. It's been very good coverage everywhere I've gone in
the past two years, which includes some rural areas in both Oklahoma and
Prince Edward Island.
#100 Richard Murphy(murph) on Sat Oct 11 10:01:01 2003:
My cingular plan let me call anywhere from anywhere without charging--it even
worked halfway between Bismarck and Fargo, ND, which is about as nowhere as
you can find. Now I have a Verizon plan (because Cingular has horrible east
coast reception, and horrible customer service), which also claims to be to
anywhere, from anywhere, for no extra charges.
#101 Sindi Keesan(keesan) on Sat Oct 11 12:49:10 2003:
Jor won't be making any calls from Prince Edward Island for a while but will
look further into a better plan when he is well enough to be going out on his
own. The checkup this morning went well and he is doing eyedrops and feels
much better than yesterday (as predicted).
My lips tingle and it hurts somewhat to swallow so I probably have the
beginnings of thrush and am gargling and using the medicine. Good timing -
finish one medicine before starting the next (and starting jor's eyedrops on
schedule). Nurse Jim is making a lunch that can be eaten with one's eye's
shut - if you use one eye it moves the muscles in the other which hurt. Bean
stew made with little green lebanese mung beans or something similar looking
with local organic celery and carrots on rice.
Jor commented that he keeps getting prescription type spam including vicodin.
Today I got two prescription spams including vicodin. We are explaining to
him why it is not a good idea to take too much painkiller with codeine in it.
That is probably why I had constipation for five days in the hospital followed
by 3 days of unpleasant reaction when the codeine wore off. They said it was
okay to take up to 2 every four hours, and I was taking one every 6-8 and the
bottle said to take only 2 per day. Also the tylenol in Vicodin is not good
to take in large quantities (liver damage).
#102 Sindi Keesan(keesan) on Sat Oct 11 15:23:52 2003:
The three of us were trying to figure out how to use the two types of
eyedrops. Twice or four times a day (with meals they said ? !). Apply
pressure. Shake. One is atropine for treating a couple of conditions that
I did not recognize. It dilates the pupil and is also used by
opthalmologists. The other is a combination of a steroid (dexamethasone =
prednisone) which reduces inflammation but also reduces the immune system so
they added a broad-spectrum antibiotic. So now there is a timetable for
Vicodin (painkiller) and two eyedrops all of which will interfere with sleep
if followed exactly but it is probably for no more than 10 days at most.
By the time they got this all figured out and lunch started Jim got to market
after everyone selling food there had gone home but he got mozarella and will
make a whole wheat pizza. He is been somewhat less vegan than usual recently.
Pizza can be eaten with the eyes shut, I think, but jor has actually been able
to read today with one eye.
My thrush progresses - now my gums as well as my throat hurt but it is only
for 2-3 days probably. Water still tastes funny and other things don't taste
much at all but at least I am not sneezing this cycle. I got my usual 2-3
hours sleep at night and now another 2 in the morning.
The bean soup with a few vegetables (made in the latest pressure cooker from
Value Village) turned into vegetable soup with a few beans. I can add salty
pickled Indian lime to it today.
Last time I was at the cancer center I paid the $4400 (discounted by ppom)
bill for the first outpatient chemotherapy and blood tests. Today the
itemized (nondiscounted) bill arrived. $1400 for the administration of drugs
for 5 hours. (It will be shorter from now on). $73.18 for two antinausea
pills (kytril). $40 for saline solution (one bag used to keep the IV line
open). Supplies II $73 (?). A few lab tests. The older chemo drugs (three
of them) only totalled about $200. The Rituxan was $5100! Total $7,235.16.
At this rate the total treatment including hospital would come to over $80,000
(not including CT scan?). Plus probably $6500 a year in biannual CT scans
and frequent blood tests until I hit Medicare age, from now on. (Or less if
ppom wangles a good discount for the scans). Plus $1000 or more a year for
my insurance policy. Half my earned income.
Life is not cheap.
#103 klg(klg) on Sat Oct 11 18:18:56 2003:
I am not having "frequent blood tests." In fact, I don't remember my
oncologists are ordering any at all in the past year.
#104 Colleen McGee(cmcgee) on Sat Oct 11 21:20:02 2003:
Yes, it's unfortunately costly, especially for those people who don't have
any income _except_ earned income. They often have to drop certain parts of
their treatment because they can't afford it.
#105 Sindi Keesan(keesan) on Sat Oct 11 23:28:08 2003:
Klg, what is this costing you per year for the tests you are having?
They caught my lymphoma in the first place because of some very abnormal blood
test values (cmp and cbc).
The hospital seems willing to treat people even if they cannot pay, and then
try to work out some payment plan later. The social worker at UM hospital
said they have some financial aid for people, and St. Joes helps people to
get Medicaid assistance.
My thrush is now at the point where I have pain/burning in my throat (with
or without swallowing), lips, tongue, gums even inside my nose, despite using
the medication. Oh well, in a few days it will be better and THEN I can get
a full night's sleep, I hope. It would be nice if the 3' wide mattress pad
would come by then. They sent an invoice but still no pad.
#106 John Ellis Perry Jr.(jep) on Sun Oct 12 01:28:41 2003:
I have Cingular cell phone service and find the customer service to be
good, as long as you don't mind listening to the same 90 second ad
loop for 20 minutes if you get put on hold. When I get a person,
they're almost always knowledgeable enough, and willing enough, and
capable enough, to help me.
#107 Sindi Keesan(keesan) on Sun Oct 12 13:51:40 2003:
Thanks for the information. I think jor may be sleeping again, or at least
resting. He got up to do eyedrops around 10 and then crashed. I got up to
eat (after 5 2-hour stretches of sleep) at around 10 and then went back to
bed for 2 hours. This is the first time in my treatment when I recall getting
weaker for three days instead of stronger, but things should turn around again
in a day or two when my immune system and other growing tissues start to grow
again. Right now my innards from the tip of my nose to my belly button feel
like they are burning - probably the mucus membranes are not regenerating.
Judging from last cycle, things should be much better in a day or two and I
am certainly more awake now. But really wobbly on my feet (which I can't
really feel too much any more as they are numb). I can't compare this with
last cycle since thankfully I don't have a cold now.
I feel really sorry for anyone who is doing weekly chemotherapy. Those must
be the ones who lose their sense of taste and appetite full-time and for me
it is only a few days when things don't taste like much and it hurts a bit
to swallow. We had corn meal mush instead of oatmeal today.
We got some books on tape for jor from the library, but I could not find any
particularly good ones. Mostly murder mysteries there. I got one set of 7
tapes - French and Russian short stories. I could not walk to the library
(could have done it Tuesday but not yesterday) and I was tired enough that
I spent most of the time there just sitting instead of looking around.
I got Lord Jim on tape.
#108 Sindi Keesan(keesan) on Sun Oct 12 17:24:03 2003:
Jim thinks the burning in my throat is not thrush but the fact that my mucus
membranes are not regenerating. Today the angles of my jaws also hurt when
I chew anything harder than canteloupe (including semi-ripe honeydew melon).
This also happened last cycle but went away in a few days. I also have some
muscle pains in my upper arms like last time.
Luckily we have lots of ripe canteloupe, pears, and other things. I seem to
have done too good a job with the thank you note to the neighbor who brought
over the apples and today it was two boxes of produce. Spinach too. I made
it over briefly to thank her again (she could barely hear me as the laryngitis
is also worse) and held onto Jim coming back. She and Jim have been neighbors
for a long time - it is good to have neighbors.
Today jor is feeling well enough to go outside for a bit and I hope to feel
well enough to go walking in a couple of days if the rain holds off. Jim is
patching a car window before it rains. I am going back to bed again. Jim
thinks I should be practicing climbing stairs instead.
#109 klg(klg) on Sun Oct 12 21:15:01 2003:
$zippo. Thanks, MESSA.
#110 Sindi Keesan(keesan) on Mon Oct 13 00:22:46 2003:
What is MESSA?
I got up to check email since I am again having trouble finding a possible
sleeping position as my hip joints hurt when I lie on my side because of no
body fat to put things in the proper position and probably something is not
regenerating at the joints. The thrush seems to be slightly improved and I
plan to feel stronger starting tomorrow and to regrow the things that stopped
growing due to the chemicals.
I will experiment with adding a few layers of blanket to the small pillow that
I have been using between my knees to keep the bones from hitting each other.
We all had a nice salad for supper thanks to the neighbor. Jim discovered
that the bag contained not just real green (Romaine) lettuce but even
croutons, powdered cheese and dressing (a salad mix). And there was an
avocado. Jim had half an avocado and a muffin for supper and some popcorn
while feeding his patients a more balanced diet.
#111 Sindi Keesan(keesan) on Mon Oct 13 11:21:21 2003:
Today my thrush appears to be better - my gums don't hurt and my lips do not
tingle. Which implies that my immune system is starting to recover. My legs
may be less wobbly but I am too sleepy to be sure as it is garbage day and
the trucks start at 7:00 in Jim's neighborhood. The last one just went by
and I will go back to sleep after oatmeal.
Jim is taking advantage of having a temporary guinea pig (roommate) to work
on the door gaskets (to block sound) and eventually will finish the
ventilating system because the humidity has gone way up.
#112 klg(klg) on Mon Oct 13 12:07:14 2003:
MESSA is the MEA's version of bcbs.
#113 Sindi Keesan(keesan) on Mon Oct 13 13:13:16 2003:
What is an MEA?
#114 David Brodbeck(gull) on Mon Oct 13 13:19:58 2003:
Michigan Educational Association.
#115 Sindi Keesan(keesan) on Mon Oct 13 18:01:37 2003:
My turn to go online. (I have a bit of competition recently). Jim is out
trying to put an aluminum awning over his side door while also making supper,
before it rains. Jor is continuing to improve.
We went for a couple of walks today and I am back to as much strength and
energy as two days ago and my gums hardly hurt at all now (at least until I
eat) so this is the uphill stage again. My throat still hurts, my jaws do
not, and I seem to be mostly over the hot and cold spells. I should keep
track of all this to know what to expect next three times.
The dogwoods are a really interesting purplish-reddish color and there are
various orange and yellow and white berries, and crabapples, and still lots
of petunias and snapdragons and roses in bloom along with the purple asters.
The seventies chicken-coop style loop around the corner is planted to katsura,
a Japanese tree that is just starting to turn dark purple. The neighbors on
the corner have removed most of their yard decorations (the little flowers
on sticks) and replaced them with artificial colored leaves. Jim's black
currant (from Oregon) has turned pink and yellow. His 12-foot jerusalem
artichoke is still in full bloom with yellow daisy like flowers. I have two
long stemmed pink roses inside. (Jim swatted the third one while chasing a
fly that came in because he had to open the doors to get fresh air, having
put on all the storms windows last time it got cold.)
#116 Sindi Keesan(keesan) on Tue Oct 14 14:34:48 2003:
The mattress pad ordered Sept. 19 was still not here this morning but it
arrived an hour after Jim called. This was the fourth time they 'sent' it.
This time it is 31 pounds and quilted. In its honor I took a bath. I looked
in the mirror and the mirror looks like one of those that makes everything
narrower but so does another mirror so it must be me.
My first bath in 9 days. I have confirmed what I thought I noticed last bath-
my apocrine sweat glands don't smell any more. Odd effect. Nor is my hair
getting oily. These must be other things that are not regenerating. My
fingernails keep growing fast and it is still a challenge to cut them.
#117 Sindi Keesan(keesan) on Tue Oct 14 19:45:28 2003:
The laryngitis appears to be getting worse again which I think confirms that
it is drug related since if so, it is said to start on day 5-10 and it got
worse around day 7, after gradually a bit better last cycle. Our doctor
friend wants me to be seen by an ENT specialist who will stick something down
my throat. I would rather wait for it to get better without that.
#118 Sindi Keesan(keesan) on Tue Oct 14 19:51:45 2003:
Totally unrelated to the topic, but what do other people see at
www.nuttybunch.com? With Arachne and Netscape 4.7 we saw 'Image Image' (which
can be changed to a word and a string of peanuts). With Opera we got a blank
screen. This is supposed to be a website with several links.
#119 Glenda F. Andre(glenda) on Tue Oct 14 20:57:46 2003:
Most of the links lead to pages in Japanese. The main page has some random
family type pictures (5 of them). One of the links "wedding" has information
for RSVPing for their wedding, map to get to the wedding and reception, and
places to connect for accomodation for those coming from out of town. Seems
to be in New Castle, England. A lot of fluff, i.e. falling pastel hearts on
the wedding page, sparkles of red/orange leafs on mouse-over of the links on
the main page. It is a bit cute, but to me just another in a long line of
examples of "just because you can do it, doesn't mean that you should do it"
style of web design.
#120 Sindi Keesan(keesan) on Tue Oct 14 21:50:57 2003:
Thanks, all we could figure out (revealing codes) was that they wanted you
to download macromedia shockwave flash - what exactly is that supposed to do?
I went to their website once and learned nothing. Animation?
Jim will take a quick look at the five photos at the public library some day.
He thought the wedding was going to be in Ireland as the groom's parents still
live there.
As regards your opinion of writing this sort of web site, Jim says 'exactly'.
He finds the Japanese connection funny and will look at the map too and he
thanks you for 'confirming his worst suspicions'. But he supposes it is
harmless. No hurry to get to the library now. Thanks.
Jim says hello to people at grex and wanted to ask about the new twenty dollar
colored bill, where can he learn more about it and why are they changing it
every seven years to thwart counterfeiters if they can print old money still.
They can't take the 50% of American dollars in other countries out of
circulation.
#121 Scott Helmke(scott) on Tue Oct 14 22:14:29 2003:
The Flash stuff is for animations and sound. Some websites depend on it, when
they should instead strive for accessibility.
#122 Still Maxin' and Relaxin' in the Pacific NW(jaklumen) on Tue Oct 14 23:46:58 2003:
resp:120 I think most local financial institutions (banks, credit
unions, etc.) should have information posted. I've seen it. You
might be able to find it on the web as I've seen a few articles on it.
#123 David Brodbeck(gull) on Wed Oct 15 09:30:50 2003:
I've seen TV ads about it, too. Why we're spending taxpayer dollars to
advertise *money* is beyond me.
#124 Sindi Keesan(keesan) on Wed Oct 15 10:50:24 2003:
Jim assumes the site was not designed, just used what they found somewhere
and plugged in a few things. Stupidly designed if it won't show anything at
all without a plugin. Does the site have ads for the hoster? (Maybe in
Japanese?).
Is there some way to download the five photos using their URLs and if so what
are they? (Can I somehow get at them via lynx, which shows [EMBED] before
I reveal code.)
#125 Sindi Keesan(keesan) on Wed Oct 15 14:43:16 2003:
I am supposed to keep gargling salt water for the first two weeks each cycle
because of my mucus membranes not growing back and therefore being more likely
to get infected. This probably also explains why the inside lining of my
throat and gullet feel burning and sore. It does not hurt a lot.
The jaw soreness may be a side effect of vincristine. Last cycle it went away
in a few days.
Things still taste a bit funny.
#126 Sindi Keesan(keesan) on Wed Oct 15 14:51:44 2003:
Vincristine side effects may include transient blindness and difficulty in
walking and wrist drop. Effects are worst at 4-9 days. This is day 10.
Today I walked twice as far as yesterday. My wrists seem a bit weak. The
symptoms get worse after three treatments. Oh well, only 3 to go.
The Type I anaphylactoid reaction (laryngitis) is rare. I have it.
#127 Scotch! Cigars! Coffee!(fitz) on Thu Oct 16 07:27:17 2003:
>123 Advertising the redesinged $20 alerts the public to the change.
Hopefully, no fist fights will ensue from either customers or retailers
thinking that the new bill is bogus. BTW, could you change my $19 bill,
please?
#128 David Brodbeck(gull) on Thu Oct 16 09:35:31 2003:
Re #127:
> BTW, could you change my $19 bill, please?
Sure. Is six $3 bills and five 20 cent pieces okay?
#129 Sindi Keesan(keesan) on Thu Oct 16 17:26:01 2003:
Today was blood draw day. I did not bring my white slip because last time
they said I was in the computer and it was not necessary. This time I was
not in the computer and we had to get another white slip. While waiting I
talked to someone else skinny who assumed my voice problem was the same as
hers. She has a tumor of the esophagus and has a tube inserted into her
stomach somehow since she cannot eat. While waiting again for blood draw I
talked to someone who had breast cancer four years ago and needs to get tested
once a year for five years. She had four chemotherapy, surgery, radiation,
and four more chemotherapy, and said she got more tired each session but the
numb hands recover six months later (except sometimes they are still numb).
I should have a positive attitude and keep pushing myself to move even if
tired.
I have it easy.
We stopped on the way there to collect pawpaws from my tree that the neighbors
had gathered for us. The waist-high neighbor made me a poster that reads:
Sande I hop u fel badr.
Her mother objected to the badr so she explained this as
fin
There is also a polr br with some words in a balloon issuing from its mouth
that none of us could quite figure out:
TYANI
HDAKO
KAFA
She did not want to explain what this meant.
We shared some pawpaws with them.
At the hospital Jim shared pawpaws with the infusion nurse interested in
plants, who will plant the seeds. We then brought some to Jerusalem Market,
where one of the owners will plant the seeds in a pot or bucket. They had
fresh pistachios in the husk today, and fresh figs and dates and cactus pears.
Ayse's was closed.
We picked apples on north campus and near the hospital. I picked from a tree
that appears to have been designed as a grafted crabapple that lost its graft.
The tree is a bunch of sprouts with knee to waist high apples. We shared some
of the less buggy ones.
On North Campus we got a few monster windfalls from the Ford library and then
admired the gifts to Ford (Korean lacquer, Liberian embroidery) and the
centennial art (American made popsicle stick lampshade and dollar bill flag).
I think I walked my 1/2 mile today. Jim is now attempting to find some
compromise between how jor cooks rice (boiled in lots of water with the cover
off) and how he cooks it (pressure cooker, bring to pressure, turn off). He
will run the dehumidifier in the kitchen. The house is getting too humid and
now we have fans blowing bedroom air to teh basement dehumidifier and bringing
up cold dry basement air. This won't work in colder weather as the basement
needs insulating. The insulation boards have been waiting 20 years. Maybe
this is the incentive needed to get them on the walls.
#130 Sindi Keesan(keesan) on Thu Oct 16 17:34:30 2003:
Correct that KAFA to KAFR and the D in the previous line is backwards.
Monster is spelled Mastr so there could be a missing n in Kafr.
A couple of nights ago we had a friendly 3-way scrabble game. Jim played with
dyslexia and wanted to use the word PRON ('shrimp'). John played with one
eye. I viewed the letters from a horizontal position to which I had gotten
used while grexing on my back. Nobody won since we were not counting points.
We have a piece of drywall blocking the direct cold draft in my room, so that
it goes up the wall instead of aiming directly at me. Cold basement air comes
up to replace the warmer moister house air. Eventually this will all be
ducted to a small warm space with the dehumidifier in it, some year. In the
meantime I added another blanket. No point in heating the basement.
#131 Sindi Keesan(keesan) on Fri Oct 17 10:37:43 2003:
I did so well picking apples that today we will be picking grapes. Jim tried
to put a friend who wants to make pawpaw wine in touch with a friend who grows
pawpaws and lives way west of town, and the latter invited us all to supper
and a tour of his orchard which we visited two summers ago by bike. He has
variuos other interesting fruits none of which were ripe in August. A few
miles from him are the grapes of another friend. The two of them may pick
while I sit in a solar-heated car if I run out of energy. I am taking along
a chair cushion and possibly a camping mat as I tend to conk out in late
afternoon.
My throat has been sore for a few days, with some intestinal symptoms and two
days of off-on headache, indicating I got some infection during the low point
of my immune system but the headache is gone and the throat a bit better.
I have to be careful to stay warm today and maybe I should not be overdoing
the exercise like I have been. Yesterday I lay down and could not move for
half an hour.
Looks like I will never know what the POLR BR is saying. Perhaps it ate some
alphabet soup.
#132 Sindi Keesan(keesan) on Fri Oct 17 12:39:29 2003:
Just did some more reading on peripheral neuropathy = the tingling and
numbness in hands and feet. For a 'fair percentage' of patients this will
get better within weeks of ending therapy as the nerves regenerate. For
others it will be permanent and maybe worse. I hope the latter effect is
less common in those of us being treated only once in three weeks. Leukemia
patients are treated weekly.
#133 Sindi Keesan(keesan) on Fri Oct 17 13:05:07 2003:
The nurse called back with my blood test results. WBC (white blood cell
count) 3.8, normal being 4.0-10.00, last cycle this time being 7.2. This
includes the immune system and the platelets (clotting system). Neutrophils
(immunity) 2.7, normal being 1.4-7.5 so I am lowish normal, last cycle 5.4
(after a bad cold which increases immunity I think) and end of cycle 4.2.
Looks like I am a day or two behind in recovery compared to the last cycle.
It is safe to visit people if they are not sick, says the nurse, and I should
make sure to wash my hands. The first cycle my neutrophil count was only 0.1
(which is what it felt like Sunday).
#134 Sindi Keesan(keesan) on Sat Oct 18 00:16:55 2003:
Today we went to pick grapes. It was cold and windy so I went back to the
car while Jim and Peter picked, and fell asleep a few times. Then we hiked
around the largest pawpaw orchard I have seen at a friend's house. He must
have 500 trees planted and is evaluating them for when they lose their leaves,
the size and color and taste of the fruit, etc. He wants smaller fruit
clusters. He has some monster fruits up to 5" long. They are yellow or
orange fleshed with various flavors - canteloupe, mango, avocado -like. The
skins can be green or yellow (easier to spot on the ground). Some ripen too
early or too late for here. Peter took enough fruit to make wine. He has
a winery in Tecumseh that makes grape, apple, and cherry wine already. He
brought lemon-flavored pickled watermelon rind and also wine jelly. Susan
made supper with lots of their garden produce. I conked out on the couch
after supper while the guys talked fruit. It is dark and quiet where they
live - my first dark and quiet experience this year. From Jim's low traffic
street you can hear I-94 at all hours.
#135 Sindi Keesan(keesan) on Sat Oct 18 11:12:11 2003:
When I threw up unexpectedly at 4 am I was worried that the chemotherapy might
be responsible but Jim said he also felt queasy. He suspects that we sampled
some seedling pawpaw with too much of some chemical. Our friend told us that
the owner of the largest pawpaw orchard in the country is allergic to pawpaws.
We also tried an underripe one that Jim dried. We have had no troubles with
pawpaws from our own trees.
Or it might be the latest intestinal virus that I probably picked up last
weekend when my immunity was low. I am fine today. We may hike over to
Eberwhite woods to say hello to the people doing the stewardship day there
until noon. I don't think I can cut out buckthorn quite yet.
The wine jelly actually tasted like good grapes, possibly because of the added
sugar. Wine tastes just sour to me.
#136 Sindi Keesan(keesan) on Sat Oct 18 14:03:44 2003:
We hiked to the west branch library instead. They have low vision aids such
as magnifying glasses and something that displayed enlarged print on a screen.
And a telnet icon. Jor said he could not get telnet to work here - I suspect
he could not red the little word telnet under the icon.
#137 Sindi Keesan(keesan) on Sat Oct 18 19:23:36 2003:
I was not sure I could walk back from the library but I did, and when we got
back Jim went to bed. I have found my limit again. We have to process grapes
now, cleaning out the spiders and stems and making juice from them.
I am still getting nice emails from other translators and friends. My
Hungarian friend phoned our mutual friend who is Slovene and lives in Italy
and let her know I have cancer. The Slovene friend's sister finished
chemotherapy in July. I will write her next week after my CT scan. A
translator friend in wants to pray for me and wonders how she will be able
to pay this month's rent.
#138 Sindi Keesan(keesan) on Sun Oct 19 18:56:40 2003:
We walked to Eberwhite Woods and most of the way through it and came out at
the community garden. On the way saw lots of squirrels and trees, some
puffballs and shelf fungus, moss on dead logs, and Jim found some pruning
shears and called the leader of yesterday's stewardship day about returning
them to someone who lost them. At the garden there was lots of swiss chard,
arugula, mizuna, all sorts of kale, celery, lettuce, and slightly frosted
tomato plants. We came back and Jim picked up more of his own tomatos from
teh ground (never did put up cages) and is making instant pizza (baked tomato
and cheese sandwiches) which I am supposed to go eat now.
The garden has some very comfortable straw bales for sitting on, and Zion
church has a pretty good red apple tree and a couple of trees with giant
hawthorn berries which we thought at first were crabapples.
He thinks the walk was 3/4 mile each way, with only two stops to rest, which
would imply I could probably make it into town but probably not back.
Maybe next week I can make it into town. I have pretty much run out of good
books at the local branch library. Got out a Turkish cookbook.
#139 Sindi Keesan(keesan) on Sun Oct 19 22:39:02 2003:
I just read about a couple of studies of patients with my type of lymphoma,
older than me. In the first study, of people over 60, survival rate went up
from 57^ to 70% when they added Rituxan to the CHOP drugs, and 18 month
remission went from 64 to 77% with 91% responding (they had fewer cancer cells
but not none). In another study 63% of those receiving Rituxan had remission
for a median of over 5.3 years (about as long as the drug had been around).
A study of 400 elderly patients gave 1 year survival up from 68 to 83%, with
complete remission up from 60 to 76%. I wonder what complete remission means
- no symptoms or no cancer cells found?
My chances are somewhat improved by being under 60, I think. And maybe also
by the fact that my tumor could not be felt after the first session. I will
know more a couple of days after tomrrow's repeat CT scan. Only three more
IVs after tomorrow, with luck. My hand still aches from the last one.
One person I met with lymphoma did not need a second treatment for 9 years.
#140 Sindi Keesan(keesan) on Mon Oct 20 22:12:09 2003:
Today after Jim made the fifth trip to Murray's for a belt for the car, we
got me to the hospital as instructed an hour before the 5:30 CT scan
appointment. They asked Jim if he was pregnant and I told them I was the
patient and I filled out a form assuring them I had no allergy to the iodine
contrast solution, and was not taking certain drugs, and had no heart or
kidney problems. Some people have reactions to the contrast solution (barium
citrate smoothie - a very cold white liquid that comes in 16 oz bottles which
they tried to make me drink two of, and I managed 24 oz. The second bottle
was at least not refrigerated. I was shivering for an hour after the first.)
Or to the stuff they inject during the procedure through an IV. The IV went
unusually badly but the technician asked if it was okay not to redo it (and
start all over, forget it) due to its hurting and blood all over the place
and I said yes, let's just get it over with. I only needed it in for 20
minutes while they moved me in and out of a hole in the machine and had me
hold my breath. They took photos (?) before and after the iodine solution,
which stings going in and makes you feel warmish. All I had to do besides
ignore the pain was keep both arms lifted over my head.
Jim says he saw Scott while biking to Murray's.
The CT scan is based on a small dose of radiation so it is done through the
radiology department. They will read it tonight and get results to my doctor
in 2 or 3 days.
Afterwards we visited our doctor friend who brought me to the hospital in
August to share pawpaws and pickled peppers, and he also checked me out and
says I still have fluid on the lungs but he can't find any enlarged lymph
nodes or tumors. I hope the CT scan agrees. There are lymph nodes at all
four intersections of limbs and torso, and under the ears.
We then took me to the public library while Jim picked up a few things from
my apartment, and celebrated at Dinersty. My arm finally stopped hurting.
I make sure to wear old shirts when being jabbed.
#141 klg(klg) on Mon Oct 20 22:33:47 2003:
I swig that contrast liquid like cold beer on a hot day. Down the hatch
in 5 min. or less. Never have any sting from the IV fluid. Just a
metallic taste in the mouth and a warm feeling, esp. in the groin, for a
short time. Next picture session is the 1st wk of Nov, I believe.
#142 Christopher L Goosman(goose) on Mon Oct 20 23:34:25 2003:
It is amazing the number of blood vessels in the groin of a male. I found
the iodine IV to be strangely pleasant. The drinkable contrast though...ugh.
#143 Rane Curl(rcurl) on Tue Oct 21 02:37:33 2003:
Re #140: it could not have been barium citrate. Barium citrate is soluble
in water, and soluble barium compounds are very poisonous. The usual
barium compound in contrast agents is the very insoluble barium sulfate.
It is possible that they suspend it in a "citrate" drink of some sort, to
make it more palatable. That, however, would not create any barium citrate.
#144 John Ellis Perry Jr.(jep) on Tue Oct 21 11:42:37 2003:
re resp:140: So, are congratulations in order? Grex wants to know, is
Jim pregnant?
#145 Sindi Keesan(keesan) on Tue Oct 21 11:53:26 2003:
Re 144, No. I can look up which barium solution it was. Fruit flavored.
I should also read about how CT scans work. THe technician watched the
injectin then left the room to run the machine so something must be
radioactive. Also Jim had to wait outside. I did not notice anyone shaking
the solution to suspend anything. What was so bad about the solution when
you drank it, goose? They said some people get nauseous. My big problem was
the coldness and the volume.
#146 Sindi Keesan(keesan) on Tue Oct 21 12:03:40 2003:
Computed tomography (CT) a method of body imaging in which a thin
[74]x-ray beam rotates around the patient. Small detectors measure the
amount of x-rays that make it through the patient or particular area
of interest.
A computer analyzes the data to construct a cross-sectional image.
These images can be stored, viewed on a monitor, or printed on film.
In addition, three-dimensional models of organs can be created by
stacking the individual images, or "slices."
How the test is performed
The patient will be asked to lie on a narrow table (gantry) that
slides into the center of the scanner. Depending on the study being
performed, the patient may need to lie on his/her stomach, back, or
side. If contrast media (dye) is to be administered, an IV will be
placed in a small vein of a hand or arm.
Much like standard photographic cameras, subject motion causes blurred
images in CT. Therefore, the technologist operating the scanner and
supervising the patient will give instructions through an intercom
when to hold one's breath and not move.
As the exam takes place, the gantry will advance small intervals
through the scanner. Modern "spiral" scanners can perform the
examination in one continuous motion of the gantry. Generally,
complete scans will only take a few minutes, however, additional
contrast-enhanced or higher-resolution scans will add to the scan
time. The newest multidetector scanners can image the entire body,
head to toe, in less than 30 seconds.
How to prepare for the test [76]Return to top
The patient may be asked to drink oral contrast either immediately
prior to, or 4 to 6 hours before, the CT scan. The contrast may be
composed of non-reactive (inert) chalky-tasting barium sulfate, which
will eventually pass in the stools, or absorbable clear Gastrografin
solution. The health care provider may also advise fasting (no solids
or liquids) for 4 to 6 hours if contrast dye is to be used.
The CT scanner has a weight limit to prevent damage to the mechanized
gantry. Have the health care provider contact the scanner operator if
you weigh more than 300 pounds.
Since metal is very, very dense, the x-ray beam has difficulty passing
through it and results in errors in the involved constructed slices
(artifact). Therefore, the patient will be asked to remove jewelry and
wear a hospital gown during the study.
How the test will feel [77]Return to top
The x-rays are painless. The primary discomfort may be from the need
to lie still on the table.
If intravenous contrast dye is given, the patient may initially feel a
slight burning sensation within the injected arm, a metallic taste in
the mouth, and a warm flushing of the body. These sensations are
normal and usually reside within a few seconds.
Why the test is performed
CT provides rapid, detailed cross-sectional imaging of the patient
which can then be reconstructed into three-dimensional models, as
needed. Intravenous contrast enhanced scans allow for evaluation of
vascular structures and further evaluation of masses and tumors.
CT is often utilized in the trauma setting to evaluate the brain,
chest, and abdomen. As well, CT can be used to guide interventional
procedures, such as biopsies and placement of drainage tubes.
What the risks are
CT scans and other x-rays are monitored and regulated to provide the
minimum amount of radiation exposure needed to produce the image. CT
scans provide low levels of ionizing radiation which has the potential
to cause cancer and heritable defects. The risk associated with any
individual scan is small; however, the risk increases as numerous
additional studies are performed.
During pregnancy, an [80]abdominal CT scan is usually not recommended,
due to risk to the exposed fetus, including developmental
malformations and childhood cancers. Patients who are or may be
pregnant should speak with their health care provider in order to
first take a pregnancy test or choose an appropriate alternative
imaging modality without risk to the fetus, such as ultrasound.
The most common intravenous contrast dye is iodine based. A person who
is allergic to iodine (such as those with seafood allergies) may
experience [81]nausea, [82]sneezing, [83]vomiting, [84]itching, or
[85]hives. If contrast administration is essential for a patient with
any of the prior reactions, the health care provider may choose to
pre-medicate the patient before the scan with a short course of
immune-suppressing steroids and/or Benadryl. Alternatively, other
contrast media or other imaging modalities (such as ultrasound or MR)
may be used.
Rarely, the dye may cause [86]anaphylaxis (a life-threatening allergic
response), usually manifested by swelling in the airway. The patient
is instructed prior to the scan to notify the technologist via the
intercom if he/she has difficulty breathing. If such a rare reaction
does take place, the exam will be stopped, and the patient will be
rapidly treated with special medication and closely monitored by a
physician.
Iodine-based contrast is primarily filtered out of the bloodstream by
the kidneys, and thus patients with diabetes or renal disease will
require continuous hydration and close monitoring of kidney function.
Diabetics on certain a glucose-lowering medication
(glucophage/metformin) and renal dialysis patients should speak with
their physician regarding stopping the medication, and the proper
scheduling of the scan in conjunction with dialysis, respectively.
Consent from the patient or designated guardian must be obtained prior
to the use of intravenous contrast.
63. http://www.nlm.nih.gov/medlineplus/ency/article/003330.htm#Alternative%20Names
Apparently the IV solution can also cause nausea, not just the barium.]
#147 Sindi Keesan(keesan) on Tue Oct 21 12:20:02 2003:
[1] UT Southwestern Medical Center | [2]Zale Lipshy University
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CT Scan
What is a CT Scan?
A CT (Computed Tomography) scan, often called a CAT (Computed Axial
Tomography) scan, is a painless examination that gives the physician
an unobstructed, cross-sectioned look at organs and structures that
cannot be seen clearly on conventional X-rays.
How does CT scanner work?
The CT scan combines a sophisticated X-ray system with a high-speed
computer. The scanner obtains slices (blocks of image data that can be
viewed on an end to end projection) of information that will assist
the patient's physician in making a diagnosis and planning a
treatment. This combination produces a picture of the body, allowing
the physician to see tissue and bone structures in fine detail. The
imaging procedure and the images are best described thinking of a loaf
of bread. The entire loaf being the part of the body that is scanned.
Anywhere in the loaf of bread a single slice can be picked out and
looked at end to end.
Why is CT important?
CT offers a non-invasive way to obtain information about the patient's
body that may otherwise not be as easily seen. It can lead to early
detection and treatment of disease and pathology by a physician. CTs
can make it possible to see various types of tissue and can provide
important information about the brain, spine, joints and internal
organs. The CT scan is a "window" into the body.
What can I expect?
When your physician refers you for a CT exam, it is important to talk
to him/her about all of your questions or concerns. It is important to
tell your doctor if there is any chance you could be pregnant or
trying to get pregnant. You also need to inform your doctor if you are
allergic to iodine or presently taking a medication for diabetes
called glucophage. If abdominal imaging is planned, tell your doctor
if and when a previous barium exam was done. A recent barium exam
could interfere with a CT procedure.
When you arrive, a technologist and or nurse will ask you certain
questions pertaining to your medical history and explain your
procedure. You will be asked to change into a hospital gown and be
given a secure place to store your clothing and valuables. Any metal
or plastic objects will need to be removed before your scan.
[Nobody asked questions, it was just a sheet of paper. No hospital gown
was needed. They just checked that I had no metal snaps or buttons or
anything else metal. I wore loose knit cotton pants, and long-sleeve
t-shirt that pushed up above my elbow for the IV, and Jim's sweater
because mine would not push up far enough. I had no valuables but Jim.
I had no buttons either.]
Some CT produces require two sets of scans. The first scan will be
without IV contrast and the second scan will be with IV contrast. This
is a normal CT technique that helps differentiate tissue types. The IV
contrast is injected into a vein in your arm. For abdominal /pale CT
procedures, you will also be asked to drink an oral contrast (liquid
barium). The oral contrast will highlight and abnormal in your
digestive tract.
[This did the procedure twice for the abdominal scan, before and after
injecting the iodine dye solution. These people should have proofread.]
Must I do anything to prepare for the exam?
Yes. All contrast exams require that you do not eat or drink anything
4 hours before the procedure. You can take your prescribed medicines
if needed, under the direction of your physician. This can be
discussed when your exam is scheduled.
[6 hours, or 4 if you are diabetic.]
What happens during the examination?
In the scanner room, there is a patient table and a structure with a
big round hole in the middle called a gantry. Before the scan, a
technologist will assist you onto the scanning table. Depending on the
type of CT exam being performed, you will be positioned either head of
feet first and in your back or abdomen.
[on not in, or not of. I would not have needed assistance had I been able
to use both arms, but the left one was not able to bend and it hurt.]
When you are comfortable, the technologist conducting the examination
will move the table into the gantry opening until you reach the first
scan position. You will be given specific instruction about how to
breath during the scan, depending on the type of scan you are having.
At that point, all you have to do is relax and remain still while each
scan is being taken.
[And hold your arms stiff vertically for the whole procedure. The machine
had a recording telling me when to breathe. You have to hold your breath
so that your diaphragm does not move, spoiling the picture.]
You can think of the CT scanner as a fancy X-ray machine. Other than a
sound like a clothes dryer, you won't even notice when the system is
on and taking pictures. Several scans are taken while the table is
moving; when the table is moving it is allowing for a different scan
location.
[The machine makes noise when it is on. When the noise stops you are
done.]
How will I find out the results?
When the exam is complete, you may leave the facility. If IV and or
oral contrast was used, it will be necessary to drink additional
liquids, preferably water, throughout the day of the examination to
help eliminate the contrast from your system.
[They never mentioned that I should drink anything so I did not drink
anything for a few hours afterwards. I should read up on tests before
going to them. I drank 1/2 glass of water at supper.]
All procedures will be read by the Radiologist on staff after the scan
is completed by the technologist.
The final report will be available for your physician within 24-72
hours.
[Read the same night, available in 2-3 days.]
Last Updated October 1, 2002. Unauthorized reproduction of this
material is strictly prohibited.
Copyright 2002, St. Paul University Hospital
References
8. http://www.stpauldallas.com/index.htm
#148 klg(klg) on Tue Oct 21 12:32:47 2003:
CT Scan (or other x-ray exam) Tip-
If you need to disrobe for the procedure, you'll probably be given a
locker for your stuff. However, it probably won't have a lock. So,
unless you are accompanied by a relative/friend who can hold your
valuables it's a good idea to bring a padlock for the locker to
safeguard your possessions whilst in the procedure room.
#149 Scott Helmke(scott) on Tue Oct 21 12:41:14 2003:
Depends on the facility, probably. When I had my shoulder scanned a few years
ago the UM hospital had lockers, with locks, and the locks used brass keys
so you could bring it into the lab with you.
#150 Rane Curl(rcurl) on Tue Oct 21 12:57:54 2003:
If all that is a CT scan, what is a CAT scan? (I had what was described
above, with an IV contrast agent, for a renal examination. I think I
had a CAT with a californium injection for a bilary inspection. The
latter was detecting the radiation from the californium and the former
was using x-rays from an external source. Is that the substance of the
differences, or is there more?)
#151 Christopher L Goosman(goose) on Tue Oct 21 13:15:37 2003:
RE#145 -- It kind of tasted like warm yogurt, mixed with chalk. Even thinking
about it now induces a nausia...I really would have appreciated it if it were
cold, but I drink cold things all the time.
#152 Sindi Keesan(keesan) on Tue Oct 21 15:47:49 2003:
I think CT and CAT are the same thing - computed tomography and computer
assisted tomography. The former name is preferred now, at least that is what
they call it at U of M hospital. Maybe goose had the unflavored stuff. My
first time in July my urine smelled like the stuff I drank for 10 days
afterwards but this time I don't notice any smell in it.
I had a MUGS exam in which they took some of my blood and added something
radioactive to it and injected it back. I don't know the details as I was
half asleep at the time. It was done by Nuclear Medicine dept.
#153 Sindi Keesan(keesan) on Tue Oct 21 15:50:57 2003:
CAT - computed axial tomography. I could not find MUGS so perhaps I got the
term wrong (unless you want a mug from a company called nuclear). MUGA?
#154 Sindi Keesan(keesan) on Tue Oct 21 15:59:39 2003:
The MUGA scan
The MUGA scan (MUltiple Gated Acquisition scan) is an extremely useful
noninvasive tool for assessing the function of the heart. The MUGA
scan produces a moving image of the beating heart, and from this image
several important features can be determined about the health of the
cardiac ventricles (the heart's major pumping chambers).
How is the MUGA scan performed?
A MUGA scan is performed by attaching a radioactive substance,
Technetium 99, to red blood cells, then injecting the red blood cells
into the patient's bloodstream. The patient is then placed under a
special camera (a gamma camera), which is able to detect the low-level
radiation being given off by the Technetium-labelled red cells. (The
level of radiation to which a patient is exposed during a MUGA scan is
felt by experts to be minimal - it is in the same general range as the
level of radiation received with a chest x-ray.) Since the red blood
cells (including those that are radio-labelled) fill the cardiac
chambers, the image produced by the gamma camera is essentially an
outline of those chambers. With some fancy computer manipulation, the
the final product is a movie of the heart beating.
What can be learned from the MUGA scan?
Several important features of cardiac function can be measured from
the MUGA scan. If a patient has had a heart attack, or any other
disease that affects the heart muscle, the MUGA scan can localize the
portion of the heart muscle that has sustained damage, and can assess
the degree of damage. But more importantly, the MUGA scan gives an
accurate and reproducible means of measuring and monitoring the
ejection fraction of the cardiac ventricles.
The left ventricular ejection fraction (LVEF) is an excellent, and the
most commonly used, measure of overall cardiac function. The ejection
fraction is simply the proportion of blood that is expelled from the
ventricle with each heart beat. So, for instance, if the left
ventricle ejects 60% of its blood volume with each beat, the LVEF is
0.6. (A normal LVEF is 0.5 or greater.)
[Here is why they did this scan on me. Adriamycin is what is causing my
laryngitis. They only did the MUGA once while I was in the hospital,
after the first chemotherapy. I was wondering about the purpose of it.
Nice to know my heart is okay, even though my pulse still goes way up when
I bend over.]
A common clinical situation in which repeated MUGA scans are useful is
in following a patient's cardiac function during the delivery of
chemotherapy for cancer. Some chemotherapeutic agents (adriamycin
being the most notable) can be quite toxic to the heart muscle. By
measuring the MUGA ejection fraction periodically during chemotherapy,
oncologists can determine, on an ongoing basis, whether it is safe to
continue with the therapy, or whether certain medications need to be
stopped. The MUGA scan is accurate and reproducible enough to detect
subtle, early changes in cardiac function that might easily be missed
by other techniques. It is a highly effective, noninvasive means of
monitoring one of the worst side effects of chemotherapy, and allowing
that therapy to be delivered more safely and effectively than would
otherwise be possible.
~ [76]Richard N. Fogoros
63. http://results.about.com/health
I am starting to find out what other tests were done in the hospital as the
bills come in. I think they checked my lymphoma cells to make sure they were
displaying the correct antigen before treating with Rituxan.
#155 klg(klg) on Tue Oct 21 21:50:44 2003:
Are u gettin a PET?
#156 Sindi Keesan(keesan) on Wed Oct 22 09:48:11 2003:
klg: No PET that I know of. Did you get one and if so why?
My good news for this week:
Date: Wed, 22 Oct 2003 09:07:07 -0400
To: keesan@cyberspace.org
Subject: Re: CT scan
Your CAT scan shows a very nice response.
Enlarged lymph nodes previously seen in the chest have resolved. In
the abdomen the lymph nodes have also pretty much resolved and the
spleen has returned to near normal size.
Looks good!
Judy
>>> Sindi Keesan 10/21/03 12:04PM >>>
Please can you let me know the results when you get them today or
tomorrow. The scan was Monday evening.
Sindi Keesan
--------
Sounds like I still have some abnormal lymphocytes (tumor cells) but less
of them in fewer places. Hopefully the next three treatments will shrink
everything back to normal size. I wonder why the Rituxan does not get all
the cells on first exposure. The other drugs only get cells while they
are dividing, which they must not do every day.
Yesterday's walk was around the neighborhood. It was too close to rush
hour to cross the main streets but today we might try to get across
Liberty for a walk. Just a block down Jim's street he nearly stepped on a
large garter snake on the sidewalk adjacent to the yard where they do a
burn every year and plant prairie vegetation.
The hand where they put the IV last treatment has finally stopped hurting
again. It started to hurt again about the 10th day of the cycle, maybe
from scars forming? I asked the CT nurse to spare my hand as I needed it
for infusion. Anyone know why the infusion people insist on using hands?
(It is more convenient as I can keep my shirt rolled down to stay warmer.)
#157 Sindi Keesan(keesan) on Wed Oct 22 11:35:25 2003:
Now that I have been pronounced okay (moving in the right direction) Jim
accepted a couple of translations for me this morning. I still have the
problem of pain in the sit bones if I try to work for long, but my brain seems
to have recovered at least. The shaky hands are less shaky while typing but
I still make more mistakes. The first job is something interesting about a
gadget to help heal broken bones, which I hope I never need to use. It is
not clear from the drawing or the text whether something is a plate or a strap
- maybe Jim can figure it out from the other drawing. Got to get to my
apartment somehow for a better dictionary.
#158 Todd(tod) on Wed Oct 22 11:41:28 2003:
#159 Spam.com is the place to be!(jiffer) on Wed Oct 22 18:43:03 2003:
A lot of cells go through a "lag" period before starting the "log" period
(division), so you may not always catch cells via their method of
reproduction. You are also dealing with "immortal" cells (which cancer cells
are). I should research how Rituxan is supposed to attack these cells. It
is difficult to attack eukarotic cells that are attacking the body because
you are made up of eukarotic cells, bacteria (prokarotic cells) are much
easier to deal with.
#160 Sindi Keesan(keesan) on Wed Oct 22 19:59:41 2003:
Re 158 - Russian.
Re 159 - the body is set up to attack abnormal body cells because they put
out a sort of distress signal in the form of a protein on the surface which
Rituxan helps the body to recognize by binding to it. Some cancer cells
probably stop making this signal - I hope I don't have any of those.
Anyone know how often cancer cells reproduce and how long the drugs are in
effect?
Today's exercise was a car ride downtown and some walks around the bank and
farmer's market. We ran into friends twice, one of whom had gone to Croatia
for tests when she got sick because one test here costs more than a bunch of
tests there and airfare both ways. One farmer told me about her sister who
died of cancer in her nose, but only after 18 years of treatments. We then
visited a friend who isolated me in a room behind a glass door. His resident
child and her two friends kept coming by to wave at me. They know all about
white blood cells because they studied AIDS in elementary school.
I had better get back to translating before the next one arrives. There is
a sideways view of the thing that is either a strap or a cover plate and it
could still be either one.
The funny taste that I notice when I eat fruit was also there when I tasted
a tootsie roll at the bank (Jim ate it for me) so maybe it is the sugar in
the fruit that is tasting sort of sour. Odd. Water also tastes funny.
We have two buckets of grapes to clean and juice after this translation. Lots
to accomplish before Monday when I am out for a week again. Another apple
tree to pick Saturday when they have scheduled warmer weather again. Are
there any stores near Briarwood that sell cheap writeable CDs? A friend will
trade us a working CD writer (probably antique) for a package of them.
It is such a pleasure not having to take any pills or gargles for a whole
week. Or move over 12" every time I roll over on the new 3' wide mattress
pad. We stopped f