|
Grex > Health > #87: Sindi Keesan's Lymphoma Journal |  |
|
| Author |
Message |
| 25 new of 480 responses total. |
rcurl
|
|
response 96 of 480:
| 
Oct 11 04:18 UTC 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.
|
slynne
|
|
response 97 of 480:
|
Oct 11 04:43 UTC 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.
|
scg
|
|
response 98 of 480:
|
Oct 11 05:00 UTC 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.
|
cmcgee
|
|
response 99 of 480:
|
Oct 11 12:23 UTC 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.
|
murph
|
|
response 100 of 480:
|
Oct 11 14:01 UTC 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.
|
keesan
|
|
response 101 of 480:
|
Oct 11 16:49 UTC 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).
|
keesan
|
|
response 102 of 480:
|
Oct 11 19:23 UTC 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.
|
klg
|
|
response 103 of 480:
|
Oct 11 22:18 UTC 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.
|
cmcgee
|
|
response 104 of 480:
|
Oct 12 01:20 UTC 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.
|
keesan
|
|
response 105 of 480:
|
Oct 12 03:28 UTC 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.
|
jep
|
|
response 106 of 480:
|
Oct 12 05:28 UTC 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.
|
keesan
|
|
response 107 of 480:
|
Oct 12 17:51 UTC 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.
|
keesan
|
|
response 108 of 480:
|
Oct 12 21:24 UTC 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.
|
klg
|
|
response 109 of 480:
|
Oct 13 01:15 UTC 2003 |
$zippo. Thanks, MESSA.
|
keesan
|
|
response 110 of 480:
|
Oct 13 04:22 UTC 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.
|
keesan
|
|
response 111 of 480:
|
Oct 13 15:21 UTC 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.
|
klg
|
|
response 112 of 480:
|
Oct 13 16:07 UTC 2003 |
MESSA is the MEA's version of bcbs.
|
keesan
|
|
response 113 of 480:
|
Oct 13 17:13 UTC 2003 |
What is an MEA?
|
gull
|
|
response 114 of 480:
|
Oct 13 17:19 UTC 2003 |
Michigan Educational Association.
|
keesan
|
|
response 115 of 480:
|
Oct 13 22:01 UTC 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.)
|
keesan
|
|
response 116 of 480:
|
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.
|
keesan
|
|
response 117 of 480:
|
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.
|
keesan
|
|
response 118 of 480:
|
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.
|
glenda
|
|
response 119 of 480:
|
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.
|
keesan
|
|
response 120 of 480:
|
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.
|