Item #86 entered by John Ellis Perry Jr.(jep) on Wed Aug 20 22:51:23 2003 Sindi Keesan's illness item This item is to discuss Sindi Keesan's illness. She received a preliminary diagnosis of lymphoma of the spleen. 255 responses total. #1 sherlock holmes(sholmes) on Wed Aug 20 23:23:57 2003: Hope she gets well soon . #2 Petroleum V. Nasby(pvn) on Thu Aug 21 00:38:49 2003: I hope this is not true. However, even if so the spleen is fortunately something that folk can live without quite easily. If so, she shares a rare illness with the last shah of iran. Personally, I thought this was a disease that primarily occured in canines which is why I first suspected jep is joking. #3 Sarah(michaela) on Thu Aug 21 04:51:05 2003: Actually, I know quite a few humans who have, or have recovered from, lymphoma. #4 S M(mynxcat) on Thu Aug 21 11:53:52 2003: I suspect pvn is alluding to lymphoma of the "spleen" as being more rare. #5 John Ellis Perry Jr.(jep) on Thu Aug 21 11:59:40 2003: I am not joking. Sindi entered some responses about it in the bummed item, and requested another item be created for her. She's said there she weighs about 95 lbs now; down 20 pounds from a few months ago. #6 Dan Cross(cross) on Thu Aug 21 12:22:46 2003: Oh, that's terrible! My uncle had non-hodgkin's lymphoma, and it was very bad. I've never heard of lymphoma of the spleen (nor do I quite understand what exactly that means, since I don't understand how the spleen interacts with the lymph system, but I'm no doctor), but this strikes a chord. If it's treatable, that's good. Good luck, Sindi! Feel better soon! #7 klg(klg) on Thu Aug 21 12:52:11 2003: We were treated for lymphoma from 11/2001 - 5/2002. It was limited, though, to the upper chest. We would be glad to share our experience with Ms. sindi, but she has chosen not to read our postings. #8 S M(mynxcat) on Thu Aug 21 13:04:12 2003: We? #9 Dan Cross(cross) on Thu Aug 21 15:33:08 2003: Yeah, I don't get this `we' business either. #10 Jennifer J. Kriegel(jiffer) on Thu Aug 21 15:43:07 2003: The Lymph System does indeed involve the spleen. The spleen is one of the primary "cleaning" sight for your blood. It will clean out any dead, weak, or damaged red blood cells and white cells. It is also a storage sight for various types of white blood cells. The spleen is important, and if a person has their spleen removed, they must be careful to not get sick, and typically on antibiotics to help their body fight off basic germs. #11 S M(mynxcat) on Thu Aug 21 15:51:41 2003: Re 9> I haven't noticed, does he do that all the time? #12 Todd(tod) on Thu Aug 21 16:19:22 2003:#13 Dan Cross(cross) on Fri Aug 22 11:28:49 2003: Regarding #10; Thanks for the explanation, Jiffer. Regarding #11; Yeah, all the time. It doesn't make much sense to me. #14 cs(oval) on Fri Aug 22 12:51:29 2003: we is leeron and its imaginary friend, klg. #15 klg(klg) on Fri Aug 22 12:58:12 2003: We beg your pardon, Ms. oval! Our existence is entirely independent. #16 Drew(drew) on Fri Aug 22 14:12:42 2003: Re #9: Multiple personality disorder? #17 Carolyn Woodroofe(lynne) on Fri Aug 22 18:02:15 2003: #18 John H. Remmers(remmers) on Fri Aug 22 23:09:51 2003: Re #7: Email would work. #19 Jeff Rollin(twenex) on Sat Aug 23 10:25:09 2003: Best wishes to Keesan. My father recovered from lymphoma. After recovering from cancer. Try keeping your spirits up! #20 cs(oval) on Sat Aug 23 13:43:44 2003: ya good luck sindi #21 klg(klg) on Sat Aug 23 16:02:16 2003: re: "#18 (remmers): Re #7: Email would work." Is there a Grex "Health" conference, or something like that for the discussion of such issues? #22 Scott Helmke(scott) on Sat Aug 23 18:22:08 2003: Indeed there is Health conference, although it's pretty dead. #23 Tim P. Ryan(tpryan) on Sat Aug 23 18:31:17 2003: Best wishes on recovery, Sindi. #24 Maxin' and Relaxin' in the Pacific NW(jaklumen) on Sun Aug 24 01:21:11 2003: Indeed. #25 klg(klg) on Sun Aug 24 20:46:21 2003: Thank you, Mr. scott. Item # 85 in "Health" is for the discussion of lymphoma. #26 Scott Helmke(scott) on Sun Aug 24 21:38:37 2003: Turns out I'm fairwitness in that conference. Want me to just link this item? #27 Dan Cross(cross) on Mon Aug 25 10:22:11 2003: Yeah, that's a good idea, Scott. Go for it. #28 John Ellis Perry Jr.(jep) on Mon Aug 25 12:24:32 2003: Thanks, Scott! #29 klg(klg) on Mon Aug 25 12:33:26 2003: It is a specialized discussion item pertaining to "health." Please just keep it there. Thank you. #30 Scott Helmke(scott) on Mon Aug 25 13:10:06 2003: Re 29: Er, is that a "yes" or a "no"? I can link it, but I can't control its existence in Agora, since I'm not a FW in Agora. #31 Kevin Albaugh(albaugh) on Mon Aug 25 14:36:25 2003: Does anyone else find the comment in #22 ironic? #32 John Ellis Perry Jr.(jep) on Mon Aug 25 15:05:06 2003: re resp:30: Scott, why does klg's preference matter? I created this item, at Sindi's request. I'd appreciate having this item linked to health because I think Sindi would appreciate it. No offense meant to klg! But I wouldn't think any user could come along and veto a request to have an item linked. #33 klg(klg) on Mon Aug 25 15:23:09 2003: Was that a veto or merely a response to a question? Why not have a single conference instead of sorting them by subject matter? #34 Scott Helmke(scott) on Mon Aug 25 16:12:14 2003: New linked to the Health conference as item 86. #35 Military Insanity(senna) on Mon Aug 25 16:29:21 2003: U of M, PPOM, all kinds of fun insurance words. Sindi, make sure you read all your bills--insurance billing often works like a charm. The more bills go out, though, the greater the chance that something will go horribly wrong. Keep your eyes open. #36 Rane Curl(rcurl) on Mon Aug 25 16:29:41 2003: Re #10: usually the liver eventually takes over the function of the spleen after the spleen's removal, so antibiotics and stricter avoidance of infection are only needed temporarily. Lymphoma is a cancer of lymphocytes, which can be confined to a single lymph node or can spread throughout the body to almost any organ. One of the functions of the spleen is to produce lymphocytes, so it is not surprising that it could be a site for lymphomas. #37 Sindi Keesan(keesan) on Mon Aug 25 17:42:48 2003: Here is a summary. Add to that CT scan at 8 (can't eat first), bronchosopy tomorrow (cant eat after midnight) something like prednisone and transfusion. Heart scan, catheter maybe tomorrow. The steroid is supposed to keep me awake. Hi. They sent me home Wed. from the spleen biopsy with a temp of 101 after a Tylenol (it was 102 ). After two days of severe pain at the biopsy site I called to ask about a pain killer and my fever. They said to go to the emergency room. I called my friend who is a doctor. He prescribed Tylenol with codeine and the next day put me in the hospital. You cannot sleep more than 1/2 hour in the hospital. The first night (11:30 to 12:30) they drained 2 liters of fluid from one lung (just as much left). They had taken chest x-ray s but took another at 1:30, after which someone kept coming in to take vitals on me and my roommate, 1/2 hour apart. I have a high pulse rate and still am not breathing deeply. Lots of blood samples, IV with saline and antibiotic. This morning I got to sleep a bit. They just did a bone marrow biopsy and next is a CT scan of the chest and a transfusion and prednisone and supper (can't eat for a while). Jim has been bringing me useful objects such as a kitchen chair and now a computer for email. I am writing you all at once as this is a really awkward setup. Tomorrow a catheter. They will get bone marrow results and maybe start chemotherapy. I have to eat more but they don't let me eat before CT. My just-left roommate had severe psoriasis. This is b-cell lymphoma and ifit has not spread should be treatable. Nothing feelable in the upper lymph nodes. It is sort of nice here. Someone chose my vegetarian food for the first day. Breakfast - zero fiber. Soy milk, juice, rice krispies, melon. A big insulating cover over the entree - one hard boiled egg. They brought me a pasty bagel which Jim ate and prune juice and a cheese omelette. Lunch (marked vegetarian) was chicken and stuffing and corn and potatoes and iceberg lettuce. Supper was vegetarian. One slice of white bread. One iceberg lettuce thing. The covered entree was thawed green beens. They added beets for me. Saturday supper was enormous: green beens with tofu-spaghetti sauce which Jim ate because it was full of black pepper. They brought me a replacement with plain spaghetti sauce. A mashed potato. Potato salad which Jim ate. Pasty roll which nobody ate. Canned peaches. Milk. A mixture of sugar, cinnamon and a bit of cooked apple which Jim ate. I got to choose shredded wheat today. They are providing snacks too. Got to get back 10 pounds. Tomorrow they put in a catheter and maybe start chemo. Need more test results bac #38 Dan Cross(cross) on Mon Aug 25 17:55:09 2003: Thanks for the update, Sindi. Though I often disagree with you about technical issues, I want you to know that you've been on my mind a lot recently and I've been checking this item to see how you're doing. If I understand your post correctly, if the cancer hasn't spread through the lymph system, you have a good prognosis. Keep your head up, stay positive, and I trust you'll come through. #39 klg(klg) on Mon Aug 25 20:42:02 2003: re: "#35 (senna): Sindi, make sure you read all your bills" Good advice, normally. But impractical. First, because there are so many. Second, because reading bills is the last thing someone undergoing treatment would have interest in. Bone marrow biop. Boy, that sure was fun!! Too bad the sedative didn't kick in. Had a thoracentesis, too, a couple days before chemo started. Looked like Old Faithful. Important to eat a lot - especially fattening foods. Lost sense of taste and desire to eat. Dropped from 178# to about 152#. There are books of what to eat when you don't feel like eating and there are nutritional supplements, neither of which were especially appealling. A month after chemo started developed a blod clot in r. calf. Probably due to inactivity. (Never felt so tired. Even sleeping 12 + hrs./day.) Spent New Year's Eve in the hosp. Confined to bed with a heparin drip. Ask the dr. about starting on blood thinners now. Suggestion: Cut your hair real short. Wasn't fun to have most of my hair circling the shower drain. (Took about 2 cycles before it fell out, though, and never lost it all.) One bonus, some hair grew back on top of head where there wasn't any before the chemo. Are you reading this or are you still blocking my responses?? #40 Scott Helmke(scott) on Mon Aug 25 21:39:28 2003: Sindi, feel free to ask for help. I'm still in town and fairly unscheduled. #41 John Ellis Perry Jr.(jep) on Mon Aug 25 23:09:59 2003: Thanks for the update, Sindi. There are a lot of people here who care about you. I was going to call Jim if I didn't hear something pretty soon. It sounds like they're intent on starving you. Can Jim bring you food? Klg's response in resp:39 describes his previous experience with chemotherapy and provides what appears to me to be positive advice. You might want to read that one. Let me know if you want visitors. Are you in U-M hospital, or St. Joe's? #42 S. Lynne Fremont(slynne) on Tue Aug 26 12:03:11 2003: I am sorry to hear that you are in the hospital. Everyone I have ever known who had to stay in the hospital complained about how hard it was to sleep. My father said that the last time he was in the hospital, they charged extra for cable TV but allowed patients to watch certain free videos that had health information. Anyhow, his roommate just kept watching the breast feeding instruction video over and over. Hahaha. #43 Sindi Keesan(keesan) on Tue Aug 26 12:50:58 2003: U of M. How do I read 39 whenI have klg ignored? Yesterday lots of blood samples, a CT scan at 9:30 pm (don't eat or drink first), told I would have a bronchiospy so don't eat after midnight, transfusion 1:30 to 4:30 am (don't sleep), blood withdrawal at 7:00 am, don't eat, nurses think I have bronchiosopy, doctors don't, got breakfast, called away to a MUGA heart scan for an hour (on my back, nothing to drink, started breakfast around 11, lunch came at noon. Veg. stew consisting mainly of hot peppers. Jim ate it. They will try for plain veg soup or a cheese sandwish. Real hole wheat bread. How do I gain weight when Ican't eat supper and then can'teat after mignight? They are waiting for a bed in chemo. I am taking some drugs bought genericat kmart 10 dollars for a monthsupply. The general price is $7 each at kmart and probably triple that here. I just got pizza. It looks bland. , #44 Christopher L Goosman(goose) on Tue Aug 26 14:22:59 2003: Can you talk to the nutritionist? You've got some pretty specific dietary requrements and talking directly with them might help. #45 Christopher L Goosman(goose) on Tue Aug 26 14:24:31 2003: This is klg's #39: ================================== re: "#35 (senna): Sindi, make sure you read all your bills" Good advice, normally. But impractical. First, because there are so many. Second, because reading bills is the last thing someone undergoing treatment would have interest in. Bone marrow biop. Boy, that sure was fun!! Too bad the sedative didn't kick in. Had a thoracentesis, too, a couple days before chemo started. Looked like Old Faithful. Important to eat a lot - especially fattening foods. Lost sense of taste and desire to eat. Dropped from 178# to about 152#. There are books of what to eat when you don't feel like eating and there are nutritional supplements, neither of which were especially appealling. A month after chemo started developed a blod clot in r. calf. Probably due to inactivity. (Never felt so tired. Even sleeping 12 + hrs./day.) Spent New Year's Eve in the hosp. Confined to bed with a heparin drip. Ask the dr. about starting on blood thinners now. Suggestion: Cut your hair real short. Wasn't fun to have most of my hair circling the shower drain. (Took about 2 cycles before it fell out, though, and never lost it all.) One bonus, some hair grew back on top of head where there wasn't any before the chemo. Are you reading this or are you still blocking my responses?? ===== end of #39 #46 David Brodbeck(gull) on Tue Aug 26 21:17:22 2003: I think this shows the dangers of using a twit filter. #47 klga(klga) on Tue Aug 26 22:26:22 2003: First chemo (Day after Thanksgiving, 2001) Arrived @ hosp 6 a.m. Checked into patient room. Bone marrow biopsy. Chemo Treatment- C.H.O.P. & Retuxan. Infusion rate set very slow to monitor for reactions. Only problem was a feverish feeling - which caused nurses to slow the drip even more. Had all meals in bed. Discharged to home at approx. midnite. Next day felt pretty good - no nausea or anything. Thought "this is going to be a piece of cake." (Hah!) Only 5 more tx left to go (@ 3 wk intervals). #48 Military Insanity(senna) on Tue Aug 26 22:30:05 2003: Reading bills may be a hassle, but getting billed for things you aren't liable for is worse. Trust me, I've seen it. You don't have to check them all line by line, but make sure you know what they're billing you for. My mother describes herself as the only person who has ever kissed the floor of the U of M hospital, thankful to finally be back with her husband. Apparently, the hospital they used in Miami was somewhat unimpressive--be thankful you live in Washtenaw County, one of the best places to get sick in the United States. Well, thankfullness is probably not on your short list, but hang in there. #49 Joe(gelinas) on Tue Aug 26 22:47:44 2003: (I am impressed; klg got a new login for this item. Good job!) #50 Sindi Keesan(keesan) on Tue Aug 26 23:55:40 2003: typing with one hand. transfusion until 430 this am. just started chemo feel okay, they promised i can sleep 1-430 5 to 8, i am losing my vocabulary. ct scan, xrays, muga scan of herat. ct contrast solution iis banana or berry. i passed. bone marrow no wose than fluid drainage and done in daytime. klg how long is a cycle how many cycles they only told me abourt today. have not washed hair for a month may not bother now. got a piccone less iv. one each arm how to sleep? feeling much stronger can breathe. jim is eating lots of hot sauce and sugar for me. the will try two weight gain milkshakes one from gfs. if i wre not taken away whenever supper arrived i woud eat more. sleep blessed sleep. #51 Dan Cross(cross) on Wed Aug 27 15:28:57 2003: My understanding, from when my uncle was receiving chemo, is that each cycle lasts about two weeks. They keep giving you chemo until the cancer goes into remission, or until they try some other sort of treatment (such as a bone-marrow transplant, which also involves some chemo). Generally, I believe that chemo is sort of a `cocktail' approach. That is, they give you multiple drugs. The cancer eventually stops responding to one, so they switch to the next. Eventually, they get back to the first and the cycle repeats (by the time they get back to the first, it presumably starts working again). Keep your spirits up, Sindi. Don't get Jim hog all your sugar! :-) #52 Military Insanity(senna) on Wed Aug 27 16:36:41 2003: Depends on what chemo you're on, Sindi. My dad started on chemos that were every three weeks. At one point he had an arrangement where he was on two different three-week cycles, meaning he was in two weeks to receive different chemos and not in one week for every cycle. As he progressed through chemos (My dad never repeated a chemo he stopped using, Dan, and it was never considered, so I think they didn't want to try an old one again). Later, he switched to a chemo that he took every week, and there were one or two that he actually took by pill. That was further along, though, and you will hopefully never have to deal with that. Who's your primary oncologist? #53 Sindi Keesan(keesan) on Wed Aug 27 20:43:41 2003: Krizanowski? I don't ask what they are doing. I am trying every spare moment to get some sleep. Got 3 hours at night and twice 1/2 today. Summary of recent events. I am very busy here. Supper came at 5:30 and they said I had to change rooms by 6:30 last night Jim packed up supper. I had a PICC catheter put it (little plastic thing to take blood etc in and out of) and then at 9:30 I ate two bites of supper and was taken to X-ray to be sure it went in right. From 10 to 11 pm I could eat supper than they did chemo until 2 pm while Jim kept me company. I stayed awake to be sure no reactions to 3 chemicals. Went well. At 2 pm they said I needed 2 units more transfusion which went from 3 am to 7 am. I managed to sleep a bit. They woke me every four hours for taking pressure and oxygen and temperature. The medical student woke me at 7:30 along with breakfast. Oxygen too low, put on a mask The new nurse gave me the mask and went away. I buzzed. No idea how to put it on and no air through it. The old nurse put it on. I begged for an hour of sleep and every half hour someone came to wake me up. Social worker, floor cleaner, snack. I had a do not disturb sign on the door. At 1:20 the med student told me I need more fluid off the lungs. I begged for an hour of sleep first. At 2:10 the new nurse (incompetent) woke me up to look at my tongue and tell me they wanted to clean my room (do not disturb?). At 3:30 they taught the med student how to drain fluid from lungs. No fun. I have given up trying to sleep. There is a loudspeaker/monitor 2 feet from my head calling for Melissa to come to the desk that they can't turn off. Every four hours vital signs. Every 6 ours wake me up for a pain pill. I am trying to get them to coordinate a bit. Both should be here right now at 8 after which I need to learn to sleep on my back, IVs in both arms now. I can brush my teeth by holding my arm stiff and moving my neck. I will shoot anyone other than the vital signs person or pain pill person who come in here before 7:30 am and after 8:30 pm. Four of five nights with 2-3 hours sleep. I am calling my elbows ankles. Jim brought the 286 plasma screen lunchbox computer with normal keyboard but I need to pound on the keys. They are hoping the chemo will stop the fluid before they need to take more out. Someone came to draw blood from needles. The head nurse had just left after doing it from the PICC. This has happened 3 times now. I am defensive. Just now another one tried. The latest nurse says I need an X-ray tonight. They can wake me up (last time was 1:30 am). Nobody keeps promises. Hospital food - I asked for two pieces of whole wheat toast and cheddar cheese for lunch. Got something from Texas that is coffee colored, with American cheese, artificial butter, and a list of chemicals about 50 long which Jim ate. I am ordering extra shredded wheat and bananas and lots of mashed potatoes and vegetables. Hospital vegetarian food entrees are all inedible in my current experience except the non-hot soup. The bean soup was barely beany but lots of meat. Jim found ice cream in the patient lounge, and a patient at the computer. I can breathe much better now with all that blood but they keep taking some out 2-3 times a day to analyze. The chemo - 2 hours of cytoxin and then two shorter things. Until 2. Transfusion 3 until 7. Wakeup at 7:30. I never thought I would sleep through a transfusion. Jim got home 3:30 and got woken at 9 by our doctor friend who asked if he woke him. I left him alone until 2:30 then asked him to hold my hald through the half hour of fluid removal. I have no hope of sleeping here in the daytime so I force fed myself supper/lunch and it is 8:15 and they promised to only wake me at midnight and 4 am and 7:30 am and I could get as much as 8 hours sleep if I can learn to sleep on my back. Minus the X-ray and maybe another transfusion. #54 S. Lynne Fremont(slynne) on Wed Aug 27 23:45:55 2003: oooh. that sounds miserable :( I hope you get to go home to some peace and quiet soon #55 John Ellis Perry Jr.(jep) on Thu Aug 28 00:33:00 2003: It doesn't sound like boredom and loneliness are your biggest concerns right now. (-: I would guess you really, really don't want visitors other than Jim. I've gone 4-5 nights with 2-3 hours of sleep before, and it was miserable, in and of itself. I haven't spent a night in the hospital since I was 6, except when my son was born. The combination sounds dismal. I hope you are getting your 8 hours tonight! Best wishes, Sindi. Do you have enough meanness to enjoy the distress you're causing to the kitchen? (I do.) #56 Todd(tod) on Thu Aug 28 09:31:28 2003: #57 cs(oval) on Thu Aug 28 10:54:08 2003: can't one of you guys drop her off some decent grub? geez. #58 Dan Cross(cross) on Thu Aug 28 11:34:45 2003: The unfortunate thing is that the hospital might not allow that. I imagine there's a good reason Jim hasn't brought in some outside food. Sindi, do you know what their policy on that is? Maybe Jim could bring you something, if they don't forbid it? #59 cs(oval) on Thu Aug 28 11:59:43 2003: strange .. #60 Todd(tod) on Thu Aug 28 12:26:29 2003: #61 Sindi Keesan(keesan) on Thu Aug 28 20:32:52 2003: Hello, this is Carliss who came to take blood pressure, temperature and oxygen saturation and she has worked here 16 years and I love her even every four hours in the middleof the night. She calls me sweetheart. #62 Sindi Keesan(keesan) on Thu Aug 28 21:20:38 2003: This time it's Sindi. A very uneventful day except for the thrush all over my mouth. They ordered Nystatin to swish around for 2 min then swallow. Thrush is a fungal disease caused by the chemo messing up my normal defenses. Someone is one putting three little bags of potassium into my IV because the levels are down for some reason. I am working on eating supper - a bit at a time as the tumor does not leave much room to eat into, or maybe it is the fluid. My feet at still edemic Lasic (diuretic) at noon and four pm and I think the potassium came out the and needs to go back. ` Long gap when I had to get up to have the nurse listen to my heart and lungs which meant moving the table and computer as the cord is too short, so I could get out of bed. The only chair I can sit on to grex which is low enougy for my feet to hit the floor (edema requires this) is the 'commode' which I have to use since my IV cord (for rehydration) won't reach the lovely private bathroom which I am paying for and have not seen the inside of because I would have to call the nurse to unplug the cord and put me on battery. I will wash my hair at the sink in the room. I have two plastic tubes - the IV and the oxygen (little progns that go in my nose) which help in addition to two removals of lung fluid. From what I am writing it sounds like I should not have survived to this point but it is at present more of a nuisance to be tethered to all these tubes. Can't quite make it to the room door. I am supposed to be walking around to reduce the edema - it is a very short walking pattern. The food is under control. Jim keeps bringing me yogurt pudding (which I never normally eat). They said they could find me full-fat unsugared stuff here (but probably not unpuddinged) to try to put on my vegetables. Protein - full-fat milk (not on the menu), hard boiled egg breakfast, cheddar cheese slice and two breads lunch, cheese omelet supper. All the other milk products are low-fat high-sugar including some weight gain stuff - imaging maing weight gain products by using skim milk? They will find me some real ice cream instead of 'frozen yogurt'. I showed the doctors and row of med students that I found one more non-low-fat food - hard boiled egg. The rest is plenty of really nice fresh vegetables. Jim brought peanut butter. I am supposed to keep my teeth very clean. The IV in my right arm (unused since the first transfusion Sunday) is preventing me from bending my elbow. I am eating left-handed (put it in the spoon with my right hand, move to left hand) and spilling all over a towel. Taking drugs left-handed - put the drug in the mouth, transfer cup from right to left hand. Brushing teeth left handed (slowly but surely). Flossing takes two hands and isa challenge. I am forced to sleep on my back by having an IV in one arm and tubes in the others. Amazing how much inconvenience once IV can cause. They were not supposed to stick it in the crook of my arm. The head nurse here says he will be back Sat. and the unused IV comes out then (after one week) doctor's orders or not. I never sleep on my back but have no choice now and have had a backache since I had to. I hope people are finding this detail interesting - I would never have known what hospital life is like and what the minor nuisance details can be after you get the more painful stuff over with. We are meeting all sorts of people. The guy who swept the floor (parents from Haiti, grew up in NYC) says they will pay most of his tuition at the local comunity college. He wants a GED and to learn carpentry. The guy who empties the wastebaskets says U of M will pay for a GED but the degree needs to be medically related. Then there are people who deliver lunch, who deliver snacks, who remove trays. Nurses, techs, three shifts. The team to take 'vitals' every four hours also do bedpans (as least Carliss does, cheerily). They are putting in fluids and have to measure whatever comes out so I sit on this little graduated device with sharp edges). Twice today they gave a diuretic which meant a lot of sitting. Not sure what they are going to do with all the milliliter measurements but hospitals like to keep good records. Jim brought me a bill this morning from St. Joe's for a test that was done at U of M. St. Joe's said to call the doctor, it was not their fault. Doctor's office said they had nothing to do with submitting the bill with their name on it (from the general exam) an refused to talk to me or the hospital. I actually started to yell at the accountant there, who obviously goofed. I carried the specimen personally to U of M and then the the doctor had St. Joe's billme. I called St. Joe's and got someone else who said the first person was entirely wrong but kept no record of her haveing received my call and promised to put a team on itto figure out what had happened. Never again do I go to the doctor who did the general exam (and sat on the lab results for three weeks because he was busy with other things - I could have been in here three weeks sooner feeling a lot better to start with). I am starting to understand that there are indeed billing problems. Twice now U of M has billed the insurance company directly instead of PPOM. First time I called to correct this. I will let the three of them battle it out without me. I pay when they get it straight. I already paid the doctor. Six times people have come by to stick needles in my skin to draw blood after this is no longer done. One came at 6:45 am. No way to stop them but I can chase them away. Tomorrow or later I find out if I have Epstein Barr, hepapitis or 5 other viruses (I forget why but they are checking for viruses - maybe just in general). Liver function? Sort of vague. The thrush feels a bit less fuzzy. Artificial berry- banana flavor with lots of artificial dies. I feel very chemical. They are letting me take my own vitamins. Kelloggs shredded wheat (nothing refined) decided to add 10 vitamins and minerals. I agreed to a 4 oz choc or van 'milkshake' which is low-fat milk with five kinds of sugar and more vitamins and 200 calories (4 oz milk is only 75). Never heard of fortifying whole wheat before. The meat entries are beef stroganoff, salmon patties, beef chop suey, spicy shrimp creole, etc. A bit more variety than my bread and cheese and omelet. I wish they had left the hot peppers out of the veg entrees some of which look pretty good. Friday I might try the special 'baked potato' for vegetarians. I can put low-fat cream cheese on it or maybe wangle a piece of cheddar. There is a rumor of swiss cheese existing. Someone told Jim they had a whole bag and a half of whole wheat bread. Not any more. The dietitians come and talk to me sometimes for amusement. Enough for now and I am going to sleep. #63 Bane(polytarp) on Thu Aug 28 22:02:24 2003: The response before this is too scary to do more than read to a scan. And this one too: Two responses before this one, one before this one. #64 John Ellis Perry Jr.(jep) on Thu Aug 28 22:39:08 2003: You sounded a lot more chipper Thursday when I read your update than you did on Wednesday late evening when I read those updates. I'm glad and I hope it means you're feeling much better. Yesterday it sounded like you weren't coming out of the hospital. Today it sounds like you're going to rip through your chemo and be back home in a couple of days. I haven't got a clue which impression might be accurate but I am certainly cheering you on. John III knows you're sick, says he's worried about you, and wishes you the best. #65 Joseph M Saul(jmsaul) on Thu Aug 28 23:14:14 2003: Need some cheddar cheese? I can drop it off. #66 Dan Cross(cross) on Thu Aug 28 23:57:39 2003: Regarding #59; Well, I imagine that they're concerned that people less knowledgable about food than Sindi and Jim might bring something that could have an adverse interaction with some medicine, or otherwise might cause a complication, so they made a blanket rule. In the case of Sindi and Jim, who are smart about this stuff to begin with, and who would further ask if they weren't sure, it certainly does seem strange and kind of stupid. I'm reminded of when I had my tonsils out. One of the prerequisites for removal of my IV was that I drink a can of Shasta soda (presumably, this is because they wanted to see if I was going to get sick from the anesthetic before they took out the IV). Leaving aside the fact that my throat hurt pretty bad, Shasta soda is one of the nastiest substances on the planet. I begged and pleaded for them to let me drink a can of, say, Sprite, Coke, 7-Up, RC Cola, or any of a number of other substances instead of the Shasta, but was denied. After a couple of hours, they began to get `concerned' that I hadn't finished the Shasta soda. I gently informed them that, if it were anything else, I would have finished it in a few minutes. But since it was Shasta soda, it was just going to take some time until I worked up the gastro-intestinal fortitude to chug down the remainder (the nurse on duty at the time wasn't too amused. I told her that neither was I). Anyway, either the nurses were just sadistic, or there was a good reason why they were making me drink Shasta and not something else, such as that they knew exactly what was in it and how one was likely to react to it and whatever drugs they have given you. Regarding #61; Hi Carliss. Be good to our Sindi and don't forget to let her get some sleep, too! :-) Regarding #62; Sounds like a grueling day, Sindi, but you seem to be holding up really well. I admire your fortitude in the face of both unpleasent circumstances and unpleasent conditions. Mentioning that you're having to sleep on your back reminds me of when I broke my collar bone and had to learn (the hard way, and fast) not to roll over onto my left shoulder in my sleep. You'll get used to it soon, even though it isn't that fun. Hang in there. It's great to get these status updates. #67 Sindi Keesan(keesan) on Fri Aug 29 12:34:37 2003: Continued - my feet to hit the ground is the commode. The surface is a bit hard so I put a pillow on it. This confuses people who come to empty it. I am much much better. This morning I told the doctor with the every-lengthening train of medical students on early rounds that the IV in my right arm was preventing me from sleeping (I had to lie on my back), eating (I am a righty and had to eat left-handed with a spoon spilling food all over myself), brushing my teeth, etc., so after keeping it for no good reason for a week they just took it out. I could not bend my right arm until now - it is a joy having a right arm again. I have clean teeth and will shower and I ate twice as fast and will be able to sleep. The other good news is the midnight shift person who takes blood pressure has decreed it has to be done manually (stethoscope) instead of with a murderous machine that cranks it up to about 160 systolic which nearly broke my wrist and usually got impossible readings (100/90). My normal and current pressure is 108/65. I used to scream when the machine took my pressure. To prove her point, she took machine pressure (140/90) and then took manual pressure twice (110/70 and something similar). So I am forcing everyone else to do it manually. They take pressure every 4 hours. I am being allowed to sleep 4 hours at a time. I have begged people for a week to take pressure manually. Clarisse to the rescue - she has been doing this 16 years. I cite her as an authority. She also tied the smallest cuff and a bulb to my bed because thereisa shortage of them and they keep disappearing. Today again they are injecting a diuretic - up every ten minutes for an hour or three. Anyway, these were my worst problems. I tested negative for 10 or so viruses, no bone marrow involvement,I am breathing well, eating well. Jim is trying to make me eat yogurt pudding. He brought in a full-fat model. At 11 they came in telling me I cannot eat for 6 hours before 3 pm. I was eating breakfast (too many interruptions) so they rescheduled for 4. I have this cute little bottle of banana flavored Nystatin oral to combat thrush which I willhave for quite a while. My tongue feels like fur. Lumch just landed and is going to the refrigerator. I found a curtain that I can pull between me and the door. Every time I sit on the commode someone knocks and comes in the door without waiting. Respiratory therapy just added humidity to my oxygen. Nice. I have five hours to wrap up with saran wrap and try to shower with a hose and then I can turn my pump to battery, hook up an oygen tank, and go for a hike to the patient lounge to help with the edema. I have never felt quite so connected to my surroundings before. bp 122/60, oxygen 94 (97 isnormal) temp 98.1 No more pain pills - only thing that hurts is a wad of cotton that leftto catch blood a few days ago thatthe piccnurse has to remove. The liver ultrasound is because my liver blood test values went mysteriously up, but they cameback mysteriously down. This is all an art. They do blood tests every day and adjust things. Nomore allopurinol or potassium. Only drugs are 2xprednisone (awful taste is blocked by my fuzzy thrush) and my own vitamins and prilosec. Life is easy. The plastic mattress is sticky. I presume I am over my deductible so when they mess up the billing only the insurance company will case. Jim will take photos around here. I may try connecting via telnet in the patient lounge - Jim got it working. A friend who works here stopped by last night to visit. I am on a special immune-suppressent floor with all private rooms. No flowers allowed except via email. I don't have to eat for five hours. I am tired of trying to get fatter on low-fat food. Supper will be special - a baked potato with imitation probably low-fat cheese (they suggested I get iton the side so I don'tneed to eat it). Somewhere in the hospital there must be someone else who does not want to substitute sugar for fat in their diet. They ran out of whole wheat bread but gotanother loaf. #68 Todd(tod) on Fri Aug 29 13:44:33 2003: #69 Grace Lovelace(gracel) on Fri Aug 29 15:03:00 2003: When I was in the hospital overnight after wrist-fracture-repairing surgery, each person taking vital signs was followed shortly by somebody else taking my blood pressure, and often by somebody else taking it again. It's normally about 100/60 and the anesthetic (or shock, or pain pills, or who knows what) apparently depressed it further, and they didn't believe the first reading. Ever. I was allowed to use the bathroom in the room, but not to get out of bed and walk over to it by myself, because they were afraid that with such low blood pressure I would get dizzy and fall. #70 S. Lynne Fremont(slynne) on Fri Aug 29 15:55:07 2003: I am glad to hear you are feeling better. I do appreciate all the detail of your posts. People dont usually talk about their hospital stays that much. It is very interesting. #71 Scott Helmke(scott) on Fri Aug 29 19:45:07 2003: Ditto on the "glad to hear things are getting better" front, Sindi. Have Jim bring in a fine-point Sharpie, and write "no needles directly in the skin" on your arms. While you're at it, also write "blood pressure only with manual cuff". :) #72 Sindi Keesan(keesan) on Fri Aug 29 20:16:27 2003: We wrote a sign that worked on the door this morning - something about needingto draw blood only from the picc - it worked. There are dozens of plugs here - Jim got hislongest cord with a bad end that kept pullingout but he fixed it now. There are special plug-in things that wrap around your calf and are set to squeee the calf to movethe blood. They hurt as bad as the machine that takes blood pressure. After ten minutes of torture and calling nurses to takethem off I removed them myself. The reason I cannot use the bathroom isthat I have an oxygen tube thing loosely attached to my nose, which I could reattach to an oxygen tank instead of the wall but why bother, and the device that rehydrates me through a tube in my arm can also be unplugged and run on battery and replugged, but why bother. We just unplugged me from it andthe oxygen for the shower. Today I finished breakfast at 11 - there were blood draws and morning rounds and stuff in the middle along with vital signs. The med student came to tellme not to eat after 10 (am) because of a liver ultrasound at 3. They changed it to 4 and I got to skip lunch. I watched her take lots of photos (in color) and maybe audio recordings of veins and arteries that sounded like whale calls. Arteries are louder. You could also see them as electric waves. All mine are running in the right direction. My liver enzymes wentto high but wentdown partway again. Lots of mysteries. I can still breathe and I have a pulse. Got back to lunch-supper and discovered it was really a blood drawing party. At 7 I packed up the remains for breakfast tomorrow. They are trying to make me drink a 200 calorie 'milkshake' (4 oz) daily based on heavy sugar syrup with skim milk added. I am going to refuse. My doctor friend stopped by to watch me eat vegetables for a while. Jim is falling asleep. Me too but they are going to wake me at 8 (it is 8:10)for vital signs so we are waiting. I dream of going somewhere that I can sleep without vital signs, on my side, no sugar anything, no tubes, nobody with needles in the morning. #73 Maxin' and Relaxin' in the Pacific NW(jaklumen) on Sat Aug 30 03:05:50 2003: Refuse? I thought you needed to gain weight. What, so sugar tastes nasty to you? #74 Sindi Keesan(keesan) on Sat Aug 30 11:27:42 2003: I do not willingly eat refined sugar. I think it is crazy that the only things offered to eat in this hospital are all reduced-fat, skim-milk, etc. The weight gain 'milkshake' is heavy sugar syrup with skim milk and artificial flavor added. Today is a day of rest, apparently. No doctor on rounds. I got to eat breakfast with only a few interruptions for blood pressure etc. I am getting a backache from the mush mattress and can't sit formore than a few minutes. They will let me go home when my oxygen levels are okay. Soon? Not on the menu but available are whole milk and ice cream and one slice of cheddar cheese per day. They don't want people to know. I was not allowed to eat lunch yesterday due to the ultrasound. Came back from the test to a multiply interrupted supper. Got so tired we just refrigerated lunch-supper and they cleaned the refrigerator this morning so I am not gaining a whole lot of weight. Can't do it all right at once. We have applesand peanut butter. #75 Sindi Keesan(keesan) on Sat Aug 30 12:49:16 2003: At 11:30 the doctor came on rounds with only three people in tow. I will have another 5-7 cycles at 3-week intervals, outpatient. Don't need to take any more prednisone or prilosec. They will takeme off the fluids iv. Only need to do oxygen and I can drag a tank around and go for a walk to try to reduce the edema in feet ankles and legs. The fluid around the lungs is not returning fast enough to be any problem. They turned the oxygen down from 5 to 3.5. They keep measuring my weight which is sort of random as it is whatever fluids they put in and took out. Lots of spinach for lunch, cauliflower, potato, milk. I asked if they could add a piece of cheese and a boiled egg. Maybe in an hour or two. #76 Todd(tod) on Sat Aug 30 16:07:37 2003: #77 Joseph M Saul(jmsaul) on Sat Aug 30 16:37:05 2003: They've certainly got fatty vegetarian foods down in the cafeteria. Deep-fried mushrooms and stuff. #78 Maxin' and Relaxin' in the Pacific NW(jaklumen) on Sat Aug 30 16:54:18 2003: resp:74 If my eating plan continues to be a success (and low-carb diets are right), then refined sugars really do pack on the pounds. I'm a little bit leery of Dr. Atkin's notion that fat doesn't contribute to weight so much, so I try to avoid it somewhat-- although lots of reduced fat products pile on the sugar, supposedly to make up for the taste. What about other carbs? Pasta? You did mention the potato. Yeah, Tod mentioned pancakes. Maybe pancakes could be good. I hope all is well and this is over soon. This can't have been much fun. #79 John Ellis Perry Jr.(jep) on Sat Aug 30 22:45:28 2003: Jim took a picture of Sindi typing on her portable computer, and Sindi asked me to post it. It can be viewed at: http://jep.tonster.com/photoalbum/friends/umhosp The thumbnail is rather unclear; the picture itself is better if you click on the thumbnail. #80 Dan Cross(cross) on Sun Aug 31 00:15:23 2003: Hmm, unfortunately, one can't see too much of Sindi other than the top of her head. :-( #81 Snorri Sturluson(md) on Sun Aug 31 09:39:11 2003: Sindi, I have mixed feelings about all this. I admire your steadfastness. If you think you're driving the help nuts, you should know that a study of hospital and convalescent home patients found that, all other things being equal, the patients who complain the most and are the most demanding are the ones who make the best recovery and go on to live the longest lives thereafter. At the same time, I can't help but wish that you'd just drink those damn 200-cal shakes until they find you something better. You don't want to be a martyr, I hope. (If I were your doctor, I'd tell the nurses to use one of those funnels-with-the-hand-crank devices they feed Strasbourg geese with, so be glad I'm not your doctor.) But really I just want to see you get well and I'd love to see you do it your way. "The philosopher is in advance of his age even in the outward form of his life. He is not fed, sheltered, clothed, warmed, like his contemporaries." #82 Todd(tod) on Sun Aug 31 10:37:49 2003: #83 Leeron Kopelman(lk) on Sun Aug 31 13:08:09 2003: Certainly in the short-term it is better to eat bad food than no food. But the good news seems to be that soon you will be eating food coming out of your own kitchen! #84 Dan Cross(cross) on Sun Aug 31 13:17:13 2003: Indeed. In lieu of sugars, which I don't think are very fattening anyway, you could just stuff yourself on potatoes, and bread, which are very fattening. If you can get your hands on some pasta, that would also help. (Pasta is just carbs, which unless you're exercising a bunch, become fat). But realize that md isn't trying to be rude, but is saying this out of concern. Naturally, we all want to see you get better. (If for no other reason than we want to continue jabbing you for not using a mouse for some time to come! :-)) #85 S. Lynne Fremont(slynne) on Sun Aug 31 14:26:06 2003: sugar is just carbs too #86 Dan Cross(cross) on Sun Aug 31 16:52:04 2003: Yeah, but refined sugars are like low-octane gas; they don't burn as cleanly. #87 Snorri Sturluson(md) on Sun Aug 31 17:37:30 2003: I always read that refined sugar is more like high-octane gas. Empty calories, pure energy that turns to Elmer's Glue-All in your arteries if you don't use it. (That applies to glucose in any form, from refined or unefined sources, but I don't want to get into that argument here.) I'm not sure someone in Sindi's condition should be downing the stuff in one gulp. But finishing it in sips over an hour or so could supply the energy her body's been forced to steal from her egg and cheese snacks. Think of it as another kind of medicine -- something you need that you wouldn't consume in any other circumstances. #88 Maxin' and Relaxin' in the Pacific NW(jaklumen) on Sun Aug 31 18:47:22 2003: resp:84 well, that's 2 for the pasta. resp:79 thanks for the pic. #89 Rane Curl(rcurl) on Sun Aug 31 20:51:57 2003: "Sugar" usually means sucrose, whether "refined" or not. It would help if this were discussed in more precise terms. "Refined sugar" is nearly meaningless. The sugar sucrose is a disaccharide of glucose and fructose although it must be partly digested to release those monosaccharides. If it isn't fully "refined" it is still sucrose, but with other substances attached. These include compounds in raw sugar such as lactosucrose, xylose, other polysaccharides, plus "colorants", which are a mess of high molecular colored compounds of uncertain composition. The latter color molasses. I'm not sure of the nutritional role of these various impurities. #90 Sindi Keesan(keesan) on Sun Aug 31 22:07:40 2003: The stuff they wanted me to drink is the usual mixture of corn syrup and other junk. Jim conked out today (needed sleep) so I have not had the computer set up. It is too heavy for me to manage as I am very weak. I think I will just have him bring me food. The hospital diet is very different from ours - about 1 / 10 the bulk. He will bring whole grains and beans and real salads. Salad today was two slices of tomato, ours being three tomatoes and a few cucumbers. Potatoes and carrots and a cupof milk is no way to gain weight either. Today they mostly left me alone, after first waking me upto draw blood last night half an hour after I fell asleep. The order came in at 9:20 but the nurse was busy until 10:30. The usual blood presure every four hours. The very nice woman who takes it is not a union member so she is working 84 hours this week and got 3 hours sleep between shifts. Another person is working 80 hours to pay off eBay She is into cameras. I don't know much about the people who bring and collect trays and wastebaskets as their English is not usually so good. Typical day. 7 am. I get woken up to draw blood and ask for five minutes to myself first. Substitute med student at 7:30. Breakfast tray. Take some pills at 8. Take some different pills at 9. They want me to go for a walk to see if my oxygen levels are steady. I bed off until lunch. Jim goes home and sleeps the sleep of the exhausted. I fall asleep during lunch because they gave me a diuretic just before bedtime and I was up half the night. They wake me up and make me walk - keep your eyes open. Finally they let me sleep for an hour, after which nobody has bothered me all day for anything. I even looked at the television. Jim is here now. Four times a day I apply Nystatin oral which really hurts my teeth - after every meal. Swish two minutes, swallow, then try to rinse out all that sugar. Is the sugar (33% sucrose) a preservative or dothey think people will like it. Banana flavor, as was the barium contrast solution. Brushing my teeth and doing the banana stuff uses up all my energy (as does eating half a meal - I decided to not bother with the rest of supper and had ice cream later instead). They say maybe I need more hemoglobin (transfusion). Maybe tomorrow I will have more energy. I am flat on my back typing, can't see the keyboard but at least it is not laptop. 286 lunchbox. A friend offered a lock for it. I will have 6-8 cycles every 3 weeks. A friend who works here as a clerk had both parents die of leukemia and he said the first week you feel worst, then you feel better for a couple of weeks. I feel okay except for the thrush and the utter exhaustion but I really need to gain 20 pounds (NOT sugar water). Jim will bring me real food. He brought peanut butter to put on the woody apples and has finished it already. He eats what I can't. Walking garbage can. He cold not stand the artificially flavored sugar water either. I should be asleep now. People tell me the weather is nice. Also that if I can be mobile I can maybe get a meal ticket to the cafeteria instead of potatoes and carrots and milk for every meal. Drag the oxygen tank along. Zzzzzzz. #91 John Ellis Perry Jr.(jep) on Sun Aug 31 22:31:17 2003: John III thinks you ought to eat, Sindi. I'm sure he knows all about being told to eat things you don't like; he's a kid, and that's part of the experience of being young. He said, "You need to eat when you're not feeling well." I told him I'd pass that on. I showed him the picture Jim sent to me to have posted on the WWW page. He was glad you have something to do. I censor the heck out of what I tell him. You're sick, they're taking care of you, you're getting better, and Jim is there to help you. He and I both wish you well. Of all the people I know save one, I would have thought *you'd* have the easiest time getting along with those who don't speak English! Heh. #92 klg(klg) on Sun Aug 31 23:23:18 2003: re: "I will have 6-8 cycles every 3 weeks. A friend who works here as a clerk had both parents die of leukemia and he said the first week you feel worst, then you feel better for a couple of weeks." Had a tot. of 6 tx. of chemo. (C.H.O.P. + Retuxan) 3 wks apart. Took 2+ wks to feel "better" (comparatively), esp. toward the end. Dr. said could have been up to 8 tx, but that's about all they wd do because of toxicity. Tx cd be delayed if physical evaluation/lab results not good. To boost generation of blood cells, had to inject self with Neupogen - 3x/cycle @ $400 a crack. Made pelvis and long bones ache. Followed by radiation: 5x/wk - Apr. thru 1st wk of May. Not bad at all, compared to chemo, but wouldn't recommend it for fun. Watch for mental effects of chemo. Felt like was 2 steps behind in coversations. Forgetful. Ability to focus impared. (Totaled a car 4 mos after chemo ended - due to lingering effects???) For cancer patients & caregivers: Welcome to Curetoday.com ... FREE subscription xxxx. Back Issues Check out our back issues online xxx. Write for CURE See how you can get your story published. www.curetoday.com/ - 20k - Aug 30, 2003 Suggestions: Positive mental outlook. Focus on the big picture. Don't complain; be as cheerful as possible. Take life as it comes, a day at a time. Pray. #93 Steve Gibbard(scg) on Mon Sep 1 03:20:15 2003: I don't know what Sindi's experience with refined sugar is, but I've found in the last few years that it makes me feel awful. In addition, since it's a source of quick non-lasting energy, it tends to make me hungry again very quickly. I can eat a meal without much sugar and be happy for hours, or I can eat the same meal, followed by a few cookies, and be starving an hour later. Generally, unless I'm biking or something like that that is actively burning lots of calories right at the time, I'm much happier avoiding it. That said, eating sugar, assuming a constant supply of it, certainly appears to me to be a good way of gaining weight. Those of you who knew me several years ago may remember that I used to drink root beer pretty constantly. When I stopped drinking soft drinks, I lost more than 60 pounds in five or six months. I assume the wsame would be possible in reverse. #94 S. Lynne Fremont(slynne) on Mon Sep 1 09:37:37 2003: Sugar makes me feel awful too. But not before making me feel REALLY good for a little while. I think it is addictive. It also is very good for gaining weight but I can appreciate that Sindi doesnt like it. If I were to ever kick my sugar habit, I would be really pissed if I went to a hospital and they offered me things with a lot of sugar. It would be like getting out a morphine drip for an ex heroin junkie. #95 cs(oval) on Mon Sep 1 10:41:57 2003: i also don't like sugar too much. it makes me feel crap too. this and being mostly vegetarian also make it hard for me to gain weight. french fries and pizza are a favorite fatty foods, as well as pasta with rich creamy sauces. #96 bruce allen price(bru) on Mon Sep 1 19:33:36 2003: Drink the damned sugar, eat the damned food, and get the hell better! Then you can concentrate on breaking the damned habits all over again. Tell him to quit eating your lunches and bring his own. I am sure the nurses and doctors are trying to evaluate your intake of food and the weight you gain. He may be throwing it off by eating your food. #97 Sindi Keesan(keesan) on Mon Sep 1 20:28:28 2003: Jim did not eat my lunches, he ate what I could not eat. They walked me around in a circle yesterday, did it again today without oxygen tubes in my nose. The IV rehydration drip disappeared a couple of days ago. Today I could actually leave the room. (Also use the bathroom instead of the 'commode' - every time I sat on it someone was sure to come collect a breakfast tray). I did a good job walking in circles without oxygen. I am stabilized. The only awful things they did to me today (other than wake me up to discharge me) were to draw blood while I was trying to sleep at 7 am, and then shine lights in my eyes at 7:30 and ask how I felt (I felt like I was trying to sleep). I have to take a few pills, eat a lot, and try to exercise (meaning walk more than 5 feet, sit up more - I have to lie down frequently) and I have two weeks until the next chemo. Total of 6-8 every 3 weeks. I will feel better during the last two weeks of each 3 week cycle. I will feel less knocked out each cycle, with luck. The digestive problems will go away soon I hope. I am eating Jim's home cooking. No low-fat anything. Stewed zucchini and real cream cheese on whole-grain rye crackers. I will try to eat ice cream. He got me the most fatty he could find. I am home (by the way). I am about to fall off the chair. Good night. #98 John Ellis Perry Jr.(jep) on Mon Sep 1 20:35:16 2003: Congratulations, Sindi! It's great to hear you're out of the hospital! #99 S. Lynne Fremont(slynne) on Mon Sep 1 22:25:12 2003: I am glad you are home #100 Maxin' and Relaxin' in the Pacific NW(jaklumen) on Mon Sep 1 22:41:23 2003: Yeah, that is good news. I'm sure it feels good to be in your own bed and in more familiar surroundings. #101 Dan Cross(cross) on Mon Sep 1 23:18:01 2003: Hooray! I'm glad to hear you're out of the hospital, Sindi! #102 Leeron Kopelman(lk) on Tue Sep 2 01:58:58 2003: Home sweet home cooking. Yay! #103 David Hoffman(dah) on Tue Sep 2 02:10:22 2003: lk is a fag. #104 Todd(tod) on Tue Sep 2 12:25:49 2003: #105 Sindi Keesan(keesan) on Tue Sep 2 17:13:41 2003: Jim is vegan and does not eat ice cream. He had ball at Kroger's choosing ice creams' for their calorie content. Breyer's French Vanilla - on sale for $3/half gallon right now. Jim is keeping track of my calorie intake. I am not allowed to eat anything until he measures and calculates it. Half cup Breyer's is 80 calories. Half cup milk is 75. He added black walnuts from our tree -60 calories per ounce. Breakfast - 1.5 tsp black walnuts 60 calories. Bless our tre. Oatmeal (the real stuff with husks that stick on your teeth, not the predigested 4 oz of the hospital): 1 cup cooked (1.5 oz dry) 160 calories. (Jim ate three cups of oatmeal). Two cups milk - 300 calories Banana (from the hospital, lots of sugar, 2 oz) - 50 calories Ice cream - 4 oz - 80 calories - on the ice cream 650 calories. How does this compare with hash browns and bacon? Cheerios from the hospital are only 2/3 oz dry weight - 60 calories Shredded wheat - whole 1 oz - 120 calories They are both whole grain. The refined stuff is required to put back the vitamins. They put additional vitamins in these, also in raisin bran (which is mostly sugar). They put oat bran in the cheerios. Same calories per ounce as oatmeal but the portions are miniscule. I gave up on hospital omelets - terribly salty and probably they left out the egg yolks to be healthy. Lunch was 'stone soup'. Yesterday's zucchini in tomato juice with additions for flavor (I can sort of taste through the thrush which will get better for two weeks I hope). Chinese sweet potato noodles, garlic. Olive oil one tbp is 120 calories! It goes in everything from now on. May try full-fat no-sugar no thickener yogurt in the next bowl of this for flavor. SOmeone I translate for is doing radiation for breast cancer. Someone else I translate for called this morning (I managed to sit up and talk for 10 minutes without falling over) wanted to let me know her experience with breast cancer. She had two mastectomies, radiation, and chemo, and has been fine since 1996. The first chemo is the worst - it makes you really tired. (I am tired for plenty of other reasons too). Second is not bad, the last ones hardly bother you at all. She does not remember thrush or diarrhea. She said she had surgery (I did not not) in October and was all done with treatments and back to work by February and has felt fine since. So all I have to do is force-feed, treat thrush four times a day, live with diarrhea, regain my muscle (my legs feel like someone else's) and try to forget that I have a tube in my arm with little green things dangling from it. I can bend the arm and sleep on it. Have to saran wrap and tape it to shower. I have room to eat a whole meal at a time now - the spleen tumor is disintegrating and making space. I have to take allopurinal (gout medicine) to help dispose of uric acid from the DNA breakdown this cycle. Maybe not the next cycle. And Prilosec to reduce stomach acid and vitamin pills. They wanted me to use their vitamin pills. I have my own. Theirs probably cost $5/each. The Nystatin for thrush comes in banana or cherry, depending on which artificial color and flavor you prefer. Mylanta simethicone for gas (from beans, bran or brocolli) comes in mint or cherry. The Nystatin is 33% sucrose and kills my teeth. You are supposed to leave it on as long as possibly. I do minutes and rinse off the sugar. The pharmacist said it would taste bad otherwise without sugar. The mylanta has dextrates, also sugar that hurts my teeth, and does not do anything for gas from chemotherapy. It did not claim to do so. Cherry candy anyone? Jim found a (broken?) stereo system at the curb that plays radio and has a remote control. I can lie on my back and change stations (there are two with classical music) or turn it louder or off. There are other choices (some for the presumably broken CD and tape deck). How would I use time, sleep, clock, disk direct play, edit/check, prgm, video/aux, MD (?) karaoke, vocal fader/multiplex, T-bass, GEQ, direction-preset (perhaps I can preset my two stations?0. There is also power. Turn it off and the lights keep dancing by themselves. Jim offered me a slide show of a bunch of slides Kiwanis was throwing out, of Europe (in the sixties?). I keep being grateful for small things, like no more hospital gown. They snap up the back with the snaps directly on your spine, no fun to lie on. I would unsnap the back and keep the room uncomfortably warm. I can warm. I can wear real clothing again and sleep under a sheet. My clothing fits me as if it were Jim's clothing. I need to sleep on the futon with the foam in it so I don't feel my ribs. Jim's house is full of chairs with level seats and back support, which let my feet touch the ground. I had the choice at the hospital of sitting on the edge of a high mushy bed (getting a back ache) or the commode with a pillow on top (still too high) so rarely sat at all and ended up lying on my back all the time and lost my back muscles too. I am forcing myself to sit as long as possible (helps to grex) with a pillow behind my lower back. A few more minutes every day. I hate being on my back. Hospitals are not good for the health. They expected you to be lying at max 45 degrees in bed to eat or read or anything instead of sitting. The CD-player is of course not working. We don't have CDs anyway but Jim' likes to fix things. Someone tried to send me flowers. Not allowed in the hemo-chemo ward as they can bring in germs. The 4 year old neighber sent me a drawing of flowers and butterflies and sun and rainbow and her name printed legibly. We build stick houses and things together and every week she has chosen a new career. She is very serious. I get blood drawn Friday (standard tests) and a consultation Sept. 15 and am free to eat and SLEEP the rest of the time until the next outpatient chemo infusion. The stuff is so toxic they put in a special plastic PICC line that goes into a large vein to diffuse it. Three chemicals - cytoxin 4 hours, vincoblastin and something else briefly. The nurses wear plastic aprons so it won't burn their skin if it splashes. I survived it, they tell me much better than average. Life will only get better. Jim may even get the tape player working. It works! Enough back muscle exercise. I may not have too much else to report for a while unless people want a running calorie count. 90 pounds and going up. The person who called and went through chemo said she gained 20 unwanted pounds and I should eat chicken soup - good for vegetarians. My taste and appetite are not affected except by the fuzz on my tongue - this loss of appetite business is either a myth or I am lucky. Not a bit of nausea. Before chemo they gave me a triangular pill to prevent nausea. I am terrible at swallowing pills - was lucky with the triangle. Stupid shape. Half of my pills stick halfway down and I start coughing. 5 pm - I am not interested in another 650 calories at the moment. This is going to be a real chore eating continuously . I have to clean/brush really thoroughly after eating so forget snacks. #106 Colleen McGee(cmcgee) on Tue Sep 2 18:05:45 2003: Haagen-Daz has the highest per oz calorie count of all the ice creams, and is one of the best in terms of sticking to a few basic ingredients. #107 David Hoffman(dah) on Tue Sep 2 18:19:58 2003: -60 calories?! #108 Todd(tod) on Tue Sep 2 18:58:07 2003: #109 David Hoffman(dah) on Tue Sep 2 20:21:18 2003: O< THAT"S H OW SHE GETS -60 calories! She's eating diohorrheeorrea inducers. #110 klg(klg) on Tue Sep 2 21:14:45 2003: 1. It seemed like the effects of chemo were cumulative. (Unlike grex, it does not get easier.) And the women being treated for breast ca generally appeared to be a lot healthier looking. 2. Did they not discuss inserting a "port" under the skin in your chest?? It's a plastic gizmo that hooks up to your veins. The needle for the chemo is inserted into the port and the medications flows right into the veins. Reduces the danger of vein damage. Am surprised you don't seem to know about it, esp. since you may have up to 8 cycles. Mine was put in after the first tx, so I had it for the next 5. Was glad it was there, even tho it felt kind of creepy and my dr. wouldn't allow it to be removed for about 4 mos after the last one. 3. Did you ask about the risk of blood clots from inactivity??? #111 Russ Cage(russ) on Tue Sep 2 21:56:50 2003: Sindi, your new stereo sounds like an Aiwa (right down to the dead CD player). There is a little button on the front of Aiwas called "demo" that turns the attract mode off. #112 Twila Oxley Price(anderyn) on Tue Sep 2 22:38:59 2003: Glad to see you're home, Sindi. #113 Sindi Keesan(keesan) on Tue Sep 2 23:02:51 2003: Yes it is an Aiwa. Jim just hit the 'demo' button and all the colored lights went off, just in time to go to sleep in the dark. Thanks. Is/was this an expensive model before the CD player died? It sounds good and can tune Toledo. It wants Jim to set the time now. I ate 1910 calories, probably enough to gain weight considering my activity level. I am working hard at being able to sit up longer as I am sick of lying on my back, but I run out of energy as well as muscle strength. Just let my brother know I was in and out of hospital. I did not hear fro him again after letting him know my diagnosis except he gave me his cell phone number and vacation schedule. I have to get Jim signed up for medical power of attorney real soon. I am an idiot to stay up this late (``11 pm) but no garbage trucks tomorrow and no blood draw at 7 or breakfast tray at 7:30. Jim needs to open up the living room futon to a bed and then goodnight. #114 Dilluted Distilled.(dah) on Tue Sep 2 23:08:47 2003: How neurotic. #115 Dan Cross(cross) on Wed Sep 3 00:45:11 2003: Regarding #114; Don't be an idiot. Cancer is no laughing matter. #116 Reverend Salvador Dali Parton(happyboy) on Wed Sep 3 01:17:58 2003: re:115 tobacco companies laughed all the way to the bank about cancer. glad to hear you're home sindi #117 David Brodbeck(gull) on Wed Sep 3 08:43:42 2003: Re #116: I doubt it, actually. If they'd been able to find a way to avoid it, they would have. Killing your customers is bad for business. #118 Twila Oxley Price(anderyn) on Wed Sep 3 08:56:11 2003: I have an Aiwa that I love -- it's at work. It wasn't hugely expensive... #119 Dave Lovelace(davel) on Wed Sep 3 09:14:27 2003: Sindi, I'm really glad you're out of the hospital. (Not half so glad as you are, I know.) Which two stations did you mean? Where you are, you should probably be able to get WKAR (90.5) & CBC (89.9) as well as WGTE, which you referred to. (Or were those the two, and your other equipment won't get WGTE?) #120 S M(mynxcat) on Wed Sep 3 15:01:21 2003: Sindi, I've been reading, though I haven't posted in this item before. Good Luck! I hope you get all better, and I'm glad you're home. I admire you more now, than I did before for your convictions. resp 79:> Thought I spied edina in one of those pictures, but wasn't sure till I saw the jp2 ones. Sindi's set up at the hospital looked interesting. glad she had something to do while she was there #121 Scotch! Cigars! Coffee!(fitz) on Wed Sep 3 15:30:14 2003: get well soon and get cured. #122 Leslie Smith(arabella) on Wed Sep 3 20:09:33 2003: Wow, what an ordeal, Sindi! Reminded me of Ken's stay in the Aspen Hospital last year. But it's not a teaching hospital, so no crowds of medical students there. I'm amazed at the stupidity of hospital food sometimes. Everything is low-fat, even for people who need to gain weight. Very silly. #123 Sindi Keesan(keesan) on Wed Sep 3 20:31:21 2003: Even stupider to make all the vegetarian food full of hot pepper so people won't add salt. I have never heard of a vegetarian (except a recent convert) with high blood pressure. Many thanks to all for your good wishes. Grex is something for me to look forward to every day, and it is great for my back muscles now that I am making myself sit at the computer (on a very padded surface). I am getting all three classical stations but they sometimes fade out. Cheap antenna. I seem to be part of the antenna. It even works in stereo. This is great music week - Telemann, Vivaldi, Dvorak, Mozart, Beethoven. I have been swishing my vile thrush treatment to music, for distraction. Today I was not woken until the hospital called to let me know that no, I was not supposed to wander into the hospital Friday and let them take blood with a needle, I was supposed to go to the cancer center to use the PICC line, wait for results, get the dressing changed, and see if my hemoglobin count had fallen (which would require a transfusion). I feel okay. I was supposed to have had a home visiting nurse yesterday to teach me (Jim actually, I can't do it with one hand) to flush the picks (little green things where the needles go in) on the PICC catheter. Today they called to set it up. Then n a company called to report they were delivering flushing supplies at 4 (they came at 3:15). A huge box with lots of paper stuff, months worth of blunt needles and heparin solution to put in every day to keep the lines open. A big pink thing to put the used needles in. Tape to go over the Saran wrap on the PICC line when I shower. Jim saw the rest. I get 20 home visits from my insurance each calendar year. Next week she will teach Jim to change the dressing and I don't need her again but can ask her to come. This is a very experienced hospital nurse who switched to visting nurse two months ago as her husband has a bad heart and she can arrange her schedule around him. He needs a transplant. I am lucky. He is only 40. They have kids 9 and 10. One of the translation companies where someone currently has breast cancer and is doing radiation is sending me a surprise package which is not a chocolate cake. The autistic four year old from next door (his parents are both nurses and will keep an eye on me while I am Jim's house) wants me to go upstairs to see the red light he just put in. Next week. Jim's friend and previous neighbor from 25 years ago, who started his own company and sold it for a lot of money, asked me to list "all" the foods I like and he will bring a basket. I have probably disappointed him by asking for bread, cheese, cider and dried pears instead of chocolates and creamed herring and everything else from the deli. Jim brought in his first fallen grapes and pears (what the animals left). Got to rest my back. I am eating real salad (a whole tomato and cucumber instead of two slices of tomato). Bye for today. Thanks to all. Baroque music! #124 Todd(tod) on Wed Sep 3 20:43:00 2003: #125 Russ Cage(russ) on Wed Sep 3 21:38:33 2003: In my experience, Aiwas are highly-promoted cheap junk. (Ask the guy who's had the CD player fail on his, and then heard tales of woe about the power controls failing on the subwoofers.) #126 Sindi Keesan(keesan) on Wed Sep 3 21:50:51 2003: Aiwas seems to be variable in quality. We have one really good quality portable radio/tape deck Aiwa, some good small headphones, and this stereo system, plus a cheap boombox that someone gave us as having a problem which we cannot reproduce. Sony is also really variable in quality. Fisher used to be good but has become junk (in the 80s anyway - we are a bit behind the times in used stuff). This Aiwa just played Bach Magnificat and three related pieces all evening. I like that. We don't have CDs. The radio works fine. The tape deck is double and one side reverses then it switches to the other side. It seemed like Dvorak was repeating a lot. Jim had put in two Dvorak tapes. Toledo classical comes back at 6:30 pm. Maybe I can get the insurance company to donate to them. Jim is still fixing things for people. About phone calls today from a former Ann Arborite, Chinese, now in Chicago. She is trying to figure out why her car battery is not working - the battery or the circuit. It rained in. Before that Jim tried to fix the plumbing long distance. They are selling the house and her husband is going to be in charge of pagers in Beijing, with a very large housing allowance for living 'overseas'. He was my housemate in 1985, and cooked a lot of bland cabbage. He shared a room with someone who cooked Szechuan. We would open the kitchen door to outside and try not to breathe when walking through. When my first roommate's wife arived he forgot how to cook. She is a superb cook. Offered to come cook for me for two days if the house sold quickly. Everyone is trying to feed me. Another call from a grexer whose new DVD player cannot be plugged into his TV. It will go into a much older TV that Jim found at the curb, with different connectors. Yet another grexer and Jim are trying to make her computer work (via telephone advice). He wanted to bike there (an overnight trip to Milan) but is sticking around here instead for my sake. Her 1987 XT works for grex. More Baroque music. #127 John Ellis Perry Jr.(jep) on Wed Sep 3 22:41:27 2003: re resp:120 (re resp:79): Yes, Brooke and Jamie are in some of the pictures on my picture site, http://jep.tonster.com. Look under the picture of the scrambled egg. #128 S M(mynxcat) on Thu Sep 4 12:34:54 2003: Thanks for the info. The scrambled egg looked really yummy #129 Sindi Keesan(keesan) on Thu Sep 4 15:36:42 2003: I notified the Basic Linux group - started by someone in Australia who put together a linux that would work well on a 486 DX2 66 with 16M RAM, and now a large collaborative effort - why I had dropped out for a couple of months and not switched to a speedy 166MHz pentium with a hard drive more than 125M. I immediately heard from an English speaking group member living I think in Spain (we have members in Singapore, a rather odd one in Hong Kong trying to make things work in 4M RAM, Germans, a Pole took over the Slackware 3.5 branch when the others updated to Slackware 7, a Czech, a French guy with his own Linux also Slackware 7 based). He says he also went through the no sleep at the hospital and the chemo and to remember thatthe end is in sight. Lots more communications from the translator who just started radiation and needs to treat it like sunburn (daily treatments for 2 months). Jim made me a 500 calorie rice/beans/veg/dried mushroom lunch and is eating four times what he gave me. I have started notifying friends and relatives and should answer all those unanswered letters. A Slovene friend is taking care of her sister who had stomach cancer remove and is doing therapy - she will be surprised to find outwhy I did not write for so long. #130 Todd(tod) on Thu Sep 4 15:52:55 2003: #131 Reverend Salvador Dali Parton(happyboy) on Thu Sep 4 18:59:44 2003: ask him to name his tapeworm after me, k? #132 Russ Cage(russ) on Thu Sep 4 22:30:25 2003: Sony is just as variable as Aiwa because Sony bought Aiwa a while back. #133 Sindi Keesan(keesan) on Thu Sep 4 23:06:54 2003: That certainly explains Aiwa. Today I spent half an hour trying to turn on the tape player. You have to hit 'Direction/Reset' as there is no Play. Along the way I hit GEQ and got a choice of rock or classic (with lots of bass). Jim eats bulk - and since he is working full time at feeding me he has been eating maybe once a day plus popcorn. Today he got a bottle of fruit-juice sweetened cranberry juice concentrate to make juice as I need to drink a lot while the tumor is being eliminated. Then he realized it cost $17 and will trade for some other things. He also picked up the ads for the Swedish (all they did was test it) foam mattress sold by the Birkenstock guy and wants me to lie down once on it. It only costs the same as a day in the hospital. They also sell assorted pillows, lumbar supports, mattress pads, camping mats (most likely for $300) and other items made of their special foam such as a mask to keep the light out of your eyes, a doggy bed (really) and three sizes of bike seat cover. If it sells, sell it. Tomorrow they draw blood and show Jim how to change the dressing. Or I can have a visiting nurse come every week to do it (minimum charge $130/visit for skilled care). Jim has done much more difficult things than peel off one layer and put on another. He even managed to inject heparin into both picks today (it is foolproof - the blunt-ended syringe only holds the right amount). They offered me physical therapy at $156/session. Jim says I have to do things for myself. I got up repeatedly to change the tape and pour orange juice and spill things off the sewing kit (Jim cleans up by piling). I even cleaned off the table so Jim (learning disabled) could find things. He says he has piles of things for me to sort if I can sit up long enough. We will have a perfectly sorted house in a few months of this (downstairs anyway). The building department expects us not to stop building for 6 months. I may ask for a special dispensation this year. The neighbor offered to weed my front yar and cut the back (first time since May). #134 Maxin' and Relaxin' in the Pacific NW(jaklumen) on Fri Sep 5 01:23:37 2003: Swedish foam mattress? The Tempur-Pedic System, a.k.a. memory foam? #135 David Brodbeck(gull) on Fri Sep 5 09:36:21 2003: My experience with Aiwa is that they have some of the worst front panel designs in the world, from a usability standpoint. They look pretty, though. I have an Aiwa Dolby Digital receiver, which I bought because it was over $100 cheaper than any other Dolby Digital system on the market. I've been satisfied with it, other than the really awkward front panel and the intermittent remote control. #136 Sindi Keesan(keesan) on Fri Sep 5 11:07:26 2003: I think the Aiwas are modelled on running shoes. I was looking for the usual levers that you depress for play, FF, RW, stop, etc. Nothing similar. The remote control at least has words on it but not PLAY, just Direction/Reset. They should have tested their product on some real people before marketing. The direction reset button on the remote control is part of a little set of buttons with a teal background the rest of which I think are for the tuner. Except what does SET do? The other tape-deck related button is in a different area entirely and says tape deck 1/2. You would think they would have put things together. Oatmeal with dried Chinese jujubes. I am spitting out the skins. He was very generous with them. Got to go do a blood draw (after three pills - I am told I can mash them in apple sauce instead of choking on them). How to preset an AIWA? THere is a PRGM button and numbers 1-10+. The tuner goes in increments of .05. I turned on some really bad music to drown out this mornin'gs power mower. Lots of trumpets and drums and no melody. Three pills and I am off to lie on a posturepedic mattress and hope I have energy after hiking into the store and back to also make it into the hospital. I will try to get Jim to leave the mattress until afterwards. Maybe I can try the doggy bed instead, in the car. (Yes, we had to insure it, I can't bike for a while). The bad music was Glazunov 1895. I am going to lie down for 15 minutes to recover from the jujube skins and the cloying sweetness. Never again. I am thoroughly sick of sugar. Yesterday he put ice cream and mango pulp on the oatmeal. I could have had a second cup of milk instead. #137 Sindi Keesan(keesan) on Fri Sep 5 11:34:52 2003: I keep choking on the pills - the thrush may be causing problems. Jim is now mashing them in apple sauce and will get liquid vitamins. I have been dreading taking them. Don't normally take pills. Jim says his daily popcorn with olive oil and nutritional yeast is about 700 calories. He is active. He was biking to the hospital 2-3 times a day and also biking all over on errands. #138 Sindi Keesan(keesan) on Sat Sep 6 02:08:32 2003: Today we were supposed to go have a blood draw (well I was anyway) and wait for results and if low hemoglobin have a transfusion. On the way we stopped at the new mattress department of Birkenstock. (We had already quizzed the guy all about his electric bikes a while back). I lay down and did not want to get up. The bed itself is about $900. He had at home a camping mat (30") wide 2" thick which I got instead for $200. It is heaven, no bones hitting the futon or lost circulation waking me up. I went to his house to try it on the living room floor and did not want to get up. (He is one of the people who moved a house and then tried to make it livable again, in my neighborhood). I walked in and out of the store and the house. Then I walked around Kerrytown a bit. Then I discovered (after walking) that I was actually hungry for the first time in a few months - the lymphoma must have ruined my appetite and maybe also the chemo which is now wearing off). We got Kerrytown figs, Zing's bread and a really overripe avocado and picnicked at the cancer clinic. Good news from the clinic but it will wait as I am going to try to get back to sleep now. My digestion tends to keep me awake but that should get better soon too. Tune in tomorrow. This is the good 10 days of the cycle coming. I walked everywher instead of a wheelchair. #139 Sindi Keesan(keesan) on Sat Sep 6 10:20:33 2003: Morning. Yesterday went to draw blood and was told my hemoglobic was still fine and no transfusions needed (hopefully won't need any at all again - the last one was just after chemo). The visiting nurse told us they would change the dressing on the PICC catheter and show Jim how (he has a box full). The cancer clinic said they were busy and to have the visiting nurse come back and show us how. She had come Wed and was coming back Wed. It needed changing Monday so they rescheduled her. It is also a different nurse - first one is changing to Chelsea and another one called us a few days ago. Half an hour later they came back and said my white blood count was low and I was supposed to have been given some injection or infusion on day 6 of chemo (last day of prednisone) to boost white blood cell production. Day 6 was labor day weekend and nobody remembered. Yesterday was day 12 and they said my body would start making white blood cells on its own any day now so they would skip it unless the count dropped and come back Mon and Thurs to draw more blood. (This only ends up taking a few hours to get there and back, wait an hour to draw blood, wait an hour for results). Half an hour later they came back and said the PICC line was subject to infection and since my count was low they would take it out. We WALKED to a room that was locked, I got left standing there unsteady on my feet while she hunted for the key and then another room and she pulled out 15" or so of thin plastic tubing from my vein after which nobody needs to teach Jim to do dressings. The one who put the thing in said it would be used for all the chemo treatments (5 months). It is heaven to get it out, so what if they stick needles in my veings twice a week and put in 7 more IVs (I have had that many, they keep messing them up and redoing them) for 2 hours each. The visiting nurse Monday got cancelled. The big box of supplies to care for the PICC line will be picked up again (more phone calls). I can bathe without Saran Wrap (Jim wonders why I took it out of the bathroom). I am ecstatic. I can sleep on my left side without sticking my arm off the bed to protect the little plastic dangly things. This is even better than getting the two IVs out of my right arm so I could eat and brush my teeth and get out of bed with it. I can sleep on both sides on my new foam camping mat thing. Jim is still pushing calories but he said I hit over 30 yesterday. It helps that I got hungry An awful lot of butter and avocado on the bread. My mother did this to me when I was 12 (buttered everything) and went to overnight Girl Scout Camp for two weeks and ate kosher with the other Jewish kids. They served a lot of pork so we did not eat much (the alternate there was peanut butter and jelly sandwiches which I find as edible as spaghetti with hot sauce). At a computer recycling conference they served us box lunches (a few years ago in conjunction with us doing truckloads of computers at Kiwanis we got invited to the conference at the Ann Arbor plant). Carnivores got a sandwish with an inch of meat and two slices of cucumber and one of tomato. Vegetarians got a sandwich with the two slices of cucumber and one of tomato! Jim put enough avocado on one slice for maybe 5 slices. Maybe he likes it that way. The result may be that I each only half a slice of bread. I hated when my mother buttered everything. Or maybe he had to weigh out an exact 2 ounces. He is going nuts with this calorie count. We had a long argument about whether the pears a friend dropped off (not very sweet) had fewer calories than the sugary ones in the store. Yesterday I got a gift basket from the translation agency where the woman started radiation this week. (She says it is 1 hour total drive, 1 hour wait, and 30 seconds treatment every weekday for a couple months). She thought I would enjoy being able to eat things that people usually can't eat because of the calories and cholesterol and it is a huge basket full of cookies. I have never in my life tasted a cookie that was closer to a candy. 250 calories for a 1" cookie. 20 g fat. 10% cholesterol. I forced down two with 2 cups of milk to dilute them. Jim got sick on 12 (3000 calories - my total for the day) and wants to give them away now. Jim has met his match. We are also weighing fresh figs and trying to guess how the size and calories compare to dried (in the book). At 2 am. Jim enjoys this. Next chemo may be (they left a message about an appointment) 8 am two Mondays from now. The hospital continues to get me up early ;) Jim's favorite Zing bread was covered with sesame seeds. Not the best choice for a picnic at the clinic. Today a bath!!!!!!! (what can I sit on in the tub?) #140 Dave Lovelace(davel) on Sat Sep 6 13:19:52 2003: Go for it, Sindi! I hope you're feeling as much better as you're sounding. #141 Sindi Keesan(keesan) on Sat Sep 6 14:48:52 2003: My big problem right now is to make/find a chair with enough padding that I can sit on it. The short chairs at Jim's house are not very padded. His living room chairs leave me feet four inches off the floor (with a painful edge digging into my thighs) and the back of the chair is four inches from my back. I have a low chair I use (which puts the table near my shoulder leel) that we have been piling pillows on and using with a card table. I sent him to my place to get some dense chair cushions. My office chair back is really painful against my spine. Right now I have one of Jim's chairs giving me a backache with a pile of stuff under my feet and will go back to lying on my back to read instead. Put a pillow behind my back, helps some but the edge of the chair is just too high and rounded. The AIWA tape player is a mystery to me. If I hit tape deck 1/2 and Direction enough times at random (it took about 20) it will play a tape. THe first deck may be dragging. Usually it just changes direction without playing. Wonder how to get it to auto reverse. Someone should give this one the 'worst design' prize, or the 'least instructions' prize. -------------------------------- I get all sorts of encouraging email. Wonder how it got here so slowly and how they knew on Aug 21 that I would be wanting to lose weight. I found this buried among the things my spam filter caught (v;i;a;g;r;a, online pharmacy, free health insurance quotes). From bbb_6346_bs@hotmail.com Sat Sep 6 14:32:24 2003 Date: Thu, 21 Aug 2003 16:37:51 -1900 From: bbb_6346_bs@hotmail.com To: Undisclosed.Recipients@cyberspace.org Subject: tiny patch [The following text is in the "Windows-1252" character set] [Your display is set for the "iso-8859-1" character set] [Some characters may be displayed incorrectly] The ALL NEW "Patch" THAT ALLOWS YOU TO LOSE WEIGHT ALL DAY LONG! THis is 100% safe & is guaranteed to work. MONEY BACK GUARANTEE! * Increase Metabolic Rate * Reduce Body Fat * Boost Energy Levels & Feel Better * Accelerate Weight Loss * Decrease Apetite * No side Effects * AND PROVEN TO WORK! If you haven't tried it, then you have no idea how much better it will make you feel & change your life...Try it now... http://www.freequotelkj.com/wl3 As seen On Tv! If you have received this email and are not a member of our health club then please remove yourself if you wish. http://gadgitz.biz/1/ ---------------- I suggest lymphoma to anyone to lose weight instead, or hospital food. Today's mail was a letter from U of M Home MED with a consent form so they can bill me for home medical supplies. This is the box they delivered Wed with the syringes for cleaning the PICC line. We used two, and 6 ml heparin. The clinic said something about getting them picked up. I wonder if it is worth the hospital's time and money to bill for two syringes or they could just replace them and seal up the box (Jim can bike it back to S. Industrial Hwy for them). I have saved the insurance company potentially 20 x $130 on changing dressings. They really ought to go along with a prescription for a mattress pad. Also saved them a bunch of $156 physical therapy sessions by walking around Kerrytown on Jim's arm and forcing myself to do things here. Durable medical supplies are covered - a pad is a lot cheaper than a wheelchair. I just got a flower from the artist girlfriend of a neighbor where we are building and a small art book. They are remodeling big time (small house). The Art of the Surrealists. I wonder if she likes cookies. She had other helpful suggestions says Jim. No visitors have showed up to share the cookies. Missed them all yesterday. Got to get off this backbreaking chair now. #142 Maxin' and Relaxin' in the Pacific NW(jaklumen) on Sat Sep 6 17:05:55 2003: Hospital food? Oh no, last hospital I was in the food was decent-- I just didn't have much of an appetite because of the reason I came in for. No, I'd say airplane food would more be likely. I wouldn't know about lymphoma personally, but a friend of mine did lose a lot of weight in the initial stages of leukemia. #143 klg(klg) on Sat Sep 6 21:22:46 2003: ". . . Half an hour later they came back and said my white blood count was low and I was supposed to have been given some injection or infusion on day 6 of chemo (last day of prednisone) to boost white blood cell production. . . ." Neupogen??? @$400 a crack. Works good, but makes your pelvis & long bones ache. Comes in vials or in pre-loaded syringes. Had to search for a pharm. that carried it. " . . . she pulled out 15" or so of thin plastic tubing from my vein after which nobody needs to teach Jim to do dressings. The one who put the thing in said it would be used for all the chemo treatments (5 months). It is heaven to get it out, so what if they stick needles in my veings twice a week and put in 7 more IVs (I have had that many, they keep messing them up and redoing them) for 2 hours each.. . . ." No word on a "port"?? The dr. & nurses said that the chemo is caustic stuff and injecting it through an IV would pose a risk to damaging blood veins & surrounding tissue. #144 Sindi Keesan(keesan) on Sat Sep 6 21:26:30 2003: Hospital food may be decent if you like meat and are trying to lose weight. Today I rested and Jim cut my hair. Amazing how exhausted you can get from walking around one day when you have been bedridden two weeks. What is left of my muscles aches. I now have an interesting red rash at the bend of my right leg that itches. I suspected some other fungus infection so called the hospital to ask about it. The nurse in the ward where I had been said it could be: 1. Allergy to allopurinol. Usually appears on the arms. Does not usually appear after taking the stuff for weeks. 2. Irritated hairs. My leg is not terribly hair. 3. A fungal infection. Jim got me some cheap KMart antifungal cream to apply twice a day. The hoarse throat may go away if I stop swallowing the Nystatin. I have no unusual symptoms. Stop flossing my teeth. Low platelet count. A bit of blood in my nose. Nothing to worry about. I forgot to take home my pain medicine. I went back to sleep. Skipped the bath and showered instead as it was quicker. Discovered I could barely lift my spoon at supper. Went back to bed. Tomorrow is another rest day. Eat eat eat. #145 Sindi Keesan(keesan) on Sat Sep 6 21:28:09 2003: I managed to program numbers 1 2 and 3 on the AIWA to Toledo, Lansing and Toledo I think by hitting clear program 2 (etc) set. Cannot for the life of me get 1 to program to Canada - what do I try next? When I hit 1 it goes to Toledo instead while trying to program. Jim discovered you can set the autoreverse on the unit not the remote control. Now it repeats once instead of not at all or forever. #146 Scott Helmke(scott) on Sat Sep 6 22:35:16 2003: Often you set a preset by holding down the button for a couple seconds. #147 John Ellis Perry Jr.(jep) on Sat Sep 6 23:07:42 2003: It's great news to hear you're doing so well, Sindi! #148 Sindi Keesan(keesan) on Sun Sep 7 11:59:03 2003: Which button needs to be held down a couple seconds - the number, prgm, clear or set? I gained a pound but it seems to have gone away again before breakfast. Jim is mashing my three pills in apple sauce. I am still hoarse. #149 Sindi Keesan(keesan) on Sun Sep 7 15:28:08 2003: I will try programming Canada to number 4. Today is a video day as I don't have the energy to turn pages. Manon of the Spring. Dare I ask what library videos people recommend? #150 Scott Helmke(scott) on Sun Sep 7 16:15:48 2003: Usually you hold down the number button? #151 Tim P. Ryan(tpryan) on Sun Sep 7 17:43:19 2003: Sorry skipping last 60 or so responses. Anything happen? #152 Dilluted Distilled.(dah) on Sun Sep 7 17:54:29 2003: Yeah, an ASSHOLE posted. #153 Sindi Keesan(keesan) on Sun Sep 7 20:25:55 2003: Yes, the one in 152. I think the CLEAR button is broken. I programmed 4 to Canada with no problem. Jim suggested unplugging to clear but I don't mind two Toledo buttons. We downloaded and printed all the book suggestions but the library catalog (online) is broken today. I stopped reading Last of the Mohicans. Too many rifles. Thoman Mann is unhappy. Jane Austen got lost (under the bed)? My Macedonian friend who is playing in an international women's basketball tournament in Orlando Sept 2-9 and will be in NY Sept 15-21 was hoping to visit me and I have to get hold of her somehow. Can anyone track down the Macedonian women's basketball team email address in Orlando for me? Or the email address of an international tournament there? We tried. #154 John O'Reilly(jor) on Sun Sep 7 21:46:49 2003: Those damn Mohicans. I had to bail, a third of the way through. #155 Sindi Keesan(keesan) on Mon Sep 8 09:14:01 2003: Today another blood draw and we meet my doctor friend at noon. Maybe he can figure out why I have been hoarse for a few days. Also decipher the Macedonian letter better than I could. I think my friend's daughter is waiting for test results (from Bulgaria) about possible stomach cancer. In addition to the state universities (which I think are still free) Macedonia now has 'more efficient' private ones for some subjects, but the tuition is half a year's salary. I offered to help ($2000/year). Room and board $150/month. She has two daughters, makes $330/month and has managed to save $3000 in 6 years since the divorce. She has not seen or heard from or received money from her ex and her employer is doing massive layoffs (1000 people at a time). Country of 2 million has half million unemployed. She thinks she is safe until 2005 (from layoffs). Our unemployment is nothing compared - programmers without jobs programming can still find some way to make a living. #156 David Brodbeck(gull) on Mon Sep 8 11:22:34 2003: On my Aiwa I program a station by pressing the 'ENTER' button once. It's assigned to the next available slot. To clear a slot I press ENTER twice. Yours sounds like it's different, though. #157 Sindi Keesan(keesan) on Mon Sep 8 21:32:02 2003: No ENTER button. Thanks anyway. We have two other mystery programmable stereos that we gave up on elsewhere - this was actually usable. Today we left at 10 for an early blood draw to 'avoid the rush' and waited an hour for the blood draw and then went to see my doctor friend about my throat. A mystery (I am very hoarse). He helped read the letter. At about pm apparently someone called my name to tell me my blood test results were okay and I could go home but Jim had gone to find me lunch and I had fallen asleep. About 3 we asked and the same person came back out and said we could see a doctor. About 4 they took height, weight, blood pressure (first three cuffs were broken), pulse (down to 100), and temperature (all normal) and I waited another hour to be told that I should gargle salt and soda water four times a day after eating and before Nystatin. Let's hope it helps. The rash does not look fungal to the doctor. Maybe an Allupurinoal allergy. I should have stopped taking it a few days ago. (On discharge I was told to take it until chemo next monday). I will stop. No more need to wash and apply antifungal cream twice a day or mash allopurinol in apple sauce. The gargle is quick and easy. I sat for 7 hours. I will recuperate from the blood draw for 2 days and do another Thursday and go home and wait for results. Platelets normal (no more bleeding from the nose when I wipe it). White blood cells double last time but 1/1/4 normal but lots of litle precursors. I should start feeling pretty good by about Sunday. More chemo Monday, first appointment. So who needs sleep. They said I could bring breakfast. Jim found 7 books on the list and I will be on my back for two days instead of siting. Nice to spread out the exercise a bit but that is life. #158 cs(oval) on Tue Sep 9 11:31:19 2003: jim sounds like a great guy - i'm glad he's taking care of you. #159 Sindi Keesan(keesan) on Tue Sep 9 12:14:36 2003: Jim is a super nice guy. He is currently mashing my vitamin pill in a mortar and pestle so I can take it with apple sauce instead of choking on it. And doing the last two months' laundry since I had no energy for it. And biking all over the place every day to find me interesting foods - brie yesterday. #160 Sindi Keesan(keesan) on Tue Sep 9 12:33:47 2003: Yesterday I phoned the Home med people about returning a large box full of dressings and syringes. They will pick them up but thrown them out. The syringes are sealed in a bag but someone might have put arsenic in them. Then the visiting nurse called to come out and teach us how to change the dressingon the PICC catheter (they removed it at the hospital Friday). The hospital must have called her to reschedule from Wed to Mon than forgot to cancel. She will pick up the bo x of supplies for use in training nurses. jim kept two syringes for filling ink cartridges with, and the roll of tape. Hard to get it all coordinated, I guess. Today the hospital called to ask where exactly to phone and mail. Jim gave them his addres as home and work, and himself as contact instead of my brother. (Someone made a wrong assumption when filing out my blue card - instead of asking me who to contact they copied over my brother). My brother is somewhere or other between Boston and Toronto or maybe is home from vacation already. He never answer my email of a week ago when I let him know I had been in and out of the hospital. Got to get this Patient Medical Advocate thing signed and turned in next time we capture a pair of witnesses who don't work for the hospital like Jim's neighbors do. Today we need to wash (Jim does) the woolen sweaters and things that I was going to wash in May but could not as I was bedridden with pulled muscles. If the moths have spared them. They smell funny from my apartment basement (which floods when it rains as the gutters don't work). And see if any of Jim's chair collection has a padded seat and back. #161 S. Lynne Fremont(slynne) on Tue Sep 9 17:12:53 2003: You know Sindi. I have a thermarest chair I could let you borrow. You could put it on a chair and it would provide some padding on the seat and back of any chair it was put on. #162 Sindi Keesan(keesan) on Tue Sep 9 18:05:01 2003: That would be appreciated! What I have now is not working well and Jim loves to try thermarest products. Still need to try my armchair at the apt but I did not have the strength to first remove a thermarest mattress that JIm had folded and stored in front of it because he found a free space to do so. It will take a few weeks to get my apt usable after the few months when I was just dropping things wher they fell, and the two weeks when Jim was sleeping there and spending days with me at the hospital. I came back andfound he had been eating peanuts for supper (evidence being the pie plate he uses to microwave them, on a burner) and a frying pan (from the burner?) on the chair. TOday I got a chain-mail type thing about Bush trying to steal another 87 billion dollars from us all from another translator (to whome I passed along a Polish job). She says she had breast cancer treated in 2000 and the cure was much worse than the symptoms. I guess breast cancer caught earlier must have a lot less symptoms than I had. I can handle the cure better than the hospital stay. Also (did I mention) a description of what the linux group person in SPain ( who it turns out is also a translator) went through - surgery, radiation and chemo for a tumor on his tongue, which made it especially difficult to gain back 20 pounds. He says he was not sure he would make it at times but he and his friends devised a liquid diet. I don't have to deal with liquid diets, or nausea, or coming for chemo treatments every day, or coming from the UP for a bone marrow transplant, just somehow surviving the exhaustion and minor side effects. (Wish I could get more sleep at night - maybe my digestion will improve over the next four months, that is my only really annoying problem right now, so who cares if I am too hoarse to be heard at 5 feet). Jim discovered you can print photos (not quite the same shape at 640x480) at K-Mart for 50 cents. He goes out shopping daily and has these little adventures on the way. He also found a pear tree. We are down to about 200 pears without the new pear tree and I don't have the energy to help make pear juice. Our pear tree has a few very hard green pears and the grapes are not quite edible enough for the raccoons to knock them all off yet so Jim is eating them sour. I survived the 7 hours wait for blood test results better than I did last Friday, possible because Jim agreed I should not be practicing walking the same day this time (or visiting stores afterwards). A couple of hours sleep in the daytime and I can wobble around the house a bit and even sort laundry and I FED MYSELF bread and cheese and milk. Jim is making a stir-fry now out of the rock-hard tomatoes from the neighbor and some Napa cabbage. 500 calories to go. I weighed 95 at the hospital with clothes on. I hope some is going into muslce and the rest into padding for my seat. Today was uneventful except for one call from the visiting nurse about picking things up, one call to confirm that I have moved (to Jim's house) and that my brother is not the one to contact (he never answered my email yet) and one call to remind me I have chemo Monday. I unplugged the phone to sleep. Tomorrow I will attempt another shower with Jim's help and with short hair. #163 Sindi Keesan(keesan) on Tue Sep 9 18:18:20 2003: Another translator looked up allopurinol rash for me. I checked for other side effects which include digestive upset and 'closing of the throat'. Neither doctor thought of this one - they suspected yeast infection and could not see anything. I hope to be able to talk again in a few days. Got to be your own doctor. #164 Scott Helmke(scott) on Tue Sep 9 19:03:47 2003: Jim better not be muscling in on "my" pear tree in Vets Park. ;) #165 Dave Lovelace(davel) on Wed Sep 10 09:12:31 2003: Since the likely K-Mart is right across from there, that's probably it, Scott. 8-{)] #166 Sindi Keesan(keesan) on Wed Sep 10 09:49:08 2003: No it is a local nursing home with an orchard. There is a pear tree in Vet's Park> We know of two apricot trees but mostly just apples on campus and city hall has apples too. Probably failed grafts to crabapple. WOnder if we can dry most of the pears from the friend's tree. Today the rash no longer itches and is lighter. I stopped allopurinol yesterday. The throat is much the same. Jim has been cooking breakfast for an hour or so. #167 Sindi Keesan(keesan) on Wed Sep 10 19:10:03 2003: Today I took a shower by myself (Jim was there just in case and did my back). Last time I needed help. Amazing how long it takes to get your strength and energy back but I guess I had a lot going against me. I hope Monday's chemotherapy does not put me back a week as far as energy. 95 pounds. Rash nearly gone. Throat much the same as before. A Benadryl might help but I am avoiding any additional drugs. Jim is skipping the calorie count today as I am hungry and therefore eating without compulsion. I hope I don't stop being hungry after Monday again - no fun eating because you have to. What do I tell two young friends in Macedonia to whom I have been writing directly since their mother, who was a good friend of mine when I studied there (I met her in 1973 and we visited, she staying with me at the dorm when she needed to be in Skopje, me meeting all her family in a very small town), died a few years ago of stomach cancer? They just finished high school after taking care of themselves for a couple of years with some money from the government and their (divorced) father in another country. One of them wants to be an English teacher and writes me emails in English. I think maybe I should not mention anything about cancer. The hospital sent me a very long evaluation form about my stay there. Overall cheerfulness of the hospital? Lots of nice cheerful staff but can you call a hospital cheerful? I finally got to se the patient lounge where Jim was keeping food on Monday - a little room with TV blaring, a table, someone's stash of canned soup, free cookies with pink frosting (Jim said they were as bad as they looked), free candy (they really push sugar there!), a bunch of picture puzzles, a scrabble game and some magazines. Someone's mother was waiting there, no patients. Jim showed me how to reach grex via telnet on the computer - he had set it up. We had 2% milk (nobody could findwhole milk). Degree of safety and security. Jim said he could just walk into the hospital at any hour if someone opened the door for him. Visitors are supposed to be allowed 10 am to 11 pm but he showed up at 7 and nobody minded. The rule is to keep out noisy kids. Extent to which you felt ready to be discharged. They let me go when I could breathe on my own - I think because they got tired of hearing me complain about no sleep. I had to prove I could breathe with enough oxygen while walking in my sleep. Don't need to do that here. #168 Sindi Keesan(keesan) on Thu Sep 11 11:56:11 2003: We were probably a bit premature in cutting my hair. When I pull on it little bits come out. Most of it does not come out. My mother (who had radiation for brain tumor) said she had greying hair before and it grew back dark, in her sixties. Got to plan ahead and find some sort of cotton cap. This is minor. Jim wants to put in a shower filter to trap the hair. Good thing I got sick in warm weather but it will continue through December and I will have very short hair in January. Off for another blood draw and they can phone me the results as I expect nothing unusual. Jim liked the looks of the lunch he found me Monday (cooked chopped vegetables inside a pizza like crust). They serve until at least 1 or 2 pm. (Hospital cafeteria has less of a captive audience than the kitchen serving the low-fat patients). There is also a Wendy's and a Pita place that has Veggie (cheese) and Very Veggie (?) pita sandwiches. #169 klg(klg) on Thu Sep 11 13:44:09 2003: There is an organization ("Chemocaps"??) that collects caps & hats from various sources to give to ca patients. The union @ one of my company's plants recently sent them a shipment. I think they have a website, but I am not sure what they have available or how one can obtain a hat. At my second treatment, the boyfriend of the woman in the next cubicle had shaved his head as a show of support for her. At the time, there were also various news stories of similar things (teammates, spouses, etc). My spouse made the offer, but I was wise enough not to take her up on it. My hair grew back. Except for an area on my chest that was exposed to radiation, but what didn't grow back there reappeared on the top of my scalp. The texture was different, too. Somewhat smoother. #170 Sindi Keesan(keesan) on Thu Sep 11 21:30:19 2003: We had blood draw, lunch and some back to normal blood test results which means it is time to knock out all those multiplying blood cells again. The lymph cells are also back to normal and should be killed off mostly. The nurse there explained to me how Monday would go. They add another chemical which takes 4 hours by itself and may cause fever and chills and you need to monitor blood pressure. Plus the other three chemicals (CHOP). The first is called Rituxin. I may look it up. Maybe I don't want to know. It could take 8 hours if they slow down the Rituxin to stop side effects. She said to bring something to eat, a book or cards to stay busy with, etc. They give you a bed and a potty. I hope it is not a big room with TV blaring. Treatment starts at 10:00 and could end by 3:00 or as late as 9 pm (they close). Subsequent treatments should be only 5 hours - not bad for every 3 weeks, I suppose. The last blood draw took up 6 hours total with waiting. I was told not to be wearing a mask, that is for bone marrow people who have no immunity at all. It was hot and damp inside. So since I have immunity today and through Sunday we stopped at the library and got a pile of videos. Did not have the list. I have sore muscles again from walking around there. We picnicked outside with the fried vegetable in dough special but I got sore sitting in the wheelchair so we came inside. They have little chairs with attached tables near the window so you can admire the outside from inside. You can get 8 oz whole milk from a vending machine for 65 cents. We brought our own instead (in a milk not a water bottle). We fetched my armchair (it should work for short periods of reading in an upright position but not for using the computer) and forgot the fruit dryer. On the way out our friend who works there was coming in and offered us another pile of pears. Jim is still picking from the tree down the street. Dried pears for the next few years. Our own tree was picked clean by squirrels. The raccoons have not yet judged our grapes ready to destroy. All the wheelchairs are adjusted for people with two long legs of different lengths, some twisted at odd angles. I am lucky I am skinny enough to curl up in them instead. They are not readjustable as they are nearly all broken. I felt sorry for people who had to sit 'normally' in them. Saw the 90 pound kid there with his mother. He wears a mask and needs chemo daily but is in remission. #171 Dan Cross(cross) on Thu Sep 11 22:53:35 2003: Sindi, I don't think you should feel at all bad about mentioning that you have cancer to those whose loved-ones have died from it. I've had more members of my family die from it than I care to mention, and it never brings back hurtful memories when I learn someone else has it, particularly if they're a friend of mine (again, something that happens rather more than I wish it did). I think it's noble that you want to spare these folks pain (if I interpret your intentions correctly), but I humbly submit that, if you let them in on it, you'd find they'd be a powerful source of support. Just my 2c. #172 Sindi Keesan(keesan) on Fri Sep 12 10:36:21 2003: Thanks for your advice. Both my parents died in their sixties of cancer which was diagnosed when they were around my age. My mother's two brother's and the daughter of one (age 30 - Hodgkin's lymphoma) and my father's sister also died of cancer, each a different type. My father's oldest sister died at age 88 of a fall after cancer treatment for 2 years before that. I will think about telling the two teenage kids. Cancer in Macedonia is probably a lot less curable. Still have to write my Slovene friend who is caring for her sister who had stomach cancer. In Slovene. I wonder how you say spleen. I forgot to get that dictionary yesterday. I am amazed at how many people I have been notifying. Today I am trying to help one of them with a Slovak birth certificate that needs notarizing. I am not making a trip to the bank, they are unlikely to notarized if Jim takes in my signature, so we are asking a Polish translator to print it out and notarize it. The owner attempted a translation. It does not look very English and would be hard to correct. I hope I have, here, a copy of some other SLovak (or even Czech) birth certificate that I can send him as a model, which I will then correct based on the original SLovak which he faxed, and he can send that to the Polish translator for printout and notarization. It might be quicker for me just to do the translation. Jim wants me to work on getting a prescription for a 3" fancy foam mattress topper to replace the camping mat. If my voice worked better it would be easier. I hope this is just an allergy to the drug I stopped. Breakfast has arrived. Jim will try to find the model certificate on the other computer. Should be interesting. #173 klg(klg) on Fri Sep 12 12:55:15 2003: CHOP is four chemicals, although the Pred is taken as pills: CHOP chemotherapy agents C Cyclophosphamide (Cytoxan ) DNA-Altering H Doxorubicin (Adriamycin ) or Rubex or Hydroxydaunomycin Antitumor Antibiotic O Vincristine (Oncovin ) Blocks Cell Duplication P Prednisone (Deltasone ) steroidal: anti-inflammatory, Immunosuppressant RITUXAN - a monoclonal antibody (Mab) This website looks interesting. It is what it says. http://www.lymphomajournal.com/journal.html #174 Sindi Keesan(keesan) on Fri Sep 12 13:22:18 2003: While in my never-never land I sort of let other things slip and the bank has now charged me $9 for my checking account going too low. Jim does not understand how it happened as he says he only took out what he put in. I think it may have something to do with my landlord forgetting to cash a rent check from a while back but at this point I have drawn a line across the bottom of the balance sheet and started all over. I am no longer keeping track of our expenses. Let Jim count calories instead. I am starting to answer mail from a few months ago. Jim promised to do the wool laundry from April on a dry day. Back to reality. #175 Sindi Keesan(keesan) on Fri Sep 12 19:46:53 2003: I could not find a spotted grexers item. Last week near the hospital we spotted a recumbent bike with Scott on it and ended up at a light together. (I passed him a fig). Today we spotted slynne because she brought over her thermarest chair for me to try out. It needs a better-behaving mat (hers no longer inflates) but we have lots of those. She admired Jim's luxury model, tried the local pears, and left me a pile of interesting looking books and videos. Our very first visit and Jim had been rehearsing how to clean p the room and make the bed back into a couch but did not bother. It was nice to meet slynne in person (Jim had already met her via the chimney). I don't spot a whole lot of people otherwise. My view is of the grapevines. Jim was out and picked a few tomatoes (pretty tiny, but that happens when you do not weed) and reports that HIS pawpaw tree also has pawpaws. The Seckel pears left on his tree are still hard and green. Is there any non-local news I should know about? My world has shrunk. Today's gourmet supper was grilled cheddar on some sort of Zingerman's 'rye'. The scale is being creative. Sometimes I am 96 pounds, sometimes -437 pounds. Jim says to try the other two and pick my preferred weight. Perhaps it was not just the batteries that caused these to come to Kiwanis and get dumped. #176 Ken Josenhans(krj) on Sat Sep 13 16:43:38 2003: ((Sindi wanted me to wave hi at Grex from her lunchbox computer. I'm over visiting Sindi and Jim.)) #177 Sindi Keesan(keesan) on Sun Sep 14 11:32:18 2003: It was a nice visit. We discussed hospitals in Aspen (where Ken said the food was great but the stay was boring), PICC lines, feet, and various modern music technologies and formats such as can you use Linux (maybe not on a 486) to burn CDs. He made me three classical music CDs to listen to (not on the AIWA) during the 4--6:30 news time and on weekends. Jim tried to fix the AIWA CD player by putting a book under one edge but that did not help. We listened briefly to the jazz CD that came with the cookies ('sounds just like Kroger's'). In general a very nice visit but I had to lie down for half of it. I had promised Jim to go out for a walk yesterday. We made it nearly to the corner of his rather long block and encountered another neighbor who goes out walking every day. She had 5 strokes and says the first time she overdid it walking and fell. Jim walked with us both in the middle so we could hold on to him. Her problem is sidewalk bumps. Walked back to the other end of the block where she lives and turned down invitations to look at her garden (which some young friends in their 50's insisted on weeding for her) and to come in and sit down (can't sit on most chairs yet) and came back and I collapsed. We will try to do this every day and maybe make both corners some time. I tried to change the toilet paper but the spring is stronger than I am. A good goal for next week. I am up to 95.5 pounds on the unlighted scale while the one with red lights suggests somewhere from 92 to 97 along with the large negative number. I hope I am still hungry after tomorrow, which is what I ended up thinking about instead of sleeping half the night. They tell me I can sleep during transfusion of Retuxen (sp?) - sure, while they are taking my blood pressure every half hour with that nasty machine (which gives wrong results anyway). Maybe Jim can use a stethoscope on me instead if he explains he took two years of nursing courses at WCC. I can even take blood pressure (not my own, I don't think). Today we need to come up with packable breakfast (to be eaten before chemotherapy which should not be on an empty stomach) lunch and probably supper for both of us tomorrow. There is always the refrigerator in the patient lounge on floor 8A of another building, and microwave oven. I need something I can eat with one arm tethered and this time I will make sure it is my left arm tethered. Ken said he had time to get bored in the hospital. Maybe I will have time to get bored tomorrow. The bed will probably be sticky plastic again but no hospital gown with snaps under my spine at least. #178 Sindi Keesan(keesan) on Sun Sep 14 16:41:05 2003: Today we finally got the form signed for letting Jim make my medical decisions, witnessed by the neighbors across the street when we took a short walk (to the near corner). One of them offered to make me peach cobbler. Her husband fixes very expensive Sony recording equipment and a few years ago helped us fix a receiver by pointing out that a line was missing on the schematic we were trying to fix it with (which led to our redoing a bad solder joint that was destroying compnents). The hike continued into the back yard, where I ate a ripe pear (they are starting to fall) and admired the sunflowers, ornamental amaranth (which somehow are thriving despite the weeds -big purple flower spikes), and lots of cherry, yellow pear, and plum tomatoes plus some kale, cabbage, and all sorts of bean species twining around in the leaves. I dont' think I will be picking any beans off them this year. The jerusalem artichokes are slightly shorter than the fruit trees and there is one clump of pawpaws. I am experimenting grexing from the armchair today but it like most others is for people with longer legs so I need to sit cross legged. I have found the letter from my friend in Trieste about her sister having stomach cancer. Her chemotherapy should have finished in July, and it involved three days in a row of infusion every three weeks. Probably shorter days than I will have tomorrow, when they are infusing four things in one session. Her sister also had surgery, and was trying to get back up to at least 46 or 47 kg (x 2.2 = about 100 pounds). Her sister is a few inches shorter than I am and I think was less skinny to start with. My friend said the symptoms started suddenly. Her sister cannot eat fats because they removed her 'vranico' (I don't have a dictionary here) and has to eat a little bit many times per day. I really have it easy as regards eating (except the fuzz will be back on my tongue in a few days and I think the chemotherapy removed my appetite). She says the first few days after therapy are the worst. Can't be any worse than the hospital - at least I can sleep and the food is a lot more varied. I get custom-order meals here. (Jim continues to feed himself popcorn and my leftovers and lots of oatmeal). I should order yellow pear tomatoes. If you don't hear from me for a couple of days it was the chemotherapy making me tireder again. My friend (who is Slovene - I need a dictionary badly) will be surprised to hear from me. We met in 1973 at a Slovene summer school, where she took pity on me for not understanding a word and tried to help in English. Since then we have been through the death of both our mothers (brain cancer) and her father (old age). Seems she is always taking care of someone. I had asked if she could meet me at the station in Trieste after the summer school and help me find the youth hostel - I ended up their guest for a week instead. Trieste is a lovely place to visit - it runs up the hill from the sea, with many pedestrian-only stairways instead of streets, areas where the water supply is outdoor fountains, a rocky beach, aquarium, museums. In the winter you need to hold onto the railings which are conveniently attached to many of the buildings on the steeper streets so the wind won't blow you away. My friend is still in the apartment her parents had (there is a severe housing shortage and you need state help to find anything) and complaining of all the construction noise and dirt as all the surrounding apartment buildings are being replaced with larger ones. She is not allowed to move. Her parents raised three kids there. Kitchen, living room, 1.5 bedrooms (the .5 is more of a storage closet but she slept there). Nobody slept in the kitchen. At one point they took in her divorcing sister with her four kids. This building is 3 or 4 floors of two apartments each. Downstairs is a bakery where they start around 4 am, and you get your morning rolls. She hopes I am having a more peaceful and pleasant time of it at the moment than she is. She is in for a surprise. I hope her sister is doing well. Her apartment reminds me somewhat of the one my grandfather had in Brooklyn (rent controlled, $90/month in the early eighties) but they don't have a central open area like the larger apartment buildings in Brooklyn so the apartments all have clotheslines stretched out between windows in two different rooms, on the street side, with pulleys. My grandfather would wash his laundry in the bathtub and hang it out on some complicated clothesline arrangement, and I think his building predated refrigerators as there was a little compartment off the kitchen to put milk in in cold weather. Brooklyn must have been a real step upwards for early immigrants from Italy. Jim recalls our staying at his apt (without electricity - he was already in a nursing home) and having breakfast in Italian pastry shops a block away while we attended a translator's conference. The trucks passing by on the four-lane highway in front let us see at night anyway. When I was a kid I found the cockroaches in the bathroom interesting. He lived there since 1936 (and died in 1985). #179 Perverted old Vlad.(dah) on Sun Sep 14 17:16:09 2003: DID YOU SAY TAMPONS?! #180 Sindi Keesan(keesan) on Sun Sep 14 19:32:05 2003: Instead of typing !ignore I can edit the .cfonce file but there was some way to do pico without line wrapping -what is that? -w? Jim went out to pick tomatoes and peppers to feed us tomorrow. #181 Perverted old Vlad.(dah) on Sun Sep 14 19:49:32 2003: This is not the technical problems item, dearie. #182 Glenda F. Andre(glenda) on Sun Sep 14 20:30:26 2003: It may not be the technical item, but it is her item. I would say she can discuss anything she would like to discuss. With or without your approval. #183 Perverted old Vlad.(dah) on Sun Sep 14 20:57:21 2003: Yeah, sure, we all can, but not without possibly violating the rules of TACT. #184 Sindi Keesan(keesan) on Sun Sep 14 22:01:14 2003: Has anyone ever needed approval to say something on grex? If so, all twits have my approval to say anything