Beautiful story Marty....I will remember it...the screws story....and pass it on...thanks for sharing....and Richard, you can do it...I am going to take a walk...and I will think of you out there walking along side of me......you an do it, a little bit at a time....me too...Beth
-----Original Message----- From: Marty Gartenberg <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Jul 19, 2013 3:20 am Subject: Re: [CMLHope] 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 ... in the mail... two 7/16 inch number 6 nylon plastic machine screws with pan heads (along with a poem of faith,) and instructions to tape one of these screws to the ceiling of my transplant room, and to use it to get inspiration and encouragement, to get strong and recover in a hurry. The other screw? Ah, the other screw was for passing on later to someone else that needed it. Do you see how skillfully, how carefully, how quietly and gently Marty constructs the web that binds us all? And so, as of this date, I am happy to report that now my friend Marty Diskin, having used that second screw to help get him through his identical matching 7/16 inch number 6 nylon plastic machine screw with pan head (together with the story of course,) to yet another bone marrow patient. In this way the joyous chain of our affirmation of life echoes, from one Marty to another Marty, and beyond. Is it chance that their names are the same, or that the other Marty happens to be an identical twin like myself, and received, like me, his own twins marrow (a blessedly fortunate but rare occurrence)?? What goes around comes around. Or, as our own Marty likes to say this kind of thing happens to often to call it coincidence. On Thu, Jul 18, 2013 at 11:46 PM, Richard H <[email protected]> wrote: My diet is supposed to be basically heart and also diebetic. I am not as strict as I should be but that is the base of the family menu planning (my wife as the same dietary restrictions. The over the counter supplements I take are for a multitude of other family inheriated problems. Somehow over the last 21 years health issues I was able put all my stress down beside the bed and sleep beside it. If it is beyond my control all my nashing of teeth, losing my temper, or fussing and blaming others won't do anytthing but raise my blood pressure and create enenies. I will admit that was a hugh mountain to climb and still causes problems try to tell an issue. I do not excerise as all my doctors want me too. I have had low energy for so many years that when I do try I wear down too quickly and take too long to recover. This is a lifelong problem and one reason I chose sitting at a desk to earn a living. Richard H. On Sunday, July 14, 2013 11:27:09 PM UTC-5, Beth wrote: Great news Richard..it's o.k.! l am sorry too because, I was thinking you had been off meds for a long time, I remember you sharing that with us and me thinking it gives me hope for one day down the road .........anyway. great news your numbers are back down...staying low and off meds......that's fabulous ....if we don't need to be totally undetectable, but it stays low without any intervention....that's gold!!!! Do you eat certain things? supplements? manage stress or exercise daily???just curious..... if you ansered this before, then forgive me...brain no longer that steel trap... Take good care, Beth -----Original Message----- From: Richard H <[email protected]> To: cmlhope <[email protected]> Sent: Sun, Jul 14, 2013 9:47 pm Subject: Re: [CMLHope] Sorry abouy my twisted mind. I have been off 400mg Gleevec for 5 years and hoping my christmas present will be to continue to 6 years. I am detectable but the low. I had my first scare in April when the reading spiked to 9.475% (Gleevec starts when we see 10%) and the retest dropped back to 4.57% in June. Dr. said your guess is as mine as to why, do you want to test in 3, 6, or 8 months. Richard H. On Saturday, July 13, 2013 11:28:58 PM UTC-5, Beth wrote: Dear Richard, I hope you can go down to 400 too! And as for the steel trap comment...it's nice to know ther eare some kindred spirits out there...let us know what the verdict is about lowering your dose! Have a good weekend, Beth -----Original Message----- From: Richard H <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Jul 13, 2013 10:11 pm Subject: Re: [CMLHope] I love to use this statement "I had a mind like a steel trap" when I speak of my memory loss. I now add "and now it make a good strainer". I hope tou get a chance to go down to 400mg Gleevec. Richard H. On Saturday, July 13, 2013 8:10:09 AM UTC-5, caselmar wrote: Hi Millie: I've lost a lot of eyelashes and brows, too. Even have done false lashes when I had a wedding to go to. Part of the problem I see with people is that almost everyone knows someone who has had cancer. Most of those patients either had infused chemo and/or radiation. So they were bad but a point came where they recovered and life went on. For us, at least for me, there is no chance in the near future that I'll be off of Gleevec. Our problems and side effects often take time to occur, memory loss is one for me. I had a mind like a steel trap. Now, I can remember long term things but short term is going faster than a speeding bullet. People who don't get it tell me it is normal at my age to start losing your memory. I know that as you age your memory may worsen but at 61, I don't think so. Plus, I can tell it is a rapid increase in what I am forgetting. My bone pain and muscle cramps are very severe, and naturally the fatigue is far worse. I wonder if one day sooner rather than later I'll be in a wheelchair or on a walker. Sometimes I can't zip up a dress or coat, even if it is front zip. If it is a back zip, forget it. My husband needs to be here to help with that. I can't hook bracelets or necklaces. None of this is major because I'm so grateful to be alive. But it is still a quality of life issue. I tend to have bad Gleevec stomach. I try to stay away from foods that trigger it. But being from Maryland, I love steamed crabs. I eat them but somewhere within a 15 minute drive to my house so I can use my own bathroom when the diarrhea hits. There is no spontaneous planning because I always have to look at how far I'll be from home because of this. That's the kind of stuff I'm talking about that people don't get. They see me and think, well she works, she looks pretty good for someone with leukemia, must not be too bad. And for the most part, they are correct. I have a positive attitude and feel very blessed to have an illness that is manageable. CML has made me appreciate every single day. Hope your results from the biopsy come in quickly. I know my bone marrow results came in yesterday but my onc didn't call. He and I have a wonderful relationship so I'm assuming that he just didn't get a chance to look them over. He is one of the team doctors for the Baltimore Orioles and he may have been at the game yesterday. Normally I don't worry about the results but he has agreed that if they are good, he's going to try and take me down from 600 mg of Gleevec to 400 for a trial period of 3 months. Hoping that will help with the side effects. If not, I'll just deal with it. Best of luck, have a great weekend, and I think you are a wonderful person and terrific friend! Marcie -----Original Message----- From: C.M. Houtz <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Jul 12, 2013 10:08 pm Subject: Re: [CMLHope] Hi Marcie I also wear a wig when I go out, and at times around the house, but don't cook with one, and, usually, don't wear one around close friends. My hair is a mass of fuzz and I do have a gal that comes to my house and trims it every 6 weeks, but there isn't much to take off...Mostly in the back. My eyelashes are gone, and my eyebrows thinning a lot. No, most people don't understand how we feel, and on here, we can share these things. I have a friend....who told me once that if I'd take long walks it would be good for me. Well, I'm sure that it would, and I would love to be doing that, but my legs won't , so I'm stuck in my jazzy (elec chair) most of the time. I still can manage some with a walker, but it's getting to the point where I have to have a transport chair...and someone to push it when I go out. That makes it difficult for me to attend things with my friends, etc. My arms don't work well either...about the same as my legs. I can't lift my arms, especially the left one without a lot of pain. I do what I can do, but, unless you have these health issues, you don't understand that it isn't something that we choose to have. My friend meant well, but just doesn't get it. Most of my very dear close friends have suffered from some type of Cancer. They understand much better. I love turbans, but have trouble putting them on and keeping them on. I think they look neat. I wouldn't wear them out, but around the house I would. I've never tried to bake with my wig on, but will think about it now that you've warned me. Mostly, I just laugh at how I look as I can't do much about it. Tasigna has left my skin so dry and wearing makeup just doesn't work. Oh well, it is what it is.....right? We just do the best that we can. My oncologist is going to be upset as I didn't get the results of the biopsy yet and I must see him on Monday. He's such a love, and would hate to ever change doctors. You don't find doctors that call you when they need to talk to you (they have their staff do that), but since all of this liver stuff has come up, he calls me often. I also can call him and actually get to talk to him. I am truly a lucky lady. You take care of yourself, and I'm so glad that we can share things with one another. 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