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 they like but don't expect any response from me as I won't see it. Where did/do other people's grandparents live? #185 S. Lynne Fremont(slynne) on Sun Sep 14 22:03:14 2003: I only have one living grandparent, my mother's mother. She is almost 90 and lives in Farmington Hills. #186 Joe(gelinas) on Mon Sep 15 00:23:14 2003: My maternal grandparents lived in Georgia, near Fayetteville and Jonesboro, while my paternal grandparents lived in Massachusetts, near the Rhode Island line. That is, that's where they were living when I knew them; they'd lived other places earlier in their lives (all in North America, though). #187 Lawrence Kestenbaum(polygon) on Mon Sep 15 00:40:09 2003: None of my grandparents are living. My mother's parents lived in Chicago during their working lives, but I never saw any of the places they lived there. Around the time I was born, they moved to Fontana, Wisconsin (near Lake Geneva), and lived in a smallish ranch house on a parklike piece of land with many trees. My father's parents split up about 1930, and I never met his father. His mother (my grandmother) lived with her parents before and after that, on the East Side of Manhattan, NYC, above my great-grandfather's shoe repair shop (he owned the building, which is long gone now). My grandmother remarried in 1942 and lived for many years in an apartment on Grand Concourse in the Bronx, NYC. My great-grandfather lived with her until his death in the 1960s. Later, she moved to another apartment in a complex in Manhattan called Stuyvesant Town. Still later, she moved to southern Florida. The apartment in Stuyvesant Town is the only home of hers I ever saw. #188 Todd(tod) on Mon Sep 15 02:22:32 2003: #189 Dave Lovelace(davel) on Mon Sep 15 07:53:46 2003: My father's parents lived in Wichita Falls, Texas; my grandfather owned a bookstore which still had his name some years after he'd sold it. (When I met some folks from there in the late 60s they brought it up.) My grandmother died (breast cancer) in the late 60s, my grandfather (ultimately results of many strokes, I think) in the 70s. My mother's parents lived in Kirkland, TX when I was young; at that time this was a town with official population somewhere around 10. My grandfather had been postmaster there for many years. The house did not have indoor plumbing; there was a cistern for water, & I can remember a truck delivering water to it during a dry summer. When I was maybe 9 or 10 they moved to Childress, population 10,000 or 15,000 or so. #190 Scott Helmke(scott) on Mon Sep 15 09:23:11 2003: "man pico" says that -w disables word wrap (as astartup argument), so maybe remove that from your .cfonce line with pico? #191 Brooke Edmunds(edina) on Mon Sep 15 13:49:01 2003: My living grandparents live in Tecumseh. #192 Sindi Keesan(keesan) on Tue Sep 16 09:13:08 2003: Apart from the obvious case of the house without the indoor plumbing, do/did your grandparents live very differently from you? Did they like to do things the way they did them when they were young, or did they prefer to be modern. My grandfather was certainly not the modern sort but his second wife (after my grandmother died in her 70s of a heart attack) tried to be modern. They got new bedroom furniture around 1970 (the other furniture was probably 20s) which included a couple of armchairs and a couch that stayed covered in plastic to protect them (so every sat on the old couch instead) and which nobody wanted when they died. She would wear a purple sweatsuit with the words 'World's Favorite Grandma' along with her hairstyle and earrings from the teens (they were both born around 1895). She and he were an odd match - he was a peasant type and she tried to drag him to the opera. Neither of them were ever interested in modern prepared foods. He worked as a baker, and before that a suitcase maker. He made us all alligator skin belts in the fifties before that was incorrect, and knew how to sew and knit his own sweaters. In the nursing home he did needlepoint paintings. Back to topic - the second chemotherapy was entirely uneventful, none of the promised side effects, ended in 6 hours instead of 8, in a nice private room with a bed. The pharmacist heard of one other case of my throat/voice problem (the med students have been collecting cases for him) which he thinks, having checked out the side effects for all my drugs, is due to one of the chemo drugs (one that is red and turns urine pink), with onset 10-15 days after (matches mine) and the med students did not say if it ever cleared up. I come back for the third treatment in October, and only one blood draw in between. Next time I sit in a reclining chair that is too big for me in a room full of TVs. I will try drowning out the noise with a radio and headphones. This will hopefully also distract me from the mild pain in my hand from where they put the IV in a larger vein as the stuff is caustic and needs diluting. The nurse wears a plastic cover for protecting her clothing. They gave me lots of Tylenol and Benadryl in case I reacted to the drug Retuxan (Retuximab) which they just added, an antibody specific to b-lymphocytes (the cancer, but I also have other b-lymphocytes that are not cancerous and are part of my immune system, however I will remake those). They could not do that the first time because I was already having to deal with a lot of lymphocytes being killed. They say the first time went really well - my lymph cell count dropped from very high to normal. So this meant a lot less cells to reaact with the antibody and cause fever/chills or low blood pressure. Next time should be even fewer so they can infuse faster and I can be out in 5 hours. They have a little patient kitchen with juice, bagels, cupcakes and microwave ovens so we can cook lunch next time. Jim wanted to try one of everything. I have no obvious symptoms the next day other than that I slept 6 straight hours instead of 40 minutes at a time. I think I need another 2 soon. I am still hungry. The current instructions are to use the Nystatin for thrush only the second week or as needed (as opposed to previous instructions of every day for the next four months, or 4x first week 2 x second two weeks). Four days of prednisone (anti-cancer) with prilosec (protection against prednisone causing stomach bleeding). I should send Jim off to kmart for it. #193 Sindi Keesan(keesan) on Tue Sep 16 18:22:26 2003: Prednisone was available at K-Mart only in 20 mg form. I needed 100 mg/day so they sent me to the nearby Village Pharmacy which had 50 mg (cheaper that way too - it is less than the $10 which it would have cost with insurance). If possible, prednisone (2 tablets) tastes even worse in applesauce than Tylenol (2 tablets). I chased it down with milk and then bread and cheese. Only three more of these this cycle. It was supposed to make me agitated but I went to sleep for an hour instead. I don't think I am caught up yet on sleep from the hospital. My doctor friend called and said to drink lots of fluids today to wash out the chemicals. I don't know why I weight 5 pounds more than yesterday as they only gave me about a pound of chemicals, but one of them may be causing me to retain fluids. Prednisone did that to my mother but I weighed the extra five pounds before taking it. They said they infused something similar to it yesterday (which the nurse assured me was for nausea - nobody seems to agree on things). We took a stroll to the corner and the 2% grade got me very out of breath. I am about to find out the nanme of the red stuff that is changing my voice. #194 Sindi Keesan(keesan) on Wed Sep 17 09:38:19 2003: The five pounds weight gain is probably from the prednisone, as is the fact that I cannot sleep. Oh, well, only three more days of it and it is making me hungry. The other chemicals supposedly will suppress my appetite. The new drug is spelled Rituxan (generic name retuximab I think) and has only been approved for general use since 1997. It specifically targets large B-lymphocytes which display CD-20 protein on their surfaces (95% of them do, hopefully including minde). The cell makes this protein to let the body know that it is cancerous. The drug is an antibody that attaches to this protein and then the body attacks the whole complex. They started me off at Monday's chemotherapy session with this new drug, after first giving me a private room with a bed in case I had side effects which were expected to be fever/chills and swelling. They gave me Tylenol and Benadryl in case of side effects. Tylenol tastes terrible mashed in apple cause. I cannot swallow pills due to my throat problem (which the pharmacist looked up - due to one of the chemo drugs, starts 10-15 days after administration, only one other case known to him but the med students who reported it did not say if/when it clears up). I have a high-pitched voice and a very dainty cough and sneeze. There is a small patient kitchen that provides juices and cupcakes and bagels (Jim tried them all) and the cranberry juice took away the awful taste. I had no side effects other than being sleepy from the Benadryl. They kept me awake taking blood pressure readings every half hour because another side effect is blood pressure dropping. At the doctor's appointment before the infusion they informed me that my tumor (mass on the spleen) could no longer be felt (I could not feel it either) which was unexpected and very good news. The tumore was composed of lymphocytes. My blood lymphocyte count had dropped from very high to low, then back to normal (the normal count presumably being regular noncancerous lymph cells made by my bone marrow - they are part of the immune system). I am a big success but need to go through all 6-8 cycles. They will give me anothe CT scan of the abdomen after 3 cycles. I am starting to get price lists for these procedures (to be discounted by PPOM before billing). CT scan about $2500. Spleen biopsy including two $1000 analyses and $1425 for 7 hours in the recovery room about $5000. The insurance company pays all but $6500 of this. No bills yet for the hospital room (about $10,000 for 10 days) or all the test and procedures done in the hospital. They will let me wait for it to reach $6500 and pay all at once. The needle for the biopsy was only $350. The biopsy took 20 minutes. The recovery room included a box lunch (turkey loaf) which Jim ate for me and one free Tylenol. I go back in 10 days for only one blood draw this cycle, then another chemotherapy in 3 weeks which will go faster as they started the Rituxan off very slowly this time in case of side effects. I need to also take prednisone pills for four days which are keeping me from sleeping. I will post info from the web about the three chemotherapy drugs which they infused (after breakfast - the prednisone also makes me hungry). With expected side effects. #195 Sindi Keesan(keesan) on Wed Sep 17 13:32:00 2003: CHOP is the standard cancer treatment and I have not figured out the acronym as it consists of: Cytoxan (the C) - generic cyclophosphamide. This drug may cause permanent sterility. At age 53 I hardly care. My periods suddenly stopped when I got down to 103 pounds. I have not looked up other side effects yet. Adriamycin (doxorubicin) - the H? - this is the red one that stains urine pink and has affected my voice. It is injected directly from a syringe into the IV. It interferes with DNA replication and may cause nausea for up to a day (it did not for me). It causes partial or complete hair loss including brows and lashes (so far I am only losing a few hairs at a time from the head) starting 3-4 weeks after the first treatment (on schedule). I should avoid direct sunlight for a few months after the last treatment (should be easy to do in the fall and winter). The primary effect is to reduce bone marrow activity - lowers the number of platelets (which prevent bruising and bleeding - probably why I had blood in the nose) starting in about 7 days, and also reduces the production of red blood cells and the neutrophils which fight infection. I should avoid crowds especially from days 7 through 14. This will make me tired for up to a year after the final treatment. Vincristine (oncovin - the O) which is what is making my fingers tingle due to nerve damage. One site says this will go away, another that it may be permanent. If I am lucky it will stop in a few weeks (after the last treatment?). Prednisone (the P) which I take for four days as pills and it seems to be responsible for a 5 pound weight gain (fluid retention) and generally jitteriness when I want to sleep. I am about to take another one after lunch. It tastes even worse than Tylenol (in applesauce). The Rituxan is not part of CHOP. It can cause severe reactions if you are not lucky. I was quite luck and had no reactions, possibly because there are so few cancer cells left for it to attach to. I was going to look up more info on the other drugs when we started having brief power interruptions and I gave up after the second. Did other neighborhoods also have three power interruptions this week? The doses are calculated by body surface using tables of weight and height, which is why they keep measuring me. I had two syringes of Adriamycin and 500 ml Rituxan. If I had a more advanced stage of cancer (high-grade) they might be giving me enough of these poisonous chemicals that it would increase my risk of developing other cancers over the next 20 years - lung, grain, kidney, bladder, and Hodgkin's disease. These are all caused by the Adriamycin. Lunch is ready. I have to gargle with salt water whenever I eat or drink, or maybe that is only the second week. My teeth have stopped hurting perhaps due to increased immunity or perhaps due to not having to swish the thrush treatment around four times a day (the 33% sucrose). It was hurting the roots of my teeth even to drink room temperature water for a while. Adriamycin blocks topo-isomerase, whatever that is. #196 Sindi Keesan(keesan) on Wed Sep 17 18:35:06 2003: Prednisone side effects: retention of sodium and fluids (5 pounds) and muscle weakness. I did not walk all the way to the corner today. Potassium loss - I am eating lots of fruit and vegetables. Cytoxan side effects - nausea (I was lucky) and like the other drugs bone marrow depression, hair thinning or loss. I should drink a lot in the first 24 hours to avoid bladder irritation. Vincristine - abdominal cramps and constipation - drink a lot, eat fiber, mild exercise (how do I exercise when I have muscle weakness?). Tingling and difficulty with buttons. May also cause hair loss, fatigue, bone marrow suppression, reduced fertility, and reduced sense of taste. (Sort of hard to tell if I can taste things with fuzz on my tongue the second week, but this week seems fine). I also read about different grades and stages of lymphoma. You can have early stages for a long time without symptoms (stage 2 is enlarged lymph nodes in 2 or more regions, stage 3 enlarge spleen which I had, stage 4 the liver is affected - which I don't think mine was but I will ask). Low-grade is easiest to treat, I might be intermediate grade. NHL - non Hodgkin's lymphoma - affects 50,000 Americans every year with incidence increasing due to people with HIV. Epstein Barr virus may also cause it. I had a really bad case of some virus 7 years ago when the city building dept. forced us to work through the winter. Signs - enlarged lymph nodes, spleen and liver, anemia, low platelet count, infections, fever, weight loss, night sweats. I had all but the infections. They forgot to mention fatigue. Diagnopsis is by biopsy of the affected organ (my spleen), biopsy of the bone marrow (mine was not affected fortunately), and blood tests. Time to wobble back to bed. I had no trouble with buttons but it was hard to thread a needle and my handwriting has become even worse than usual (which was pretty bad). I will hold off on the next shower until after the prednisone period. I am trying to train Jim to sneeze in the other direction. #197 Weir(dah) on Wed Sep 17 18:53:20 2003: I've seen wives treat their husbands like children before, but keesan really takes the cake (DE: away from Jim when he acts up). #198 Todd(tod) on Wed Sep 17 18:59:55 2003: #199 Weir(dah) on Wed Sep 17 19:02:12 2003: Yeah, but treat dumb kids like me as dumb kids like me and grown adults like Jim like grown adults like Jim. #200 Todd(tod) on Wed Sep 17 19:04:08 2003: #201 Weir(dah) on Wed Sep 17 19:07:15 2003: k. #202 klg(klg) on Wed Sep 17 21:29:39 2003: #173 of 201 by 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) Can't remember being told to stay out of the sun by anybody except the radiation oncologist. who said to keep the skin of the target area covered by at least a tee shirt for about a year. Never had any problems. #203 Sindi Keesan(keesan) on Thu Sep 18 15:15:11 2003: I was just informed that I have intermediate grade lymphoma and it is stage IV because of abnormal lymphocytes in the fluid around the lungs. (I vaguely remember someone coming into the room where they had left a couple of bottles of it and asking my permission to take one for analysis). So Stage IV does not depend upon liver enlargement. Also that any symptoms that I have now are due not to lymphoma but to the chemotherapy. The fatigue has hit as expected. Morning nap again. I should phone if I run a fever. My temp this morning was 97.2. Jim has been sneezing and my nose is stuffy but I have until Monday to fight it off (when my resistance is at its low point). I am keeping very warm. Visits will be planned around my blood count. If it runs only 6 treatments I am done by Christmas. The doorbell just rang. Flowers from someone I have done a bunch of free translations for but had to turn down last week. (I did send them a copy of a translation similar to what they needed done for themselve and suggested that they change the names and dates and forward to another translator I know who would print and notarize the result. I did not want to make a special trip to the bank for this.) Jim will take a photo of me and the flowers and the computer I am typing at (a 486 in the bedroom with amber monitor). My sense of smell is working fine today. Roses, baby's breath, goldenrod, something purple..... ferns. Jim took three shots and went off to download (with our 60K DOS software for downloading from Epson or Olympus of which i have a copy for Linux as well - you can carry around a boot disk with the software and still have room for some photos on it, and bypass Windows and the hard drive on friends' computers. Jim uses DOS 3.3 for his boot disk as it won't recognize the hard drives on recent computers - they are too large.) Today I ordered a 3" twin size mattress topper which we can put on the harder futon in the bedroom so Jim can have his living room back. (I put the 2" model on his living room futon/couch as it has some foam padding in the middle of it already). $126 uncovered, $220 covered according to the website. I ordered uncovered at which point the salesperson said I could have a covered one (quilted, mostly cotton, with zipper) for $44 extra instead of $220, plus $20 shipping, standard UPS in stock 2-3 bus days. This is the factory. Various distributors wanted $395 for the same thing, the local store $530. The place that quoted me $130 covered revised it to $180 (higher density). The insurance might pay - only costs the same as 1/2 hour of recovery room. #204 Sindi Keesan(keesan) on Thu Sep 18 15:29:36 2003: I have asked John Perry to post the new photo of me with flowers, which includes the front of my head this time. Or you can copy it from my home directory until I delete it: sflowers.jpg. They smell nice. Time to slice and dry the pears from the orchard at the end of the street (Orchard St.). Jim is first fixing the fruit dryer (which I thought worked). #205 Sindi Keesan(keesan) on Thu Sep 18 22:52:38 2003: Jim is now washing the fruit dryer and fixing the Sony boombox which he found at the curb that needs new rubber tires for both tape decks. We did some calculations and have determined that my immunity is highest the five days before and five days after chemotherapy (but in the latter case I am tireder) and that is when people should visit, which includes his sister who is looking for a time to come visit everyone in Michigan. The calendar is now carefully labelled as to when my immune system is working. I think we have both boiled our colds out of us - Jim in the tub and me under blankets. Does anyone reading this who knows someone who went through chemotherapy know if the tiredness gets less in later cycles? I skipped today's hike to the corner. The pear tree is a slightly further hike up a slight hill. #206 Glenda F. Andre(glenda) on Thu Sep 18 23:06:31 2003: If I were you, I would remove klg from the twit filter. He has been making a lot of wonderful replies based on what he went through when he was fighting the same thing. They are very well written, informative, and supportive. #207 Sindi Keesan(keesan) on Thu Sep 18 23:19:32 2003: Thanks, I will attempt to do that. I just finally found a website that explains what the prednisone is for - to reduce the risk of allergic reactions and nausea from the other drugs. I am still carrying around 5 pounds of retained fluid due to it and expect to be very sleepy the day after tomorrow when I discontinue it (100 mg/day) judging from what happens when you take 5 mg/day for fleabite allergies and then stop (actually I think you decrease the dose gradually from something higher). I finally found mention of 'wheezing' as a very rare side effect of Adriamycin which is made by Upjohn in Kalamazoo. I have a phone number - if they can hear my much-reduced voice I might try to find out of this is a permanent condition. Difficulty swallowing is another one. There is a long article in something Jim picked up at the cancer center explaining that women feel a loss of self-esteem during cancer therapy due the hair loss (they suggest wigs) and the fact that they are not supposed to use makeup because it might cause infections, so the hospital is offering a course on how to apply makeup safely. #208 Sindi Keesan(keesan) on Thu Sep 18 23:54:36 2003: I extracted agora 167 and searched on klg but only found one interesting response from 'them' near the beginning. The advice on cutting hair short was alsready taken before my first shower here so that it would be easier to wash and dry, a day before bits of it started to come out. I have been lucky about gaining weight - the second half of the cycle my appetite returned and the prednisone for the first four days of this cycle makes me hungry. The week or so after I was discharged Jim was counting my calories to force me to eat enough though. I am trying to walk enough to prevent any clots - what causes clots? I am not sleeping 12 hours but I spend a lot of time lying down and sometimes sort of crash - can't even keep reading in bed so I close my eyes. Does thge fatigue get less in later cycles? #209 Rane Curl(rcurl) on Fri Sep 19 02:02:11 2003: Clots can form when circulation is too low. The blood ages but is cleaned up by the spleen and liver, so circulation is needed. There is more discussion of this at http://www.thrombosisonline.com/WhatIsDVT.jsp?id=100 #210 Christopher L Goosman(goose) on Fri Sep 19 11:09:27 2003: Those cassette "rubber tires" are called pinch rollers, FWIW #211 Sindi Keesan(keesan) on Fri Sep 19 11:31:57 2003: They are no longer rubber tires but sanded o-rings. Jim got the boombox fixed and likes it - good tuner that gets Toledo with the antenna up, in stereo. The tires are not the same as the pinch rollers - these are little skinny round things like square o-rings that tend to get brittle, break, and wrap themselves around moving parts, which they did here. I am trying to walk around the house, I have a mattress pad to prevent circulation loss in bed, and until yesterday I was also walking outside (and will get back to that tomorrow). I hope to make it to the orchard soon. I am also trying to exercise my legs while in bed. Other suggestions to prevent clots? SOmeone else on chemotherapy also spoke of getting clots. The doctor wrote me to use stool softeners if I have constipation. They would have helped in the hospital but our diet here contains 10 times the fiber. A large bowl of salad instead of three skinny slices of cucumber, whole wheat bread, brown rice, 10 pears a day, dates, figs. I wonder what I will feel like tomorrow when I am no longer taking prednisone - lack of appetite and the need for 12 instead of 6 hours sleep? Tune in. I lost 5 pounds fluid overnight but it comes back during the daytime - it should not come back tomorrow either. Does anyone know if Upjohn Pharmaceuticals is still an independent company? They make the drug which is affecting my voice, if so (in Kalamazoo) but Pfizer seems to be buying out everyone. #212 Joe(gelinas) on Fri Sep 19 11:41:23 2003: (The man page doesn't talk about the program's use of .cfrc and .cfonce; perhaps extract filtered out the responses? The ones I found were: 39 47 92 110 143 169 173 202 ) #213 klg(klg) on Fri Sep 19 13:03:26 2003: as mentioned earlier: Found that the effects of chemo were cumulative. More treatments=more fatigue. (Had to get handicap pkg pass in order to avoid climbing stairs in parking garage @ work. Workday dropped to 4 hrs, max.) One month after treatment began, wound up in hosp for a few days over N.Y. Eve due to clot in leg. Put on blood thinner (Coumaden) for about 6 mos. Also, wore anti-embolism stockings. #214 Glenda F. Andre(glenda) on Fri Sep 19 13:23:39 2003: Funny, I see at least 7-8 good responses from klg. And a few at the beginning that were not on topic. #215 Colleen McGee(cmcgee) on Fri Sep 19 15:53:21 2003: Her loss if she wants to lie there with her fingers in her ears. #216 Sindi Keesan(keesan) on Fri Sep 19 17:24:35 2003: Some of my reading on side effects also suggested cumulative side effects but the doctors and other people have told me that the first one or two treatments are the worst. I would not know about the first as I was so wiped out I could not have told the difference between before and after. The second has definitely made me more tired - my legs are more wobbly and I am shorter of breath. I may try two short instead of one long walk outside each day. We made it farther today than two days ago but it was not easy. I can climb three steps holding on to Jim's arm, if I put both feet on each step, slowly. Can't imagine going to work for 4 hours, as I cannot even sit up that long. I expect to feel less tired as I get back more muscle. A 20 pound weight loss is more wearing when you are skinny to start with. Klg, did you also lose muscle as well as fat? I look like a skeleton with skin. I have edited the .cfonce file and will check over responses 110 143 etc. If I cannot find those, I will try the 'ignore' program (and leave only three twits in there). #217 Sindi Keesan(keesan) on Fri Sep 19 17:31:45 2003: Responding to klg's 92: They have not decided how many cycles I need, probably 6. When my white blood cell count was at its lowest they said I should have had Neupogen on the 6th day but I seemed to do okay without it so there is no mention of it at present - maybe I won't need it. I managed without. Radiation - I did not need it, the tumor disappeared with chemotherapy - klg, where did they give you radiation? Mental effects - I have noticed my memory is not working too well so when people tell me something I write it all down (doctor's orders especially). This may be related to falling asleep in the middle of things. 'Take life one day at a time'. I am taking it in shorter stretches than that. While at the hospital I was concentrating on getting through mornings (breakfast, Nystatin, brushing my teeth lefthanded, etc., took up three hours time and energy). I will check out klg's other helpful postings when I have more energy. At about what point in each cycle does the energy level start to recover? #218 Sindi Keesan(keesan) on Fri Sep 19 17:35:22 2003: Regarding klg's posting 110 - they mentioned the possibility of a port if needed but there were no problems using a vein in my hand. They took out the PICC catheter that was supposed to be there for a few months as it might have got infected and perhaps the port might do the same since I am not doing Neupogen. I would rather be port-free. I am surprised they gave you Retuxan the first day - they said it would be too much strain on me. Perhaps you did not have as many tumor cells for the Retuxan to react with. #219 Sindi Keesan(keesan) on Fri Sep 19 20:16:04 2003: Regarding klgs posts 143 and 169. They did keep mentioning that it would be a problem if any of the chemicals got out of my vein, but they watched closely to be sure this would not happen, and picked a large vein in my hand (which hurt the whole time especially if I moved it, but not terribly so) so there seems to be no need for a port, which can cause its own problems if it gets infected. I have several hooded sweatshirts and a hooded t-shirt so don't think I will need a cap if my hair disappears. My mother (who had brain lymphoma) said her grey hair grew back in brown after radiation. I read that the new hair comes back at first in a different texture, more like a baby's hair. Most of my hair is still there, including all my brows and lashes, but I do find hairs in what I am eating. #220 Sindi Keesan(keesan) on Fri Sep 19 20:24:17 2003: I just read the last two of klg's postings and will check out lymphomajournal (which sounds familiar, I may have seen it already). Thanks for all the information. How many days after each treatment does the worst of the fatigue last? Jim is attempting to replace the 3-CD player in the AIWA with a similar mechanism that he saved from something else. The capstans differ, he says. Now we have four of these largish boombox things with CD-players (the CD-players on the other three work) two of which have incomprehensible preset schemes. We are listening to the latest, with no presets. It did a nice job playing a Mozart CD made us by ken (krj). Jim's house has only five rooms (and a basement and garage) where they could conceivably be used so eventually the overflow will go to Kiwanis. My cousin asked what sort of novels I would like to read - he says he has some good ones. I told him lightweight. Two friends from highschool and another cousin and someone we were supposed to visit in Ypsi (he is growing odd things and trying to make pawpaw wine) emailed and will try to time a visit to us instead with my highest immunity. The raccoons are flattening his red and blue corn. I admired the little patch of wildflowers that a neighbor is letting grown on the easement across the street - asters, milkweed pods. Jim wanted to pick and eat the pods. They taste like greenbeans and feel like okra when cooked. We took a bunch of them camping one year in Porcupine Mountains, in August. In September they will make better pillow stuffing than food. #221 Sindi Keesan(keesan) on Fri Sep 19 20:42:33 2003: I looked at lymphoma journal, written by someone who had it much worse than I did, in fact everyone I have talked to seems to have had it worse but got through it okay anyway, which is encouraging. The author said the fatigue let up about midway through the cycle. He did CHOP, radiation, RICE (whatever that is) and had a more advanced stage with multiple tumors not just spleen. Had to be fed through the nose, lost his sense of taste, etc. Boy am I lucky. (Also lucky that nobody in my family ever got depressed that I know of, though we seem to have a strong tendency to cancer.) Maybe I will be lucky and get more than 5 hours sleep tonight. The journal author also stocked up on books and videos. I am getting tired of lying on my back reading but can't do a whole lot else yet. Maybe in two weeks I can weed what is left of the beans if they have not frozen. Jim is hoping I will feel well enough for a science club lecture the second evening after my third chemotherapy and is surprised I don't want to get out more. #222 Reverend Salvador Dali Parton(happyboy) on Fri Sep 19 21:43:25 2003: re220: /cues theme from Sanford and Son #223 klg(klg) on Fri Sep 19 21:50:33 2003: Sorry to report the experience that after the first treatment it seemed they'd be a piece of cake. It wasn't. Remember, they're pumping poison to kill the tumor. Recovery took longer w/each tx. Went from about 175# to about 150#. Don't know how much was "muscle," since couldn't really exercise much at all. (Should prob be about 160/165. and am back up to around 175 again.) Tumor was medialstynum (central upper chest). Radiation was on upper chest & up through the l. side of throat. Tumor may have been dead, but they wanted to make darned sure, so they fried the sucker. Chemobrain- Wasn't just memory loss, it was feeling 2 steps behind in conversation. After I complained to oncologist, he referred to a neurologist, who couldn't find anything organic. Had a MRI, too. (That was my second MRI - first was for flashes of light in my eye, but drs. believed it was "migraines" (no headache, just flashes). No idea why rituxan was administered with first treatment. Seemed like it was routine. The other people who've said they have/had ports never mentioned infection problems. Yeah, new hair was very soft. Never lost 100%, though. Had fringes around the sides. (Unfortunately, was time for driver lic renewal shortly after last tx, so the pic ain't too good.) Was taking an econ class. Must have had cancer for the entire semester, but didn't know until Nov. Final exam was after 2nd chemo tx. On the way there, had to tell the drive to turn around & go back home. Too tired. #224 Sindi Keesan(keesan) on Sat Sep 20 11:49:59 2003: If you were injecting Neupogen three times per cycle you would have had much higher immunity than I will be having without it, therefore less chance of an infected port. The nurse watched my vein very closely while injecting the Adriamycin to be sure nothing leaked out. I continued to work (at home) despite symptoms from April through August but ended up bedridden the last couple of weeks while waiting for one test a week to be done. Amazing how much you can accomplish despite exhaustion. You seem to have been through a lot worse than me as I did not need radiation. Perhaps I am therefore getting lower doses of the chemicals and won't be more tired after successive treatments, if I am lucky. They say everyone reacts differently. I was a lot more tired first cycle but they say that was due to the cancer not the treatment. And I hope gaining weight/muscle will make me less fatigued, but thanks for the warning. I am considerably less tired today than the previous four days. No more prednisone this cycle. I slept from 10 to 11 and 2 to 3 and 5 to 9 and had a big breakfast. No appetite loss or fuzzy tongue yet but we both are fighting off a cold and I have an inflamed throat now - luckily my immunity is not supposed to crash until early next week. Staying very warm helps. klg, how many months after therapy ended did you continue to be fatigued? Are they doing blood tests or CT scans on you still? #225 Sindi Keesan(keesan) on Sat Sep 20 11:53:26 2003: Jim is still trying to fix the AIWA. He replaced the CD mechanism with what he thinks is a good one from another machine but it still would not spin after putting in the CD. (It spins without any CDs). I think it is an electronic problem and have asked him to put it back together so I can use the remote control on it again instead of fiddling with the SONY dial tuner (where the CD player does work). We also have about 5-10 tape decks that it would be nice to give up on to make space - won't run out of things to do while we are both stuck at Jim's house. (Then there is the mess upstairs and downstairs once I can manage stairs). I am already getting a bit tired of reading all the time. #226 R K (rksjr) on Sat Sep 20 14:33:27 2003: The Google Groups web site (groups.google.com), search-focused on the keyword "lymphoma", accesses Usenet postings thereon, some of which may be authored by the recently recovered: http://groups.google.com/groups?q=lymphoma&num=100&hl=en&lr= &ie=UTF-8&sa=G&scoring=d For your convenience I have a link to the above URL address on my site at: http://www.cyberspace.org/~rksjr/ The link is titled: Google Groups Search: lymphoma (groups.google.com) The National Library of Medicine web site can also be useful in accessing medical journal article abstracts: http://gateway.nlm.nih.gov/gw/Cmd Get well soon! #227 Sindi Keesan(keesan) on Sat Sep 20 14:56:43 2003: I don't think I have the stamina to read medical articles yet (I do a lot of such research normally as I am a science translator, including medicine) but will check out the google groups link at your site, for which many thanks. Chemotherapy seems to still be as much an art as a science. Today I walked twice as far as yesterday and did not nap, despite a sore throat which I hope clears up before my immunity drops in a few days. Jim is off picking up more food and some warm clothing from my apartment and then I will attempt to take a hot bath (sitting on and against lots of padding). The hospital charges came today (to be discounted slightly by PPOM). Previously charges for blood tests, CAT scan and spleen biopsy total about $8,000, and there will be a charges for a few more blood tests and doctors' visits and chemotherapy in a private room with a bed (another $2000?).l Hospital Inpatient Bill Admitted 08/23/03, Discharged 09/01/03 (Labor Day) Daily Room Charges Semi 3 days at 872 2616 Private 6 days at 872 5232 (no extra charge for private room if you are a cancer patient since they are all private rooms because of the risk of infection due to low immunity) Ancillary charges (procedures, tests, materials......) pharmacy 2795 drugs used with radiation 292 medical-surgical supplies 1140 sterile supplies 71 laboratory 8534 pathology laboratory 2164 diagnostic x-ray 934 nuclear medicine 932 cat scan 1201 operating room/treatment rm/other 1384 blood storage processing 1089 imaging services 1434 respiratory services 1210 pulmonary function 2410 other diagnostic services 554 Total hospital charges 33,992 (plus change) I have not quite succeeded in matching this up to what happened but it is something like: drugs - antibiotics and chemotherapy and saline/bicarbonate solution drugs - antinausea pills used with chemotherapy? (no charge for the vitamins, for some reason) IVs and PICC line dressings for above analyzing all the samples of fluid and bone (lung drainage, biopsy) X-ray of lung fluid, PICC line (maybe a few others, I lost count) nuclear medicine - the MUGS scan (which involved radioactivity) CAT scan - of chest operating room .... the bone biopsy and lung fluid drainages? blood storage processing - 3 units of blood as two transfusions imaging services - the ultrasound that sounds like whale cals respiratory services - the oxygen tube to my nose pulmonary function - ? was this the fluid drainage (twice) other diagnostic services - the blood draws? This totals about $40,000 so far not counting a few more blood draws done outpatient and the second chemotherapy session. It will cost me only $6500 plus maybe $100 for the drugs from K-mart (prednisone, allopurinol) and mail-ordered (Prilosec) and the OTC things (antifungal, vitamins). Not counting the fact that I cannot work for a while and Jim is home taking care of me. I wonder how other people manage to support themselves while sick. I have money to live on because my parents both died (my mother in 1990) of cancer and I inherited half of what they had saved. (I would rather have had parents, of course). A friend without insurance is filing for bankruptcy rather than selling his house to pay for heart surgery (only about $40,000). Maybe another $10,000 for four more chemo sessions and who knows what it will cost me over the next ten-twenty years for annual CAT scans or whatever they will be doing as followup. Eventually Medicare will start paying something. And the home nurse visit was $130 and that package of dressings could have been another $100 or more. I am saving the insurance company a bundle by not going into a nursing home for a couple of weeks after discharge from hospital, so maybe they won't object to paying for the mattress pad. The nurse herself got $20/hour for maybe two hours of her time, the $130 being a minimum charge by the operation itself. #228 Sindi Keesan(keesan) on Sat Sep 20 15:10:03 2003: The google groups link includes something about the longest-lived ferret to have lymphoma, and a cat with lymphoma, and various other semirelevant things, also someone's question about whether it is safe to take multivitamins or do they interact with the drugs. I was instructed to take multivitamins so they must be safe and I will post this information once google finishes sending me the URL to complete my signup. The hospital has a lymphoma support group Tuesday evenings. I am not yet strong enough to attend support groups. The other people posting, as usual, seem to have worse cases than I do, requiring radiation etc. I continue to feel lucky. Perhaps because I was expecting to get cancer of some sort in my fifties, considering the family history of it, and this is the easiest sort to treat. There were some articles about a cluster of lymphomas at a school in CA possibly due to an oil well, and something else about Agent Orange maybe causing cancer. I am blaming mine on low resistance due to working on the house we are building in the cold (the building dept. started pushing us to finish) and getting a really bad case of something I assumed was flu, that probably messed up my immune system long enough for the lymphoma to start. It suddenly got worse after another virus this April which probably lowered my resistance again. Viruses do that. I was coughing persistently from April through July. #229 Sindi Keesan(keesan) on Sat Sep 20 15:38:29 2003: I found an interesting article about another (new, animal-tested only) monoclonal antibody which when used together with Rituxan doubles the remission time and cure rate. It binds to proliferating b-cell or t-cells which are mhc class II positive (probably they display some protein on their surfaces) and can kill them even if your immune system is not doing well. I hope I don't need this drug 7 years from now but iut is nice to know they are working on new drugs. At the google groups link, thanks again. #230 klg(klg) on Sat Sep 20 20:34:59 2003: Strength return was pretty gradual. Delayed by radiation treatments. CTs 2x/yr. Next coming up in Nov. Dr. visits 4x/yr #231 Sindi Keesan(keesan) on Sun Sep 21 09:04:56 2003: Thanks. Looks like I will be meeting my deductible every year at that rate - $5000 for CAT scans and who knows what for the doctor. How many years does the 2x/year continue? #232 Sindi Keesan(keesan) on Sun Sep 21 09:10:05 2003: I got a few more 'explanation of benefits' statements from the insurance company. The PPOM discount is pretty good - they are getting about 50% off for some sort of inpatient care (on some smallish charges), paying $467 for something that was billed originally at $850 (diagnostic services). It does not seem particularly fair that people without insurance have to pay the full charge but the insurance company only pays half of that. #233 Tim P. Ryan(tpryan) on Sun Sep 21 09:36:19 2003: *their argument*: insurance companys pay near 100% of the time. The un-insured pay at a much lower rate. Well,duh! #234 Sindi Keesan(keesan) on Sun Sep 21 13:43:54 2003: More insurance company statements - for some things they are getting more than 50% off. I have not seen their discount for the room yet. The blood tests get discounted about 80% or more - one test was $7 instead of $70 or so. Yesterday I took my first bath in a few months, sitting on something padded that kept floating upward if it got loose. A bath is warmer than a shower, takes a lot less energy and balance (no need to hold onto the wall and I can use both hands) but still took me about an hour as I kept running out of breath and energy. It may have helped my cold, which has progressed from stuffy nose, chilly, sneezy and sore throat to blowing my nose all the time. Last cycle the blood draws showed that my imunity (neutrophils) started to drop exponentially (from 23 to 15 to 8) on the fifth day. Today is the seventh and I have thrush (fungal infection of the mouth) again and my gums and tongue and lips ache a bit and it hurts my teeth to eat and this will be treated with Nystatin for the next 12 days or so. My neutrophil count on day 11 will be about .1 then start to double (1.2 three days later). They city has returned the $5000 bond they took from us in 1994 for the house we are building and I will pay the deductible with it. They agreed that the house is now properly enclosed (it had no walls in 1994) so they won't need the money to tear it down if abandoned. It was returned to sender and came back again for some reason. We are not supposed to stop working for more than 6 months but I explained that I would have trouble working this winter. Jim is calling me for lunch. #235 Sindi Keesan(keesan) on Sun Sep 21 18:19:00 2003: Jim went to special trouble to get low-sodium sprouted grain (and lentil) bread which I cannot eat because it sticks between my teeth and I am supposed to stop flossing soon to avoid bleeding. I don't need low sodium this week, I need mush. Whatever I eat hurts my tongue and mouth and teeth. I had to give him back his crunchy brocolli and dried mushroom soup and eat baked peeled red peppers instead. (He got two enormous bags of them at market and is baking, peeling, and freezing them as treats over the winter). In Macedonia at this time of year everyone is busy baking peppers and putting tomatoes in jars and pickling beets so they will have winter vegetables. They bake the peppers over large metal pans (wood-burning?) outside and it smells wonderful, as does Jim's kitchen. He is also peeling, slicing, and drying pears from the orchard. I am not helping, my hands are shaking too much and I don't dare cut myself. I might try to peel cooled peppers later. We also bought some commercial preserved red peppers in the form of 'ayvar' which is ground up red pepper and eggplant and sometimes tomato and garlic and other spices. From Jerusalem Market. I fell asleep three times today. The prednisone wore off. Last night I got woken at the familiar hours of midnight and four am but not by blood pressure readings - some large and very noisy truck running just across the street for half an hour each time. A mystery. I also lost the fluid gain and am still at 99 pounds. This is probably the week where people claim to lose their appetite. Food not only hurts, I can't taste through the fuzz. But I don't think I have lost my appetite. I am eating less often because whenever I eat I need to brush, floss carefully, rinse my mouth with warm saltwater, and it takes too much energy. #236 klg(klg) on Sun Sep 21 21:27:21 2003: Don't know about the future CT scan schedule. Gotta ask the doc in Nov. Those CT smoothies are really good, tho. #237 Sindi Keesan(keesan) on Mon Sep 22 09:09:52 2003: You are welcome to the 16 oz of my next one. I smelled like it for 10 days afterwards as it comes out in sweat. No trucks last night but my runny nose kept me awake a lot. Can anyone who has had a cold recently tell me how long the runny nose stage is expected to last when you have an immune system? I won't have one by Thursday. Jim is still at the stuffy sinus stage - I caught it from him. He says he is tired. Today I looked at my tongue after brushing the white slime off my teeth. My tongue is yellow like the Nystatin antifungal solution I have had to start using again. Pretty persistent dyes but it seems to help some. #238 Todd(tod) on Mon Sep 22 11:24:40 2003: #239 Sindi Keesan(keesan) on Mon Sep 22 13:46:46 2003: My platelet count also seems to be down (along with neutrophils). I will switch to toilet paper for my nose too and not blow too hard rather than washing out the cloth handkerchiefs. Jim is also napping. I seem to have a double whammy on the tiredness this week but my nose has slowed down a bit. We were going to have a big excursion today to the local branch library and the bank and Kroger (Jim might leave me at the library) but I will wait for dryer weather. I am doing my hiking in the house instead, feeling sort of like a caged lion. It is about 25 feet from one end to the other if you avoid the furniture along the walls. In my part of town a block is 300 feet, or 6 house-lengths. I am walking 'one block' several times a day with no need to lie down every 50 feet (or use a walker) and then doing some very shallow knee bends. Also stretching and leg lifts. Jim's block is about twice as long and I have been to both corners and back on the same day - 24 house-lengths at a time - but it is not as level as his floor. As you might guess, I am getting a bit bored lying in bed reading. Jim heard somewhere that it averages 10 city blocks to a mile - is this correct for New York City, he asks. The dried pears were cut so thin that they are like pear chips. They came out much sweeter than the pears. The AIWA is now in pieces in two rooms. It is about 90% air and the rest contains an enormous transformer and heat sink. We could probably use it for the next block party and be heard a few blocks away. The speakers (at our one-room volume) don't sound as good as some smaller older ones in the SONY. They can probably take more overheating. Jim wants me to start climbing stairs. I can do three with help. He has an exercise bike in the basement that he was going to convert so that he could use it to grind flour (with the hand-cranked flour grinder). I wonder if I can set that low enough to use it. (Not that I can make it to the basement or that there is space for it upstairs, of course). We have a very highly padded bike seat (from JEP, who discoverd that a lightly padded skinny one was more suitable for real biking). I run out of breath quickly. #240 Sindi Keesan(keesan) on Mon Sep 22 13:51:55 2003: My pen pencil at the desk reads 'without faith there is failure'. The pen reads 'The Future is Now 1996'. The newer drug I am taking is 1997. It is not listed as having any side effects. My hands are still trembling from one of the old ones and will probably continue to do so through January. #241 Rane Curl(rcurl) on Mon Sep 22 14:29:21 2003: New York City (Manhattan) has 10 city blocks to a mile east-west (between Avenues) and 20 city block to the mile north-south (between Streets). As a New Yorker, I usually think of the 20 blocks/mile figure, as there are many more such blocks (and you can walk much further north-south than east-west). #242 Sindi Keesan(keesan) on Mon Sep 22 18:36:01 2003: Thanks, I will tell Jim. #243 Weir(dah) on Mon Sep 22 18:55:43 2003: You're welcome! #244 Sindi Keesan(keesan) on Tue Sep 23 01:38:12 2003: After the rain stopped we walked to the farthest corner of the long block (3/4 of the block which runs N/S) and then turned the corner and walked the short block and came back. Around the block would have involved a roller-coaster section of the next two blocks, which includes the orchard. Maybe tomorrow I can make it to the pear tree. I am noticing many things that I normally did not see while walking around here before. There is a birch tree and some nasturtiums. You forget there is a world outside after being cooped up inside. #245 John Ellis Perry Jr.(jep) on Tue Sep 23 11:40:17 2003: Sindi's picture with the flowers is at: http://jep.tonster.com/photoalbum/friends/sflowers Sorry it took a while, Sindi; I was on vacation last week. It looks like you're doing better, which is terrific news! #246 Todd(tod) on Tue Sep 23 11:45:04 2003: #247 Sindi Keesan(keesan) on Tue Sep 23 15:21:04 2003: Thanks for posting the photo. I don't know how you can tell how I was doing in the first photo (of the back of my head in the hospital) but yes I am feeling much better. The flowers are also still doing well other than the roses being past their prime. Jim's two rosebushes each have a few 'last roses of summer'. Did fall start today? We went on our big adventure to the bank and library, where I walked tremendous distances alone through two parking lots and then around the bookshelves and sat in a somewhat padded chair for two long. I had the list of book recommendations ready to go but ended up choosing paperbacks by people whose names I recommended that were shelved above waist height to avoid having to stoop (hard to get back up) or bend (made me dizzy): The African Queen (the book) Forsyte Saga Barchester Towers Wives and Daughters Where Angels Fear to Tread Buddenbrooks One hundred years of solitude Restoration of the Great Lakes: promise Why a painting is like a pizza. Does anyone want to try identifying the authors of all but the last two? The painting book is about how to understand modern art. I also got some videos: The lathe of heaven, A life less ordinary, Hester Street, The Lady Eve, It Happened One night, Harvey (I have seen the last three - may as well get something known good). Jim went off to Kroger's and I amused myself watching people walk in and out of the library. In the morning it seems to be primarly retired men and young women with small children. Busy library. For an added treat we stopped at the Dollar Store on Liberty and discovered their stereo cables were only $1. Kiwanis was charging $2 for used ones. They have a small hardware section, vitamins, toothbrushes, and two aisles of food. We got dried apricots and a jar of red peppers and hominy grits. It was all 1 or 2 or 3 for $1 including things marked 99 cents on the bag. Off-brand pop-tarts, jam from the Czech republic. Plus the usual candles and halloween decorations. I am sure to have sore muscles tomorrow having hiked for over half an hour. My cold is much better. #248 Sindi Keesan(keesan) on Wed Sep 24 08:29:01 2003: Despite sore legs and tremor in my hands I was able to peel peppers standing up last night for a little while. I run out of breath fairly quickly and my pulse rate goes up to 100 (from its resting low of about 90). In the hospital it was 120. If you don't exercise, your resting pulse gets higher, I think. Jim's is 160. We have Macedonian, Serbian, and Bosnian recipes for ajvar, which is made of red peppers etc. The Serbian recipe only added garlic, the others also eggplant and onion and lemon juice. The Macedonians bake their vegetables and then add olive oil (lots of it). The others fry the baked vegetables in olive oil until the mass gets thicker. We will experiment. Ajvar is only $2.50 for a large jar but all the commercial ones are made with hot peppers. You can get it from Macedonia or Bulgaria or Hungary. The skins peel well if you have an oven you can set to preheat (both top and bottom elements on) at 475 and then cook the peppers at the preheat setting, but the peppers also cook more than they did on just broiling in the broiler oven and wont' freeze as well as plain peppers. We will probably freeze some ajvar. Jim is worried about a texture change. The Maceodonians heat up the jars of it in an oven with oil on top as the only preserving method but sometimes they spoil. #249 Rane Curl(rcurl) on Wed Sep 24 12:23:25 2003: Those numbers can't be pulse rates. Are they blood pressures? 160 is dangerously high. #250 C. Keesan(keesan) on Wed Sep 24 14:44:48 2003: I meant Jim's resting pulse is 60, not 160. Today my pulse after walking was 120, which is what my resting pulse was when I entered the hospital. My resting pulse is down around 85 (lying down?). What keeps me from exercising longer is my pulse going up, I think. Amazing how it only takes a few months of inactivity to lose your ability to move. We set off for the near corner admiring how on Jim's block there are a lot of small (900 sq. ft). Cape Cod houses built out of mostly the same materials (the same two front doors, three models of window - 6 over 6, 6 over 1, 2 over 2 panes) but with minor variations in window size and placement and whether there was a front porch and of what type or a decorative gable over the front door. Jim is lucky his was the first or second, before they felt obliged to paste on unnecessary features, and he got the largest living room window (double size) before they ran out of building materials during WWII. These houses continued around the corner to the left (without a hill) so we did too. We passed what is left of a small wooded area (things turning red), looked at some larger and less interesting houses from the 50s and 60s, turned left, and made it all the way around the block past the local park by distracting my attention from my wobbly legs to more of these similar houses. I should be able to make it to the pear tree soon. Saw a catalpa tree and two climbing hydrangeas on a fence. Jim has one and they must be the slowest growing vine ever planted. His grew two feet in ten years and had its first flower this year. Fava beans (in the pod) and finger potatoes (from a friend's farm) for lunch. Delivered to the computer. #251 Mary Remmers(mary) on Wed Sep 24 18:48:56 2003: It's the anemia that's pushing our heart rate up. If your blood volume or components aren't allowing for adequate oxygenation then the heart happily pumps faster, to compensate. I'm glad to hear you are feeling better, Sindi. #252 Mary Remmers(mary) on Wed Sep 24 18:49:18 2003: Er, *your*. #253 Ken Josenhans(krj) on Thu Sep 25 20:57:52 2003: With Sindi's approval, I've started a new item in the fall Agora. Conference agora47, item 28. ( item:agora47,28 ) #254 Dave Lovelace(davel) on Fri Sep 26 09:38:06 2003: Could it maybe be linked to Health, please? #255 Joe(gelinas) on Sat Sep 27 12:04:01 2003: ("Things turning red" are likely to be poison ivy, especially if it is on the tree but not part of it.)