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Grex > Health > #87: Sindi Keesan's Lymphoma Journal |  |
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| 25 new of 480 responses total. |
keesan
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response 116 of 480:
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Oct 14 18:34 UTC 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.
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keesan
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response 117 of 480:
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Oct 14 23:45 UTC 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.
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keesan
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response 118 of 480:
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Oct 14 23:51 UTC 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.
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glenda
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response 119 of 480:
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Oct 15 00:57 UTC 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.
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keesan
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response 120 of 480:
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Oct 15 01:50 UTC 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.
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scott
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response 121 of 480:
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Oct 15 02:14 UTC 2003 |
The Flash stuff is for animations and sound. Some websites depend on it, when
they should instead strive for accessibility.
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jaklumen
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response 122 of 480:
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Oct 15 03:46 UTC 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.
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gull
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response 123 of 480:
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Oct 15 13:30 UTC 2003 |
I've seen TV ads about it, too. Why we're spending taxpayer dollars to
advertise *money* is beyond me.
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keesan
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response 124 of 480:
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Oct 15 14:50 UTC 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.)
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keesan
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response 125 of 480:
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Oct 15 18:43 UTC 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.
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keesan
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response 126 of 480:
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Oct 15 18:51 UTC 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.
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fitz
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response 127 of 480:
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Oct 16 11:27 UTC 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?
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gull
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response 128 of 480:
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Oct 16 13:35 UTC 2003 |
Re #127:
> BTW, could you change my $19 bill, please?
Sure. Is six $3 bills and five 20 cent pieces okay?
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keesan
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response 129 of 480:
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Oct 16 21:26 UTC 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.
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keesan
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response 130 of 480:
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Oct 16 21:34 UTC 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.
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keesan
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response 131 of 480:
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Oct 17 14:37 UTC 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.
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keesan
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response 132 of 480:
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Oct 17 16:39 UTC 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.
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keesan
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response 133 of 480:
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Oct 17 17:05 UTC 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).
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keesan
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response 134 of 480:
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Oct 18 04:16 UTC 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.
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keesan
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response 135 of 480:
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Oct 18 15:12 UTC 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.
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keesan
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response 136 of 480:
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Oct 18 18:03 UTC 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.
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keesan
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response 137 of 480:
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Oct 18 23:23 UTC 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.
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keesan
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response 138 of 480:
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Oct 19 22:56 UTC 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.
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keesan
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response 139 of 480:
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Oct 20 02:39 UTC 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.
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keesan
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response 140 of 480:
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Oct 21 02:12 UTC 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.
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