Dear Millie, Thank you for your kind words and prayers, always welcome.... you really are a trouper!!! I so admire your spirit and the life force that carries you forward.. I am thrilled with your news about the new therapist..and your working on your mobility. sounds like you pace your self well, plan for what you can, and deal with the unexpected ( blood sugar lows etc...) with grace. Your son being there is a comfort to me for you Millie. I hope the week ahead of doc appts, home therapy goes well.
My update for you and others, is my fourth round of steroids to help alleviate the swelling in my back post surgery which is hopefully causing my problems is being titrated down...and the symptoms are back up...never eally left. so MRI next week scheduled and a meeting with my surgeon next week as well....we will try and figure out what is going on....PT some time in the future, maybe a tense unit....hopefully the surgery was successful and the disc has not moved. that's one worry I try not to think about. In 5% of cases, the rest of the disc moves to where the removed part had been pushing...we will see what the tests show. In the mean time, I restarted sprycel, for 5 days, got my numbers back, up slightly lost a 1/2 log, but expected being off for 7 weeks......I know I am not so lucky as to have it be as slow growing as some of our peers here..but I feel blessed anyway....Oncologist felt I could go off for another 3-4 weeks safely, give back more time to heal, then go back on permanently..so I Have three weeks left off sprycel then will reuptake. Taking vitamins, and oils and good foods to support my health. Very hard to move around as it causes pain..that's the hardest part, the chronic pain part... staying positive and hopeful, ...still smiling :) thinking about you sewing and Michelle dancing and Marty's stories and photographs and .....the whole gang...to many names to mention all here but my love to all of you....it's so good to be in this togther... three more snows and then I think....we might see spring!!!! :) Beth 18's -----Original Message----- From: C.M. Houtz <[email protected]> To: cmlhope <[email protected]> Sent: Wed, Mar 26, 2014 5:45 pm Subject: Re: [CMLHope] Aniversary 13 Hi Beth Hope that this finds you better, and that your back is mending. Let me know how things are going for you. I've had good days and bad since having the therapist. I love the one that I have now, and she does everything she can do so that I can move better. I just did all of my leg and hip exercises, and had no problem, but the arm exercises aren't working as fast or as well. I think that it will take a while, but I'm trying to do the work. I had a scare this morning, I woke up and started sweating and , at first, didn't know what was going on but figured it out when I got so hot I was ready to throw my clothes off. At any rate, my blood sugar was way way to low, and I got my son up as I can't reach anything right now, and he made me a smoothie and something else, and I got my sugar back to where it should be. It's frightening when it happens, but it's something that happens every now and then. It takes everything out of me to have this happen, so I went back to bed and slept for a few hours and felt better when I got up. It's always something we have to deal with, isn't it? I do hope that your back is better. I can't imagine going through the surgery and then it doesn't help. That would be awful. Are you back on your Sprycel? Just wondering as I know you were worried about it. Let me know what is going on when you have time. My son is making supper for us. He really pitches in and does everything he can to help out. He never cooked before, and never wanted to learn, but is doing everything now. He's making my Mom's chicken fricassee tonight with mashed potatoes, frozen corn and fresh pineapple. He's cleaning two of them right now. I'd say he's doing well, better then a lot of people. I have a new therapist and love her. She is really trying to get me the use of my arms and more of my legs. It's a fight. First it was the right arm, and now it's the left, so I have hopes that they'll both be useful one of these days. I am working hard to have this happen. She won't let me over do things. She comes again on Friday. I also have a lady coming to try to teach me how to monitor my cumidin and that will save me from going out to have it done. Going out is getting to be a real problem, but I will do it. Tomorrow I have a doctors appointment and will go for that. My aid is coming about 1 1/2 hours before so she can help me get dressed. With my arms and shoulders out of commission, it is difficult for me to get dressed on my own. I'm also afraid of falling over as I came close to it the other day. I'm thinking and praying for you, my friend. Let me know how things are going. Many hugs, prayers, and 18's, Millie ----- Original Message ----- From: [email protected] To: [email protected] Sent: Saturday, March 15, 2014 10:17 PM Subject: Re: [CMLHope] Aniversary 13 Dear Millie, Thank you for your email. I am so impressed and proud of you for standing up to a member of a care team that theatens you...When we are feeling so vulnerable to begin with, it's so hard to stand up and be heard...you are a great role model for all of us. Still praying and hoping your pain leaves your body...glad you are embroidering.....great therapy for you!!! More cold weather tomorrow..but then I think a break...with warmer temps for the week ahead.....us Northerners are going to do the happy dance when spring comes!!! Will get my BCR results Tuesday or Wednesday..going back on sprycel tomorrow I think....6 weeks off Monday....will do MRI of back later this week if no improvement... I think I am just slow to heal..as Peg shared....and others...it's comforting to know that I am not the only one with the problem...wish no one suffered with it....but I am staying strong and positive....mind over body....feeding my spirit... you take care, and hi to all out there this weekend..May you all have a good week.....!!! Beth :) -----Original Message----- From: C.M. Houtz <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Mar 15, 2014 4:28 pm Subject: Re: [CMLHope] Aniversary 13 Hi Beth....I'm still praying that you are doing well, and will continue to do that. You are on my mind a lot, but we need to hear that from time to time. I've been embroidering all afternoon, and am going back to it when I finish on here. It helps me to do something and so I do. I got rid of my therapist yesterday. She threatened to stop coming and said that would end my Home Care etc. etc. She wasn't a very nice person. I was called by my Home Nurse after she left, and I fell apart, but managed to tell her of the threat to pull my Home Care and she was reported. The good news is that she won't be coming any more and I still have Home Care for a while. My arm is getting better and I will continue to work on it. I decided not to have her whatever the end results as I couldn't put myself through what she was dealing out anymore. There are good people in this world, and those who think they know everything and make you feel bad. I just got rid of the one that was causing problems. I feel so much better since doing that. You take care of yourself, and we'll talk soon. Just want you to know how special I think you are, and that I'm here to talk to whenever you feel the need. Prayers and 18's Millie ----- Original Message ----- From: [email protected] To: [email protected] Sent: Thursday, March 13, 2014 3:59 PM Subject: Re: [CMLHope] Aniversary 13 18's to you Marty. You are such a loving wonderful human being...I am thankful you are able to be here with us. Thank you for your prayers for all of us..they are returned to you...May the light you shine on all of us, continue to shine over you as well. Still praying for that kidney.... Beth -----Original Message----- From: ANGELYN ESDERS <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Mar 13, 2014 8:24 am Subject: Re: [CMLHope] Aniversary 13 Good luck to you, Marty.... I passed 13 years with CML this past December. I have complications in the kidney also. I gave my brother a kidney in 1979. Sadly, my remaining one, that has been working solo for those 35 years, is starting to decline. I am on a special diet of low potassium and trying hard to control my blood sugar in order to preserve the kidney. Nobody promised us that Life would be easy. We must take JOY in all that we do, concentrate on the positive and let go of the negative as well as we can. I firmly believe that if we are not happy then our meds are not working to their full capacity. 18's to you... Angie What lies behind us and what lies before us are tiny matters compared to what lies within us.... Angie From: Marty Gartenberg <[email protected]> To: [email protected] Sent: Thursday, March 13, 2014 9:00:12 AM Subject: Re: [CMLHope] Aniversery 13 Hi Dawn, You are a shining example of what 18's means. You are also an example for everyone to see that no matter how it effects them they are still alive because of something that was not around when I had CML. I had no other viable choice but to have gone through a bone marrow transplant almost 24 years ago. Everyone that is reading this is a survivor and should keep that in mind. I would like to bring someone up. His name is Skip, and he has had CML for over 36 years, I believe now going on 37 years, and is currently not on any TKI's but is still alive. I know him personally and I know that his mind is what is controlling his body. This man has such a great attitude that we should all take an example from him, I know that I do. I truly love each and every one of you because you are fighters which few can understand because they don't know what we all go through and still keep on "ticking". I am proud to call you my extended family. Just one more thing to say: When I read about someone being PCRU I am over joyed because of all the advances that have been maid because of all the ways CML is now being treated. Mark my words, before to long CML will be a disease that will be no more, just like Polio was once. A simple vaccine took care of that and so it will be for CML. For those that are not PCRU, then so what, because it is only a bunch of numbers and you are all still alive. Before my bone marrow transplant I was given only a fifteen percent chance of survival. I went into this but said to myself, "hey, this is only a number" and I am still here and alive. It is like the doctor telling his patient you have only six months to live, and the doctor died shortly after. Remember what I have said many times. It is your mind that can help to control your body. Try and live by that and you will be a much happier person. I am not here to preach to any of you but simply trying to help in any way that I can. As I previously mentioned, your all part of my extended family. As most of you know, I have been going through some difficult times and I have been getting so many prayers and good wishes that I just want to return it to all of you. My mind is truly helping me through every day that I live. Now you know why I end each and every post with those two numbers 18's (the symbol for life) to all of you. Marty 18's to each and every one of you. Marty On Wed, Mar 12, 2014 at 11:02 PM, DAWN RODEGHIER <[email protected]> wrote: 17 for me, been on Gleevec since it was approved in the US, I also go Monday to my Onc. I still get the cramps in different parts of the body but that's better than the alternative. From: Richard H <[email protected]> To: [email protected] Sent: Tuesday, March 11, 2014 11:13 PM Subject: [CMLHope] Aniversery 13 I have passed my 13th year with CML. Monday I will meet with my ONC for the results on my blood tests. My CBC was eactly where it should be so I am praying for good results. About a month ago I noticed a spring in my steps to coffee club and increased energy. I will report the findings after I get them. I am praying for all, and so glad Marty is feeling better and able to join on line. Richard H. -- -- [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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