Re: [CMLHope]
Yes the H is for my last name. Richard Troxel was a member before I joined so have used added the inital to lessen the confusion when I post. Richard H. On Saturday, July 20, 2013 3:55:37 PM UTC-5, millie wrote: > > *Hi Richard,* > ** > *I smile when I see you're messages come in. Don't know if the H in your > name is last name or middle, but my husband is also Richard, and last name > Houtz, so the first time I saw one of your messages, I wondered why he was > mailing me something. We both have our own computers, and there are times > he sends me messages and vise versa.At any rate, I also have a son with > the same name.* > ** > *I am also on a very restricted diet, and have trouble sticking to it. I > have good days and bad ones. When I have a bad one, I just put it behind > me and try to do better the next day as we can't change what we've already > done, and getting stressed out over it doesn't help either. I have heart > issues and have a pace maker, so shouldn't have salt. I try very hard not > to over use it, but do use it in my cooking and don't salt extra at the > table. Yesterday, I ate potato chips though and pretzels, so my legs and > feet were swollen today. You'd think I'd learn, but there are days when > you just don't care...or whatever it is. I also am dealing with my liver > issues, and that causes my legs and feet to swell also, so am dealing with > two different things that are causing the same problem. I'm also diabetic, > so I try to count my carbs and do pretty well doing that, but also have the > occasional piece of candy. I'm taking a half dose of the medication they > give me for that, so I'm doing okay most days. When you're struggling with > so many health issues, it's difficult and so there are days when you just > want to stop dealing, but I get passed that and am happy for the life that > I have...even with problems. I wish I could exercise. I do try to > exercise my arms, but lately my polymyalgia prevents me from lifting my > arms. Today is one of those days. It mostly hits you in the arms, > shoulders, and neck. I also have regular arthritis, so I'm a real mess! > I'm smiling and laughing now as it is a lot to deal with, so I just lump it > all together and do the very best I can to enjoy my life one day at a > time. I don't want to spend my life being miserable, so it's the way I > deal with it. The doctor that just did my liver biopsy, wanted me to tell > him what health issues I had and when I finished, he said"Is that > all?". I told him that is he waited 5 minutes, I might come up with more. > I had him laughing...also the nurses and myself. I felt no pain from the > liver biopsy, so that was a wonderful thing. The nurse told me that most > people dealing with all of my health issues would be miserable...but I > choose not to be. I think that we can choose to deal with our health > issues any way we want to, and I would rather be happy then miserable. I'm > not saying that I don't have bad days. I think that we all do.* > ** > *You take care and keep us posted on what's going on with you. You are > among friends hereHugs, Millie* > -- -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope]
Millie, I can just picture you making your doctor's laugh..you are a wonder..it's the small things that matter...a little thing that makes us smile...like your message..means a lot...I feel like I get a shot in the arm every time I read one of your posts..stay positive, count your blessings, find the humorthe silver lining somewheremaybe have a pity party, but not for too long..then there's life to keep on living...chronic pain can change a person's disposition, so can an abundance of illnesses all stacked one on top of the other...but not youyou remind me of a rainbow. Beth -Original Message- From: C.M. Houtz To: cmlhope Sent: Sat, Jul 20, 2013 2:56 pm Subject: Re: [CMLHope] Hi Richard, I smile when I see you're messages come in. Don't know if the H in your name is last name or middle, but my husband is also Richard, and last name Houtz, so the first time I saw one of your messages, I wondered why he was mailing me something. We both have our own computers, and there are times he sends me messages and vise versa.At any rate, I also have a son with the same name. I am also on a very restricted diet, and have trouble sticking to it. I have good days and bad ones. When I have a bad one, I just put it behind me and try to do better the next day as we can't change what we've already done, and getting stressed out over it doesn't help either. I have heart issues and have a pace maker, so shouldn't have salt. I try very hard not to over use it, but do use it in my cooking and don't salt extra at the table. Yesterday, I ate potato chips though and pretzels, so my legs and feet were swollen today. You'd think I'd learn, but there are days when you just don't care...or whatever it is. I also am dealing with my liver issues, and that causes my legs and feet to swell also, so am dealing with two different things that are causing the same problem. I'm also diabetic, so I try to count my carbs and do pretty well doing that, but also have the occasional piece of candy. I'm taking a half dose of the medication they give me for that, so I'm doing okay most days. When you're struggling with so many health issues, it's difficult and so there are days when you just want to stop dealing, but I get passed that and am happy for the life that I have...even with problems. I wish I could exercise. I do try to exercise my arms, but lately my polymyalgia prevents me from lifting my arms. Today is one of those days. It mostly hits you in the arms, shoulders, and neck. I also have regular arthritis, so I'm a real mess! I'm smiling and laughing now as it is a lot to deal with, so I just lump it all together and do the very best I can to enjoy my life one day at a time. I don't want to spend my life being miserable, so it's the way I deal with it. The doctor that just did my liver biopsy, wanted me to tell him what health issues I had and when I finished, he said"Is that all?". I told him that is he waited 5 minutes, I might come up with more. I had him laughing...also the nurses and myself. I felt no pain from the liver biopsy, so that was a wonderful thing. The nurse told me that most people dealing with all of my health issues would be miserable...but I choose not to be. I think that we can choose to deal with our health issues any way we want to, and I would rather be happy then miserable. I'm not saying that I don't have bad days. I think that we all do. You take care and keep us posted on what's going on with you. You are among friends hereHugs, Millie -- -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit http
Re: [CMLHope] Re: Hi..Susan's Life
AWESOME Susan! That was very interesting. Keep on celebrating! What lies behind us and what lies before us are tiny matters compared to what lies within us Angie From: Susan Zimmerman To: cmlhope@googlegroups.com Sent: Saturday, July 20, 2013 6:14:10 PM Subject: Re: [CMLHope] Re: Hi Thanks and hats off to Marty and Millie. I realize I am no different, believe me. You guys haven't heard much about my life, and maybe I won't bore you with details today. But I do stay busy now doing the things I love. I just was slightly paralyzed about getting going to a specialist. I knew I must do that, and have researched many around the country over the years. A good kick in the butt by you blood brothers and sisters was exactly what I needed. I earned my theology degree at age 52 (year 2000), in Florida before we returned here to Indiana in 2010. Before moving to Fla., I also have done a lot of counseling to lay people and training of leaders over the years in the Christian element. Did a lot of public speaking for seventeen years within a parachurch organization. Worked for eleven years at what I called a "social service agency" within a large church. I coordinated all the volunteers to go to nursing homes, prisons, juvenile detention facilities, etc. Planned 3 or 4 trips a year to raise money for all this. Also had a list of shut-ins that we ministered to regularly. Did visitation to the hospitals as well. Still do that! The best part was giving food to the poor through the church. I couldn't wait to go to work each day! After that time period ended in my life I was still very active going on mission trips, conducting weekend marriage seminars, and marriage classes. Had gone into selling advertising for Christian organizations to make my living after the church thing was done. Now I do a lot of studying and hope to develop some teaching classes at our church, etc. I coordinate the prayer team at our church as well, and send out prayer requests by e-mail for two organizations. As I told Marcie, I love Israel and support them in any way I can. Sometimes our house also becomes a hotel as our friends and family pop in and out. So that's what keeps me busy, and other family things as well. To begin going back to doctors regularly again is beyond fun to think about, but the alternative is simply not acceptable. I really do thank God every day for each day and love Celebrating My Life!!! Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was working on, but he only answered me about his recommendation of medication and two docs he recommended. I guess I asked him too many questions for him to answer.totally understandable. Thanks again for all the encouragement, 18's, Susan F. Zimmerman "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -Original Message- From: Marty Gartenberg To: cmlhope Sent: Sat, Jul 20, 2013 4:38 pm Subject: Re: [CMLHope] Re: Hi Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do something about them. You are no different then anyone else. Sometimes we just go through so much that we are terribly frightened to do anything about them because anything that is of the unknown always seems to frighten us. I want to tell you that you, Millie, Richard, Greenie and all of the rest of those even on different CML sites that are suffering from CML would probably not be here right now if it weren't for the TKI's that are out there now. You will see, mark my words, that there will be something coming soon that will rid you and everyone else of this terrible disease just like when the Polio vaccine got rid of Polio. Just like Penicillin and all of the rest of the antibiotics help with curing infections. I think that we all should take an example from Millie. She may have some debilitating things going on but she still keeps herself busy with making her pillow cases and shams and the like. She says that it is nuts, but is it really? She further says that, and I quote her exact words: "I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else." Enough said judge for yourself. Get doing things that you like, I guarantee that it will make you feel better. I always say that your mind is a very powerful tool, you just have to learn to use it in constructive ways. Now I'm not saying that it is going to cure you of any disease but you will feel better when your doing something that you enjoy. Isn't that what life is all about? Busy hands make happy minds. 18's, Marty On Sat, Jul 20, 2013 at 4:06 PM, C.M. Houtz wrote: >Hi Susan, > >I'm glad that you are going to get so
Re: [CMLHope] Re: Hi
Thanks and hats off to Marty and Millie. I realize I am no different, believe me. You guys haven't heard much about my life, and maybe I won't bore you with details today. But I do stay busy now doing the things I love. I just was slightly paralyzed about getting going to a specialist. I knew I must do that, and have researched many around the country over the years. A good kick in the butt by you blood brothers and sisters was exactly what I needed. I earned my theology degree at age 52 (year 2000), in Florida before we returned here to Indiana in 2010. Before moving to Fla., I also have done a lot of counseling to lay people and training of leaders over the years in the Christian element. Did a lot of public speaking for seventeen years within a parachurch organization. Worked for eleven years at what I called a "social service agency" within a large church. I coordinated all the volunteers to go to nursing homes, prisons, juvenile detention facilities, etc. Planned 3 or 4 trips a year to raise money for all this. Also had a list of shut-ins that we ministered to regularly. Did visitation to the hospitals as well. Still do that! The best part was giving food to the poor through the church. I couldn't wait to go to work each day! After that time period ended in my life I was still very active going on mission trips, conducting weekend marriage seminars, and marriage classes. Had gone into selling advertising for Christian organizations to make my living after the church thing was done. Now I do a lot of studying and hope to develop some teaching classes at our church, etc. I coordinate the prayer team at our church as well, and send out prayer requests by e-mail for two organizations. As I told Marcie, I love Israel and support them in any way I can. Sometimes our house also becomes a hotel as our friends and family pop in and out. So that's what keeps me busy, and other family things as well. To begin going back to doctors regularly again is beyond fun to think about, but the alternative is simply not acceptable. I really do thank God every day for each day and love Celebrating My Life!!! Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was working on, but he only answered me about his recommendation of medication and two docs he recommended. I guess I asked him too many questions for him to answer.totally understandable. Thanks again for all the encouragement, 18's, Susan F. Zimmerman "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -Original Message- From: Marty Gartenberg To: cmlhope Sent: Sat, Jul 20, 2013 4:38 pm Subject: Re: [CMLHope] Re: Hi Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do something about them. You are no different then anyone else. Sometimes we just go through so much that we are terribly frightened to do anything about them because anything that is of the unknown always seems to frighten us. I want to tell you that you, Millie, Richard, Greenie and all of the rest of those even on different CML sites that are suffering from CML would probably not be here right now if it weren't for the TKI's that are out there now. You will see, mark my words, that there will be something coming soon that will rid you and everyone else of this terrible disease just like when the Polio vaccine got rid of Polio. Just like Penicillin and all of the rest of the antibiotics help with curing infections. I think that we all should take an example from Millie. She may have some debilitating things going on but she still keeps herself busy with making her pillow cases and shams and the like. She says that it is nuts, but is it really? She further says that, and I quote her exact words: "I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else." Enough said judge for yourself. Get doing things that you like, I guarantee that it will make you feel better. I always say that your mind is a very powerful tool, you just have to learn to use it in constructive ways. Now I'm not saying that it is going to cure you of any disease but you will feel better when your doing something that you enjoy. Isn't that what life is all about? Busy hands make happy minds. 18's, Marty On Sat, Jul 20, 2013 at 4:06 PM, C.M. Houtz wrote: Hi Susan, I'm glad that you are going to get some help with your issues. I know that once you deal with them, it will make your life so much easier. I know that I feel that dealing with my liver problem is so much better then not knowing and worrying all of the time. We all face a lot of things with this CML. It's different, but the same because we all have to deal with what is. If we had a choice,
Re: [CMLHope]
Hi Richard, I smile when I see you're messages come in. Don't know if the H in your name is last name or middle, but my husband is also Richard, and last name Houtz, so the first time I saw one of your messages, I wondered why he was mailing me something. We both have our own computers, and there are times he sends me messages and vise versa.At any rate, I also have a son with the same name. I am also on a very restricted diet, and have trouble sticking to it. I have good days and bad ones. When I have a bad one, I just put it behind me and try to do better the next day as we can't change what we've already done, and getting stressed out over it doesn't help either. I have heart issues and have a pace maker, so shouldn't have salt. I try very hard not to over use it, but do use it in my cooking and don't salt extra at the table. Yesterday, I ate potato chips though and pretzels, so my legs and feet were swollen today. You'd think I'd learn, but there are days when you just don't care...or whatever it is. I also am dealing with my liver issues, and that causes my legs and feet to swell also, so am dealing with two different things that are causing the same problem. I'm also diabetic, so I try to count my carbs and do pretty well doing that, but also have the occasional piece of candy. I'm taking a half dose of the medication they give me for that, so I'm doing okay most days. When you're struggling with so many health issues, it's difficult and so there are days when you just want to stop dealing, but I get passed that and am happy for the life that I have...even with problems. I wish I could exercise. I do try to exercise my arms, but lately my polymyalgia prevents me from lifting my arms. Today is one of those days. It mostly hits you in the arms, shoulders, and neck. I also have regular arthritis, so I'm a real mess! I'm smiling and laughing now as it is a lot to deal with, so I just lump it all together and do the very best I can to enjoy my life one day at a time. I don't want to spend my life being miserable, so it's the way I deal with it. The doctor that just did my liver biopsy, wanted me to tell him what health issues I had and when I finished, he said"Is that all?". I told him that is he waited 5 minutes, I might come up with more. I had him laughing...also the nurses and myself. I felt no pain from the liver biopsy, so that was a wonderful thing. The nurse told me that most people dealing with all of my health issues would be miserable...but I choose not to be. I think that we can choose to deal with our health issues any way we want to, and I would rather be happy then miserable. I'm not saying that I don't have bad days. I think that we all do. You take care and keep us posted on what's going on with you. You are among friends hereHugs, Millie -- -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Hi
Hi Susan, Sure you may have your problems but the important thing is that you have decided to try and do something about them. You are no different then anyone else. Sometimes we just go through so much that we are terribly frightened to do anything about them because anything that is of the unknown always seems to frighten us. I want to tell you that you, Millie, Richard, Greenie and all of the rest of those even on different CML sites that are suffering from CML would probably not be here right now if it weren't for the TKI's that are out there now. You will see, mark my words, that there will be something coming soon that will rid you and everyone else of this terrible disease just like when the Polio vaccine got rid of Polio. Just like Penicillin and all of the rest of the antibiotics help with curing infections. I think that we all should take an example from Millie. She may have some debilitating things going on but she still keeps herself busy with making her pillow cases and shams and the like. She says that it is nuts, but is it really? She further says that, and I quote her exact words: "*I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else."* Enough said judge for yourself. Get doing things that you like, I guarantee that it will make you feel better. I always say that your mind is a very powerful tool, you just have to learn to use it in constructive ways. Now I'm not saying that it is going to cure you of any disease but you will feel better when your doing something that you enjoy. Isn't that what life is all about? Busy hands make happy minds. 18's, Marty On Sat, Jul 20, 2013 at 4:06 PM, C.M. Houtz wrote: > ** > *Hi Susan,* > ** > *I'm glad that you are going to get some help with your issues. I know > that once you deal with them, it will make your life so much easier. I > know that I feel that dealing with my liver problem is so much better then > not knowing and worrying all of the time. We all face a lot of things with > this CML. It's different, but the same because we all have to deal with > what is. If we had a choice, it wouldn't be to have these problems, but > here we areand you are right, connecting with others going through > similar things helps us all. Right now, I'm worried about being on a > forced vacation from my Tasigna, but have no choice until my Doctor can > come up with something. I know that he will. I have such faith in this > man and he has always come through for me. My other health issues are > getting worse, but am trying to deal with them too. Marty always inspires > me as I know that he's going through so much and still has such a positive > attitude. I try, and usually succeed in doing that. When I get down, I > try to think about all of my CML friends who are dealing with so many > things..and know that each day I have is precious and that's always been > something I try to remember. I try to take each day as it comes and be the > happiest I can be and do things that make me happy. Today has been a rough > one.Mostly pain in the left side of the middle section of my back > radiating around to the side. I just couldn't get rid of the pain, and > ended up back in bed with pain meds and put heat on it. Usually, laying > down will ease it some. They (the doctors) don't seem to know what's > causing it. My Oncologist seems to think it's my gall, but the others > don't agree. I think he could be correct. To bad he isn't the one to make > that decision. Today the pain came clear around to the front and I had to > deal with it. I finally gave up and took a shower, came down, ate a little > and took my pain meds again. I'm feeling better now, and will just go on > and do something I like to do* > ** > *I finished one pillow case last night, but need to see if I have any > white crochet thread to make an edging on it. I have a quilt done in > blues, white, and yellowthat I only use for good. I am making these > pillow cases to go with that, and have shams to finish up for it too. I > know it's nuts, but doing these things, keeps me going (like the energizer > bunny) and takes my mind off of everything else.* > ** > *You take care, my friend. I know that you're dealing with so much, so > keep us informed. Our love, prayers, and hugs are coming your way. Millie > * > > -- > -- > [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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 sto
Re: [CMLHope] Re: Hi
Hi MartyHope that you're having a wonderful day in Pennsylvania. I wish I could get out, but today hasn't been wonderful. I'm dealing with a lot of pain, and now have it under control, so will enjoy the rest of my day the best way I can. I just wanted to touch base with you and tell you that you are never far from my thoughts. Lately, we have all come together in such a positive way. It sure helps having friends like the people in this group. I hope that we will all continue to be there for one another. I tried to download the site you said could connect us all. The name escapes me right now, but it wouldn't download it completely, and also wouldn't let me get rid of it all, so on Monday, I'll call my computer guy and see if he can get on here and fix everything I've messed up. He can do it from his office, so that makes our lives easier. I'll see if he can download it for meand correct whatever I did to mess things up. Usually, I'm pretty good at these things, but he has put things (walls) whatever, in here that prevent me from getting some pictures and also prevents my downloading some things, so perhaps that's what has happened. I'll keep trying until I get it right. You have a great weekend. God knew what he was doing when he put you into our lives. You inspire each and everyone of us with your life stories and just the way you look at things. I'm working on being that way. I will talk to you soon. Many hugs and 18's my friend, Millie -- -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Hi
Hi Beth, I'm trying to catch up on my e-mails now, and that's always a nice thing to do as I get to read what everyone has written again. Sometimes, I miss things in the first reading and when I go back, find out something new. I know that you deal with more then most of usor different. It is surprising how these drugs work on each one of us in different ways. They have kept us alive though, and even though we have issues, at least we are here to try to deal with them. As I told Susan, I was having a bad day (with other issues), and finally got the pain under control, so now I'll find something to do that makes me happy. I took the day off from cooking, and everyone is on their own, or we might order out. Time will tell. I'd say we'd go out, but I no longer can get up from most chairs without a lot of help, and my son, Chris, has sciatica and so we're in really good shape. He can't sit for long, and is dealing with a lot of pain. So far, my husband is able to do the shopping and tries to help, but at 83...almost 84, he is very forgetful, and the three of us, right now, are laughing matters!!! If I don't laugh, I might cry, and I certainly don't want to do that. :> I do keep everyone in my daily prayers. I know that each one of us deal with so many things, but we also have a great bond with one another, and that helps me, and I'm sure everyone else too. You take care of yourself, and let us hear from you often. Many hugs, and 18's as Marty says. I think it is a wonderful thing to celebrate life. Millie -- -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Hi
Hi Susan, I'm glad that you are going to get some help with your issues. I know that once you deal with them, it will make your life so much easier. I know that I feel that dealing with my liver problem is so much better then not knowing and worrying all of the time. We all face a lot of things with this CML. It's different, but the same because we all have to deal with what is. If we had a choice, it wouldn't be to have these problems, but here we areand you are right, connecting with others going through similar things helps us all. Right now, I'm worried about being on a forced vacation from my Tasigna, but have no choice until my Doctor can come up with something. I know that he will. I have such faith in this man and he has always come through for me. My other health issues are getting worse, but am trying to deal with them too. Marty always inspires me as I know that he's going through so much and still has such a positive attitude. I try, and usually succeed in doing that. When I get down, I try to think about all of my CML friends who are dealing with so many things..and know that each day I have is precious and that's always been something I try to remember. I try to take each day as it comes and be the happiest I can be and do things that make me happy. Today has been a rough one.Mostly pain in the left side of the middle section of my back radiating around to the side. I just couldn't get rid of the pain, and ended up back in bed with pain meds and put heat on it. Usually, laying down will ease it some. They (the doctors) don't seem to know what's causing it. My Oncologist seems to think it's my gall, but the others don't agree. I think he could be correct. To bad he isn't the one to make that decision. Today the pain came clear around to the front and I had to deal with it. I finally gave up and took a shower, came down, ate a little and took my pain meds again. I'm feeling better now, and will just go on and do something I like to do I finished one pillow case last night, but need to see if I have any white crochet thread to make an edging on it. I have a quilt done in blues, white, and yellowthat I only use for good. I am making these pillow cases to go with that, and have shams to finish up for it too. I know it's nuts, but doing these things, keeps me going (like the energizer bunny) and takes my mind off of everything else. You take care, my friend. I know that you're dealing with so much, so keep us informed. Our love, prayers, and hugs are coming your way. Millie -- -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out.
Re: [CMLHope] Re: Hi
Dear Susan, I am so glad you are taking action..and it sounds like you have a great action place in place. Keep us posted and let us know how you are doing! Beth -Original Message- From: Susan Zimmerman To: cmlhope Sent: Sat, Jul 20, 2013 9:17 am Subject: Re: [CMLHope] Re: Hi Thanks all so very much for the encouragement. I think I've made my decision about where to go, will contact Northwestern univ. on Monday to see a specialist who was recommended by Dr. Pinilla from Moffitt Cancer Center in Tampa (my former specialist). You have no idea how you've helped me just by your comments. After six years without medicine I needed a swift kick to get me DOING something about all this. As you say, Beth, help is out there but I just have not had the gumption to get going about it. Richard, your comments have also been so very helpful. Thanks again, 18's, Susan -Original Message- From: Richard H To: cmlhope Sent: Sat, Jul 20, 2013 1:25 am Subject: Re: [CMLHope] Re: Hi You are spot on about having the right specialist. I am very fortunate to have an ONC that is a specialist in CML and he has at least one other CML specialist in rhe same group to concult with. Last year the total group became part of the latest desinated National Cancer Centers. Richard H.. On Friday, July 19, 2013 11:38:47 AM UTC-5, Beth wrote: Amen! Specialist who deal with CML and know the ins and outs of the disease and how to treat it are the way to go! I traveled to Oregon to see Dr. Druker and it helps me immensely. I Have found it's not a lack of concern of general oncologist, but a lack of experience with CML or the new drugs, or how they might be administered..for each unique person and theri circumstances. Sounds goodget off the a---..and get cooking. Help is out there.and we will cheer you on.I too need a swift kick in the pants some times to inspire me to further action. It's not an easy road..and sometimes we can be weary travelers...so we set and rest for atime..and then do something to inspire to get up and do what we can. we are here for you! Hang in there MIllie..I love that you are busy doing your crochetinglove ...Beth -Original Message- From: Susan Zimmerman To: cmlhope Sent: Fri, Jul 19, 2013 9:52 am Subject: Re: [CMLHope] Re: Hi Thanks so much, Beth!!! I'm getting on the phone this afternoon come hell or high water! Somebody that holds great weight with me told me to get off my a__ and get moving toward a specialist, so I guess I'll do it! 18's Susan -Original Message- From: bkbarney To: cmlhope Sent: Fri, Jul 19, 2013 11:18 am Subject: Re: [CMLHope] Re: Hi Dear Susan, So sorry you are struggling. But I am so glad you are listening to the warning sides of your body and paying attention. So often people override their own knowing or their doctors won't listen...You stay strong and be a good advocate for yourself. I am on sprycel at a lower dose nowtitrating down to whatever will hold my numbers, and give me the least complicatons..The good news about most of the newer drugs, like sprycel and ponatinib is they are so much more potent than gleevec and tasigna are, so less drug, can sometimes do the job well for some folks. I was on bosutinib, unfortunately it's the only drug that did nothing for me, I had bad side effects on it, and when I found out the cancer marched right through it for me, I stopped immediately and went back on sprycel, which at a low dose, works for me. A high dose is not an option for many. I have not tried ponatinib, but have heard good things from my oncologist that the people she is treating with it, on lowered doses, are in remission and are not suffering severe side effects. It does have the liver pancreas profile of possible side effects there, but like tasigna, it's just a personal thing how each drug affects us. I would encourage tou to work with your doc and come up with a plan to try one of the newer drugs and see how it goes. I have heard about DR PInella's idea about a vaccine. It is not yet an option, but you can read about the latest research at work for us on the LLS site, as well as Moffit'sas my friend is down there healing from a bone marrow transplant, she is in the clinic every day..I will ask her to look into Dr PInella's research and see where it stands currently. I will let you know what I find out! Take good care Susan, stay positive, this is another pot hole in the road, but you can and will figure out what the next best step is...it may take time to tweak your meds and get the numbers back in line, but it will happen...stay protective and proactive...thinking of you and all my fellow warriors...hope you all have a great weekend ahead~ Beth -Original Message- From: Susan Zimmerman To: cmlhope Sent: Fri, Jul 19, 2013 6:48 am Subject: Re: [CMLHope] Re: Hi Hello all, Thanks so much for the inspira
Re: [CMLHope] Re: Hi
Hi Susan, I started going to Northwestern Univ. in 1999 to see a Doctor named Dr. Tallman. He saved my life when he put me into a study with Gleevec in Jan. of 2000. He has moved on to a different Hosp. but my new Doctor is just as good if not better. I'm very happy with all of the people that I have come in contact with, they are my new family. Love them all. You picked a great place to go to. Good luck and keep me posted. Greenie In a message dated 7/20/2013 11:17:36 A.M. Eastern Daylight Time, rszim0...@aol.com writes: Thanks all so very much for the encouragement. I think I've made my decision about where to go, will contact Northwestern univ. on Monday to see a specialist who was recommended by Dr. Pinilla from Moffitt Cancer Center in Tampa (my former specialist). You have no idea how you've helped me just by your comments. After six years without medicine I needed a swift kick to get me DOING something about all this. As you say, Beth, help is out there but I just have not had the gumption to get going about it. Richard, your comments have also been so very helpful. Thanks again, 18's, Susan -Original Message- From: Richard H To: cmlhope Sent: Sat, Jul 20, 2013 1:25 am Subject: Re: [CMLHope] Re: Hi You are spot on about having the right specialist. I am very fortunate to have an ONC that is a specialist in CML and he has at least one other CML specialist in rhe same group to concult with. Last year the total group became part of the latest desinated National Cancer Centers. Richard H.. On Friday, July 19, 2013 11:38:47 AM UTC-5, Beth wrote: Amen! Specialist who deal with CML and know the ins and outs of the disease and how to treat it are the way to go! I traveled to Oregon to see Dr. Druker and it helps me immensely. I Have found it's not a lack of concern of general oncologist, but a lack of experience with CML or the new drugs, or how they might be administered..for each unique person and theri circumstances. Sounds goodget off the a---..and get cooking. Help is out there.and we will cheer you on.I too need a swift kick in the pants some times to inspire me to further action. It's not an easy road..and sometimes we can be weary travelers...so we set and rest for atime..and then do som ething to inspire to get up and do what we can. we are here for you! Hang in there MIllie..I love that you are busy doing your crochetinglove ...Beth -Original Message- From: Susan Zimmerman To: cmlhope Sent: Fri, Jul 19, 2013 9:52 am Subject: Re: [CMLHope] Re: Hi Thanks so much, Beth!!! I'm getting on the phone this afternoon come hell or high water! Somebody that holds great weight with me told me to get off my a__ and get moving toward a specialist, so I guess I'll do it! 18's Susan -Original Message- From: bkbarney To: cmlhope Sent: Fri, Jul 19, 2013 11:18 am Subject: Re: [CMLHope] Re: Hi Dear Susan, So sorry you are struggling. But I am so glad you are listening to the warning sides of your body and paying attention. So often people override their own knowing or their doctors won't listen...You stay strong and be a good advocate for yourself. I am on sprycel at a lower dose nowtitrating down to whatever will hold my numbers, and give me the least complicatons..The good news about most of the newer drugs, like sprycel and ponatinib is they are so much more potent than gleevec and tasigna are, so less drug, can sometimes do the job well for some folks. I was on bosutinib, unfortunately it's the only drug that did nothing for me, I had bad side effects on it, and when I found out the cancer marched right through it for me, I stopped immediately and went back on sprycel, which at a low dose, works for me. A high dose is not an option for many. I have not tried ponatinib, but have heard good things from my oncologist that the people she is treating with it, on lowered doses, are in remission and are not suffering severe side effects. It does have the liver pancreas profile of possible side effects there, but like tasigna, it's just a personal thing how each drug affects us. I would encourage tou to work with your doc and come up with a plan to try one of the newer drugs and see how it goes. I have heard about DR PInella's idea about a vaccine. It is not yet an option, but you can read about the latest research at work for us on the LLS site, as well as Moffit'sas my friend is down there healing from a bone marrow transplant, she is in the clinic every day..I will ask her to look into Dr PInella's research and see where it stands currently. I will let you know what I find out! Take good care Susan, stay positive, this is another pot hole in the road, but you can and will figure out what the next best step is...it may take time to tweak your meds and get the numbers back in line, but
Re: [CMLHope] Re: Hi
Thanks all so very much for the encouragement. I think I've made my decision about where to go, will contact Northwestern univ. on Monday to see a specialist who was recommended by Dr. Pinilla from Moffitt Cancer Center in Tampa (my former specialist). You have no idea how you've helped me just by your comments. After six years without medicine I needed a swift kick to get me DOING something about all this. As you say, Beth, help is out there but I just have not had the gumption to get going about it. Richard, your comments have also been so very helpful. Thanks again, 18's, Susan -Original Message- From: Richard H To: cmlhope Sent: Sat, Jul 20, 2013 1:25 am Subject: Re: [CMLHope] Re: Hi You are spot on about having the right specialist. I am very fortunate to have an ONC that is a specialist in CML and he has at least one other CML specialist in rhe same group to concult with. Last year the total group became part of the latest desinated National Cancer Centers. Richard H.. On Friday, July 19, 2013 11:38:47 AM UTC-5, Beth wrote: Amen! Specialist who deal with CML and know the ins and outs of the disease and how to treat it are the way to go! I traveled to Oregon to see Dr. Druker and it helps me immensely. I Have found it's not a lack of concern of general oncologist, but a lack of experience with CML or the new drugs, or how they might be administered..for each unique person and theri circumstances. Sounds goodget off the a---..and get cooking. Help is out there.and we will cheer you on.I too need a swift kick in the pants some times to inspire me to further action. It's not an easy road..and sometimes we can be weary travelers...so we set and rest for atime..and then do something to inspire to get up and do what we can. we are here for you! Hang in there MIllie..I love that you are busy doing your crochetinglove ...Beth -Original Message- From: Susan Zimmerman To: cmlhope Sent: Fri, Jul 19, 2013 9:52 am Subject: Re: [CMLHope] Re: Hi Thanks so much, Beth!!! I'm getting on the phone this afternoon come hell or high water! Somebody that holds great weight with me told me to get off my a__ and get moving toward a specialist, so I guess I'll do it! 18's Susan -Original Message- From: bkbarney To: cmlhope Sent: Fri, Jul 19, 2013 11:18 am Subject: Re: [CMLHope] Re: Hi Dear Susan, So sorry you are struggling. But I am so glad you are listening to the warning sides of your body and paying attention. So often people override their own knowing or their doctors won't listen...You stay strong and be a good advocate for yourself. I am on sprycel at a lower dose nowtitrating down to whatever will hold my numbers, and give me the least complicatons..The good news about most of the newer drugs, like sprycel and ponatinib is they are so much more potent than gleevec and tasigna are, so less drug, can sometimes do the job well for some folks. I was on bosutinib, unfortunately it's the only drug that did nothing for me, I had bad side effects on it, and when I found out the cancer marched right through it for me, I stopped immediately and went back on sprycel, which at a low dose, works for me. A high dose is not an option for many. I have not tried ponatinib, but have heard good things from my oncologist that the people she is treating with it, on lowered doses, are in remission and are not suffering severe side effects. It does have the liver pancreas profile of possible side effects there, but like tasigna, it's just a personal thing how each drug affects us. I would encourage tou to work with your doc and come up with a plan to try one of the newer drugs and see how it goes. I have heard about DR PInella's idea about a vaccine. It is not yet an option, but you can read about the latest research at work for us on the LLS site, as well as Moffit'sas my friend is down there healing from a bone marrow transplant, she is in the clinic every day..I will ask her to look into Dr PInella's research and see where it stands currently. I will let you know what I find out! Take good care Susan, stay positive, this is another pot hole in the road, but you can and will figure out what the next best step is...it may take time to tweak your meds and get the numbers back in line, but it will happen...stay protective and proactive...thinking of you and all my fellow warriors...hope you all have a great weekend ahead~ Beth -Original Message- From: Susan Zimmerman To: cmlhope Sent: Fri, Jul 19, 2013 6:48 am Subject: Re: [CMLHope] Re: Hi Hello all, Thanks so much for the inspiration, Millie, Marty, Richard and Beth! You guys are fantastic and I am suddenly most aware of your help and encouragement. Marcie has also helped amazingly with that! During the six years while not on gleevec against my doc's orders, I skipped over most cml google group posts as I was not dwel
Re: [CMLHope]
Thanks Marty. You are correct. I applaud you for your dedication, There was a time when I owned a treadmill used it. There was a period of time I walked 3 miles 5 days a week in a business park or mall. When I moved to our apartment the owners did not want to let the treadmill be moved into the storm basement, I lost the job so the business park and mall are too far away to use. At different times, I have attempted walk the sidewalks of the apartment complex to rebuild my staminia enough to go to the health club and have the equipment available. One of the classes I have taken pointed out the most interesting excerise routines to rebuild that staminia we all need. When you are parked in front of your favorite TV shows, stand up and walk in place during during the commercials. When you finish an hour show you will have excercised 14 minutes. Richard H. On Friday, July 19, 2013 4:20:14 AM UTC-5, wa2yyx wrote: > > Hi Richard, > > Well to be honest with you I must have been cut from the same mold that > you were. However, there is one big difference. I am on dialysis and my > energy level is next to nothing after my treatments and for the next day > afterward then it's back again to another dialysis treatment and so on. > > Here is the difference... I do not let this control me because I just try > working through this and so can you if you really want to give it a try. > > No one says that you must exhaust yourself with exercise but you should > try doing some even for five minutes each day. After a week or so simply > increase it to ten minutes a day. Try getting onto a stationary bike or > even a tread mill but just resign yourself to do it on a regular basis, > maybe three or four times a week. You see, I know you can do it, now it is > you that has to make this discussion to be able to help yourself because > after all is said and done it is your decision. > > Guess where I will be going later on this morning? There is a exercise > building in my community and I will be spending about a half hour there on > the tread mill. Do I become exhausted? Of course I do but the more that I > do it the better off I am, and the better I feel sometimes actually > exhilarated. Today being Friday is one of the days I get my dialysis but it > still won't stop me from helping myself., > > And by the way, since my Hemoglobin is usually low in the 10 range I am > Anemic so I get Epogen (Procrit) to try and keep it as high as possible but > I am still going to do some exercise. > > Richard since your doctor is suggesting that you exercise just try it. No > one says that you must do it until you drop but just start off very slowly > and you will see that it will get better every time. At first your probably > going to get some charlie horses because your mussels aren't used to it but > they will go away. > > Remember Richard, you are the only one that can best take care of > yourself. I know you can, now you must do that for yourself. > > Richard, it has been more then twenty three years since I had my bone > marrow transplant. In all of this time I have devoted myself to try and > help others with CML. There is one young man by the name of Adam that I did > help and he wrote something about me, especially when I had to live is a > small plastic bubble in a hospital. It mainly concerns about what I used to > do about doing some exercise while I had to live in that plastic bubble and > I would like you to read it... > > 18;s > > Marty > > I have many Marty stories I would love to share with you, but I would > like to tell you one in particular which has been passed along, becoming a > tool for someone elses recovery and health. Its a real Marty story; full > of examples. It is about how, despite his profound exhaustion (an > exhaustion not easily imaginable to those who havent been zapped with > high doses of chemotherapy and radiation we were) he would force himself > out of bed in order to march in place to some music for fifteen minutes of > exhaustion each day B a heroic act, I can tell you. > > In order to get himself through this agony, he found it necessary to rivet > his eyes on a nylon plastic screw, which fastened his bubble room to the > ceiling. > > Looking at this particular screw B it was it was a 7/16 inch number 6 > machine screw with a pan head he was able to enter a trancelike state, > to ignore his torment long enough to get through this grueling regimen > without collapsing. Now, one day he finished his march, all sweaty and bone > weary and winded, his head swimming from the exercise, he happened to > glance outside the bubble, and there on the other side, he saw a bunch of > his nurses marching in time with the music! They were marching to Martys > music! Aerobics with Marty! > > Marty loves to tell this story, and I must have showed that I loved to > hear him tell it, because shortly before I was to enter the hospital I > received ..
