The Leukemia & Lymphoma Society Community : Unanswered Threads - Tell Us Your Story

plz can someone help me

communityreply@lls.org — Thu, 19 Nov 2009 15:06:28 GMT

My husband is in hospital again, he has leukemia with excessive blastosytes pls forgive sp. He is fighting the fight of his life this time, as he was here at home, he had been receiving help we had a nurse who came here, our family dr had set up the lab to check his blood counts every other week, if he needed blood or platelets we would get a call and head up, well the last time they called he tried to shave first and got very frustrated and missed the underneath, I didn't tell him as I didn't want to upset him, I was trying so hard to get him to get dressed as they were waiting for us, well we were real late getting there and the dr familiar with us both was gone home, the other doctor became very concerned kept saying over and over how very low his platelets were and I must've asked her 20x's how low only to hear the samething oh they are so low, she said she thought he must have blood on his brain and set up a ct scan, anyhow next thing she comes in and tells me she has this doctor who is going to take over as our family doctor, I said no thanks, we have a doctor, he has been taking care of my husband for over 20yrs, anyhow she didn't seem to hear anything I said next thing I know this other doc comes in tells me she is admitting him, I asked why she said he is a very sick man, I said I know however we have it taken care of, we have a nurse set up the lab etc... anyhow she heard nothing and did it her way, I was told it was needed as he was very ill she said she wanted to put him in palative care I said no, he has made it very clear this is not what he wants. Anyway she told me he was going to unit 43 the am arrived I headed up, just so you know I have a severe problem walking I do have a walker but should be using my wheelchair now but cannot as I have too many stairs and my hubby needs me, so it takes me quite awhile to get where I am going, I arrived went to unit 43 as thats where she said he was going, I went to the desk asked how he was and if I could plz see him, the nurse looked and said I am sorry he isn't here, I said plz can you check again as they even called me just as I got home to say he was heading up here and all was well at that point, anyhow it turned out he was on another unit and it had just been remodeled so many of the elevators weren't working it took me oh so long to get there, plz forgive me I know its taking me so long but I must exsplain this part or you won't understand much of what is now happening. I get to the unit they said oh dear he is in the very last room down this hall, I remember thinking gosh that nurse looks so familiar, anyhow I got to his room, right away he said honey plz take me home, I said okay let me find out what is going on, he said plz honey I really want to come home, I said just hang in there for a few minutes I just got here and I need to find out just why your here ok. Well in walks that doctor from the night before, right off she says to my husband your mental, you sir are a dying man and refuse to realize it! He looked at her with shock and utter contempt but he didn't say anything, my blood was boiling, she then states she is going to put some kind of a (c) something or other hold on him should he mention leaving again, well then she states he has a fever of 104 plus he has pnemonia, he imediately looks at me and says awww honey I can't go home if I have a fever and I am gonna have to take antibiotics, then she says well perhaps you do have some sense about you afterall so I won't have to put this on right now afterall. Well then she walks out with her head in a huff ( I really have a great deal of contempt for this woman sorry) well a few minutes later the nurse came in, for some reason I honestly don't know why as I had not ever done this before, I said to her so has he been running a fever at all, she looks at me with a kind smile and says no as a matter of a fact I am so pleased with him, during the nite he had a slight fever but nothing real high, I said does he have any signs of pnemonia or anything, again no his x-rays all look real good, so now I am thinking hmm what in blazes is going on here. Than a nurse who has known us both since he was very 1st diagnosed back in 2002, says to me hon you got to get him out of here, I said but I can't that doctor says she will put some kind of a mental hold on him, she really scares me, anyhow he was sceduled to see the physio people the next day so we agreed we would wait and see what they said as he was having abit of problems and he knew I couldn't possibly look after him alone, okay I left as visiting hours were over. The next day they called me and said the dr had asked them to call me as they weren't able to get any answers from him, I asked why and all they said was they didn't know just he wasn't able to answer them, so I told them everything they wanted to know and went up to meet them, I just got there when one of the people came she said to him are you going to go to physio he said no, I said wait a sec, I told him they had phoned me to come and if he was able to do what they needed they were gonna let him come home so up he got and I helped him into his sweats, when we got there they saw I was in tears and having great difficulty they made notes that I had severe trouble walking, I asked why as I wasn't the patient ( i had a good idea but) anyhow they said it made a huge difference in whether he was able to come home, but he walked great for them, got in and out of bed, tub everything, sorry this is so long, well the doc there said I see no reason why he can't go home, oh he was happy to hear that, off we went, and when we got back to the unit both of us were just exausted,we fell asleep waiting for her to come and tell us he could go, in come the nurse who had told me to take him home, now she is a really exsperienced nurse, shetold me I should take him, her exact words were I don't know what kind of a game this doc is playing she was paged 2x's she knows its us and we need her to sign this form, she never replied plus now she is off hospital grounds, we both said we didn't want to do anything wrong she said no not to worry as he had been released by physio, she also told me that she had been giving him only 5mils of his pain meds 2x's a day where at home he took 80mil 2x's a day. Ok, now I am gonna tell you something reallly important, the nite before he had asked me to check with the nurses station before I left to be sure nobody mainly his oncologist had switiched him from a full resutation, incase his heart stopped, he had never asked anything like this before I said ofcourse hon, I did and sure enough he had been switched, she looked at me, and said nope I won't give him cpr, honest her exact words were he is old and he is dying anyhow so why would I as his ribs will crack I'd have to shove a tube down his throat and hook him to a ventilator, she said is that what you want, I said well I would like you to plz come talk with him, she did, he pleaded with her, he told her he was fully aware of what would happen however he wanted to live as long as possible, he especially wanted this Christmas as the past 4yrs each year something had caused us to not be able to have a tree, or turkey etc........so this was so important to him. She asked me to plz stay for abit I did, she came back in assured us both she had fixed everything he had nothing to worry about everything possible would indeed be done for him, he looked so relieved, she told me it was now in his file and we needn't worry.

Ok now part that is so terrifying to me, he was here at home as I told you when this happened, ok he had been doing well except at night, he was afraid of the nights for some reason, I kept telling him he was safe he was now home, I have found out since it was due to the change in his pain med, as this doctor now tells me he was suffering severe withdrawals, well he was fine when the nurse was here Saturday afternoon, infact she tickeled his feet he told her he was gonna put her over his knee and spank her, she lhbo and said now theres my buddy, ok she told me he should be fine, she would be back the next day I said okay thanked her and she left. A few hours passed and all of a sudden he began making odd noises and I could see he was struggling to get up, I tried oh gosh how I tried to help him to no avail, something told me something was real wrong so I called the nurses line, she heard him in the background and told me he was dying, ofcourse she scared the begeepers out of me, I hung up and dialed 911, when they got here they hooked him to oxygen and an iv, the one said I couldn't go due to walker too much trouble, I asked where they were taking him, they said the Foothills, I told him he had always been treated at the Lougheed, anyhow they took him to the Foothills assuring me his file would be transferred, the other fellow asked if I was going, I told him I so wanted to he grabbed my walker and said let's go I'd like you to come, I sat in the back with him even, I talked to him when they allowed he seemed so happy I was there, anyhow we got there for a good 15mins I was still with him,then they said they were taking him back in about 10mins they'd come get me. I am serious it was a good hour, this volounteer came out and wanted to know if I wanted an orange juice, nobody else was asked so I knew something was bad wrong,anyhow finally this grief counselour came and said the doctor wanted to talk with me, he told me he was likely gonna die within the hour, I said what no how, anyhow again with the he is old, I was angry I said he has a form that was just done that assured everything humanly possible would be done he said nope no form anywhere in his file, I said contact the other hospital as almost everyone there knows about it they all know us. He said if that was what I really wanted he would but he couldn't tell me that ICU would agree. I asked if I could see him they said the nurses were busy with him, anyhow I looked down this aisle and just knew it was where he was, there were many nurses all around him, I again had to go out, I waited at least another hour when he came again with the lady, ok he says his blood pressure is real low, his heart rate is real low, its gonna stop within an hour I am sure and I won't give him anything to help him, I said what again same argument, only this time I couldn't change his mind, however I was finally taken to him, as soon as he saw me, he was honey plz come here, where have you been, I said hang on I am coming I couldn't help it, well then this other doctor, a woman comes on, she asks me a couple of questions and she says to the nurses a bunch of things I didn't understand all I know is all of a sudden awhole lot was going on, she said no way was she going to just stand by and watch this man die if she could possibly save him, I burst into tears of sheer joy, I couldn't thank her enough, the entire ER staff was amazing so kind and caring to him,enough so that he took off his mask and told me how sorry he was for keeping me up every night, I told him not to worry about it, he said nope you go home, rest up, then honey come back exact words were and get me the hell out of here. The doc agreed saying I needed my rest too and they would bkeeping a real close watch on him however his signs were much better and if there was any change they would call me, ok I came home and tried to process everything that had happened, it was like a nightmare I couldn't believe this had happened, but now I don't know what to do, everytime I go up they say he won't survive he has the h1n1 strain, oh and btw would you give the vacination to a man you said was going to die in 1hour, he did, now he has it, okay he was here at home never once went out, so how, the only one here was the nurse. My problem is I don't know how to help him, as soon as he realizes I am there he yells at me to hurry, I go in after gown,gloves,mask, visor, anyhow he is tied to the bed, his feet and hands as he keeps trying to take everything off andout he pulled his cathitor so it is just full sheer blood, oh its difficult to see him like that, and I must have talked to 5 different doctors not one is willing to admit the form was in the file, all say he is a dying man and they won't do anything to help him, I said he is a real fighter but I am terriffied, his mother passed away in the room next door, he knows this, he gets so very upset he just keeps asking me to plz get him the h out of there, I can't as he is so ill, however I am barely allowed to see him, if I leave the room while I am there they bitch at me for wasting a gown its unreal, he has never ever said these words and he did, the am after he said honey help me, they are being real mean to me and hurting me, he has this oh my gosh bruise he didn't have before I asked him he said I told you they are being mean to me, I saw them they were so rough, his blood pressure was sky high, he has always done better with me there, I am sure he can't figure out what the heck is going on as they keep telling him how very sick he is yet they won't let me stay with him, I even called the nurse I spoke of fromthe other hospital,she appologized, said how very sorry she was they had no beds, and she said she herself had made sure the form was indeed in the file, how can I get help I have tried the legal team they say if he isn't able right now its no good, nobody will help me, they tell me they'll call each time my phone rings I just anyhow I appologize I know I wrote a book, but they have put him thru so much I feel the least they can do is grant his wish for cpr, last yr they promised him a bonemarrow, gave him too much narcotics, doctor looked at him, after he had gone thru the chemo, toured the place from the radiation to where he would be, all he says oh heck he is too weak, the chemo will kill him its canelled, I tried to tell him it was the narcotics they were giving him, he said nope its not, well it turned out it was by then too late he had cancelled, so in my opo the very least he deserves is his Christmas it means so much, I won't lie I know him so well and love him so much, I am scared out of my mind, he looked so bad yesterday, oh God when I saw his eyes, all glazed over yellow, don't know why and I could tell his nurse was big time lacking in bedside manner, it was so very much trouble if I asked her anything, oh God if I could only get him to the other hospital, but can anyone tell me how or who can help, I am his wife and honest to God they treat me like oh her again, because I asked how come one hospital says its in there, the nurse was even willing to talk to whoever on the phone oh heck no,than they said oh we feel your upsetting him, also wasting too many gowns you'll need to leave, but then they saw my coat, I said I am as I have to help him not hurt him and I know he is upset, he screams at me to get him out of here, I glanced at the nurse and said she knows thats what he wants she heard him,she just put her head down, what can I do, plz we have never ever had any kind of these problems at the other hospital, he was there almost a fulll yr last yr no problems the nurses are all great to him. I am so very scared. Plzz forgive the length of this. I so appreciate any help possible,thank-you and God Bless!

Patient to Patient in words and art

communityreply@lls.org — Wed, 04 Nov 2009 22:13:06 GMT

Roel Wielinga is a graphic artist who is published internationally in the graphic novel and comic field. After 59 years of great health he was diagnosed with AML a month or so ago. As many patients know, there is a great deal of medical information out there on the disease - and very littledetailed patient to patient communication. We have many medical researchers and staffers working with patients who have cancer, but Roel and I saw an immediate need for information and support from those who know best what fears, hopes and issues newly diagnosed patients go through - the patients themselves. As a writer/photographer, I joined forces with Roel to create a photo blog and a journal of his experience. They both present examples of the unique art Roel began to produce as he explored his feelings. We hope the words and pictures will provide insights and support for other sufferers. The photos and journal can be found at these URLs:

http://www.flickr.com/photos/marknewell/

http://www.roels-story.com

We hope the contents will help, inform and inspire. This is ongoing project so lease feel free to comment and suggest. We are particularly interested in hearing what specific issues with AML other patients would like to see written about and photographed. Future segments will cover lab work and researcher interviews, as well as documenting Roel's experience.

Pet Scans and neupogen results

communityreply@lls.org — Wed, 28 Oct 2009 02:38:45 GMT

http://http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A2=ind0910&L=hodgkins&D=1&O=D&F=P&S=&X=65E4FF37B210635C0F&Y=fmoffilmland@gmail.com&P=3711

CML

bassam_biochemist@hotmail.com — Wed, 30 Sep 2009 15:38:45 GMT

I was diagnosed having CML in 28/7/09

I am taking Gleevec since 19/8/09

I had rash on my knees 2 days ago

Is this normal?

Thank you

Another Lymphoma Story :)

srmatalon@hotmail.com — Sun, 13 Sep 2009 03:53:58 GMT

Hey Everyone,

I was diagnosed with HL in March 2008, for a few weeks I had a couph that I could not get rid of, and this might sound strange, but my legs itched really really badly, and no doctor could tell me what was wrong. I decided to go to the doctor, they did a chest x-ray and saw a huge cloud over the right side of my chest. I knew then that something wasnt right, the Doctor at the clinic sent me to the emergency room for a Catscan. My boyfriend Martin drove me to the hospital, I did the Catscan, the doctor walked into the room and told me that it looked like cancer. I started to cry, Martin looked over and kept telling me that everything would be alright. A few minutes later I had calmed down and it was his turn to have a cry, so I started telling him that it would be ok, that everything was going to be alright.

Within the next two weeks, I had a biopsy, A port implanted in my chest, and a bone marrow test (which by far was worse than any chemo or radiation I went through). My amazing oncologist told me that I had HL stage 3, and I started chemo, 6 cycles ABVD.... The doctor and nurses all told me to prepare that I would lose my hair within the first 2 cycles, I was determined not to lose my hair.... And although it did thin some, by the end of chemo no one could tell that something was wrong with me. I didnt lose my appetite in fact I actually put on weight while going through chemo, I never felt sick to my stomach... I was very tired, and got annoyed pretty easy but that was about it. I did my chemo and radiation treatments at Baptist Hospital in Miami, and I have no complaints... my oncologist IS AMAZING and so are the nurses, I have kept in contact with some of them and they were a joy to be around.

I finished chemo on September 4th 2008, and radiation 3 weeks later. My petscan in March 2009 was clear (thank god). I follow up this wednesday with a catscan to make sure that everything is still good, and I will see my oncologist on Friday for the results. I wish I could have a Petscan but unfortunately my insurance company wont approve one. My nerves are starting to flutter once again as this time draws near, I hope and pray that everything will be alright that the doctor will look at me, like he did in March and tell me "see ya in 6 months"....

Im always here to listen to those fighting HL, please feel free to send me an email srmatalon@hotmail.com. remember things arent always as bad as they seem. Be strong, Smile.... and you will be just fine....

Sam

Need advice

communityreply@lls.org — Sat, 18 Apr 2009 11:53:56 GMT

I just joined and hope that this is the appropriate place to ask. In February, 2003, a young girl, Meghan Marie Mack, earned her Angel Wings at the age of 23 months. Among the lives that she'd touched, were 4 songwriters, who joined together to write her a song. It wasn't the best song ever written, but it was from the heart.

Now, this summer of 2009, an independent film production company in Washington DC, is turning the story of Meghan and the writers into a low budget, family oriented, feature film to be called "The Shoebox".

My question regards shooting the film's finale, which will be as a Light The Night Ceremony/Balloon Resease at a local stadium. They, the film makers, are hoping to gather as many "extras" as possible to fill the stadium, and are looking for the best way to get the word out.

Please feel free to e-mail me with any advice/suggestions/contacts in the D.C. area. We would like to get his right.

Thanks

Midnite