Dear Beth, I am sorry to hear about all that you have been going through. Not only is Millie a real trooper but so are you, if you haven't realized it as yet.
Actually everyone on here is a trooper for what they have to endure but just like the Ever-Ready pink bunny does, he just goes on ticking, and so does everyone else on here. I must say, I have been involved with many CML sites but never one like this where everyone helps support each other. It is like a family helping each other, and I am glad to be a part of it. 18's Marty On Wed, Mar 26, 2014 at 7:16 PM, <[email protected]> wrote: > 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. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > > > -- > -- > [CMLHope] > A support group of http://cmlhope.com/ > ------------------------------------------------- > > You received this message because you 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