Hi Marty and Beth, I ended up staying home today as when I woke up, my left arm couldn't move without a lot of pain, and I was afraid that trying to go down the ramp and having the arm give out wouldn't be a good thing to do. I'm going to reschedule, but am waiting for the nurse to call and give me instructions. My aid came, and gave me a sponge bath as I couldn't get a shower...again, the arm would have given out on me, and I can't chance that. It's somewhat better now, and I will baby it until I can use it without so much pain. I only try to use common sense so that's what I'm doing.
Hope that this finds you well today. I'm concerned about the pain you're having, Beth. I do pray that it's only temporary and each day will bring improvement. Keep letting us know how it's progressing and I'll do the same. Right now is the first time all day that I've been able to put my legs up and rest them. I need to have them up with the swelling etc. that they're having in them. I'll write again soon. Meanwhile, you have a wonderful day and I'll be keeping you both in my thoughts and prayers. Thanks for being a part of my extended family. That means a lot to me. Love, Hugs, Prayers, and 18's Millie ----- Original Message ----- From: Marty Gartenberg <[email protected]> To: [email protected] Sent: Wed, 26 Mar 2014 22:35:01 -0400 (EDT) Subject: Re: [CMLHope] Aniversary 13 Thank you Beth and Millie, Millie I want you to promise me that you will have someone there when you have to use that steep ramp. You don't need any unexpected problems that can be avoided by simply having someone there to help you. Well, so far two hospitals called me for a kidney transplant but they didn't match me. The doctor told me that he was not satisfied with the kidneys that he had harvested and he wants to find me something better. Just a matter of time... 18's, Marty On Wed, Mar 26, 2014 at 9:56 PM, <[email protected]> wrote: > Thank you Marty. I couldn't agree more...I am holding your need for a > kidney very close in my prayers. > > BETH 18's :) > > > -----Original Message----- > From: Marty Gartenberg <[email protected]> > To: cmlhope <[email protected]> > Sent: Wed, Mar 26, 2014 8:53 pm > Subject: Re: [CMLHope] Aniversary 13 > > 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 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 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 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 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 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 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 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 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 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 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 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 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.
