Re: [CMLHope] The Keeper
Without going into detailsI do agree with you and your message is so true. I have a spouse who couldn't tell you much about what's wrong with his wife (me) of 53 years. It hurts, but I get past it and deal with the people who do care. I have 3 wonderful sons who keep on top of things. The youngest lives with me. I couldn't do much without him. He is so caring and loving and I'm blessed to have a wonderful son like him. The others live out of PA but call and are always caring about me. I guess they take after their Mom as I am one who takes care of everyone, even now. I don't understand the other kind of people, but figure it's them that have the problem. When I developed Breast Cancer 20 years ago, I lost many, so called, friends. I couldn't understand it as I was always there for them. You learn a lot when you have Cancer. People can't deal with it. I found the same when I lost my Daughter. People would avoid you when a hug would have meant so much. I have many wonderful friends.mostly ones that enjoy the same things I enjoy. They would do anything for me and have. These are the real keepers. I also have old friends from many years ago that write and support me all of the time, so I feel fortunate. Some of the best support is given to me here on line. We all share similar things and understand what the other one is going through. There is so much warmth and caring and even though it's the internet, I feel surrounded by it all and, believe me, it helps me through some rough days. Marty, you are one of the best and I do hope that whatever you put in the wall comes to be. You take care my friend. 18's to you. Millie - Original Message - From: Marty Gartenberg To: CMLHope@googlegroups.com Sent: Sunday, April 21, 2013 2:59 PM Subject: [CMLHope] The Keeper This is actually the story of my life. You are all my friends and I value your friendship and wanted to share this with you. Now, before you read the rest let me explain what a keeper really is to me. Anyone can be a keeper. I have seen it many times, a wife helping her husband, a husband helping his wife. A friend helping his or her friend. People that really care about each other trying to always be there for them to help. However, I have also seen the opposite. I have seen that sometimes when people become ill then their partner or friend decides to leave. When I was going through my bone marrow my wife Shelly never waivered, but some of my so called friends decided to leave, and I never forgot. It is these kinds of people that were never keepers to begin with. I read and see the love and compassion of the people on this site and I am simply amaized in seeing one human being selflessly helping another human being. When one has some problems and another can comfort that person then they are what I would call a keeper. 18's Marty Dear Keeper, I grew up in the 50's with practical parents. A mother, God love her, who washed aluminum foil after she cooked in it, then reused it. She was the original recycle queen, before they had a Name for it... A father who was happier getting old shoes fixed than buying new ones, which we couldn't afford anyway, but in spite of that we still made due. Their marriage was good, their dreams focused. Their best friends lived barely a wave away. I can see them now, Dad in trousers, tee shirt and a hat, and Mom in a house dress, broom in one hand and dish-towel in the other. It was the time for fixing things. A curtain rod, the kitchen radio, screen door, the oven door, the hem in a dress, things we keep. It was a way of life, and sometimes it made me crazy All that re-fixing, eating, renewing, I wanted just once to be wasteful. Waste meant affluence. Throwing things away meant you knew there'd always be more. But then my mother died, and on that clear summer's night, in the warmth of the hospital room, I was struck with the pain of learning that sometimes there isn't any more. Sometimes, what we care about most gets all used up and goes away...never to return. So... While we have it.. it's best we love it... And care for it And fix it when it's broken And heal it when it's sick. This is true... For illness, For marriage And old cars... And children with bad report cards. Dogs and cats with bad hips And aging parents. And grandparents. We keep them because they are worth it, because we are worth it. Some things we keep. Like a best friend that moved away or a classmate we grew up with. There are just some things that make life important, like people we know who are special. And so, we keep them close! Good friends are like stars You don't always see them, but you know they are always there. Keep them close -- -- [CMLHope] A support group of http://cmlhope.com -
[CMLHope] The Keeper
This is actually the story of my life. You are all my friends and I value your friendship and wanted to share this with you. Now, before you read the rest let me explain what a keeper really is to me. Anyone can be a keeper. I have seen it many times, a wife helping her husband, a husband helping his wife. A friend helping his or her friend. People that really care about each other trying to always be there for them to help. However, I have also seen the opposite. I have seen that sometimes when people become ill then their partner or friend decides to leave. When I was going through my bone marrow my wife Shelly never waivered, but some of my so called friends decided to leave, and I never forgot. It is these kinds of people that were never keepers to begin with. I read and see the love and compassion of the people on this site and I am simply amaized in seeing one human being selflessly helping another human being. When one has some problems and another can comfort that person then they are what I would call a keeper. 18's Marty Dear Keeper, I grew up in the 50's with practical parents. A mother, God love her, who washed aluminum foil after she cooked in it, then reused it. She was the original recycle queen, before they had a Name for it... A father who was happier getting old shoes fixed than buying new ones, which we couldn't afford anyway, but in spite of that we still made due. Their marriage was good, their dreams focused. Their best friends lived barely a wave away. I can see them now, Dad in trousers, tee shirt and a hat, and Mom in a house dress, broom in one hand and dish-towel in the other. It was the time for fixing things. A curtain rod, the kitchen radio, screen door, the oven door, the hem in a dress, things we keep. It was a way of life, and sometimes it made me crazy All that re-fixing, eating, renewing, I wanted just once to be wasteful. Waste meant affluence. Throwing things away meant you knew there'd always be more. But then my mother died, and on that clear summer's night, in the warmth of the hospital room, I was struck with the pain of learning that sometimes there isn't any more. Sometimes, what we care about most gets all used up and goes away...never to return. So... While we have it.. it's best we love it... And care for it And fix it when it's broken And heal it when it's sick. This is true... For illness, For marriage And old cars... And children with bad report cards. Dogs and cats with bad hips And aging parents. And grandparents. We keep them because they are worth it, because we are worth it. Some things we keep. Like a best friend that moved away or a classmate we grew up with. There are just some things that make life important, like people we know who are special. And so, we keep them close! Good friends are like stars You don't always see them, but you know they are always there. Keep them close -- -- [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] Skip Duffie
Marty, consider it done. Thanks for the hebrew and mother's names. I will also say a mishaberach for you. You will remain on my prayer list, as I am part of a tehillim prayer group. Sent from my iPad On Apr 21, 2013, at 11:03 AM, Marty Gartenberg wrote: > Dear Marcie, > > I too have been to Israel and also placed several "notes" into the cracks of > the Western Wall for others suffering from cancer. > > I would very much like if you could place a piece of paper in one of the > cracks of that wall. > > My email address is wa2...@juno.com. If you would kindly contact me I would > appreciate it. > > 18's > > Marty > > > On Sun, Apr 21, 2013 at 12:57 AM, Marcie Goodman wrote: >> Hi Beth and Fellow Warriors: >> >> I pray for all of us to do well and live long, happy, pain free lives. What >> Millie wrote is so true. People who don't have CML or those who aren't >> related or very close to a CML patient don't get it. My sister is in from >> Florida because our 92 year old father had a stroke 3 weeks ago. Tonight we >> had dinner with cousins who kept saying to me, I guess you aren't really >> sick because you look great. Really? I'm wearing a wig, just started with >> false eyelashes, had a week with such bad Gleevec stomach that I can barely >> sit because my bottom is so sore, muscle cramps and terrible bone pain. But >> life goes on and I'm determined to live my life, not focus on my death. That >> will happen whenever the Heavenly Father determines that it is my time. >> >> The point I guess I'm making is that there is so much isolation and fear >> because we have something rare and it is scary to us and others to hear the >> word cancer. The silver lining is that we have an illness that can be >> managed, albeit with horrific side effects for many, for quite a long time. >> Plus new treatment options. And we have one another which is a true >> blessing. >> >> Beth, I send good wishes your way and will say prayers for you. My heartfelt >> thanks to all of you for the kindness you always extend. >> >> One last thing. I'm going to Israel the end of May. There is a tradition in >> my religion, Judaism, that if you write a note or prayer on a small piece of >> paper and fold it up and place it in a crack in the Western Wall in >> Jerusalem that God will answer your prayers. I've had miraculous >> experiences, including that more than 28 years ago we were told it was >> IMPOSSIBLE for me to get pregnant. I gave a prayer to a friend who was going >> to Israel that asked God to bless us with a baby and within 6 weeks got >> pregnant. We only have one very beautiful 25 year old daughter. If anyone >> would like me to place notes for them, please let me know and I'll give you >> my private email. I figure a prayer to God is always a good thing and I am >> happy to do this for anyone that would feel >> some comfort and hope in this old tradition. >> >> Marcie >> >> Sent from my iPad >> >> On Apr 20, 2013, at 4:04 AM, "C.M. Houtz" wrote: >> >>> Hi Beth, >>> >>> I know you struggle with your meds and that you have had so many side >>> effects. I'm so sorry that this new drug has caused you such problems. I >>> am not sleeping well tonight, so decided to get up and do some things on >>> here that I've been meaning to do. I wanted to print out some patterns to >>> hand stitch. I haven't been feeling well, and am seeing an >>> Gastrointerologist (spelling is wrong), but at 4:00 A.M., what do you >>> expect :>). When I came off of two months of Home Caredue to a hip >>> problem, I thought I'd be feeling better, but started with nausea. It's >>> not every day, but enough that I am having trouble dealing with it. I also >>> was in severe pain due to my polymyalgia. After years on Tasigna and >>> dealing with constipation, I'm dealing with the opposite most days. I had >>> a sinus infection and my doctor put me on an antibiotic and that got rid of >>> it, but the stomach problems have stayed with me. I also was taking meds >>> for acid reflux and now, after a year on the stuff, Express Script has told >>> me that it can interfere with the Tasigna, so had to stop that. My pain >>> and whatever has made me so weak that it's almost impossible for me to get >>> up from a chair without help. I'm not sure if the Arthritis has caused >>> this, or if it's a medication problem, but I can understand where you are >>> coming from. I'm anxious to see my Oncologist next month and, hopefully, >>> I'll still be in remission. We all have issues, but must stay strong and >>> fight it as hard as we can. I know that it sounds easy, and know that it >>> isn't, but just remember that we're all here to help one another, and you >>> all have helped me so much. People look at you and think...you look well, >>> and don't realize how difficult this CML is to fight. I look in the mirror >>> and wonder who this old lady is as my hair if all but gon
Re: [CMLHope] Skip Duffie
Dear Marcie, I too have been to Israel and also placed several "notes" into the cracks of the Western Wall for others suffering from cancer. I would very much like if you could place a piece of paper in one of the cracks of that wall. My email address is wa2...@juno.com. If you would kindly contact me I would appreciate it. 18's Marty On Sun, Apr 21, 2013 at 12:57 AM, Marcie Goodman wrote: > Hi Beth and Fellow Warriors: > > I pray for all of us to do well and live long, happy, pain free lives. > What Millie wrote is so true. People who don't have CML or those who aren't > related or very close to a CML patient don't get it. My sister is in from > Florida because our 92 year old father had a stroke 3 weeks ago. Tonight we > had dinner with cousins who kept saying to me, I guess you aren't really > sick because you look great. Really? I'm wearing a wig, just started with > false eyelashes, had a week with such bad Gleevec stomach that I can barely > sit because my bottom is so sore, muscle cramps and terrible bone pain. But > life goes on and I'm determined to live my life, not focus on my death. > That will happen whenever the Heavenly Father determines that it is my > time. > > The point I guess I'm making is that there is so much isolation and fear > because we have something rare and it is scary to us and others to hear the > word cancer. The silver lining is that we have an illness that can be > managed, albeit with horrific side effects for many, for quite a long time. > Plus new treatment options. And we have one another which is a true > blessing. > > Beth, I send good wishes your way and will say prayers for you. My > heartfelt thanks to all of you for the kindness you always extend. > > One last thing. I'm going to Israel the end of May. There is a tradition > in my religion, Judaism, that if you write a note or prayer on a small > piece of paper and fold it up and place it in a crack in the Western Wall > in Jerusalem that God will answer your prayers. I've had miraculous > experiences, including that more than 28 years ago we were told it was > IMPOSSIBLE for me to get pregnant. I gave a prayer to a friend who was > going to Israel that asked God to bless us with a baby and within 6 weeks > got pregnant. We only have one very beautiful 25 year old daughter. If > anyone would like me to place notes for them, please let me know and I'll > give you my private email. I figure a prayer to God is always a good thing > and I am happy to do this for anyone that would feel > some comfort and hope in this old tradition. > > Marcie > > Sent from my iPad > > On Apr 20, 2013, at 4:04 AM, "C.M. Houtz" wrote: > > *Hi Beth,* > ** > *I know you struggle with your meds and that you have had so many side > effects. I'm so sorry that this new drug has caused you such problems. I > am not sleeping well tonight, so decided to get up and do some things on > here that I've been meaning to do. I wanted to print out some patterns to > hand stitch. I haven't been feeling well, and am seeing an > Gastrointerologist (spelling is wrong), but at 4:00 A.M., what do you > expect :>). When I came off of two months of Home Caredue to a hip > problem, I thought I'd be feeling better, but started with nausea. It's > not every day, but enough that I am having trouble dealing with it. I also > was in severe pain due to my polymyalgia. After years on Tasigna and > dealing with constipation, I'm dealing with the opposite most days. I had > a sinus infection and my doctor put me on an antibiotic and that got rid of > it, but the stomach problems have stayed with me. I also was taking meds > for acid reflux and now, after a year on the stuff, Express Script has told > me that it can interfere with the Tasigna, so had to stop that. My > pain and whatever has made me so weak that it's almost impossible for me to > get up from a chair without help. I'm not sure if the Arthritis has caused > this, or if it's a medication problem, but I can understand where you are > coming from. I'm anxious to see my Oncologist next month and, hopefully, > I'll still be in remission. We all have issues, but must stay strong and > fight it as hard as we can. I know that it sounds easy, and know that it > isn't, but just remember that we're all here to help one another, and you > all have helped me so much. People look at you and think...you look well, > and don't realize how difficult this CML is to fight. I look in the mirror > and wonder who this old lady is as my hair if all but gone and I no longer > have eye lashes, but I try to laugh and just put my wig on and go out > whenever I can do it. Lately, that hasn't been to often. The weather is > getting better so one of these days, I'm going to go out with my jazzy > chair and enjoy the warmer days. I fill in the rest of my time with needle > work. I'm doing a lot of embroidery right now, and quilting. I have two > quilt tops to finish up and then will have someone ge
Re: [CMLHope] Skip Duffie
Great advice Marty, white count down to 1.9 and ANC still down to less the 300 once we bring them up I will back in the saddle again Thanks Marty > > From: Marty Gartenberg >To: cmlhope@googlegroups.com >Sent: Saturday, April 20, 2013 12:48:21 AM >Subject: Re: [CMLHope] Skip Duffie > > > >Hi Beth, > >I just have one thing to say in answer to your post. You wrote "Isolation and >fear are powerful tools" Indeed they are, but do you want to know a much more >powerful tool? It's your Mind. > >18's, > >Marty > > > > >On Fri, Apr 19, 2013 at 1:28 PM, wrote: > >Dear Skip, Marty, Millie, and all those warriors who are struggling right now. >I want to pass along a great big hug filled with hope, and light, and healing >and positive energy. We need each other during the rough times and I am so >glad we have one another. I too have been struggling mightily, but find the >one thing that helps, that I keep on working on, is trusting in, believing >in, knowing that we can live and love well inspite of and perhaps in some >cases because of our illness and how it informs our lives. Isolation and fear >are powerful tools that push against us. Community and holding hope and faith >for ourselves, our bodies and our spirits, here, united together, will serve >and guide us well. I read every day and think of all my fellow warriors out >there, those who write, and those who read, and send a prayer to all for peace >of mind body and spirit. >> >>I tried bosutinib and had horrible side effects at a moderate dose, muscle >>rigidity all over the body, elevated cpk, emotional distress... after 8 >>weeks, the BCR showed it had not done anything for the cancer, the cancer had >>actually grown threw it and I lost two logs. So now back on sprycel at 50 and >>working on getting back into remission. As I had to go off sprycel in >>December because of toxicity, it's a scary time. But I remain positive and am >>researching alternative and complementary options to aid with the toxiicity. >>If anyone has any suggestions about muscle spasticity, please let me know. I >>can handle the rashes, migraines, muscle wasting/fatigue/ weakness, But this >>one is new, ongoing and the greatest challenge yet. >> >>thanks for yoru help. >> >>Beth >> >> >>-Original Message- >>From: gene and guy Larcher >>To: cmlhope >>Sent: Fri, Apr 19, 2013 10:49 am >>Subject: [CMLHope] Skip Duffie >> >> >>Dear Skip: >> >>So good to hear from you after quite some time. >> >>Very sorry to hear you have been so poorly but the good news is that you are >>getting better. >> >>You, along with Marty, have given tremendous hope to the rest of us and shown >> how to bear long illness with good spirits. >> >>Dear old warrior - we wish you the very best and hope to hear much more from >>you in the future. >> >>Guy >> -- >>-- >>[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 mailto:cmlhope%2bunsubscr...@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 ema
