Cancer is tiring

Cancer is tiring. So many decisions to make. I remember years ago, there was a game show that the contestants took a step. If they took a correct step, they made money and got to decide whether to take another step. If they stepped again, and it was a correct step, they made more money and could continue on. Or they could stop, take what they had and hope for the best. If they took a wrong step, they fell thru the floor, and lost it all. Today, I feel that way. I have to make the right step, or it is deadly. I am scheduled for 3 weeks of brain radiation starting Monday after thanksgiving. I am terrified to have this done. I know it's necessary, but it is frightening to have your head bolted to a table and then fried. On top of this, some of my cancer has come back in "clusters". I honestly thought I would have more time than this before the cancer came back. Now they will do another ct scan and decide what to do next. Dr konduri told me some time back, that once the cancer returned, they would put me on a different kind of chemo and hope for the best. Due to my weakened state, I doubt they will do both at the same time. So I will have to make some decisions, I'm afraid, and pray it is the right one. And it is so hard to know which is right, until after you make it. Then you know whether it was right or wrong. I know fear comes from the devil, but so help me, I'm afraid. I'm afraid I don't have much longer to live, and I have lots to live for. I'm afraid I will make the wrong choice, and fall thru the floor, loosing it all. I'm sad I won't get to see me grand babies grow up. Half of them are so big, they don't have time for nanny anymore. I know, very normal. I just wish they had a little more time. But of course, I wish I had a little more time. I know tomorrow is another day, but at this point, I'm just sad. I'm sad my time is so little, sad I wont get to spend my holidays with my kids, grandkids, brothers, sister, and in laws. Some live too far away, this one is mad at that one, that one is hurt at this one, some are as sick as I am, some don't have the money, and some are spending holidays with their own families. I just hope tomorrow is a better day. I'm just sad today.

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