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Elaine and her husband Joe

E-mail Elaine

June 10, 2002

Joe did quite well today. He had his first day of chemo today. It was 1 hour of Cyclophosphamide, 1 hour of Thiotepa and 1 hour of Carboplatin. They are given him a lot of fluid & they also gave him Lasix to pee. That seems to be working. He is swishing & spitting, and swishing & swallowing medicine to prevent mouth sores. Joe is getting Zofran & Dexatron for nausea. He is also getting Reglan 4 times a day to help with his Stomach & digestive system. Joe will do all this again for 2 more days and then he will have a day of rest. Then his Stem Cells. Today was a good day. Hope it continues.

June 11, 2002

Joe's 2nd day of Chemo. He is doing well. Still taking all the meds as in day 1.

June 12, 2002

Joe's 3rd and last day of Chemo. He does have the diarrhea. They gave him Imodium for it. He did vomit twice but not bad. He is doing well.

June 13, 2002

This is Joe's rest day. He is doing well.

June 14, 2002

Joe received his Stem Cells today. 7 Bags. Got a little reaction with the 7th Bag. Joe has a terrible odor to him. The doctors said it is because of the stuff that they use to freeze his stem cells with. But other than that he did well.

June 15, 2002

Joe is still dealing with the diarrhea. The nurses are giving him Imodium for his diarrhea. He still has the odor from his Stem Cells.

June 16, 2002

Joe needed 2 units of blood & 2 Platelets. This diarrhea is really taking a toll on Joe. He is getting disgusted. The odor is getting better.

June 17, 2002

Joe's WBC is .1 He is very tired. Still dealing with diarrhea. Has a slight fever of 101. They gave him antibiotics and it brought the fever down. Had an X-ray. It showed that one of his lungs was flatter than the other. He has to do that breathing exercise to strengthen his lungs..

June 18, 2002

Joe is doing ok. He is still really tired. Try's to eat but does not have an appetite. His diarrhea is getting better. The doctor wants him to do the breathing exercise more often to build up his lungs or he can get pneumonia. He's lost only a couple of pounds so far. So that's good. Had to have platelets. His was down to 8. Every time he blew his nose a little blood would come out. I told him not to blow so hard. He did walk around a little but was not to steady on his feet. All in All he is doing well.

June 19, 2002

Joe is doing well. His WBC is still .1. They still want him to do the breathing exercises for his lungs. He doesn't do much walking he is still not steady on his feet. He does vomit once in awhile but not to bad. He is on Zofran. He did eat some chow mein but not much. His appetite is terrible. I cannot believe that they are letting him eat food from outside the hospital. The doctor said he wants Joe to eat anything he wants. His diarrhea seems to be doing better. He is still on Imodium. I asked about Lomotil and the nurse said that they try the Imodium first. Then if that doesn't work they will switch to Lomotil. Joe is holding steady at 165lbs. All in all I think Joe is doing good.

June 20, 2002

Joe was having a bad day today. He had a low grade fever 100.3, still had the diarrhea & his WBC was still at 0.1. He did walk around a little today. His appetite is still terrible. Joe's weight is still at 165 lbs. He was also very snappy with everyone today. I think that he is getting depressed with everything. They are going to send in someone to talk with him which I thought was a good idea. Nothing on the meds. has changed, he still takes the same thing as when he started. He is also starting to get a little plague on his teeth. They want him to use that spongy toothbrush more often but it makes him gag so he hates it. I keep on telling him that he is getting closer to feeling better and he says he hopes so.

June 21, 2002

Joe was very sick today. He has a 102.3 fever. They are taking cultures to see about a infection. He still has the diarrhea, and not eating. His feet are starting to swell from all the fluid that he's getting. Hope tomorrow is better.

June 22, 2002

Well nothing's change. Joe's WBC is still at 0.1. He still has the diarrhea, Feet swollen, very weak, not eating, sleeps all the time and very cranky. I have to force him to swish with the mouthwash and clean his teeth with the foam brush. The Psychiatrist came in to talk to him. They are going to change his medication so he doesn't sleep all day and stay up at night. He did say that what Joe is feeling is normal. So I guess what I'm feeling is normal also. (I just want to whack him so he will listen)

June 23, 2002

Joe's WBC went up to .2 today. I guess that's good news. He is still not eating. They are giving him bags of TPN. They said that it has protein, Calories and everything you would get if you were eating. His feet are still swollen. They gave him more Lasix. He's very crabby. He doesn't want me to work. He wants me there 24/7. I can't, I am already tired. I spent the whole weekend there. I really look forward to work. I hope when I go there tonight I will see some improvement. His mind is really messed up. He can't finish a sentence, tries to think of something to say and gets mad that he can't get it out. His fevers are all but gone. Once in awhile it will be 99.0 All the test came back negative. So they don't know what caused the fever. He sleeps all day and at night he's awake. I don't understand that. Today they gave him a sleeping pill at night. They gave him 2 bags of blood & 1 Platelet. Also Potassium

June 24, 2002

Joe is still the same. He does not finish sentences, doesn't respond to questions. He is almost the same way as when he had ICE, but without the hallucinations and outburst. The good news is that he doesn't have a fever and his WBC is .3. His diarrhea is better. Not so often. We noticed a rash on his stomach tonight. They are just going to watch it. He is still on 3 antibiotics, Lasix, fluid and the TPN. He had platelets today. His feet is still swollen. All he does is sleep and they haven't even given him a sleeping pill. I hope this isn't going to last forever. I hope he comes out of it like he did with the ICE.

June 25, 2002

Joe is the same. Needed Platelets. Had a Cat -scan. They stopped some of his meds & the TPN to see if that would help him come out of it. He has to wear depends because he can't control when he goes to the bathroom. The doctor did say it could also be a reaction to the Chemo Joe received. His WBC is up to .5 I hope it goes higher so he can stop some of the antibiotics. I think that might be doing it. The doctors are trying everything they can to figure this out. His feet are still swollen, & the rash is better. When I am home working and every time the phone rings I wish it was Joe saying Hi Hon. Maybe today.

June 26, 2002

Joe is still the same. They are going to do an MRI of his head to make sure nothing is wrong. They stopped all his meds today. Joe is only on Flagyl & Diflucan. He is still getting fluids but no TPN. He did recognize my daughter on the Phone & said I Love You. So that is something. They also said that if he doesn't come out of it they may want to do a lumbar puncture. I said not until his platelets are better. I really don't even want them to do that. With Joe's record something will go wrong. I told the nurse that I thought that all the antibiotics were making him like this, that I am happy that they stopped giving it to him. Well we will see in a couple of days how he's doing. His WBC is 1.5 That is some good news.

June 27, 2002

When I went to the hospital after work, the doctor said that Joe was bleeding clots. That they thought they would have to do a EGD. I was scared. With Joe's track record I was afraid something else would happen to him. The doctor said that they would watch him during the night and if he didn't move his bowels they would wait on the procedure. There was no change in Joe other than his WBC went up to 3.4 They did take a cat-scan of his abdomen to check on his organs to make sure they weren't bleeding. All was fine. The best news is that the spot that he had in his abdomen since 98 that they thought was a third kidney is completely gone. I was so happy about that. Well tonight Joe did move his bowels, twice, and there was dark blood clots & red clots in it. Since it was mostly dark blood & a little red blood the doctor said that it was a bleed from above his stomach. Joe would have to have the test. Joe needed 3 units of blood, 2 Plasmas, & 4 Platelets.

June 28, 2002

I woke up to Joe saying HI HON!!!!!!! He was coming out of it. He was still confused somewhat. But he was coming back. His WBC went up to 7.2 They did the procedure & found a lesion on his esophagus. They also ended up doing a colonoscopy and found a fissure in his colon. Joe will be fine. They are giving him some Carafate to drink 4 times a day to coat his esophagus that taste like Pepto Bismol & Prolonix. This has been a great day. By the evening he was answering the phone and starting to drink & eat soft food. Boy what a difference a day makes. Talk about a roller coaster ride. Now Joe has to build up his strength. I would be lost without this group. Thanks for being here for me. Also last day for Neupogen shots.

June 29, 2002

Joe's day did not start out so well. When they brought him his breakfast they gave him a regular breakfast. He was suppose to be on a lactose free diet, and only soft food. When I came back from getting my breakfast I asked him if he was suppose to be eating pancakes, muffin, cereal and milk. He said that they brought it to him and told him it's his breakfast. I was so pissed that I didn't question it. Well he had a bad reaction to the milk and food. He could not control his bowels. It would just pour out of him. When the nurse called the gastrologist he said that Joe is only suppose to have clear liquids, Jell-O (soft food) NO MILK! They gave Joe 2 Imodium's and hoped for the best. The stools did show old blood. That was good that it wasn't anything new. By the afternoon it had slowed down. He is doing much better now. He needed platelets again. He can't seem to hold onto his platelets. But his WBC is up to 13.1 By this evening he is going on the commode and doesn't have to wear depends. I did learn something today. I WILL question anything that I feel is not right. I blamed myself today because I told Joe that when the daycare kids have any diarrhea I stop giving them milk. I must be getting tired and not thinking straight. The only med. he is taking now is Carafate to coat his throat down to his stomach. Tonight he is doing much better. He still has to breathe into his machine everyday to build up his lungs. The nurse told him that is his ticket home. He does it every hour now. HE WANTS OUT!!!!!!!!

June 30, 2002

Well Joe's BP is down to 140/92. Not great but better than this morning. He was very disgusted today. He had the diarrhea all day again. It is just liquid and blood. The gastrologist came in to check Joe and said that everything was all right. Joe just has to heal the fisher in his rectum. If it doesn't heal the doctor will put Microfibrillar Collagen Hemostat (Instat MCH) on the fisher to help it clot. He wants Joe on just liquids and no Milk products. Joe's feet are swollen bad. The nurse just took blood work to see how his blood is. Joe received 2 units of blood and 2 platelet today. Joe is on no medication what so ever, and hasn't been for a couple of days. He just receives his fluid everyday, and drinks a small dose of Carafate (Looks like Pepto Bismol) 4 times a day. If it wasn't for the diarrhea Joe would feel great. He just wants to start eating regular food, start to walk and go home. Maybe tomorrow will be a better day. They gave him 2 Vitamin K pills.

July 1, 2002

Joe did very well today. He finally went for a walk. Joe went up and down in front of the nurses station 3 times then when he seen that he felt good he went around the BM unit 3 times. He felt really good after. His feet are still swollen but maybe will go down now that he is walking. His diarrhea is better. Not too much blood anymore. Joe finally got to eat some solid food tonight. He couldn't eat much but had some chicken, mash potatoes & pudding. I talked him into trying the Boost Breeze and he seems to like it. He said that it tastes better than the milk Boost. His WBC is 11.2, Platelets are 16 so Joe did need 1 bag of Platelets. He is still on the liquid IV but they are reducing it everyday to wean him off. Today Joe had Carafate 4 times a day and 2 Vitamin K tablets. His blood pressure is still running high but they are not to concerned. Tomorrow they are starting him doing some therapy. That will get him moving more and I hope that will help bring down his BP. So finally Joe had a good day. Hope tomorrow brings more good news.

July 2, 2002

Well if it's going to happen, it will happen to Joe. He had his breathing treatment today and had a reaction. After he was finish he couldn't breathe. They had to put Joe on oxygen. He had to have it for about an hour. The doctor said that sometimes this happens after a treatment but it's rare. Joe has had this treatment many times before and never had a problem. Other than that Joe is doing very well. He is eating pretty good. He just wishes that the hospital food was better. He still has swollen feet. He did need another unit of platelets. They are still given him Pantoprazole Sodium 40mg. in his IV at night for his stomach. The only time that he is hooked up to the IV pole is when he receives meds. He needed 2 tablets of magnesium. Joe is doing great walking. He walked around the nurses station 5 times this afternoon, and 6 times tonight. It did make him very tired. The therapist gave Joe some exercises to do while he is in bed. Joe is so determine to go home soon that he is doing everything they tell him to do. His diarrhea is gone. That's a big plus. He use to get so depressed when he couldn't stop going.

July 3, 2002

Well Joe came home today. Other than being swollen he feels good. His weight is up to 194. Of course that is mostly fluid. His WBC is 6.2; he needed platelets before he came home. His counts were 15. His meds. for home are Protonix 40 mg. & Carafate 10 ml. both are for his esophagus & stomach. He also has to take magnesium & potassium tablets. He will have to go back Friday for blood work. They said that he would probably need Platelets again. If it wasn't for the platelets Joe would be doing great. I couldn't believe it when he called me and told me he would be coming home. What a surprise.

December 27, 2002
Sadly Joe lost his battle with lymphoma today. He died peacefully surrounded by many of his family members and friends. My he rest in peace.