The Leukemia & Lymphoma Society Community : Thread List - 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!

17 years old, cured at the age of 7, still has a problem

communityreply@lls.org — Tue, 17 Nov 2009 03:12:59 GMT

Hi, i am a teenager who was cured from acute myeloid leukemia at the age of 7 after a year and a half fight. I never had second grade and miss most of my 1st grade. Now I am one of the most intelligent guy at my school. I only have a problem which I don't know if it is related to the decease. I haven't grown up since I had 13 years. Not a bit. If you check my photos form 4 years ago, you wouldn't think that that photo was taken 4 years ago. I even have a healthy younger brother (15), who everybody says he is way older than me. I don't know if this has something to do with the decease. I eat tons of food each day and still I don't get over the 85 pounds. If someone knows a case similar ot mine, please write back.

1 year ago......

communityreply@lls.org — Mon, 09 Nov 2009 17:25:38 GMT

November 7, 2009. One year ago today I sat in the ER at Cardinal Glennon with my just turned 4 year old next to me as a doctor told me worse case it's leukemia.

I took Haidyn in the morning to our pediatrician because she had a cold for 3 weeks with ear infections, complained of stomach and shoulder pains, was tired and very pale. I thought it was just a virus and she was anemic. Our pediatrician sent us to Cardinal Glennon for a chest x-ray that came back great and blood work that wasn't so great. Her white count was in the 90,000s and normal is 5,000-14,500. We were to be admitted and sent to the ER.

My husband Ben was headed over when they gave me the news that it was indeed leukemia. I kept my composure with little tears in my eyes as not to break down in front of Haidyn. I didn't want to tell Ben until he got there or my mom. Tammi, my sister, knew and she told my family. They were all headed down too. Haidyn had her first IV put into her left hand. It rested on a pillow as she called it. Ben was near, so I left Haidyn with ER Nurse Doug, who was awesome, and I went to meet Ben. I walked out of the ER doors as he was walking up and all I could say was "it's worse case". I remember the look on his face and he said "they already know". We hugged and cried and then went back into the ER where our sweet girl was and he grabbed her and held her. I remember this all vividly and now exactly what we were wearing and what kind of day it was. It is forever etched in our head. Haidyn didn't know what was ahead and neither did we. All I knew is that my family fought cancer once and we will surely do it again!

We were taken up to 4North at Cardinal Glennon which was to become our home. So much was thrown at us, I couldn't even rememeber which nurses we were first introduced to. We have since come to know them all very well. Dr. Bhatla, Haidyn's oncology doctor, sat us down to talk to us about options, the type, percentage of survival, what would happen in the next few days. It was scary, not my baby! Papa and Nana arrived soon after. I think Papa was going well over 80. Joe and Tammi (7 months pregnant) were soon behind them. The life specialist hooked Haidyn up with things to do and was great with her.Macie came over to see Haidyn's room and have dinner. Her life was changing now too.

Saturday Haidyn had her first spinal. Joe, my brother-in-law, stood in with her as it was too hard for me and Ben at the time. Now it is just a routine thing. She also had a PICC line placed into her right arm. She was brave.

It was a worldwind time. So much thrown at us. My parents took Macie, our younger daughter, to stay with them at Tammi and Joe's for the week. We knew she'd get the attention that she needed. I took off work for the next 2 months at least. Ben and I stayed together by her side every night for the first week. The next week we tried to get back to a little normal with Ben going back to work and Macie going back to Ms Amy's to be with her friends. Grandpa and Grandma Louden came up to spend this week with us. They relieved me at the hostpial and spent time with Macie giving her the attention she needed. Macie is a Mommy's girl so it was hard for her not to have me. Her and Daddy bonded.

After 25 nights at the hospital we went home December 1st. On that Friday, December 5th, Haidyn had her port put in and that would become her line for all her chemo. At this time we also got the news that she had 0% cancer in her body! Joyous!

Now we are a year later, about 58 nights at the hospital, over 100s of chemos in her body, many spinal taps, so many blood checks, we are here. I worried so much about her hair falling out that first month and it took a while to do. It fell out this past June and is growing back blond again and straight. She's beautiful with or without hair!

Ben took her for her treatment last Friday and her ANC is 3080! That is the highest it has been in a year! She is thriving and doing great!

We are so thankful for our doctors, nurses, friends, family, strangers, jobs, the girls' teachers and school and everyone who has helped us through this past year. It has not been easy but we are at an awesome point now. Today we will celebrate Haidyn's 5th birthday along with her 1 year diagnosis. We have a beautiful day and big girl who is doing so well.

Thank you GOD!

My Life with Leukemia

communityreply@lls.org — Wed, 23 Sep 2009 23:04:43 GMT

I swear they say you'll never forget the day you were diagnosed, and they are right I never will. It feels like as if it was yesterday. It was on a tuesday at college and I just wasn't feeling right something was really wrong. After I left the class I went to go babysit for my moms boss, well as I was driving there I was really getting sick so I figured I would stop off and get a milksake cause cold drinks always help me feel better well it didn't go as I planned. When I got the house the father said the toddler was sleeping and that he should be up in an hour or so, I was like ok. Well he then left and I went and sat on the couch watching some t.v. and all of sudden the kid started to cry and as I went to walk up the stairs I got severly light headed and dizzy and got extremely sick to my stomach on top of that I could barely walk on my right left it my knee was hurting me severly. So so as I approached the kids room I almost blacked out and got sick to my stomach so I ran to the bathroom and sat on the floor near the toliet. Then I decided to go the sick to drink some cold water which helped out very much. Right then in there I was like I can not watch this kid, so I called the dad and said you need to come home something is severly wrong with me. When he arrived home he was concerend about me and asked did I need a ride home instead of me driving, I said that I would be fine I am going to go to my moms since she lived only 10 mintues away from where I was babysitting.

Well I called my mom to let her know I was going to be at her house, and that I wasn't feeling to well. When I got to her house I went straight up to her room and passed out! My mom had then come home and woke me up and felt my head and said I was burning up. We took my tempature and it was 102.5 we immediately paged the doctor. We paged too doctors my allergist and my regular physical, well we only got one call back and that was from my allergist. She told me to come in on thursday at 11:30, she was not opened wednesday so I could not go in the next day. She perscribed an antiobotic until I saw her to bring down my fever. Well me and my finace went in on thursday to see her, we were there before she was and when she came in I was seen right away.

When I went into see I told her everything that was going on, I had a rash from head to toe, I had lumps all along my jaw line behind my ears in my head, my teeth hurt to brush or eat, my left wrist hurt to use, my right knee hurt to walk on, and I was severly tired. As I told her all of this she hmmm. Then she said I want you to go right now and take these blood test. So we left her office and I went and got the blood test. The test had to be done in both arms two tubes taken from one arm and two tubes taken from the other arm and this was about 12:00pm on the January 13th. Nothing could have prepared me for what I was about to hear 4 hours later at my home over the phone from my allergist. When my cell phone started to ring and the her number came up I started to freak out I was ok this is not good. As I answered I said hello and she said Jessica I don't know how to tell you this but you have Leukemia and I was like I have what???? She repeated again and said she had some things she need to discuss with me and I said I can't talk to her right now, but that I would call her back. After I got off the phone I looked at my fiance and said I have cancer and broke down and started to cry. I couldn't believe anything I had ever heard about Leukemia was that you died, so I figured at the age of 19 my life was over. I just started to live! I told my finace we have to go see my grandma we need to leave now. I said I need you to drive I can't

We got into the car and left for my grandmas work as we arrived only 4 blocks down from where we lived. As I got out of the car I had to pull my finace out of the car because he was so upset he couldn't get out of the car. As we walked in I couldn't keep my composer. I started to cry again and I said grandma I have Leukemia I have cancer. Now by this time we had already dealt with my mother and breast cancer but it was light and not too bad she only had 4 chemo treatment, and then 6 months earlier my grandpa just covered from prostate cancer, he just need surgery thank the lord. But I, I was the worst. As I looked at her I said can you call my allergist I can't talk to her right now I am to upset. My grandma called my allegist and she explained that an oncologist would be calling me not just any oncologist a pedatric oncologist. I was going to be going into the children's hospital because I was under the age of 21. So now we had to wait for this oncologist to call us. My grandma got off of work at 5 and lived 3 blocks down from work as we left and drove to her house I got a call from the oncologist saying that they were getting a bed ready for me in the hosptial and that I was coming in that night and that I would have some test done. He also said that they will be calling me when the room is ready. Until they we sat at my grandparents house until we go that call. We told my grandpa what was going on and no one could eat. The look on everyone's faces was so painful.

As we sat and wait we called my mother and said don't call anyone else until we know for sure what type of cancer your daughter has. But of course my mother had to call my aunt and how we knew about this was when she pulled into the driveway and said to me humorsly what the hell Jessica don't you get enough attention and we all started to laugh. Wow we need the laugh. Then my parents pulled up and all of sat there trying to figure what type of Leukemia I wanted to have so I could survive this. We were looking in every health book.

Well at 8:00pm I finally got the call to go into the hospital and all of us went to the children's hospital together. When I got there my room had a crib in it because they thought that I was 19months old and not 19 years old so we took pictures of it until they got me a bed and we laughed about it. We all had to laugh at something. When I received my bed I sat on it and all of us waited until the doctor came in. No one wanted to leave until they knew what was going to happen with me. When the doctors came in they said they were going to start the chemo that night and 12 hours later I was going to have a bone marrow and a spinal tap I was like ok sounds scary. But it had to be done in order to determine what type I had and if it was in my head and spine.The doctor continued to fill us in on how the treatment was going to go I was going to have 8 months of heavey induce chemotherapy and 1 1/2 of maintence. The also said there would be a protocol I would be following as well. I had a few questions of my own and of course they were am I going to lose my hair, will I be able to have kids and can I still go to school. They said I will lose my hair, I should be able to still have kids, and I should stop going to school because the chemo was going to bring me down.

After they explained everything they left and my family eventually left around 11:00pm. But were there bright and early the next day Including my fiance who stayed the night in the hospital with and never left my side. Early that moring which was Friday January 14, 2005 the oncologist and nurses came in and said we are hear to take you to get your bone marrow done and spinal tap and I was like oh goody. Well after the test were completed the oncologist came later that day with the results and said I had Acute Lymphocitic Leukemia and that my spinal tap came back inconclusive so that meant I had to have another one to determine if it was in my spine or head. This also meant that if I would have to have raditaion done to my head and it also meant I had to eat so I was practically going on 24 hours of no food! Later on it turned out I did have to have the radition.It was a long hall I also had to have surgery to have a port put in so I could get my chemo and they could have my blood. I got to go come that sunday but I had to be in the clinci monday morning at 8:00am for chemo and another spinal. I had a hard time with my spinals and bone marrow even though they gave you drugs to sort of know you out and help you forget the pain, I managed to be awake for almost all of them. Let me tell my second bone marrow I had went horribly wrong and the oncologist was going in and out of my hip a few time and was getting blood everywhere in the room. Now that one really hurt.

When I started my cheomtharpy I never thought it would bring me down as bad as it did.

I will continue this in another blog. My story is really long sorry. But I have a lot to say that happened to me

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

My life w/ Leukemia

playagurl418902004@yahoo.com — Tue, 27 Oct 2009 18:31:06 GMT

My name is Norma I am 19 yrs old i'm in my 2nd stage i started a week ago i go 2 my treatments 4 times a week i use 2 go once a week. I didn't understand why this had happen 2 me but i'm gettin though it.My Leukemia has to do w/ white blood cells. When I go outside I have to wear a mask b/c if someone is sick I could get what they have and go back to the hospital and trust being in the hospitla Sucked really bad. B/c I was in ICU for a week then i was in a normal room. The food it was good I order what I wanted but nothing is better then Home Cook Meals. The 1st night I was in the other hospital my older brother brought me Snoic I ate that hambuger like i never ate a hambuger before. But I really miss is work and school, I mean I was starting my Freshmen year of College and wanted to do what other college things. The doctor says that my treatment will take 4 2 and half yrs. Atleast I have freinds and family that are helping get though this b/c w/o them I don't know where i would be having this love and support that I do. i like this hospial b/c when i get my bone marrow and spinal tabs I am alseep but in the other hospital i was in I was awake and it hurt i was screaming @ the top of my lungs I scream so loud that I nurse though I feel off the bed I was still in ICU when the doctor was doin they bone marrow i had to stay still 4 an hour.

My road from chemo to alternative: Non Hodgkins

communityreply@lls.org — Mon, 21 Sep 2009 18:00:47 GMT

I was diagnosed with Non Hodgkin’s Decease - cancer of the nymph glands. What I experienced and discovered in my journey this year may be of value to some.

I had three chemo treatments and all of them was like visiting hell and staying there. I got all of the side effects in the book. Then to add insult to injury, I used Duragesic patches for the severe pain - these are patches you put on your body and the active ingredient are released through the skin over a period of 3 days and is about 81 times stronger than morphine. They are very addictive and I have been using it for about 6 months. So in short I were addicted to them and when I come down in the strength it had severe side effects. It’s like being on LSD.

At the same time I was diagnosed the dad of a person that works for me, got cancer at the same time as I did. He had stomach cancer and was given 6 months to live. The only alternative they gave him was to remove his whole stomach and with no stomach you cannot live. He by chance heard about a lady that was treating people with the Rife machine. He had 10 treatments and thereafter he had a scan and they went down with a viewer into his stomach and they found no traces of the cancer. The doctors could not believe it and had all sorts of excuses but refused to accept the fact.

I contacted this lady and she gave me four treatments on the Rife machine over a period of a week. Thereafter I went for a pre-arranged scan and blood count to my chemo doctor. The cancer tremor that grew aggressively and cracked one of my ribs in the process was nowhere to be seen. It disappeared completely. The doctor could not believe his eyes when he read the scan report. He responded by saying that although we cannot see the cancer it does not mean it is not there. The blood counts showed excellent figures far beyond what was expected. Especially my immune system figure was way beyond the expected because the chemo treatment is focused on destroying the immune system in order that the body can produce new white blood cells that are healthy. The bottom line is the Rife machine did indeed cure my cancer.

To be sceptical about alternative cancer treatments are normal because there are many on the web that makes outlandish claims that are all false. I have spent months on the web investigating all of them and found that the most is hogwash.

The Rife machine is something all together different. It can not only cure any type of cancer but aids and many other deadly deceases. It can also kill viruses. Remember it is the principle that works. Each cell and virus has its own unique frequency. Once you have the frequency you can either kill or modify that cell or virus. With the cancer cell the inside that contains the cancer, is killed and the cell then changes to a normal healthy cell. Cancer is caused by a virus and the Rife machine kills this virus as well. It thus kills the cause of the cancer, that which normal medicine cannot do. In a normal healthy body the body is in balance with the cancer cells in the body. When the cancer cells became more than the body with its immune system can handle, than your typical cancer manifest itself in one organ or another. To bring the body back to its balance the cancer cells must be reduced by making them normal cells again, the virus producing these cancer cells must be killed, the immune system must be repaired to its full strength and lastly all these toxic waste created must be removed from the body. If you do not do all four success is not guaranteed.

Lastly. All of this was discovered by Dr Rife in 1930 and he showed and proved it in practice by curing 12 of 14 cancer patients that conventional medicine wrote off to die. Later the machine also cured these two. Then several general practitioners bought his machine and started treating patients also with 100% success rates. This is when the medical authority and large pharmaceuticals in the USA stepped in and drove Dr Rife and his machines out of existence. If a simple machine can cure you, all of them would be without a livelihood very soon. Thus they instead opted that many millions of cancer patients rather die than them losing their money. Read the full story on the web. In the 1970’s scientists rediscovered the Rife machine and were only able to rebuild it in the late 1990’s. Since then this machine was improved to the product we have today.

A long story but a critical story because lives are dependent if you believe it and have the conviction that it works or not. I know it works because it worked on me and another.

My search for Cause & Cure

communityreply@lls.org — Sun, 25 Oct 2009 13:16:15 GMT

I'm newly diagnosed with stage 3 Follicular B cell NHL. It's only been about a month, yet in a way it feels like forever. I never enjoyed one moment of denial, past the point where I decided to have my suddenly swollen neck looked at. I allowed myself to rationalize it could be my thyroid, but I suspected it was lymphoma imediately, when I'm honest with myself about it.

This past year has been extremely difficult emotionally and even those stresses had been building and multiplying for so long, that my cancer seems inevitable, even logical, in retrospect. That's not to say my "case" doesn't seem particularly ironic, because it does! I'm young, at 54 and have always lead a healthy, natural lifestyle, with youthful energy and appearance, until the last 5 years, when circumstances and I do mean everything, really began to take a more noticible toll.

My husband and I lost the 5 year old grandson we had raised since birth last October 13th. My oncologist thinks I had probably been dealing with undetected indolent lymphoma for a "long time". But I know I just couldn't afford to get sick while being the 24/7 caregiver for my beloved, medically fragile boy. When he suddenly died, without any warning, I was so shocked and wounded with heavy grief that my immune system finally lost it's precarious balance and the lymphoma turned aggressive. There is no doubt that a large part of myself seemed to die with my little boy. No matter how improved my emotional state became, over the months since his passing, the initial, intense pain with it's undeniable, accompanying, death wishes, was plenty sufficient to accelerate any slow growing cancer lurking inside me.

That is the most condensed description of the cause, that I can come up with. I've never smoked or done any particularly hazardous work. I've been health conscious and eaten a mostly vegetarian diet, since I was 16. I've exercised and stayed slim and taken only the best supplements and always been way ahead of the curve with applying nutritional information about fresh, organic, whole and natural foods. Of course, I'm even more careful now and hoping to fight this cancer with natural alternatives.

Ironically, my most nagging emotional issues now, mainly stem from my holistic beliefs and my distrust of WHO, AMA, FDA and Big Pharma.

My husband, of almost 29 years, is on the same page and supportive of my decision to turn down chemo, although some of my family and friends have not been so convinced.

I am scheduled to undergo immuno-therapy with the mono-clonal Rituxan alone, instead, together with everything alternative and complimentary that I discern to be most synergistically important. It's a huge undertaking, but I want to take responsibility for my own health and healing. I never was the type to blindly trust any so called authority and the longer I live the more reasons I discover not to!

So, I'm seeking support and information about ALTERNATIVES!

Thanks

Heather

The Life I Was Supposed To Have

communityreply@lls.org — Sat, 24 Oct 2009 02:25:56 GMT

My name is Jewell Ridley and I am a 25 year survivor of leukemia (ALL). I was diagnosed in October 1984 at Cincinnati Children's Hospital. I was 17 years old and had just begun my senior year of high school. As I browse through some of these stories, I realized how truly blessed I am. By God's grace, I barely remember anything about my treatments and the doctors and nurses basically kept me in the dark about everything. My entire treatment lasted 30 months (October 1984 - February 1987) which included chemo and radiation to my brain. Throughout my treatment, I have never relapsed. I haven't seen an oncologist since 1988 - the last year the Cincinnati Bengals were in the Superbowl! I have had some setbacks during my treatments (shingles, pneumonia) and long-term side effects (total knee replacement, diabetes, hysterectomy) but overall, I have a great life. My son graduated this June from high school and I was there to cheer him on.

This past summer I wrote and published a photp book of poetry which chronicles my 25-year survival and paid tribute to my family and friends. I have also turned some of my poetry into inspirational greeting cards to give to friends and family. I hope to join my local Team and Training group this year and complete the 2010 Flying Pig half-marathon with some of my classmates from 1985. Before this year is done, I plan on turning my poetry into short stories about 'The Life I Was Supposed To Have' which is what my life has become. In the beginning, I had so many regrets and second-guessing about my purpose in this world, not certain that I should have gone through the chemo/radiation treatments in the first place. Now I realize my journey has purpose and reason. I wouldn't be who I am if I had not gone through this illness and survived it. I wrote a poem titled 'God's Hand' which describes my first year of diagnosis and treatment. My boyfriend broke up with me at that time and I felt alone and confused. Time and perspective changes everything and I am grateful to God for giving me both.

http://stores.lulu.com/jewellridley

God's Hand

Everything was perfect, I only saw me with you

But a storm was soon coming, the magnitude of which we had no clue

I have known you since I was girl, starting to come into my own

I have known you since you were a boy, now your tall dark and strong

I thought nothing could come between us, we breathed the same air

You had my back like no other, no matter what you were always there

Every day that summer, my body slowly fell apart

Constant pain, constant tension, no explanations, no where to start

I was living in a fog of pills, pain, and prayer

No matter how many times I called, you seem to have no time to share

My weight reverted to double digits, I looked like the walking dead

My best friend came to see me, She left with fear and dread

I only found release with scalding hot water inside a tub

The pain was so incredible, couldn't even stand a hug

But nothing could compare to the pained expression on your face

When someone finally figured out what was going on with my case

The gossip mill at school said I was starving myself over you

They sent me to a therapist to see if it was true

I always knew I was dying right before everyone's eyes

But no one in my life could help me, I was certain of my demise

Because they thought that I was pregnant carrying your seed

They finally did a blood test unsure of what the results would be

Hallelujah, I have leukemia! I can put a name to this pain.

Thank God I have leukemia; Thank God I am NOT insane.

Everyone else was shell-shocked but I was happy as I could be

Although my body had failed me, my mind was still and always with me.

I knew I wasn't crazy, I knew this pain was real.

God gave me a new day, Now my body could start to heal.

I never knew the day you left me, The day you walked out that door.

Would be the last day that I knew you like you were before.

This storm cast a shadow between us, destroying everything we had

Who knew anything could come between us, I thought nothing would get that bad

You left me with a gift that I carry to this day

You taught me how to fight and let nothing stand in my way

You made me a warrior princess- delicate, powerful and strong

You taught me to prepare for any situation that could possibly go wrong

I learned so much from you, you were always my best friend

You were also my big brother, closer to me than any kin

As I continue to come into my own, I have become painfully aware

That in deed you owed me nothing, not even your time to share

This was my fight from the beginning; This fight was always in God's plan

No touch from any man could heal me, Only the touch of God's hand.

Hi

karin.k.ross@gmail.com — Thu, 22 Oct 2009 15:20:57 GMT

First of all, let me give my prayers for everyone. About 4 years ago, I had a physical with a CBC. My WBC came back high. They ran all the tests, and did a bone marrow Bx, which came back ok. I was told I had *questionable* cells. This week, I had a CBC ran on me, and my WBC is now at 18.5. A year ago, it was at 14.4. My neutrophils are at 79% which is 5 points high, and my lymphocytes are low at 16% and considered low by 4 points. The docs here don't seem concerned that my WBC have increased over 7 points in 4 years. And I am not sure how concerned I should be either.

Can someone give me their thoughts?

Thanks

Karin