128 new of 475 responses total.
I compiled Kermit today instead of ratpoison, since the author of the Kermit book offered to help. You can compile without ncurses, and don't get a little graphical indicator of download progress, just Butes and percentage. Fine with me. Ratpoison needs autoconf and automake to compile as designed, and also you need X on the computer where you are compiling (X libraries and headers). Some kind people in the mail list explained to me how to make a full-screen xterm and keep the menu from going away so that I don't need a mouse to use swm (unless I accidentally remove the menu, in which case Ctl-Alt-Del and startx gets it back). But I still have no cursor when using pine, which is rather a nuisance. Other people have cursors where I don't. Our mini-linux is also missing bold fonts in X but I can number my links in lynx since they are not bold. If anyone else is interested I can provide the link to this 2.7M download that does not require a linux partition. I am reading a book about oxygen. I was wondering why in addition to breathing fast I also had a pulse of 120 (normal being about 80) when I was in the hospital, which took a couple of months to go down even after my hemoglobin values went up and I was breathing normally (they took off 3 liters of fluid from around my lungs, somehow created by the lymphocytes). A shortage of oxygen in the body causes the heart to beat faster and it apparently takes a while to go back to normal even when you have enough oxygen. I had two tranfusions totalling 3 units and my hematocrit went back up from 24. Normal is about 35-40 and I used to be about 45. Scary in retrospect. They were measuring my blood oxygen in the hospital and it was low enough until the last day that I needed a tube delivering extra oxygen to my nose. I still can't cut my fingernails without an effort. Might be time to start doing some deliberate exercises to regain my muscles. I shoveled snow yesterday but that won't be available much longer. My nails actually seem stronger than they used to be. Maybe it is all the milk I am drinking so I will grow big and strong.
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My fingernails never fell out or got weaker. Either they got stronger, or I am still too weak to cut them properly. The cursor now works in rxvt/pico. Turns out that when you telnet to grex and have a white on black screen, with rxvt set to black on white screen with default black cursor, you don't see the black cursor on the black screen at grex. I now have a green cursor in rxvt and the next linux version will have a colored cursor. I also managed to get rid of the scrollbar with +sb (-sb adds it, but that is the default unlike xterm where no bar is default). None of the X fonts I have seen is as readable as the standard console font. In one the a looks like an o, in another the m and w are spindly. Different body parts apparently regenerate at different rates. My fingernails do not seem to be growing at 1/2" per month. Apparently different types of taste bud also regenerate at different rates because some days things taste better than others. I have read that it can take 3-6 months to get back to normal, or even a year. Probably depends on what sort of chemotherapy was used and how often and how long.
Re#304/305 The thing you are talking about is a kotatsu and these days is heated by an electric heater, not coals. I've seen nowhere outside of the innaka (countryside) and demonstration museum houses that use the coal kind. Too dangerous in the old days, even more so with the more cramped nature of current Japanese homes. Fusama with shoji (sliding doors covered with translucent paper) are still common in most houses and apartments these days. For better or worse, modern houses are still quite drafty...a boon in the summer, frustrating in winter.
Does the island Tokyo is on include some innaka?
Yes, quite a lot actually. About two thirds of the land here is mountainous. Most of Japan's population tends to cluster in urban areas sprawled across the other third, primarily the Kansai and Kanto plains on Honshu (the main island) and a few other places on the other islands. I believe ~ 60% of the Japanese live in the Tokyo-Osaka belt with (presumably) the remainder concentrated in areas like Kagoshima/Nagasaki, Hiroshima and Sapporo. As soon as you step anywhere outside of those areas, you are in the countryside though some places are clearly more "country" than others. My informal measure is to count the number of warabiki yane (traditional thatched roof houses) in an area...the more you find, the more isolated and from my perspective, interesting it tends to be. You have to look carefully at the house shape, however, when using this method as most thatched roof houses were long since hidden under metal roofs (typically right over whatever thatching was in place at the time of covering). Realistically speaking, there are two radically different (arguably three -- which I'll get to momentarily) Japan's to visit when you come here. There are the super futuristic, highly crowded, manga-esque urban areas best exemplified by Tokyo. Then there is the largely depopulated countryside, mainly in the mountains. Sadly, the latter category is getting quite hard to find in its most pure form due to a combination of nonsensical powerline routing, useless public-works construction projects strewn randomly across the innaka and an increasing proliferation of pensions, vacation homes, etc. The third category I mentioned above would include Okinawa Prefecture, formally the kingdom of the Ryuku Islands. Technically part of Japan, it historically was a distinct culture with it's own language (grammatically related to Japanese with much vocabulary contributed from China) until came under partial political control of Japan during the Tokugawa (Edo) era and under complete control after the Meiji restoration. In spite of the best efforts of the Japanese mainland government and the US military, Okinawa remains a fantastically beautiful place and well worth visiting. Another interesting place to see "country" are the Ogasawara islands directly south of the main part of Tokyo around the same lattitude of Okinawa. Legally part of municipal Tokyo but with 1000+ mile of separation and tropical climate, they have a rather different feel to them.
Cool. Thankyou for that, it's very interesting. Was hte culture in Okinawa you mention the Ainu people?
No. The Ainu were driven north to Hokkaido. The Ryukyuans are different.
Ah.
keesan may wish to check out page D1 of today's WSJ regarding cancer survivorship.
I don't have WSJ - is it online? Would you summarize please? I am pleased to report that I am no longer getting hot flashes every 45-50 minutes. It is 1.5 to 2.5 hours between them now. Maybe they will stop before the first heat wave. I can sleep longer without waking up roasting. My saliva seems somewhat less sticky now, but starches and fruits still don't taste good. They don't taste nearly as bad as they used to. I have to get back on a bike soon. I have a heel spur that is hurting again now that I am walking longer distances. I think it hurts less than it did to sit, but perhaps it is the change in chairs. We found a nice one being thrown out by a store, and put the one from Kiwanis at the curb (where it went away) because it was too wide to fit under the desk. My hands where I rest them to type (on a pad) are still sore. I am trying to rest on my forearms instead. It is now 2 months since my Jan 26 chemotherapy. I read that it takes 2-3 months or up to a year to recover from chemotherapy. As long as it continues to work, I don't mind the few residual side effects so much. Though it would be nice to get my voice back stronger, and the tingling/numbness in my fingertips is not really a problem but I wish it would eventually stop. The main remaining problems are due not to treatment but to aftereffects of losing so much weight from the disease itself - muscle and padding. Jim was reading in a library magazine that the single biggest problem for women with breast cancer is that their hair falls out during treatment. That one never bothered me, except for being a bit messy. He read something about applying electromagnetic fields to boost growth hormones in the follicles.
re: "#358 (keesan): (1) I don't have WSJ - is it online? Would you summarize please? (2) It is now 2 months since my Jan 26 chemotherapy. I read that it takes 2-3 months or up to a year to recover from chemotherapy. (3) Jim was reading in a library magazine that the single biggest problem for women with breast cancer is that their hair falls out during treatment." (1) If one has a subscription. You ought to read it yourself. The library certainly has it. (2) That would be a *minimum* estimate! (3) Depending on whether the treatment was surgical, chemical, or radiation.
How long did it take you to recover, and what symptoms disappeared first?
(1) If recovery is defined as 100% pre-cancer level, then it is still progressing. (2) Can't say what symptoms disappeared first because it was almost 2 years ago and am not into record-keeping in that regard.
Do you have any vague recollections of how things progressed? And what has not yet recovered? I still have rather weak muscles, do you? Ihave heard that the longer you go without a recurrence, the better your chances of no recurrence. I am glad to hear that it is 2 years. I talked to 2 people whose treatment worked only for 2 or 3 months The 3-month one had stronger treatment (involving transplanting his own bone marrow after using chemicals that destroy it) and has been fine now for 5 years. The other one was sitting there worrying and was glad to hear about the first one.
Actually, recollections are rather muddled. Muscles aren't week. Evening tiredness & weakened memory. Suggest you refer to WSJ article for where to get more info. Radiation treatments began 3.5 wks after chemo stopped and went for 4.5 wks. Then, 1 wk later, father in law died. Two mnths later, I was in a head-on crash & totalled a car. 1.5 mos. later, father entered hospice and died a mo after that. Had a lot of distractions, wouldn't you agree?
Wow, you really have had it rough, klg.
I just read a study of diffuse large cell lymphoma and they give various statistics. For high-grade DLCL 61% experience 'complete remission'. Of the high-risk category (which I think I was in) 44% have CR and 26% survive five years. Since I had CR (no nodes remain enlarged) my 5-year survival is greater, about 60% (divide 26 by .44). Risk factors include being over 65 and having an advanced stage of the disease (which I did by all measures). Of those who have CRs, in other studies, 20-50% will have relapses, which means I have at least a 50% chance of being permanently 'cured'. Of those with relapses, the same therapy will produce another remission in 20-35% but only for about a year or so. A stronger therapy involving removal of your own bone marrow stem cells, treatment with chemicals that destroy these cells, and transplanting of your own cells, gives 53% of the relapsed patients who were originally cured a 53% chance of surviving 5 more years. So I figure I have a 75% chance of being around for quite a while, or higher. The Rituxan treatment increases the odds somewhat. I will try not to think about this a lot, but my odds are pretty good compared to a lot of other people with other types of cancer. Lymphoma can be caused by various viral infections, including herpes. I have a cold sore once in a while. A book on oxygen says that half of people with cold sores (herpes simplex) are likely to develop the oxidized protein plaques which cause Alzheimber's disease in old age. I will be happy to achieve old age despite this risk. Back to my translation on oncogenes, which produce certain protein products that can be used in the diagnosis of different types of cancer and of the stage to which it has progressed.
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I don't understand your question. Viral infections can cause lymphoma. This might be because the body creates a lot of free radicals when fighting off the infection, and the free radicals can damage DNA. Maybe it is because lymph cells participate in fighting infections and multiply more during an infection so have more chances of mutating. Maybe some viruses actually get into the cell and insert copies of themselves into the DNA randomly thereby causing mutations. The website did not go into this. Sun has similar effect to infections, in producing free radicals, which is why overexposure to the sun makes you feel like you have the flu.
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I doubt that anyone knows. There are still a lot of mysteries, the human body being a major one. People are constantly developing cancer, except most of the time the body manages to kill the cancer cells. People with poor immune systems, such as people with HIV or those taking immunosuppressants after transplants, are much more likely to not keep the cancer from getting out of control. Sometimes if you have one infection, your body is busy fighting that and other infections, or cancers, can get out of control. Chemicals can also cause cancer, as can X-rays - anything that damages DNA.
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I just read that 1/3 of cancers worldwide are caused by infections. The immune system generates a lot of dangerous chemicals to fight off the invaders, which can also damage the body itself. Since the lymph cells are part of the immune system, they are exposed to these chemicals and can have their DNA damaged. The compounds in tobacco smoke also damage DNA to the point where smokers can have up to 50% more of these products of broken DNA in their urine. I wonder if smokers are more likely to get gout, since the uric acid that causes it is a breakdown product of DNA. People with gout are supposed to avoid foods with rapidly dividing cells such as asparagus and mushrooms, because they have more DNA in them (nucleic acids). Free radicals are also what causes aging. Ultraviolet light causes your skin to age faster and get wrinkled, as does smoking.
(Did the Chicago 7 know that?)
It is now a little over 2 months since my last chemotherapy (Jan 26) and the
side effects are mostly still with me - slight pain in the spleen area where
the tumor was, and in my hand where I had a lot of IVs. Bleeding during
defecation continues (probably due to my intestinal lining not being recovered
yet - and I still have a somewhat sore tongue and runny eyes and nose) but
the pain has mostly stopped as of a month ago. Hot flashes down to about once
every 2 hours instead of 45 minutes. I am sleeping better, on average.
It still hurts to sit, and where I rest my hands to type, but a couple of days
ago it started hurting less to sit, so yesterday we walked to my apartment.
Jim is fixing the washing machine there so that I can move back once it gets
a bit warmer. I cleaned up some (he rearranged things when friend stayed
there and I found my pots and pans on the basement floor) and recycled a lot
of papers that were relevant last time I lived there in July. And we put air
in my bike tires and I was going to walk it back, but I decided to try riding
and discovered my biking muscles are still in better shape than my walking
muscles, so I biked all the way back (which is mostly downhill). First time
since July I have been on a bike and now I am no longer limited to a 2 mile
radius. Hurray!
Food is tasting closer to normal but I am still not gaining any more
weight - 114 after supper with clothing on. My saliva is not as sticky as
a couple of weeks ago. Things are gradually returning to a balance.
My yard could use weeding, but it may not happen for a while. I still
have trouble getting up after I get down. There will probably be no garden
this year, and I don't expect to be strong enough to go on vacation or even
swimming (2 hours by bike) but it will be really nice to be able to get to
the river and local parks again.
Next checkup (CAT scan) May 18.
This past weekend I was able to walk to both Scott's grex potluck and Aruba's grex staff meeting (which prompted offers to drive me home and attempts to feed me). My legs are still weak and I am trying to do a few deep knee bends once in a while, holding onto something. Last time I did 3 and I will try for 4. Biking is easier. Fingertips still a bit numb, no noticeable change, no problem. My voice was worse for a week which I think is due to a cold but today it is getting better despite the sneezes. I just listened to my own voice on a cassette tape and it sounds high pitched and weak compared to now. I did some more reading on hot flashes at several sites. They start in the neck and face and progress to the chest and waist. They start in the waist and chest and progress to the neck and face. You should wear cotton and not wear turtlenecks. (I am wearing several layers of wool over a turtleneck). You should take off layers to cool off, or stick your hands in ice water. I just take off one or two wool hats and unzip my wool vest. The hot flashes can be several times a day early morning and late evening. Or as often as every 90 minutes. I was getting them every 45 but at last timing it was just over 2 hours. They are brought on by a long list of things like alchol, spicy food, stress, and overheating. I don't do any of that. They occur at irregular intervals. I could almost set a clock by mine. They last 2 months to 2 years. 2-3 years but up to 6 years. A few months to as long as 15-20 years. They are triggered by exercise. They are reduced in intensity by exercise. It helps to have more fat cells which make estrogen-like hormone out of something else. Muscle cells make estrogen-like hormone. You should stay in a cool 68 degree room. We don't have any rooms that cool, ours are 50-55 degrees. It is worse in summer. I have only been through a winter and hope it does not get worse in summer. I get the impression that people have highly variable reactions to 'the change'. Sudden menopause due to radiation, surgery, or chemotherapy, including prostate surgery and chemotherapy, leads to more severe hot flashes. It still hurts to sit but I don't know a good way to translate standing up, and besides that makes my feet hurt. Tomato sauce still tastes quite sour. I am up to 117 pounds with lots of wool and cotton clothing, after three days of feasting, which I think translates to about 115 without clothing or maybe a bit less and is more than I have weighed until now in 4 years. Tamoxifen can cause hot flashes. You can get hot flashes when you stop taking tamoxifen. Luckily I don't have to take any drugs any more. Hot flashes might be useful in air conditioned buildings, I suppose.
Two months since the PET scan, almost 3 months since the last chemotherapy.
Supposedly it takes at least 2-3 months to feel normal. This week has been
somewhat of a watershed. I can bike again (or I could until Jim started to
move all the parts from my frame to one that is less worn out). So I am back
to walking, and today we went through Eberwhite Woods, which is full of
patches of yellow trout lily and some small white flowers which I think are
Spring Beauty (claytonia) or anemonella. Two days ago we biked to Dolph Woods
and saw bloodroot (large white flowers) and just-emerging mayapple leaves,
like folded umbrellas.
Today's trip was to bring a carton full of Chinese restaurant take-out
boxes to the local Chinese restaurant to trade for two spring rolls. They
decided to give us two free soups in addition. We walked back via another
woods near I-94, where there is a pond full of calling frogs (difficult to
hear over the highway racket) that might be chorus frogs. We startled a
garter snake. The easements next to Maple Road are carpeted with purple
violets that you can sometimes smell over the highway fumes, and a few white
ones. We stopped at the Chinese food store for vegetables. The guy at the
register knew the numbers in English (4, 3) so I showed off my numbers in
Chinese and he gave us some Chinese peanuts and I said 'thanks' and 'goodbye'
which he repeated properly.
I trudged back. One mile still wears me out, but my muscles look they
are back. I am up to 115 pounds after supper, which is probably about what
I was before I got sick last year January (112 before breakfast then). I
wonder where it has gone as I can't see any body fat and I am still short on
muscle.
This week's big progress is that my voice seems to be back. It was
not quite back on Sunday and I was starting to think it might stay weak.
I am still hoping it won't always hurt to sit and that my digestion
will eventually recover and my fingertips stop feeling numb, but these are
not serious problems. Still sore in the area over where my spleen probably
got enlarged to, nobody knows why. Scar tissue? I am going to try to do the
Huron River canoe cleanup tomorrow. We might skip the mattresses this year.
And I might just snag things with a pole instead of climbing onto the bow and
leaning over. With luck there will be turtles. Today we saw orange and black
butterflies (monarchs migrating?) and what looked like but is too early for
a swarm of fireflies (no light).
Were the Chinese take-out boxes used? Will the restaurant reuse them? I'm glad you are feeling so much better. It's a long recovery.
New boxes. They were in stacks with brown paper wrapping. The neighbors who were moving had bought a bunch to use somehow at their wedding. Today I plan to bike an old 3-speed into Kiwanis, and then walk to the river if it is not raining. We will bring in the Japanese wordprocessor too.
We biked to Argo Park where we got our canoes last year, by rather a long
roundabout route, southeast to Broadway Bridge because Jim did not want to
lift our bikes over the railing so we could cross at Barton Dam. Turns out
there is no longer a building to rent canoes from at Argo, so we had to bike
back to Broadway Bridge (past Barton Dam, which was at some point converted
to a walk/bike bridge with shallow ramps instead of just stairs/railing).
About an hour later we arrived at Gallup Park where they let us take canoes
out for two hours after the cleanup ended. Jim's first beercan had something
wriggling in it which turned out to be a crayfish. We headed towards Ypsi
because nobody else had done that stretch, but it was pretty clean already
and we only found a bunch of cans, plastic and glass bottles, assorted
plastic, and part of a kite and some candy wrappers, in two hours. We passed
up two large dead fishes and a very heavy looking rolled up wire fence that
looked more than the 650 pound limit for our canoe.
Our only interesting haul this trip was a very rusty flattened trash
can in the water, covered with mussels, which Jim got onto the canoe and then
out of the canoe at the other end. When I asked what to do with our trash
the guy said to bring it to the trash can. I said it would take two people
to bring our trash can there.
We then biked most of the way back and up a hill to the music school
for an early music concert. Jim finished off the decorative collard greens
with hummus at the reception. Great concert. I somehow made it all the way
back. Not bad for my second bike trip of the year (not counting the one to
my apartment). Jim picked up a few interesting finds on the way back (a large
yellow flashing light etc.) and then someone steered us to an after-yardsale
giveway. We passed on both microwave ovens but got three phones, a scale,
a nice warm hat and gloves and boots..... This reminds me of our last bike
camping trip when we stopped at yard sales to get dry and came back with 135
pounds on our bikes (not counting ourselves).
I can't imagine biking only for exercise, not to get somewhere.
Food still tastes odd, or maybe it is just that tortillas don't go with
Chinese broccoli and orange juice.
I believe you are talking about Argo Dam, not Barton Dam.
I believe you are right. Barton Dam is farther northwest from Argo Dam, and has a large power plant building with waterfall and is walkable to Bandemere Park and Bird Hills Park. I would love to go there soon. What is the name of the third dam, where you have to cross a really bad road to continue towards Parker Mill when biking southeast? I hear pink is the 'in' color this year. We are both pink. Jim wore his bike helmet with visor in the canoe. I wore my new hairdo - second time out this year without a hat.
That sounds like Geddes Dam, Sindi.
Sindi, I am really glad that you were feeling well enough to go on your
annual canoe trip. You know I couldnt resist an entry into Mnet's agora
conference. It isnt as good as some of the previous ones but I still
think you might enjoy it so here it is...
My parody of resp:378...
It is once again time for our annual spring expedition into the wild
lands. As usual, we have chosen to travel on the river in canoes. We
biked to Argo where we got our canoes last year, by a rather long
roundabout route due to obstacles the natives have put up in the past
year. When we arrived at Argo, we discovered that there is no longer a
hut to rent canoes there. What happened to it? Did a rival tribe
destroy it? We had to bike to the next point of civilization on the
river, a place called Gallup Park. Luckily, they were able to provide
us with canoes even though our arrival was late. Once in the canoe, we
could continue our annual journey to see what offerings the natives
have left on the banks of the great Huron River. Jim s first beercan
had something wriggling in it which turned out to be a crayfish and not
the traditional fratboy which one usually finds attached to beercans in
this land. We headed towards Ypsi because that is a nearly undiscovered
part of the river. However, the natives down that way are not very
original in the gifts they leave on the side of the river. We only
found a bunch of cans, plastic and glass bottles, assorted plastic, and
part of a kite and some candy wrappers. We passed up two large dead
fishes and a very heavy looking rolled up wire fence that looked more
than the 650 pound limit for our canoe.
Our only interesting haul this trip was a very rusty flattened
trash can in the water, covered with mussels, which Jim got onto the
canoe and then out of the canoe at the other end. When I asked what to
do with our trash the guy said to bring it to the trash can. I said it
would take two people to bring our trash can there. The natives are so
naive and so innocent!
We then biked most of the way back and up a hill to the
native s music school for an early music ceremony. Jim finished off
the decorative collard greens with hummus at the reception. I am sure
the natives appreciated the way Jim shows them respect by eating their
traditional food. Great concert. I somehow made it all the way back.
It was a great journey. Jim picked up a few interesting finds on the
way back (a large yellow flashing light etc.) and then someone steered
us to an after-yard sale giveway which is apparently another native
custom we haven t experienced before. We passed on both microwave
ovens but got three phones, a scale, a nice warm hat and gloves and
boots..... This reminds me of our last bike adventure in a foreign
land when we stopped at yard sales to get dry and came back with 135
pounds on our bikes (not counting ourselves).
I can't imagine biking only for exercise, not to get somewhere.
Jim said not a trash can, a 50 gal oil barrel, covered with things that were
squirting at him all the way back. All these little worms were on there
slithering around. It was really interesting. They look something like
crickets without tails. Actually more like silverfish.
Someone else this year got the couch cushions, and we passed one cleaning lady
who found an unopened beer can.
Wow, we have been republished within 24 hours by the great Mnet press!
Today the curb gods put out a real antique laundry wringer that would have
fit on my concrete laundry tub, but by the time I got back from singing it
had metamorophosed into a cheap kenwood receiver. We are off to see if the
bike with mangled front wheel is still out for trash pickup.
At Shape Note Singing today I talked to someone who had intentionally lost
30 pounds and was trying for 20 more (size 2). She no longer has high
cholesterol or any need for diabetes medications. She said her mother has
very slow lymphoma and has been treated 12 times already, once for 8 months.
Her brother-in-law has gone back to school to get a nursing degree, after doing
most of the care.
Mine was a very fast sort ('rapidly fatal without treatment') but I think it
was relatively dormant since 1995, when I started having symptoms which I no
longer have. Maybe 'diffuse' means it has escaped from control by the immune
system.
Sorry we could not have had a bigger adventure more suitable for parody. It
is flattering to know what I write is appreciated that way.
Oh well, you will probably be more healthy next year and you can go on a bigger adventure then. It is just nice that you were feeling well enough to go out at all this year. :)
Yes it was nice I could bike and canoe. A real milestone. We had another adventure on the way back from picking up the bike with the twisted front wheel (which Jim put his head through the frame of to carry - he is happy that it has a pair of battery-operated LEDs like what we paid a lot of money for about 10-15 years ago). Near where the wringer used to be was a trash can with some 2x6s, and next to that another trash can (not oil barrel) full of interesting things like a lot of video tapes (to give to te library sale), two half-tubes of caulk, some antibiotic cream, sunscreen, shoes (too small for me), and half a bag of Doritos. We moved some large metal items from the trash to the recycling bins (which were mostly full of returnable cans and bottles). For some reason people don't think to recycle shoe racks, aluminum pots, or curtain rods, though they weigh more than all the cans. We are the curb gods! I even got two new sponges and a dustpan. We left the swiveling office chair (too big for me) and a large red object that might be a rototiller.
I was amused, last Sunday, to find the parking lot at Gallup Park completely full, with people parking in NO PARKING zones and backing up traffic, when less than a mile away at Furstenburg Nature Area the lot was almost empty. It's doubly amusing since the two are connected by a bicycle path.
Are bikes allowed on that boardwalk?
Not on the boardwalk, but on the path alongside Fuller Road.
Yesterday someone commented that she liked my new haircut. I reminded her that it was not a haircut. I have not had my hair cut since September. It has grown back about 1.5" in the past 3 months and looks intentional now. Still no eyelashes. Body hair is returning as well. My voice is quite normal now, for the past two weeks. My sense of taste is pretty normal but fresh oranges are still quite sour. I am drinking orange juice. I am now able to swallow iron capsules, now that my voice is back and presumably the pharyngitis that caused it is gone. I have been taking iron pills due to rectal bleeding which also seems to have stopped as my internal membranes heal. My nose is still a bit runny, as are my eyes, but my saliva does not seem sticky any more. The main residual problem is it still hurts to sit. I think I must have inflammation around the sit bones due to sitting so long without any padding. I can bike, which hurts no more than sitting on a padded chair. My muscles are not back to normal. I can't walk fast, or run, and I hold on to the railing to climb stairs and pull myself up. I need to use my arms to get down and up off the floor. My hands are stronger and I can cut my nails easily now and put the toilet paper roller back without help. My digestion is still not recovered, which interferes with sleep, as do the continuing hot flashes every 1.5 hours or so, which is an improvement over every 45 minutes but getting to be more of a nuisance in warmer weather. Luckily the fad is for bare middles, which is where I seem to be warmest. I may be the only 53 year old with my midriff bare this summer. The sore bones also keep me from sleeping in any position but my right side. Insomnia is also a symptom of menopause, which is one reason why I tend to post in the middle of the night like right now. I did some reading on chemotherapy induced menopause and as usual there are conflicting facts. Menopause is defined as 6 months, or as 12 months, with no periods. Mine stopped suddenly last June when I was down to 103 with clothes on. I am now up to 113 after breakfast, which is more than I weighed for 3 years before I got sick. Weight loss can cause loss of periods (amenorrhea) which is temporary. Chemotherapy is more likely to cause permanent menopause if: 1. You were close to menopause already. I don't know if I was. You are supposed to get irregular periods for a few years first. I did not, it just stopped due to weight loss. My mother kept a diary and her periods got irregular for a few years from about age 54-57 and then she had radiation so they stopped. 2. A larger total dose of cytoxan (which I had), or 6 months rather than just 3 months of drugs. 3. A combination of drugs (I had a lot of drugs, three of them generally toxic to growing cells). But it is unpredictable for individual cases. One site said my periods could come back 4-5 months after ending treatment, and 6 months of no periods was menopause. Presumably the 6 months of treatment does not count as menopause, or as part of the total 6 months. Another site said 12 months of no periods is menopause, and it could take 6-12 months after treatment ends for periods to come back. Again, if you include the 6 months of therapy, this comes to more than 12 months, in fact it comes to 18 months of temporary menopause followed by resumption of periods. One other site said drug-induced menopause can last months or years. If nothing changes by 12 months from the end of January this is menopause by anyone's definition. The sit bones are more of a nuisance than the hot flashes and I would much rather have my voice than my periods back. I am going on increasingly longer bike rides which is supposed to be good to prevent bone loss. Supposedly I should worry about weight gain. I am still trying to gain weight. I don't think weight gain runs in my family, just cancer. Only other remaining symptoms are that my fingertips and the soles of my feet are still a bit numb, as is the area where I had the spleen biopsy (which got infected), which is also a bit painful at times, usually just when I poke it. The doctor thought this might be scar tissue and not to worry. Someone else said it took 6 months for the nerves to recover so the numbness would stop, and sometimes it still comes back. Nerves don't reproduce, but they do grow new shoots. I wonder if some of my nerves died and the others are taking over. Maybe the doctor knows this. Excuse any middle of the night typos please.
Glad you're still with us, though.
Indeed.
Today I had my first of many CT scans to make sure that the lymphoma has not returned. They remembered I did not want my barium sulfate smoothie refrigerated and I was allowed to use my own cup (but the bottle has a large mouth so you can drink directly from it too). I thought I was not supposed to have any more IVs but they had me sceduled for one. I was told long sleeves were no longer allowed, they were somehow causing problems with the machines when people moved threw them (getting caught?). Jim let me wrap up in his heavy flannel shirt while waiting, after the IV. I got a team of two doing the IV and they also did my blood draw to save me a second jab and an hour of waiting around, and took the samples where they would be analyzed, and were all very cheery and considerate and said hardly anyone else ever thanked them for doing such a good job. The IV hurt no more than the average blood draw, they put it just where I asked (after phoning the technician to make sure the left arm was okay), and hardly any blood got out that was not supposed to. I got the new machine that takes half as long, and did not feel like I was going to go blue in the face holding my breath. Someone is doing a study of former and present smokers there by offering them free X-ray and CT scan checkups, to see which works best. They have detected a few early cancers that way but no conclusions yet. I got in and out on time and we took our Zingerman's bread to the hospital cafeteria and had a picnic of bread and water. At 3:30 there was no food there to buy except hamburgers and pizza type stuff. At others times you can buy 'three sides' of vegetables as a cheap meal. We tried to identify the various flags hanging from the ceiling. I biked there and back, first time I did not need to be transported. I waited 2 hours on a stretcher for my first CT scan. This time I sat and talked with other people about their problems. I have graduated to a small pillow which friend made for me to sit on, and Tim gave me a larger foam one today that is higher at both sides (lower in the middle). We had a nice scrabble game with him (Jim won, with a little help) as I was too worn out from the usual worrying to go back to work tonight. (I don't get much sleep before hospital visits.) Results within 3 days. I am supposed to drink a lot to get the dye out of me. We got juice. I have a big translation probably related to a drug company which will (if I finish this batch and accept two more batches) pay for my medical deductible this year. Nice to get back some money from a drug company. My 8 chemotherapies were $5000-6000 each for just one new drug.
A doctor friend sent me the results and I am not sure what to make of them. I was hoping for something better than this and will know more Monday. No enlarged lymph nodes is nice, enlarged thymus is a puzzle, and 'splenic masses which .... probably represent splenic lymphoma' does not sound good, but last time they showed up (which I don't think was in the PET scan) the doctor said they might be scar tissue if they were not changing in size, in places that used to have lymphoma. I do NOT want to be doing more biopsies now. 15590798 Name: KEESAN, CYNTHIA C DOB: 06/04/1950 Sex: F Age: 53 Years User Id: 0878 Radiology and Nuclear Medicine Results Text Status Req. Nbr. Date Source System FINAL 3680269 05/18/2004 RIS CT chest, abdomen and pelvis with IV contrast. History: Lymphoma. Procedure: Helical CT from the lung apices to the pubic symphysis following the uneventful administration of oral and nonionic IV contrast. Via fovea 30 cm Impression: Comparison with prior CT dated 12/24/03. Chest: No enlarged lymph nodes. Interval increase in size and volume of the thymus, without discrete rounded masses. The thymus is now much larger than normal for the patient's age. This may represent rebound thymic hyperplasia. Thymic lymphoma is thought less likely. Unchanged 5 mm nodule in the lower left lung laterally on image 47. Abdomen: Unchanged multiple hepatic cavernous hemangiomas. Unchanged small splenic masses which are indeterminate in CT characteristics but probably represent splenic lymphoma. Pancreas, adrenal glands and kidneys are normal. No enlarged lymph nodes except a 1 cm unchanged gastrohepatic ligament node. Pelvis: No enlarged lymph nodes or other significant abnormality.
I just did some reading on how the thymus gland is atrophied (gets smaller) due to chemotherapy and then often grows too big afterwards. It did not say how long things took to get back to normal size. Then I read about NonHodgkinss Lymphoma and PET scans. 56 out of 67 patients with CR (complete remission) according to the PET scan were still in remission 653 days afterwards, and 11 had recurrences an average of 404 days later. Of those whose PET scans showed FDG (radioactively labelled glucose) uptake all 26 had relapses, on the average in 73 days. So I am in the group where about 83% were okay for close to 2 years afterwards. (It did not say what happened after that). Then I read that 30-60% of NHL patients especially with large masses have residual masses that are fibrosis, not tumor, and only 18% of that group relapses (I did not see a time scale on this). So I have a 5/6 chance of being okay for the two years, and an even higher chance of being okay for the next year. I read earlier that my chances of 5-year survival without symptoms are about 65%, and there is a second-line chemotherapy with 50% odds after that. I will try to stop worrying between now and Monday so I can get enough sleep to do a big translation for a drug company that might pay for half my insurance deductible if I work fast until June 1. Or 30% anyway.
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How did you know my birthday is coming up? Happy birthday to you too, Tod. I am still waiting for the bill for Jim's insurance so I can pay both of ours at once. I just noticed that one reason they give for the annual 15% increase is the increasing cost of drugs. One of these costs appears to be very high lawyer bills for arguing about who has the right to make what. Eight translators have been working on this job I am doing since maybe January, full time. 99% of what we are translating is probably irrelevant but lawyers have no interest in minimizing costs and time of other people as they get a commission on it. All the jobs for lawyers are to translate 'everything'. One job for a lawyer insisted on translating the Polish translation of an English original authorizing a school to send transcripts, also the instructions about how to fill out the application form for admission (they sent ALL the school documents). Another one sent me menus and candy wrappers - they must have cleaned out someone's desk. It was not enough to tell them 'this is a candy wrapper', they wanted every word. I don't like lawyer work. Got to get back to cranking out 3000 words a day now about nutrient broths and mineral salts, a welcome change from profit analyses.
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Drugs manufactured in Canada?
Mostly, drugs made in the U.S., sold in Canada, and then re-imported. The drug companies have, in the past, tried to quash this by refusing to supply pharmacies that engage in the practice. The question is, is CVS big enough that they can't afford to strong-arm them?
Today I saw the doctor. A nursing student did the weighing. My pulse is 77 (normal being 70-100 or so; Jim thinks he is 60) and blood pressure the usual 105/60 but I think she pumped it up to 160 to start anyway. This time they did not measure blood oxygen. A medical fellow did my exam and answered some questions. The loss of taste is also related to nerves and they can take 6 months or longer to grow back. Chemical menopause has a 50% chance of being permanent at my age. I won't notice any symptoms if I get a relapse, before the CT scan catches it. I don't need 10 years of scans, just 5. After 5 years the chance of a relapse is very low. After 2 years I have an 80% chance of being cured (no relapse). After one good PET scan considering other factors (I was in a really advanced stage) my chances are 60%. The doctor did not want to tell me this and immediately pointed out that this is better than half. I told him I already read these odds and knew there was a backup treatment that was not so much fun. He told me he could usually tell from a gut feeling whether someone was going to do okay and I was going to do okay. I thanked him for being so optimistic all along and not letting me know what bad shape I was in to start with. We ran into the mother of the boy who was in there frequently my first few times and he has also gained back 20 pounds, but still has to come every week for blood work. He also has hair now. My next appointments are mid-late August. While waiting for them we recognized a woman we had talked to last time. We will see her again in November as they are now coming only every 6 months. We said hello to the cancer center nurse and her mother is getting a new treatment and was able to go home. I told the pharmacist that my voice is back. He was the one who discovered it was probably a drug reaction. We ate our picnic of rye crackers and ajvar at the cafeteria, with some cans of juice Jim took from the cancer center and a plate of brown noodles with vegetables and white sauce. He said the red sauce did not taste like anything and at least you don't expect white sauce to taste. I have to get an IV again next time(s) because of the persistent small masses in the spleen but I have a slip to get the blood draw at the same time again. If all goes well I would like to go on vacation for a couple of weeks after the next followup exam (late August to early September) if I am strong enough in the legs by then. (And able to sleep on a harder surface).
ajvar? "adgevar"? "eye-var"?
eye-var. j pronounced like English y. Turkish word also used in in former Yugoslavia. This jar had red peppers and eggplant, some have no eggplant. Usually also garlic and lots of olive oil. Most versions are with hot peppers but we found two without at Aladdin's Market on Packard. Also good added to beans and rice. Today I tried to find out by a few phone calls if a mammogram is needed when one is getting frequent CT scans. Someone said that if a CT scan finds something suspicious they also order a mammogram. I should ask my doctor. I found another online report of 24 people with my type of lymphoma who had good PET scans (and 11 who did not, 10 of whom had relapse). Of these, 3 had relapses at 8-11 months and one at 20 months, the rest were okay. 5/6 again. I will try to not worry until the third CT scan at 9 months. PET scans cannot catch really small tumors, and it probably takes 8 months for them to grow large enough to be noticeable by CT scan. A third study reported 85% of people with good PET scans were okay for 2 years. After 2 years a relapse is quite unlikely and after 5 years extremely unlikely. 20/35 is about 60% of the total group who were okay for 2 years. Of the group with good PET scans it is again about 85%. In any event, over 50%. Maybe I will celebrate after the fourth scan, next May (or for my 55th birthday, which makes me eligible for chair exercises and a senior discount card at Old Country Buffet or whatever they call it now).
Re: eye-var. Ah, thanks.
For the high risk group (probably me as I had an advanced stage) 2 year progression free survival was 60%, for the low-risk group over 90%, but the 60% was only for those who had a good PET scan half-way through treatment. I did not have a PET scan until the end but I had a good CT scan after 6 cycles at least - all the masses noted then are the same size now and were not abnormal on the PET scan. The reason for the radioactive antibody in tough cases is that when tumors are large the antibody only kills off the outer layer, but if the antibody is radioactive and binds to the outer layer, it also kills off nearby cells. Unfortunately these are not just tumor and not even just lymphocyte cells so they don't like to use that method if anything else can work. Do you have ajvar/aivar in England?
Not that I know of. America is much more a country of immigrants than England. I'll see if I can find any mention of it in England, though. There were a lot of people who came from the former Yugoslavia during the wars there; perhaps they have brought it with them.
Try also Turkish and Greek and Hungarian stores in addition to Macedonian, Bosnian, Serbian and Bulgarian. We made our own from red peppers, baked, skins peeled, ground up, add fried garlic and olive oil and if you like also roasted peeled mashed eggplant. The commercial ones also add salt to ajvar. The peppers smell wonderful when baking. In the fall in Macedonia people would roast them on large flat metal pans over fires. We used the oven and a cookie sheet. You can also put them on the European style electric burners directly. The peeled peppers are a favorite late summer salad, with raw garlic and olive oil. Early spring salad is garlic shoots. Anything green was welcome after a few months of no fresh vegetables except potatoes. In the fall everyone pickled peppers, cabbages, and beets, and canned tomatoes. This explains the popularity of stuffed pepper and stuffed cabbage, which can be made from the pickled vegetables. Pickled cucumbers were less common there.
I don't think there are any such stores. I have seen Chinese foodstores. As I've testified in the IAHB item in aggro, even finding anything other than an Orthodox or Reform synagogue presents a problem.
We buy our red peppers and ajvar in Middle Eastern stores run by people from Jerusalem, Lebanon, or Iraq, who import things from Greece and Turkey. The olive oil from Lebanon is excellent. Where do you live in England?
Up in the North, a small town called Ashington near Newcastle.
That's "Ashington, which is near Newcastle", not *"Ashington-near-Newcastle"
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Heh. I just read "Romulan".
I did some more reading on thymus rebound and it is apparently usually just found in people under age 25. As the doctor said, my case is an unusual one. Nobody else had sore sit bones or a mysterious pain where the spleen got biopsied, or apparently a sore hand (which I think is from one of the drugs having leaked out a bit). The thymus can rebound after anything that caused it to shrink - chemotherapy or prednisone. It will probably go back to normal within another 3 months. The prednisone could also have caused my muscles to be weak (on top of the weight loss). For some reason arm muscles recover sooner than leg muscles. I am doing shallow knee bends. I can't do the deep ones without using my arms to get back up. This makes it sort of tricky to week the garden but I will try anyway, some time soon. I still keep getting weight-loss spam, which I need just as much as the V<ED>agra variety or the Windows XP.
Any current evidence of chemobrain?
No, have you had any chemobrain? The primary effect on my brain was just sleep deprivation from the hospital and the prednisone.
This month I have lots of doctor's appoints. I had a mammogram (very quick and only hurt for a few seconds) and a general exam with pap smear to check for cervical cancer because chemotherapy knocks out the immune system and there is a virus which causes cervical cancer and might have gotten loose. I was told to also get checked for B12 just in case the cracks at the corners of my mouth during chemotherapy and decreasingly after that were due not to therapy (most likely) but to B12 deficiency, and a routine cholesterol test, and a tetanus shot. I checked at hospital and physician billing today and I am way over the $400 for which the insurance will pay 80% so I did not want the cholesterol test. They did the three standard blood draws for cancer checkup from the IV but would not do 2 of the 3 others (TSH too) without an official crossout of the cholesterol test so I had to go get a nurse to sign that and then get a second blood draw. Ouch. I wish it were possible to find out what things cost before they ran up to $795, and how much the PPOM discount is. They told me 45% but Jim's was nowhere near that (it just came today). I could easily have postponed the tetanus shot and mammogram until next year. There was a $165 charge for use of the facilities in addition to the general exam (about $200), a $70 charge to read the mammogram in addition to the mammogram (about $200). Tetanus vaccine $30 injection $25 (it took less time than the $3 blood draw). Dept. of public health might have been cheaper ($15 for flu shot) but it is a 3 hour round trip to Ypsi. Next Monday I see the doctor. A friend will email me my CT scan results this week. While waiting around the CT scan area (in the hall to avoid the TV) I talked to someone in an electric scooter (and helped him by opening the bathroom door so he could get in and out because the clearance is not enough), the sister of someone getting checked to see how far her brain cancer has spread so they will know if it is operable, and someone getting CT scans monthly to make sure his second course of chemo is not damaging his lungs and that it is working. He had a relapse so they are doing something stronger. At one point all his skin peeled off. If this works he will do it the rest of his life. I forget his schedule, I think it is the first 4 days of each 4 weeks and they give him good antinausea drugs but his blood cell counts stay low and he bleeds easily. He is very happy medicine has improved enough to keep him alive. We ended up getting IVs at the same time. Mine bled all over the floor (well, all over a bit of the floor) but did not need redoing. Again, I feel luckier than most of the other people there. We are goofing off the rest of the day. I learned to cut and paste with a mouse in Opera for linux and was teaching Jim how to use his WCC webmail and Opera mail when the WCC smtp server apparently died. Taubmann Medical Center has floors numbered (from the bottom): B2 B1.5 B1 B.5 1 2 3. We saw most of them going back and forth between billing offices, internal medicine (3 times) and CT scan (twice). They hide all the construction on the half floors. Or maybe it was B2 B1 .5 1 1.5 2 3? Jim was leading. Better than just sitting around worrying. My symptoms of chemotherapy are nearly all gone. Still have hot flashes and it still hurts to sit but things taste normal, my hair will need cutting soon for the first time in a year, and people have been telling me how good I look (nobody told me earlier how bad I looked) as well as admiring my glasses (designed to fit under a gas mask - I lost the others somewhere). You can mail order new lenses (prescription) for $36 plus $5 shipping, much cheaper than a tetanus shot. Exams run $48 (Ypsi) to $80 (Main St. Ann Arbor). We had a small picnic in the 'garden' (sign labelled it that way) next to the hospital and Jim picked french fries and ate them. I had to fast 6 hours for the CT scan. For B12 the online site said to fast 12 hours, the doctor said 6, and the library book said it is usually tested together with folic acid (for pernicious anemia) and you fast for folic acid, not for B12. For cholesterol the book said fast 12 hours, the online site ditto, the doctor 6, and a friend's doctor said the fasting is only for triglycerides not total cholesterol. I skipped the test. The insurance will pay 80% next year.
CT scan same as before (thymus still enlarged, probably harmless), blood counts similar to before (elevated neutrophils, slightly low lymphocytes, somewhat high AST), no results back on B12 and I am catching up on sleep again. Doctors make me nervous. If I get through the next two exams okay my chances of cure are pretty good. From what I read most relapses are 8-11 months after end of therapy and successful PET scan. Jim's bill came and we pay 55% of doctor's bills and an average of 78% of lab tests. Don't know about tetanus shots. I could have got one cheaper ($15 instead of 55?) at the county health dept but it is in Ypsi. 3 hour round trip but I can get cheap glasses at the same time. My leg muscles are still not recovered. Jim is making a $20 hand truck and some $2 used wheelchair wheels into a bike trailer (unless someone wants to give us a used baby jogger) so he can carry the tent next time we go camping. I think I would still have trouble keeping up.
Big surprise, the mammogram was paid 100% by insurance (no deductible) but I still don't know what happens when the preventive part adds up over $400. I guess the deductible on preventive is only if you have not yet gone over your deductible. Yesterday we reached my fitness goal for the summer. Biked to Independence Lake (the closest swimming beach, about 15 miles over dirt roads and some hills), swam 3 laps (about 500 feet each?), walked all the trails there (saw lots of frogs and rabbits), left at 7:10, switched to paved roads at N. Maple because it was dusk and gravel roads with ruts are no fun in the dark, and got back at 8:40, beating our normal 1 hr 45 min timing. Took laundry off the line. Around 8:50 it started to pour. My arms are still pretty weak. I wish there were a beach closer to town. Someone gave us a used baby jogger but it is double wide. Jim tried a different hand truck and says the trick is to keep the center of gravity below the wheel axles by using larger wheels. I may try doing pushups against the wall, and shallow knee bends.
Update between the Aug16 and Nov16 CT scans. I wangled an orthopedics exam a couple of weeks ago. The X-ray showed no signs of bone necrosis, which sometimes occurs with high doses of prednisone. The doctor has no idea why it still hurts to sit. My theory is inflammation due to to much pressure for the time I weighed 93 pounds a year ago and somewhat more since (until last spring). I asked how they would treat this symptom if the MRI he has ordered showed nothing. He does not know. Maybe exercise. So I am doing more exercises to gain padding. I should probably just not sit or lie down for a few weeks to remove the further irritation. I mentioned that my heel has been hurting since last winter when I tried to stay on my feet a lot to relieve pressure on the sitbones. He said I have plantar fasciitis (inflamed plantar fascia, which is some sort of tendon-like thing connecting front of foot to heel that gets torn or bruised). I read up on this - bruising can be caused if the heel pad loses its fat. I think the fat is back. He gave me some stretching exercises for calf and Achilles tendon and I read some more about this on the web. I am supposed to pick up a towel or marbles barefoot. The floor is rather cold for this now. Or stand on the bottom step and let my heels droop down. This would require climbing DOWN the flight of stairs to my basement and is also cold. I can try standing on the edge of a book instead. I could also try arch supports. Best thing is probably to stay off my feet but I am not good at walking on my hands. In the meantime I have been doing other exercises - highly modified pushups first against the wall, then at an angle to the floor against the bed, and I am up to about 15 baby pushups horizontally on my knees, and the same number of situps with feet hooked under something. I was unable to do one deep kneebend without using arms in August. Now I can do 5 or 10 but I managed to pull something in my knee trying too hard. I wonder if I could work kneeling without injuring something else. I am also supposed to soak my foot in hot water 30 min twice a day. THe websites did not mention this one. It is a nice way to warm up my feet before bedtime but the floor tends to get wet . I should do the stretching exercises when I get up or after sitting for a while. I sit for a long time to earn money to pay for medical expenses etc. The MRI is being paid for by insurance because I have gone over $15,000 this year. I would have waited until trying a few other things but next year I hope not to go over $14,000 so they would not pay all of it. Our health care system is wasteful. UNtil a couple of weeks ago I could feel some sort of pressure in my chest above the heart which I think was enlarged thymus. The doctor said I could not possibly feel it. It is now gone. Last time I could tell that the fluid around my lungs was gone before the CT scan showed it. It will be interesting to see what happens Nov 16 at the next CT scan. They said next time I cannot get my blood draw at the same time as the CT scan because it concentrates my blood too much to fast before the scan. (I had to fast 6 hours but I was not in the mood to eat much at 5 am for breakfast). Two jabs instead of one. The MRI is on a Sunday one day before another appointment. Four more doctor's appointments and/or scans this year and then I get some time off unless the orthopedist has some novel ideas about what to do next this calendar year. I will report on the MRI. Apparently you don't need an IV for this (hooray!) and you can talk during it and Jim can sit there with me (no radiation) and I can bring a tape or CD because it can take 50 min without moving (which was the case for the PET scan and I also could not talk). I presume I can move my head since it is my bottom they are scanning. They offered a sedative in case I am claustrophobic. Has anyone reading this had an MRI? Unlike the plantar fasciitis, which supposedly hurts more in the morning after waking (due to shortening of the tendon through not being used at night) the sitbones hurt less in the morning.
CT scan this morning. The usual blood all over the place when the IV was put in but it worked on the first try. I have been told I have good back pressure. While there, we talked to someone who is getting a CT scan of his knee so they can make a mold to put his knee in when he gets it irradiated for sarcoma that the surgery missed, for 7.5 weeks five days a week. Why skip weekends? He is going to drive 45 miles each way every day, and the radiation lasts 30 sec to 1 minute. He hopes eventually to use the knee again to play golf, and was showing us pictures in a magazine of how to adjust the screws in a golf club to compensate for individual types of swing. We had a picnic lunch at the cafeteria. No more noodles so we got the two frozen vegetables and a peppery potato $2.79 special to have with our breadmaker bread and milk. I have to drink lots of water for a day. Sunday the MRI, Monday blood draw and doctor's visit. I don't expect things to go wrong. From one website I read relapses in cases like mine are most common from 8th to 14th month so after next May my chances improve. This is the 9th month after the PET scan.
A ct scan for making a mold???? I made a mold for my chest radiation therapy by laying on a plastic bag full of wet plaster. Why would it be different for a knee? In addition to the radiation tx, there was a weekly exam by the radiation oncologist.
The CT scan is supposed to pinpoint where the sarcoma regrew after surgery, and then I would guess they mark that on the mold so that they can aim the radiation very precisely to kill just the sarcoma. I did not get to ask more questions because I had to go off to get the IV. A doctor friend of mine emails me the results within a day or two so I do not have to wait until next week. For some reason they don't want patients to read these - perhaps because many won't understand anything. I am betting that my enlarged thymus is back to normal size as I have not felt pressure in that area since early October. Last time they told me I could not possibly feel the enlargement. I could also tell when the fluid around my lungs was gone before the CT scan indicated that, because it stopped hurting. klg - could you feel your thymus was enlarged? And didn't they do a CT scan before they irradiated? Today I got another reminder in the mail about this morning's appointment, when I got home (along with reminders of the next three appointments Sunday and Monday). Jim gets notices of blood donation dates at the Chamber of Commerce that arrive the same day. Is there some place to donate at the hospital instead? It is very difficult to pry from the Red Cross information about local donating events. Chamber of Commerce is the closest. Once I managed to get someone to promise me to email this information from Red Cross and she sent at Excel file that I needed to convert to something readable.
Yeah. Very difficult. http://www.wc-redcross.org/blood/blood.htm
Thanks, klg. This may be new. A couple of years ago we could not find this info online. Jim likes to donate at Chamber of Commerce but they are not listed for this month. This week he can donate at Michigan Union Wed-Friday 2-8 pm, and Friday also at the East Hall atrium. On the 24th at ISR, 9-3. My young Macedonian friend whose mother died of stomach cancer reports that her aunt is now in the hospital awaiting two operations for cancer in situ. My neighbor on the corner has probably just finished her 8th and final chemo session for the same lymphoma I had. It started with hip and leg pain and they took a very small X-ray and told her she might have sciatica. A couple of months later someone thought to scan a larger area. She is still on crutches but the area of hip bone that was destroyed by invasive tumor cells is nearly grown back to normal. She was acting really cheery - in our cases the cure was a lot better than the disease.
I passed, nothing is changed including 'mildly' enlarged thymus. Tonight we biked to the Michigan Union to donate Jim's blood and discovered they were having a Blood Battle against Ohio State, complete with battle noises (probably from the radio) and bright lights in your eyes. Jim did not think he could stand over an hour of this so he will wait for the Chamber of Commerce in January. Only U of M was listed on the website for November and the Chamber said Red Cross did not want to collect from them again this year for no reason they knew of. The Chamber has homemade cookies. Perhaps some local bank will donate before January. The CT scan results referred to uneventful administration of contrast solution. I guess blood all over the floor is normal. I am getting used to the funny-tasting artificially flavored solution. It is at least no longer icy cold. The banana version might make me nauseous though. Having drunk nothing for 15 hours I did not mind the 32 oz of liquid. I decided not to get up at 4 am for breakfast this time. I could catch up on sleep now except tomorrow is garbage day, meaning noise all morning starting at 7:30. MRI Sunday. Blood draw Monday. Two doctor's appointments then maybe I can have off until mid February. My chances of a relapse peak at 11-14 months, which includes February. Maybe I will celebrate the 1-year mark.
Today I went for an MRI. They said to come 30 min early and then we just sat there for 30 min. Almost was a bit late because the med school is now locked on Sundays, but someone let us in the door. We park there and walk through the building. I wore nonmetallic clothing but they made me change anyway, to XXXL gown and scrub pants. I nearly tripped over them. I don't know how a XXXL person would fit into the hole in the MRI machine. My short underwear was okay but they would not allow the long underwear (no good reason) or the t-shirt (screen printed) or flannel shirt, so I put that over the gown and at the MRI room they said I could leave it on. I got earplugs but could still hear what sounded like varying frequencies of very fast jack-hammer crossed with loud buzz. The strapped down my middle and feet so my pelvis would not move. I did NOT have to fast first, or keep my arms lifted up in the air or behind my head. The hole in the machine was too small to allow that anyway. No IV - it would not have fit into the machine, which must be a very large circular magnet of some sort. They injected the rare and highly magnetic element gadolinium near the end and took another picture before and after. I hope moving my leg in between did not spoil the picture (I forget, when they took me out for the injection) Gadolinium is much safer than the iodine used for CT scans but sometimes burns if it leaks. Mine started to leak so they stopped just before the end. It is used to provide better contrast for various tumors and other problesm in the breasts, liver and brain, and for slipped disks. I don't know what they are using it for here. MRI is what is used to detect bone necrosis due to overdoses of prednisone but my symptoms don't act like the usual ones for that and I only had it 5 days at a time. My mother got the necrosis by taking large doses for months at a time and it hurt to stand. It just hurts me to sit. I don't expect them to figure this out. But it is worth trying. This is not for claustrophobes. 45 min in a narrow cylindrical opening that did not let me move my arms at all and was probably a few inches from my nose but I had my eyes shut. Cool air was blowing over me all the time - don't know if it was too make it easier to breathe, reduce claustrophobia, or cool the magnet. I studied NMR (renamed MRI) in chemistry, where it is used to identify molecules from how they absorb different wavelengths (?) of magnetism. Maybe Rane can explain how it works for imaging. I will read more later. Got to get some sleep before I get jabbed for a third time this week at tomorrow's blood draw, followed by the doctor telling me how good my CT scan came out. Nothing has changed including mild thymic enlargement. I am no longer cold sensitive like I was for 9 years before I got diagnosed, when I would get flu-like symptoms if I got slightly chilled, and had to sleep with a hat to 75 degrees and socks to 80 degrees. I am down to 55 degrees now without needing a hat. Somehow the immune system was overdoing things. The hot flashes might be helping. They are back up to about an hour again, having gone from 50 min to 1.5-2 hours and back down and back up and now down again. Cannot find much of a pattern. The thymocytes, which mature in the thymus, are what attacks tumor cells, so I don't mind having extras for a while. No blood donation sites are listed this month except a few in Ypsilanti and the rest are at U of M but we found one for Wed at the ISR, which we hope will not have battle music. The ISR tends to have lots of cookies at its receptions so Jim hopes for chocolate chip.
Did I mention that to keep me from moving for 45 min they strapped me down across the middle and then also tied my feet? When they told me I could get up they forgot to untie my feet. We were nearly late to the appointment because the medical school doors are now all locked and you need a special card to get through, as of recently. Finally someone coming out let us in. On the way back a couple of other people could not get through that building either, one trying to read the med library. A nurse tried her card but it had to be a student card. They say this is something to do with the current regime's war. Perhaps they expected us to look for anthrax on campus? Thursday we paid for Jim's Unix Shells and Scripts class with two $100's and a $1 after they refused to let me pay online with my bank routing number for his student account. The current regime has made it illegal for anyone to pay for someone else's tuition. I don't know if this includes parents trying to send their kids to school. Do 17 year olds have to have checking accounts now? But there was no problem paying cash. I wonder if paying cash will brand Jim as a possible subversive element. He might be able to program the medical school computers to make anthrax bombs, for instance. Today I postponed my 3-month checkup a week because I still have a sore throat and I am now sneezing as well. My small neighbor was out of kindergarten for a week with her sore throat and fever. I DO NOT want to expose the people there for chemotherapy. Also it would probably affect my blood counts. Anyway, who needs to get jabbed three times in one week. Coming out of the hospital, we were let into the medical school by a student who had a card but did not bother to use it. She showed us that you can just push the door open because the lock did not latch properly. This is really high security. We noticed other people holding doors open for each other.
The MRI showed nothing and nobody knows why I hurt to sit. Today we got there an hour early for the blood draw and doctor. They called me for blood draw while I was taking off my coat. Sometimes it is an hour wait. Then I waited from 10:15 to about 1:15 to see the doctor, who first talked to someone from Saginaw who had a bunch of possibly related symptoms and maybe T-cell lymphoma along with diabetes and breathing problems for 16 years. She can't handle chemotherapy so they keep irradiating. Someone else has been coming for 8 years for multiple myeloma which the doctor diagnosed after she hurt her back falling off her bike. Two parents where there with a small child to see the hematologist about his infusions for hemophilia. Based on weight, only $500 for a 1 year old, and eventually he will need every other day. He is missing factor 8 out of 13 links in the metabolic pathway, the most common link to be broken. He makes no factor at all. The myeloma woman looked familiar. She comes every week for a new treatment, the last few having failed, including bone marrow transplant which required 28 days of hospital isolation. She said she told the doctor she was tired of fighting it but they think the new treatment is helping. It kills the tumor cells in her bones then they give her a drug to fill in the holes, so it must be working. Drug approved only this past year (June). The assistant doctor felt my lymph nodes (they are fine) and said it could take a year and a half to get back my energy. I probably do not have permanent heart damage but if I ever have heart problems tell the doctors I had adriamycin. Nobody knows why it still hurts to sit. Now that I have passed four scans this year at 3 month intervals, he is cutting me back to every 4 months for next year - March, July, November - so I don't need to go there in the snow and ice (depending on how the first day of spring 2005 treats us). My present for this year. Then I spent half an hour with the customer billing assistant and the insurance company trying to figure out why I was being billed $2.89 in addition to having paid the ^$8000 deductible. THe insurance co tried to tell me that was part of my 70% of the $10,000 over the first $5000 but I had paid it all. They will all investigate. I suggested it would be cheaper to just cancel the bill. I vaguely recall the hospital sending me one $2.89 credit and one $2.89 bill and promising to apply one to the other. Probably someone did only half of this procedure. Got to find the papers for them. We looked at the 3:30 cafeteria offerings and decided against canned vegetable soup with salty cold pizza and feasted at Dinersty for $4 each including soup and eggroll. And biked back in the melting snow. Next appointment Friday with the bone doctor then four months off. I will catch up on sleep tonight.
Today I showed up 15 minutes early for my 10:15 orthopedics appointment to let the guy know he fixed my heel pain and see if he had any new ideas. There was a shortage of residents and we waited until nearly 2:00. While waiting I talked to another patient who spent 8 months in a body cast (she said she could poke a scratching implement through holes in it) after back surgery and is now unable to work. She takes care of her mother, who spent 10 months (!!!!!) in the hospital with peritoneal cancer, including surgery, chemotherapy, physical therapy. We compared diets. Her mother's sense of taste is still not back. She could not handle sugar, or fruit, and also had dietary restrictions due to an ostomy. Was too weak to sit for a long time but regained the ability to walk eventually through rehab. Her fingers are still numb. It has only been four months since chemo ended so I let her know it can take a year or more to recover from therapy. My appoinment consisted of him telling me he was sorry he kept me waiting so long and there was nothing he could think of to fix my problem. My problems felt pretty insubstantial by then, comparatively.
Progress report. My hands have mostly stopped hurting now that I put the keyboard on top of the wristrest in the keyboard drawer so I cannot rest them. I am hoping the sitbones can eventually be cured that way if I can find some way not to sit on them. Apparently it is common to get cracks on the corners of your lips during and after chemotherapy, but it is also a sign of riboflavin deficiency. I have no idea how the chemo and the vitamin are related, but I looked up common foods containing it: milk, oily fish ($1/15 oz mackerel at Kroger), beet greens (we have lots in the freezer) and yeast. The Chinese food store has large jars of pink distiller's yeast, salty, for $1. One or more of the above is reducing the symptoms, which also include a scaly nose. This week I noticed that the hot flashes, which for 15 months have been 45-50 min apart in warm and 90-120 min in cold weather, are now 3 hours apart or more and may be skipping nights entirely. 4:30 7:30 10:30 (then 11:30 ;=() Perhaps the zero degree weather or the 50 degree house are helping? Experiments in not sitting: we found another well-padded office chair at the curb in need of some wheels. It works without them. The foam donut does not work - it puts the weight right on the bones. Toilet seat on bucket worked until I fell off it backwards during a phone call. (Open end up). So now I am trying it on a milk crate (open end up) which is more stable but a bit low for typing. I could try two of them but then I might fall over again.
One more CT scan down, this past Monday. After I specially requested a
smaller IV needle they got permission to use size 22, which hurt much less
and did not get blood all over the floor like the bigger needles all did.
They need to use an IV instead of an injection because the iodine contrast
solution gets pumped through by a machine to speed things up. I was in and
out in about 5 minutes. Two years ago it was 20 minutes and I had trouble
holding my breath long enough. This new machine also has a motor to raise
and lower it so you don't need a chair to climb up, which is handy since one
arm is not very movable with the IV in it. The lady who runs the checkin
remembered that I want unrefrigerated 'berry' flavor - just like a restaurant!
They have signs asking people not to eat while in the waiting room because
patients have to fast 6 hours. I fasted about 15 rather than getting up to
drink water in the very early a. m. We celebrated with lunch at the hospital
cafeteria. Jim got his usual pizza inside the crust ,and I got salty mashed
potatoes with two kinds of frozen vegetable. We looked very briefly at the
plastic box of General Tso's imitation chicken - deep fried breaded tofu with
very little rice and vegetables'. Next Monday they will do a blood test and
the doctor will tell me I am okay.
I talked to someone who is down to CT scans every 4 months (like me)
but has to continue for the rest of her life due to a lung problem. She also
needs oxygen via a tube 24 hours a day or gets short of breath.
I keep feeling lucky. Lots of people there in wheelchairs and someone
walking back and forth in the hall (they put up those yellow plastic signs
labelled 'cleaning floor' for him to walk between) to make sure he could walk
and breathe at the same time. I recall doing that before I was discharged.
My 86 year old friend who had stomach cancer surgically removed said
finally her digestion is back to normal but now she has a heart problem -
pulse 118 (like mine was when I was sick). She has been going dancing again.
Notice how she doesn't object to new medical technology (e.g., improved scanner) that was developed because of our health care system (as opposed to the sadly-lagging socialistic systems) when she personally benefits from it.
Nice to see how cancer survivors support each other, klg. Somebody run over your dog or something?
(No. But I killed the Easter Bunny on the way to work today. It came out of nowhere on a dark stretch of road. Then thud ... thud. Sorry, folks.) Nonetheless, I am only pointing out the inconsistencies of, one one hand, railing against the system in the abstract and, on the other hand, expressing appreciation of it when it serves your purposes. It has nothing to do with being supportive or not supportive. Perhaps if she were to realize what she's doing she might change her position on the matter. And, anyway, she does not even read my posts, so what's the difference what I say?
I am only pointing out the inconsistencies of, one one hand, railing against the system in the abstract and, on the other hand, expressing appreciation of it when it serves your purposes. If you're so against that, sonny Jim, why do you make a nasty habit of it yourself? Because you're a self-righteous, rightwing hypocrite, that's why.
Did I miss anything important? I just calculated that this year my post-insurance medical expenses (not counting insurance, dental, and eyeglasses and any drugs) will be down from $8000 to about $6700, and next year $5700 - down from 4 to 3 to 2 CT scans/year at about $4000 each discounted to about $3000. I pay the first $5000 then 30% of the rest. I already donated this year's savings to a tsunami relief fund.
Re #436, first sentence: No.
Just got my bill for $3971 for the CT scan, not including a couple hundred dollars of blood tests. The insurance discount knocks off about $1000. Total for the year will thus be only about $10,000, of which the insurance pays 70% of amounts over $5000. Unfortunately since I have a preexisting condition I cannot switch policies every 2-3 years along with all the other healthy people, when the premiums go up. This year they just went up 25% and they will probably be double what they started at by the time I am done with CT scans. $1500 insurance for me, maybe $1800 for Jim, $5000 deductible, $1500 copay, and some dental bills. $10,500 medical expenses this year if nobody actually gets sick. We got glasses last year. I am still trying to get my strength back. I can now slowly run about a half a block, or a block if I force myself. I walked a few blocks with the neighbor who recently finished lymphoma therapy and was forced to stay in bed for a couple of months because her hip was affected and was half-gone. She had assumed she would never get her mobility back, apart from finally getting off crutches, so I told her not to give up for at least two years. Yesterday we met someone walking around Saginaw Forest with one crutch (she had recent hip surgery) and her friend had a plastic cast on her wrist.
http://usuarios.telviso.com.ar/iscrc/eng/howtofindoutifyouqualify.htm "How To Find Out if You Qualify "Evaulation "It would be best for a patient to come to our facilities for evaluation. However, this is not always possible for an initial consultation. For us to evaluate you as a candidate we will need to have copies of the following: "Original X-Ray (at time of injury) Current X-Ray (6 Mos. or Less) CAT Scan (6 Mos. or Less ) MRI (6 Mos. or Less) "Your Medical Chart if available. If not, a Medical Report such as a discharge summary is sufficient. "If you are located far away we can handle this by mail. Just send us this information and our neurosurgeon will review it to see if you are a candidate. The other option is for you to come to Mexico for an evaluation in person. If you wish, we can arrange for the X-Rays and CAT Scan/MRI to be done in Mexico. We have made an arrangement with a Radiology Lab to provide us with these services at very reasonable cost to you. The cost for X-Rays and a CAT Scan or MRI is approximately $750."
A radio report stated that moderate daily alcohol use (i.e., a drink a day) appears to reduce the risk of developing lymphoma. Good news from my radiation oncologist today. It's 3 yrs since my tx ended & don't need to make any more visits unless I want to.
Congratulations. I need to have regular CT scans for five years. You must have had something localized. Thanks for sharing your good news. On the most recent garlic mustard pull I was pulling with someone whose friend from 40 years ago is in the hospital with lymphoma, and apparently in worse shape than I was because she is in pain and can't eat, so I am going to go along on a visit to assure her than things can get better soon. She had only one chemotherapy session so far. People are still commenting on my 'long Afro'. I am one of those people who had curly hair to start with and ridiculously curly hair now. It is supposed to last about two years. I am looking for the people who accept donated hair to make into wigs for other people who lost their hair. Locks for Life.
Locks of Love is a program for donating hair to make wigs for children and no grey hairs are allowed and they need at least 10". Some other places want 12", a few only 8", and one 6", and that is measured in a ponytail. Mine is so thick I can't tie it into one and it is no more than 5" overall so I guess I will just have Jim cut it off. No way am I going to let it grow another 5" (10 months). Synthetic wigs are more easily cleaned. And much cheaper to make. Great Britain provides free wigs for patients (not human hair, but synthetic).
(Thanks, But medical oncologist visits & CT scans will be continuing long into the future. I just don't need to go back to the radiation dr.)
How many years of CT scans for you?
Haven't really been told.
One more CT over with. I arrived 20 minutes early and then spent 40 minutes convincing them that I really did need both the oral (barium sulfate suspension) and the IV (iodine) contrast medium. Someone else was trying to convince them she was allergic to one or both of these and was supposed to get some alternative. I recall my first CT scan when they said not to drink the oral stuff then gave it to me AFTER the IV and I had to wait 2 hours with IV in my arm, which made me suspicious. While waiting around the extra 40 min I talked to someone in remission from stage 4 lymphoma who also had pneumonia, because it was squeezing her windpipe and lungs (it was in one lung), and she was still taking pain medication but her blood counts were finally closer to normal. Part of the pain was in her bones which hurt because of the medicine given to make them produce more white and red blood cells. Someone else told me about her every-2-week treatment for breast cancer that got into her liver. She will be doing this forever (with luck, assuming it continues to work) but has only been 22 months. She used to throw up for 5 days after each treatment but they found a better antinausea drug. Someone else was holding her nose over the banana suspension so I recommended berry for the second dose. They used a smaller (no 22) IV needle which went it right the first time with no blood on the floor, which is about the only thing that went right today. The IV would not work right, until the technician tried out about ten different arm, wrist, and hand positions. The doctor's appointment went fine and involved no blood draws. Jim was told maybe he should have B12 injections because low B12 meant you were not absorbing it properly. I explained he was not eating any B12 (animals). After a bit of food and water (having had neither since supper) I went for my blood draw and it took three tries, all painful, to get one working, which landed on top of the IV hole and is still purply blotchy and hurts. I was unthinking enough to yell ouch on the second one - which you do NOT do in a room full of people about to be jabbed similarly. Jim is getting tested for selenium because he read it prevents cancer if you add it to diets that are deficient in it. I tried to convince him that a whole grain diet high in beans, vegetables, and fruits, would be a lot less deficient than the typical hamburgers and fries diet. We looked at the cafeteria offerings (vegetable soup or meat or salad) and came home to make our own. Next CT scan will be in November. If I get the expected good results on this one we plan to take a month off before that to travel east. This particular doctor does not recommend unnecessary tests so we got only what we asked for - no mammograms, PAP smears, PSAs, glucose or cholesterol, colonoscopies. He advised us to avoid smoking and to wear seat belts. We countered with bike helmets. Heart disease kills five times as many Americans as cancer and the five most common cancers are not ones we are prone to get genetically or environmentally. We both had blood pressures of 102-104/60-62, no family history of early circulatory problems, good diet, exercise, no drugs.
So your prostate reading is o.k.?
Jim's was fine two years in a row. He asked about colonoscopy and was told to do a home occult fecal blood test instead ($24 charge by the lab to evaluate it, or the doctor thought maybe you could get the chemicals to do it at home yourself somewhere). The insurance pays 80% of lab tests and general exam up to $400. I only got the usual three blood tests for cancer. Unfortunately our doctor friend who sends me the results immediately is out of town, so we will have to wait a month or two for lab test results, or a week for CT scan once the lymphoma specialist finds time to look at them. We were told to fill in a comment form by this doctor, who is trying to convince the hospital to let doctors automatically email test results to patients without having to reformat them first and look up email addresses etc. He is a 'real' doctor, not an intern, and says he will be too busy all week on the wards to deal with test results that are normal. He also said to suggest they provide a way to scan things into patient records that the patients bring in (such as my typed summary of our health).
The nurse practitioner emailed me that my CT scan was fine, and my blood tests showed platelet count of 114,000 when normal is 150,000 to 400,000. I am usually in the middle of normal. I noticed that a cut bled a lot recently. I did some web research and discovered that prednisone, which I took until a week ago, for 10 days, 15 mg/day, for systemic poison ivy, reduces lymphocyte count and elevates platelet count (and is given to elevate platelet count). A symptom of withdrawal is reduced platelet count, probably because the body stops making the natural equivalent of prednisone (a steroid hormone) while you are taking the drug, and has to get back to making this hormone, which controls the production of other things like platelets. Taking prednisone decreases your immune response, so it is given to people with autoimmune diseases, who then get bacterial infections. I also noticed diarrhea during and after I was taking it, finally going away. Other withdrawal symptoms are headaches and nausea, but I got those during not after (threw up 10 times after the first pill, at night), maybe because of fluctuating levels. Luckily my count was not low enough to require treatment, she said. Also not low enough to redo the tests. The low platelets might be why they had so much trouble with my veins - or low something else? Prednisone also affects people's menstrual cycles but I don't have one any more because chemotherapy causes premature menopause. It did, however, put the frequency of my hot flashes back to what it was over a year ago. I notice that the frequency is 90 min in the afternoon, 50 min at night, probably due to gradual decline in estrogen over the day. Sort of hard to throw off the covers when it is too hot to sleep with covers. Finally got one good night's sleep last night anyway, when it dropped to 60 out, 70 in. The body normally puts out about 7.5mg of prednisone equivalent (probably for the average person and I am smaller) so adding 15 mg for me was like quadrupling normal levels. During chemotherapy I had to take 100 mg. I also had the same side effects of being 'hyper' and having trouble sleeping (I was lucky if I got 5 hours this time). A withdrawal symptom is sleepiness, and I have been falling asleep in the afternoons or evenings, once while visiting friends. I have to apologize and offer my excuse.
Current issue of CURE magazine has an interesting article on lymphoma. It appears that researchers have identified characteristics of different "strains" of the disease and are able to customize treatments to the particular strain. CURE is, I think, available on line.
This is not new. One of the drugs used is a monoclonal antibody. It attaches only to lymph cells that have a certain marker on them. Most cancerous lymphoma cells do have this marker, about 15% do not (they lost it). People are working on developing similar treatments for other forms of cancer. You can also attach radioactive iodine to this drug, so that when it attaches to a lymph cell, not only does it act to attract the other cells which kill these marked cells, but it kills them directly. It also kills nearby cells, which include more lymph cells (some of them inside a tumor and not directly accessible) and other non-cancerous cells, which is why you don't use this drug if other things will work. At one point they kept patients in the hospital for a week afterwards, behind a lead curtain, to protect other people from the radiation. By the way, I passed another checkup in early December and only need to go twice a year for the next three years. They recommend flu shots for people who had lymphoma, because we might still have weaker immune systems. (Mine appears to be normal, judging from the blood counts). I got billed $29. The county clinic in Ypsi only charged $15 two years ago but it was a much longer trip, and a 2 hour wait. The nurse kept me in the room for 10 minute afterwards to make sure I had no reaction. I needed a prescription to have it done at the Cancer and Geriatrics Center because there is a shortage of flu vaccine this year. Apparently people think it will protect them against avian flu. A friend's mother had surgery and is undergoing chemotherapy for breast cancer. (They wanted her to do it in reverse order but she is 75 and did not want to be too weak for surgery, having heard that chemotherapy is very hard on you). They offered the older treatment with methotrexate, or a newer one consisting of two months of Adriamycin and Cytoxan (two of the drugs I had) then two months of Taxol. They said the older treatment had less side effects, and her 10-year cancer-free-survival rate would be 15% with the new treatment and 5% with the old one. She figured she would die anyway so was going to choose the older treatment but then I looked up some other statistics. 5-year survival rate (with or without cancer) is 50% for her Grade III (rather advanced) form, which includes deaths (by age 80) from things like heart attacks, strokes, and being hit by a car. What percentage of non-cancerous 75 year olds live another 10 years? I also pointed out that her cancer is relatively slow-growing and that they find new treatments every few years. If she was still around in 5 years and the cancer recurred, there were already alternative therapies that could knock it back for another few years. My aunt was treated for breast cancer at age 86 and died at age 88 from a fall. The friend's mother chose the more aggressive therapy. It also helped that I described my side effects. She was concerned about the Adriamycin escaping from the vein. It happened to me, my hand hurt for a week, it was worth it. The 'milder' therapy can cause all the skin to peel off your hands and feet but does not make your hair fall out. I told her mine did not fall out, just thinned, the first few months, and to wear a hat. That the side effects were cumulative and worse if you took five drugs not just 1 or 2 like she will have, and did not get so bad for the first few months, which is all she is doing. (This info actually all went through someone else because her daughter thinks her mother does not want anyone to know what is going on.) I still have the side effect of lymphoma that it hurts to sit, and my strength is not back to what it was, but I am working on it. The neighbor who had lymphoma a year after me went for a walk with me along the river for 90 minutes and wants to go again. We went slower up the hills. Jim put a trampoline next to the basement piano for me. I climb stairs to use the manually operated washer (6 times per load).
Congratulations on your checkup. Why do you climb stairs 6 times per load?
(A trampoline in the basement? I'd pay to see you use it.)
I told you, the washing machine has a manual control. Jim made it from a large computer power supply case, added three toggle switches and a 12 minute mechanical timer (which cost money - I used to use it to time my electric frying pan so I would not forget it and burn things). Turn on the big red switch, which starts it rotating, then the first toggle, to feed in water, and the timer for 12 minutes. Go back upstairs. Come down and turn off the water-in switch and turn on the second switch to pump water out, timer for 3 minutes. Upstairs. Downstairs. Leave pump switch (#2) turned on, also flip up #3 to spin. Stick around for a minute to make sure the machine is not going to walk off the platform, with timer set to 3 minutes or so depending on load size. Upstairs, downstairs (or use the bathroom, which is also in the basement, or bring a book). Turn off #3. This is a wash cycle. Repeat twice for two rinses. If you want spray rinse, stand there and turn #1 switch on for 5 sec, off for 5 sec, repeatedly, during the spin cycle. If I stick around during the spin cycle instead of going upstairs, that is two trips each for wash, rinse, rinse. If I don't spray rinse, it is 9 trips. The trampoline is a small one we found at the curb and Jim fixed and it is in the basement because it is cooler there, and next to the piano, and I can use it to warm up while practicing piano. How much do I get paid per minute of exercise, klg? This basement is not the one with the washing machine, that is at my apartment. I should get back to doing pushups. I started by standing, leaning against the wall, and progressed to doing them on my knees, 50 of them. In high school we had to do 15 each situps and knee-pushups to pass a fitness exam. When I started in 2005, I could only do about 3 against the wall.
Can Jim turn a dishwasher into a snowthrower?
re #454 That sounds wild with all the switches. I'd totally forget what cycle was next. How long have you been playing piano?
Re 455 - why would anyone want to own a dishwasher or a snow thrower? They both make an awful racket and waste fuel. Re: 454. From age 7-14 lessons, and I started lessons again last summer but my teacher just graduated with an M. A. and it is not good weather to be biking to north campus for lessons. I can tell what cycle is next from which switches are up or down. If 1 is up, turn 1 down and 2 up, if 2 is up turn 3 up, if 2 and 3 are up, turn them down and turn 1 up. Simple, except when I forget. My neighbor with the dirty laundry keeps bringing me breakfast. I can see why he is not skinny - hash browns (fried), biscuits and gravy, and he was going to bring hamburg but I reminded him I don't eat hamburger so he offered veggie burger and brought fried breaded shrimp. I am going to have to risk hurting his feelings and turning down the next breakfast. Once it was oatmeal (and some other things to go with it as an antidote). The breakfast pizza one day also had hash browns on it (and some little greasy red things that I ignored). I just got an email today asking me to volunteer to test out the new U of M Cancer Center website. It is an hour next week, but two hours to get there and back (North Campus) or maybe more if it gets icy again. Good exercise. At the Survivors' meeting last spring I was the first to volunteer to sort little pieces of paper with topics on them into related piles and I must have left my name and email address then.
That's alot of grease and carbs. I've been having wraps for breakfast (if I have breakfast.)
Answer: You give her a shovel.
What is 459 in reference to? I have several shovels.
Re #457: Why have a washing machine that wastes water and fuel and makes a racket. I use a dishwasher to free up my time for other more fun or productive things (like homework, other housework, charity knitting, petting my kitties, etc.) and to sanitize the dishes (a dishwasher can wash dishes with a much higher temperature water than my hands can handle). I don't find the noise any worse than some of the music played by my neighbors or Damon's games. Modern dishwashers really aren't that noisy.
My washing machine does not use any more water than hand washing and possibly less, because it spins them dryer than I can wring them and can wash in colder water than I want to handle by hand in the winter (for rinses). My dishes don't need to be sanitized, they are not infected, and the detergent and water remove any food that bacteria cold grow on. And I find it takes no more time to wash and rinse a dish that to put it into a dishwasher and take it back out, and it takes up much less space, and I don't need to own as many dishes because I don't need to have enough to fill a dishwasher, and I can use milder detergent that does not degrade the glaze or smell bad, and listen to the radio while washing, or wash dishes while waiting for the pressure cooker to reach pressure or the microwave oven to cook potatoes. I once lived in an apartment with a dishwasher that was broken, and they took it out for a while and we could store our potatoes and onions in the space. THey put in a new one, which was harder to store potatoes in.
I use the dishwasher maybe once a year..and that's only as a drying rack. I do not trust another human being to wash the dishes as well as I do..let alone trust a machine.
I passed another CT scan late April and the doctor said since all my results were good so far, instead of switching from every 4 to every 6 months I could go 9 months, which will save me the cost of a CT scan or two (and some IVs). I found a desk chair with spring that are sprung and if I sit on that instead of just thin cushions most of the day it does not hurt and I am getting better quickly as long as I don't sit on other things. I went swimming twice, the second time got a ride with a neighbor and swam a mile, same as my maximum last year. So we took her 6 year old step granddaughter to play on the really nice equipment at Independence Lake and she happily swung across one arm at a time on a set of bars that I could not even hang from with both arms for more than a few seconds. So Jim put up a bar for me that I am exercising on. At about 5'. I can do diagonal pushups and pullups and also hang from it, and some day maybe do a real pullup. I can also run a block slightly uphill, or two on a level surface, before getting too out of breath. One of the chemotherapy agents (adriamycin) causes heart damage, maybe that is why I get out of breath? I will try to run every day and some day get around the block, but probably not do a marathon. This year I only have to pay for one CT scan. $3200 plus $400 for the doctors', after the insurance gets its large negotiated discount. THe second scan in a year puts me over $5000, at which point the insurance starts paying 70%. A neighbor says Washtenaw County has free health insurance for anyone making under $17,000/year that has very cheap doctor's visits ($25 copay) and practically free drugs ($3 copay) and free emergency room service and free preventive care. (I get 80% of up to $400/year paid). You have to prove you are not eligible for Medicare, he said (Medicaid?). Does Medicare provide free preventive care? I wish there were a closer place to swim without chlorine.
Jan 29 CT scan without any X-Ray contrast solution, meaning no IV, meaning it took 1/4 as long and did not hurt. They don't know in advance so I worried about it all week anyway. It should also be somewhat cheaper.
I hope you get good news about the results of the CT scan, Sindi. Let us know when you find out.
Thanks, denise. I emailed the nurse to ask.
She forgot to answer. Today she apologized. Everything normal. I was supposed to have the IV/contrast dye part of the CT scan but she forgot to tell the radiologist so they skipped it. Instead of every 6 months for the last three years, I had last week's scan after 9 months and the next will be in December (11 months, same calendar year so the insurance will pay a bit of the $6000 total, maybe $500), and the one after that at 13 months, and in exchange I only need to get a general checkup and blood tests in between scans. This is saving us three CT scans at $4000 each. The doctor told me my chances of recurrence were now very very low and I made his day. I hope he tells lots of people that today. We finished off the hospital trip by a nice chat (in Russian/Ukrainian) with an 80 year old man from near Kiev waiting for his wife. They know 10 words of English and were delighted to talk to a real American. We know one of their four regular interpretors. He told us how 3 years ago before they came here they could easily afford, on their pension, to stock up for the winter on potatoes, onions, cabbage (to make sauerkraut), cukes (to make salt pickles), and tomatoes (also to preserve) but prices have doubled since then relative to pensions. There are serious economic problems in Ukraine. They came because their son in law's brother somehow got a visa and they can all invite immediate family.
My neighbor on the corner said she is now down to a scan every 6 months and also feels fine (after the same type of lymphoma). We are planning to go swimming at the lake again, but not immediately.
The cancer doctor is letting me get CT scans every 12 months instead of every 6 months for the last three years of checkups (out of 5 total). After 3 years of checkups the chances of recurrence are very low. But I need to get blood tests every 6 months so I had them done when I had my annual physical. The doctor told Jim he did not need annual checkups (at least not PSA tests) and then checked my lymph nodes. He diagnosed my soreness in sitting as ischial bursitis, an inflammation involving a sac where the tendon and bone connect (?). One possible cause is pressure. One possible treatment is stretching exercises (probably won't help in my case but I tried them anyway, however they aggravate the pulled muscle or tendon that I developed a few years ago while sitting on my left foot to relieve the pressure on my sitbones). For some reason the bone doctor who gave me an X-ray and an MRI never thought of this. It sounds reasonable. The doctor said I could have the physical therapy dept show me exercises. I looked them up online instead, much much cheaper. A treatment is to sit on a foam cushion with cutouts. I will try styrofoam. The cancer doctor said I should not be getting more frequent viral infections after chemotherapy, but both my neighbor and I seem to be sick about 3-4 days out of every week, generic infections. This week I have been sick for 6 days with something that Jim had for 3-4 days so I called the general medicine dept asking why, and the nurse there said after chemotherapy, maybe forever, I can expect to be sick 3 days longer than anyone else. This is a virus that is going around and I should be better in a day or two. Generalists often have a better overall picture. So do nurses. I wonder if my immune system memory was affected (fewer memory cells).
The same doctor is letting me not see him annually for blood tests and exams. I can ask my regular doctor to do them instead (for which the insurance will pay 80% since it is preventive and not diagnostic). I passed my very last CT scan and had normal results on all three blood tests this week. The beginning.
Glad to hear the good reports, Sindi.
My health insurance premiums are up 50% over last year, because they stopped offering this plan and anyone who can is switching to something else, which leaves those of us not able to switch in this group, and much higher premiums since some of the people who cannot switch are sick. I am not sick and was told I have near zero chance of recurrence, but no insurance company will issue me a new policy. Except my agent says BCBS might have just come out with something relatively cheap because they have to charge the same to everyone, of all ages, whether or not they have any preexisting condition. Preexisting conditions are not covered for 6 months. It does not pay for any drugs, or preventive care unless you go over the deductible, but it is cheaper than my current $8000 deductible (plus $1000 deductible for drugs) policy is going to be next year and the deductible is only $3500. Another agent says BCBS stopped offering this policy April 1. My agent was explaining something about it and thinks they are starting it again May 1. I hope he is right. Some insurance companies want a physical exam, one wanted you to have blood pressure under 140/90 (ours is 100/65 or less) and cholesterol under 220 (ours is 40 or 50), another was fussy about weight and height. BCBS wants a medical history but they cannot charge differentially based on it. I was told Medicare only costs $53/month but you have to pay 20% of all costs, or you can get supplemental insurance and pay up to $200/month (if you want drug coverage and no copay). Something to look forward to. If my policy keeps going up 50%/year I can switch to a more expensive BCBS (about $100/month more than the cheaper policy) in a couple of years. Then there is dental insurance, which pays 80% of preventive care if you pay premiums equal to about the cost of preventive care, and after the first year also pays 50% of the cost of fillings up to $1000 including the preventive care. The agent says most people don't think it is worth the cost.
We got the forms for American Community Mutual Insurance and they now have higher deductibles, up to $7500 after which you pay 40% of up to $20,000 for $15,500 out of pocket. A $5000 plus 40% ($13000) policy is only $190/month and pays for nothing at all until it hits $5000, except for accidents if you get treated within 30 days. (Maybe they figure this is cheaper in the long run for them). I am not eligible because I have a preexisting condition. We had a long list of conditions to check off or not for Jim - he has not had any miscarriages, or embolisms, but he did injure his knee and was tested for Lyme Disease. You only need to list conditions within the past 10 years so when I am 63 I can get cheaper health insurance again for a year and a half before Medicare. How do sick people come up with $7200/year for BCBS insurance while also paying their medical bills (the deductible)? Until April 1 BCBS had a $190/month policy for anyone of any age and medical condition (but would not pay for preexisting conditions for 6 months). I should have researched this sooner.
Good luck on finding something that works for you, Sindi. Since I've been on disability for several years, I qualify for Medicare. Along with the basic medicare, I have a supplemental policy through Blue Cross which reduces my overall cost for appointments and for medication.
You have several choices: