I'm feeling a little overwhelmed....
Hi everyone, y'all know I have Chronic Myelogenous Leukemia, a rare form. I take Gleevec 800 mg pills at night. First off let me say I am thankful I am a veteran. My pills are not covered under my Medicare D health plan. They cost $24,800 a month for me to take 2 pills at night. That's a whopping $297,600.00 a year. Ordinarily most people with CML can take the usual dosage of 400 mg. I can not because of my having the surgery, causing my potassium to bottom out so much. That could cause a massive heart attack in an instant.
Well, about two months ago I started having light headedness, a feeling of being office balance, couldn't make my legs hardly walk when these spells would hit me. There were like cemented to the floor. A week ago last Saturday just as we were going to go unload the storage unit to start moving me in, I started having severe pain in my chest, left arm, neck, and shoulder blade. It hurt to breath. So I sat and supervised, what had to go, what could wait. Had to use my oxygen as I couldn't get a breath in without stabbing pain. That night I went to the ER, the day before my heart Dr. did an EKG and showed normal rythme. I couldn't even stand the blood pressure cuff on my left arm. The EKG came back normal. They put my arm in a sling to not use it. Well, it kept getting worse, by Thursday I was driving, and had to stop, it was constant and I couldn't catch my breath at all even on oxygen. I call 911 (thank heavens for cell phones) the police showed up and call for an ambulance. They took me right back to the hospital, I had just come from there after getting my potassium blood checked. They did another EKG, chest x-ray, a muscle relaxer shot and had security take me back to my van. Still no relief. Last night I couldn't sleep and the pain pills weren't helping at all.
Today I had to see my PCP, he did a chest x-ray and a neck x-ray. The vertabraes in my neck are totally covered with spurs. What they will do about those I don't have a clue, can't take cortazone shots. There's just way too many when he showed me the film. I was there for over 4 hours. Usually when I have to use oxygen I am on level 2, no problem. But because I can't breath without severe pain, I have to walk with the tank on 4 which is almost of 100%. On level 2 the tank lasts 4 hours. On level 4 one hour as it's forcing air into my lungs so they don't collaspe. I went thru 2.5 tanks today while I was there. This Friday I have to have a CT Scan on my chest, neck, and shoulder with and w/o dye, no food or water 4 hours prior to the test. Good thing it's in the early am, next Thursday I have to have a whole body bone scan. Tomorrow he is also setting me up for an MRI on my neck, chest, shoulder, arm, and jaw. Then I will go back to see him again. Today while on this high level of oxygen, they put that finger thingy on me to see how much I was getting into my lungs. Usually without the oxygen while awake I would average 97, today it only registered 95% with my tank opened wide. Not a good sign. Tonight I have to wear the finger thingy that is attached to a monitor while I sleep to see just how much is going into my lungs at level 4 on the electric oxygen machine that was hooked to my bipap. I have tanks for when I work out, or if the power goes out. Tomorrow I will be exchanging in two of the empty tanks, plus drop off the monitor thingy. They will go from there. I do have major fluid building up in my legs, and around my heart and lungs from the chemo pills. So I have to go back on taking two differen****er pills. Don't have a choice, and the two with the chemo pills will make sure my potassium bottoms out. Jolly. Just when I think life is grand, I always get a curve thrown at me. The devil needs to take a backstep and realize that I am not going to give into him and blame God. Not going to happen. I've come this far, I will go the distance with God beside me.
I'm telling you for you to feel bad for me, but to rejoice that there is a God to help me thru this, a loving one to help heal my body. I received a leukemia update in my email regarding the Gleevec, it is now showing that it can damage the heart muscles, terrific, but they still feel that the Gleevec is the best medicine for this type of leukemia. It stops the disease from spreading more and damaging good blood cells, so that we can live longer. ummmm I wish I knew how long they are talking about, cause right now the way my chest hurts even just typing this, makes me wonder. I don't think of it as a fatal disease as I could die tomorrow from an accident. So I am not worried about it, outside of not being able to breath well, and my chest and arm hurting, I feel great, just very very tired. Haven't had any sleep since I went to bed Sunday night.
I have just one wish, and that's to be able to live long enough to see my grandsons grow to really know me, and maybe my 2 sons might cooperate in giving me a granddaughter. I am moving closer to them in Nashville next August just so that I won't be alone when the time comes. I don't know though, I have been online dating this guy who was on his sailboat in the Carribean, but fell asleep on the water in his inflatable tub, he's in a cooling contraption having ice put all over him so that he won't blister, and I mean all over him. Give me a heart attack when he said that. Talk about hot buns or hot stuff, maybe that's why I can't sleep. You think??? My mind is in over drive right now. I'll see where this leads us first, then go from there, but I will most likely move as I want to be nearer my family.
Thank y'all for just taking the time to read this. For always being there for me and for each other. It truly means a lot to me, more then I can ever say.
I love y'all, May God travel with you on your new journeys to a better you. Kathy
Sorry it's so long, just putting everything down so you will know what is going on.
277.5/178/130
surgery/current/goal
Hi Laura, how are you doing? I haven't seen you posting much lately and was about to call you. I pray this finds you doing great. Thank you. Life's trials and tribulations, or it could be the 3 6's in my social security number, but even that won't stop me from being God's child not the devils. He can have all the crimals, just not the good people who have a God to love. I just have to take it one day at a time. Head held high and the body moving forward not backwards.
You take care and drop me a line sometime. Love Kathy
Hi Terry, thank you. Just found out this morning that I am scheduled for the MRI next week also. I will get the results on Aug. 30 from the ct scan, bone scan, and mri. Then it's off to Nashville until the 5 or 6th of Sept. Depending on what the VA does while I am there. I'll keep all updated when I find out what is going on. Love you, btw, how are you doing? How much have you lost to date? Don't be shy, share your news with us.
Love Kathy
Hi Terry, sounds like you're doing pretty good, just remember that the more water you get in the more the pounds will come off. I have a hard time getting in all my water, but I at least try for 30 ozs, then I drink some juice, have some broth, or sf jello, or lemonade. I have been unable to do much working out, but I figure, since I am still losing it, and all the walking I have had to do trying to get settled in, I will be okay until the first of Sept. After that, I will really be concentrating on working out and drinking more. There won't be any stopping me then. No pressures to pack, to find a place, to relocate, some of the stress will be coming off me so I can get back to what is really important, my health.
You've just started, so don't beat yourself up just try and get in what you can, make some sf jello, or have soup made with water. There's some things that you can have that goes towards your water content and you can pack them and take them to work for lunch. Best to you, Kathy
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