My miracle drug

I went to Houston on the 1st, and met with a neurologist named Dr Phan. She is a wise woman and made me feel very confident in her knowledge of Lambert-Eaton Myastenic Gravis. This is a rare disease that has rendered my legs nearly useless, weakening my arms, and making it hard to swallow. Due to this sickness, I have a hospital bed, and a scooter heading my way. It is all I can do to get from my bed to my recliner. I cannot sit up on my own, so to get out of bed, I've had to take the box springs off my bed, and roll off onto the floor, get on my knees, and slowly pull myself up. I have fallen into the bathtub, out of the bathtub, or can't get out of the tub at all. So it has kind of sucked that I've fought so hard to beat this cancer, but then to spend my life bed bound, is no quality of life. I hate to admit it, but the harder it has gotten to walk, the more I have prayed God would take me on. Dr phan was telling me about this drug that has been used in Europe with great results. Only it has not been approved by the FDA here. However, due to a compassionate care program, one dr in the US has access to it, and it happens to be Dr Phan. She approved me for it, and I got my 1st bottle today. I took 1 pill this morning, and 1 pill this afternoon. After just 2 pills, I was walking so well, Kate and I went to ikea, I walked every step, and felt strong with every step. It is a miracle. The last time I went to the dr, Kate had to push me in a wheelchair, because i was so weak. I felt like I could have danced the night away just after 2 pills. I am in awe. Now I can concentrate on beating cancer, instead of praying to die. God is so awesome. Meeting Dr Phan was a miracle in itself, and could have only happened thru God. Getting the drug- 3,4 DAP, was a miracle, and since it has not been approved by the FDA, they only charge me shipping. Nothing for the medicine. So what a miracle. I am so grateful to God for all He has done, how He has intervened, and has looked out for me, especially when I didn't even know what to pray for. I love the Lord. I love that He still loves me even when I argue with him. Tonight, I'm just grateful. I love miracles, and especially, when they happen to me.

Trip to Houston

Kate got me to Houston without a hitch. Saw the neurologist, and it was a great visit. She said I definitely have Lambert-Eaton, and I definitely have small cell lung, she has my records. What has amazed her is how good I look when in reality I should be dead. I told her that I told God I wasn't going. She said I definitely qualify for the miracle drug called 3 4 DAP. She is mailing a 2 month supply to my home and I should have it by the end of the week. I am so, so blessed. Without this drug, dr said I would be bedbound within a month. I couldn't stand that. To have fought so hard to live, only to end up in bed the rest of my life. Dr said I should feel the difference within a few days, maybe even first day. Praise the Lord! This is the best news I've had since I was told I was going to die. Course, I guess any news would be better than being told I was going to die. So I am excited! I get the medicine for free, I just pay the shipping. And I only see this dr once every 6 months. My neurologist will monitor me more frequently. I looked out the window while I was there, and saw MD Anderson. Hospital. My sis was there while fighting a deadly throat cancer. She has been cancer free for 16 years. I took this as a sign of hope. I love the Lord I serve. For getting me to Houston safely, getting me in with these drs, getting me this miracle drug. But most of all for putting up with my nonsense. I do admit, this is one of those times I just want my mama. Keep praying and keep the faith. Becky

This past March

This past march, I was diagnosed with small cell lung carsenoma extended, or oat cell cancer. I was also diagnosed with a rare disease called lambert-eaton myastenic syndrome. And treatment for both are as painful as you might expect. One was the worst pain you could imagine, and I've had babies! Right after diagnosis, in March, I was told had days to live. Did i want to go home and die there, or be moved to palliative care where they will make me comfortable until I die? I didn't like either of those choices, so I chose door number 3. My daughter and sister did some research and found Baylor Cancer treatment center downtown was the best there was. My dr is Dr Konduri. He has never, not one time said to me that I will die. I know this cancer is terminal, but we don't talk about that because I dont want to. Dr konduri keeps an eye on every aspect of my treatment. He goes over my medicine, wants to know who prescribed it. Do I have their phone number? He will call them, right then, and tell them to take me off of it, or change it. So now I've gone from days to live to the results of my scan from Wednesday. Today I was told my scan was awesome. I have one lymph node that has enlarged, but due to my cough, he thinks it's an infection. He is going to rescan in 2 weeks to be sure it's an infection, but I feel well enough, I believe that is all it is. The other good news is the wound specialist has cleared me for brain radiation. I guess that's good news, but it needs to be done. So in march, I was given days to live. Now, thanks to the God I serve, 8 months later I'm still here. YEAH! Now I just have to deal with lambert-eaton. My legs just don't work well at all. I do the old woman shuffle. If this continues, I will be bed ridden very soon. I go to Houston soon, Nov 1, to be re-examined. If all goes well, I will be given a drug that they say will make my legs normal. Good lord, what a miracle! It would suck to be given more time here on earth, only to have to spend it in bed. So today, I am so grateful to God for all he has done to keep me alive, feeling fairly good, and getting me on the right track for lambert eaton. I am blessed. I am grateful, I am happy, and I am enjoying my life. To my brothers, beware. I am going to be around to bug you for awhile. And to my sister, i already know she is on my side. Thank you Lord for keeping me alive this long. Giving me another grandbaby. I love having 11 of them rascals. just thank you Lord. Y'all keep praying for me. Please. Keep the faith! Becky

Sorry, I hit a wrong button. I have to realize it's not all about me, but my ego is wounded ever so slightly. To my step-sisters on my Fathers side, thank you all for meeting with me early. It meant the world to see you all that extra time when we met early. Rachel and jenny, it was awesome for y'all to be there. Now you know why we are wounded souls. But God lifted us up, saved us, and given us the courage to give up most character defects. I am so blessed. I am loved by many who are not afraid to show it. Keep praying. I am still praying for strength and healing. I fell out of bed last night. After I got past my wounded ego, then I had to muster the strength to get up. It was hard. Just keep praying...Becky

1 Peter

In reading my Bible tonight, I read 1 Peter 1:6-7. " So be truly glad! There is wonderful joy ahead,even though it is necessary for you to endure many trials for awhile. These trials are only to test your faith, to show that it is strong and pure. It is being tested as fire tests and purifies gold. So if your faith remains strong after after being tried by fiery trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.". What awesome scripture!! I just wish, hope and pray I am passing all those trials. As some of you know, I went to Tulsa weekend before last. I went to give my testimony for what I believe will be my last testimony. I had to be helped up the maybe 4 steps by my son. My legs just wouldn't work well on their own. I gave my testimony, and had to be helped down. I have to ask someone, (maybe God), after being bald, can we cut it out with the humiliation! After being bald, I discovered I'm vain. I never would have known that until my head was as slick as a baby's rear end. The other thing I have always known is I HATE asking for help. I just hate it. My body has deteriorated to the point I need help for most everything. The other thing I believe, is God is preparing me for my death. I so pray I am wrong because I'm not done talking about Him. But I believe He is preparing me just the same. I feel if I live 6 more months, it will be a miracle. Now don't everybody go jumping on my for my "lack of faith". It is not that. I have faith in God to know He will take me when he's ready. God also got it thru my thick skull when my husband died, that to God, death is not a punishment, but a reward. It only feels like a punishment for those left. I am also not asking you to quit praying for healing. I would so love to be healed! I would love lots more holidays with my kids and grandkids. I so wish I could have all my kids and grandkids here for what I believe is my last holidays. But that is impossible. 3/4 of my family live out of state. The other thing I have to remember is my kiddos are busy, have lives of their own, and already have plans. I just always believe it's all about me.

Brystol

I have a little granddaughter that is 2 years old. Her name is Brystol. One of the things I love about Brystol is she is always smiling. Quite unusual for a 2 year old. She just seems to find the world, and all it's creatures funny. She has a big cheesy smile, and will have you laughing at her antics in nothing flat. The only things in life she seems to need is her sippy cup and her yo gabba gabba dolls. If you don't know what those are, don't feel bad. I didn't know until last year. She is surrounded by people that love and care about her, and she knows that. She has her Bub, who she thinks hung the moon. And there is nothing he would not do for her. Then she has her big sister, Ga-Ga, who helps her with things, or takes things away she shouldn't have. She has Elleigh, her little sister, that she just knows mama and daddy brought home so she would have her own baby. But no matter what happens, she just smiles. I've learned alot from this little 2 year old. Life really isn't so complicated, if you are a Christian. Sure, I am having some health issues, ok, major health issues. My mama used to always tell me " you have the same drawers on to get glad in". So I may as well smile and go on. I am surrounded by people that love me, whether it's family, friends, church family, co workers, etc. I am loved by God, the Creator of the universe. Did you catch that? I am so special, that I am loved by the creator of the universe! How awesome is that? I am surrounded, like Brystol, with people that do those things for me, that I am now unable to do myself. Brystol has a funny sense of humor, and sees the world thru her own eyes. Not mine. Not yours. She is like her mama in that she is going to do things her own way, and she somehow knows it will all come out ok. She loves to get hugs, and loves to give hugs. Frankly, I think she is quite amazing, and when I grow up, I want to see the world thru her eyes. Tho maybe I do to some degree. I find humor in the world, and the people around me. An example is when the neurologist yesterday kept talking about 2 years, bla, bla, bla, 2 years. Finally, I asked him what he was talking about with 2 years. He said,"has no one ever told you your life expectancy?". I told him no they had not because I never asked, and frankly didn't want to know. Oops! On the way home, I kept thinking about his 2 year life expectancy. 2 years from when? When did the 2 years begin? From diagnosis? That would be march. But what if I had gone to the dr in Jan, would I just keel over dead in Jan 2013? What if I still hadn't gone to the dr yet, would my time not have started yet? What if I cross the international date line? Do I get another day, or die a day sooner? Do I wait until someone says "ready, set, go!". This 2 year thing is so confusing, I think I just won't die. I think I'll just stick it out until the rapture then we can all go together. I never liked taking trips by myself anyway. Life is funny. Brystol baby, thank you for reminding Nanny how funny life can be. And honey, like you, I will just keep smiling. Keep the faith, Becky

What a wonderful weekend. I spent it at a church camp in beautiful east Texas. My cousin, Charlene, came to help me. My problems are that my legs don't work so good. I cannot tell you how many trips she made to the room, meeting hall, or getting something in the cafeteria, just because I wasn't strong enough to do it on my own. I HATED asking her for help. I wanted this to be a time of fun and relaxation for her as well, not there to take care of me. I thought about this all the way home. How she sacrificed herself for me, and for no other reason but love. I also began to realize I hate asking God, my Father and Creator for help. I always think he has more important things to do. (like world peace and seeing to it us women wear Christian panties). If you were at camp this week, you get this last statement. I know God cares about my cancer, and I can pray for that, but to ask him to give me strength to walk, seems like I'm troubling him too much. Do you ever do that? Now, as a parent, I want to be involved in all aspects of my children's lives. ( I will not interfere, but I care enough to know what is happening in their lives. Wouldn't God be that way with me? And the only difference is, I want him to interfere. I want him to take control and make me feel good again. Today I realized I am like the cowardly lion on the wizard of oz. I know I have to see the wizard, and I know when I get there, I will be welcome, but I am scared of the journey to get me there. Whether that is healing or death, either way is painful. Haven't I had enough pain in my life? Course, the deciples probably wondered the same thing before they were put to death. The camp was relaxing, shed lots of tears, laughed alot, made new friends, and spend much time with God ( and Charlene). I am anxious to go back next year. I will make my prayer to be stronger before next ladies retreat. Andrea, it was so nice to meet you and put a face to your name. I am so grateful to God, that he has let me live this long, allowed me to see my 11th grandchild, will help me thru one more testimony at family church, and I just pray he gives me all the right words to say. So tonight, as I pray, I won't just pray for healing. I will pray for peace, strength, rest, no pain, my ear to heal, and my life to be a good one. Maybe it is never too much to ask God. I only thought so, and I have been known to be wrong a time or two. Keep the faith, Becky