I think of you so often Marty, I miss Zavie so..he talked to me over the phone in the beginning...and helped start me on this journey with hope and good humor....my best friend Barb, is at Moffit right now. She had a bone marrow transplant from a donor in Germany...she is 31 days post transplant... and doing remarkably well, after a very harrowing time the first four weeks...while I attribute her survival to God, her spirit, her constitution and her absolute belief and faith that she woudl survive, she had more to do on this planet..she was needed...she also had caringbridge, and she would be read the messages from people who wrote to her every day.......still is read them.....she has had over 2000 messages since she began this journey..and people's faith in her, and their words, their presence kept her alive and held her through that worst of times...Moffit has been an unbelievably positive experience for her overall..they seem to really know what they are doing there for her. I will visit her when I am able. I wanted to share this because I think, in the darkest, scariest, loneliest of times, when one feels beyond horrid, it's hard to remember that we do matter, each of us, and that when we feel this from others...feel the love.....that carrys us through....I deeply believe this... 18's Beth
-----Original Message----- From: Marty Gartenberg <wa2...@gmail.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Sat, Jul 13, 2013 9:20 pm Subject: Re: [CMLHope] That's right Beth, I always say 18's. We must all help each other because we are all in this together. Not so much me because I already traveled through this journey. However, I always try to help others simply because it is the right thing to do. Times have changed so much since I fought my battle but I wish there was a group such as this when I needed other peoples help but there wasn't then. There is now! 18's to each and every one of you. Marty On Sat, Jul 13, 2013 at 4:22 PM, <myvet...@aol.com> wrote: Well Said, Beth from greenie In a message dated 7/13/2013 2:36:18 P.M. Eastern Daylight Time, bkbar...@aol.com writes: Dear Millie and Pat and Marcie and Norm and Tom and Greenie and Judi, Suziq, and Susan, and.....everybody! all our new combers, and our oldies...too tired today to list everyone..but just wanted to say that the past week, reading everyone's post, has been truly insipiring and helpful. We are all in this together. For those who do not have family or spouses, for younger or older folks, people of all ages, each of our circumstances is different....but what we all share, cml, and it's impact on our lives, fears, , our capacities, our dreams...it's quite profound...sharing it means we are not alone and united, as witl the picture Pat sent from the conference she recently attended, it just breeds hope for improved futures, and more and more possibilities down the road...we need to buoy each other when we are down, and help each other to stay strong, manage side effects, share with each other whatever we have learned along the way....so we stay well held....in this world, and fighting this illness, there is strength in numbers. I wish everyone a good weekend. ..and Millie, those doctors are going to find out what exactly is causing what, get to the bottom of it, and hopefully you can get some relief...!!! 18's as Marty would say, Beth -----Original Message----- From: C.M. Houtz <ho...@ptd.net> To: cmlhope <cmlhope@googlegroups.com> Sent: Sat, Jul 13, 2013 11:41 am Subject: Re: [CMLHope] Hi Marcie, I am trying to get myself going today. I woke up with terrible back pain. It's always in the same area and my Onc. says that it's my gall on the left side and my liver on the right. I couldn't get out of bed, so I took my pain meds and put some heat on it and was able to get up after an hour or so. I'm still in some pain, but not to bad. I was on Gleevec for years and it simply stopped working for me. I was on 800 mg. at one point. I did have a prescription which helped to control the diarrhea and for the life of me, can't remember the name. I still had to watch everything that I ate. I found that anything with tomatoes in it was a no-no and other things triggered it too. On Tasigna, the worst I've had is constipation, and, of course, the liver problem. My Onc. still thinks it's the gall causing the problem, and neither of us will know until the biopsy comes in. I'm sure he'll do a lot of blood work on Monday to see if I'm still in remission, so I pray that I am. As far as memory is concerned. I don't feel I've lost any. I always did have good recall, so I feel fortunate in that dept. I am a loss for a word every now and then, but think that's normal for 74. It does frustrate me, but I find that if I just put it aside, it will come to me sooner or later. Usually, it's such a simple word or name. I do have good long and short term memory though, and that's a good thing. I also feel that the drugs affect my bones and muscles. I had arthritis before all of this, but the progression has been fast and now have polymialgia, which is a form of Arthritis. They do a sed rate check when I get blood work, and have me on prednisone for that. That can fluctuate from one blood check to another. Right now it's bad and I can't lift my left arm very well. It mainly affects me in my neck and arms...shoulders, etc. It's quite painful, so I just deal with it the best way I can. You are right that people don't understand. There are times I could scream at them, but it wouldn't do any good. I get told that I look good and must be feeling fine, but they haven't a clue. It is a life time thing for us, and so we do the very best that we can. It is so nice putting a face on you and the others. I am going to print out the photo's and make a small album of all of my CML friends. You take care, and we'll talk again soon. I find that in the past few days we've been able to open up more to one another and that's a great thing for everyone. Love, prayers, and many hugs, Millie -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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