The first thing to tell you is that Wayne and I are officially divorced. He went to court today to finalize it. I already had a physical therapy appointment scheduled when we got the date, but it was better that he went because I would have cried for sure. I half expected Wayne to change his mind because last week when we talked about it, he was having second thoughts. But we need him to have good medical. Right now we have to pay $1000.00 plus every month for his medicaid. (The hospital is writing it off but we have to talk about it and I think it's a real pain for them and us.) Now he will not only have his medicaid, but he will also have his Social Security or SSI, plus he will have food stamps, so our meager income is going to get better. But the price was really high. Neither of us wanted to be divorced. We've been married over 23 years and we really wanted to at least get to 25. Both of our hearts are breaking.
Also Wayne wasn't able to transfer to Dr.Thomas after all, partially because Dr. Nicholes didn't want to let him go. So Wayne is continuing to have chemo every week. He made the decision to do this and I am supporting him. Dr. Nicholes told us that he can keep Wayne alive for a long time with chemo. I don't know what a long time means. But Amanda is coming tomorrow, and I am hoping she will ask all the questions that I either forgot or didn't get adequate answers for.
One thing we found out was that Wayne has permanent brain damage from the radiation, and that is is responisible for a number of Wayne's symptoms, such as not being able to walk well and his speech, which has gotten worse. So it's hard to know what is caused by the radiation and what is caused by chemo. I do know the chemo is making it very hard for Wayne's gums to heal enough to get his dentures. We are hoping by the beginning of March he will be healed enough to get his impressions. Anyway, we are seeing the neurologist again on Thursday so I will try to explain his brain damage better next post.
This is a short post, but I will try to get another one out soon after seeing the neurologist so I can explain that.
Is anyone out there?
ReplyDeleteI didn't get a chance to ask the neurologist to explain the brain damage again, but as I understand it, the radiation left fissures of dying brain neurons. I think he said it could continue to get worse. This is bad news, but Wayne's had brain damage before with neurons that were cut out, and we worked with him in his speech therapy, and he got better. In recent years his speech was really quite good. He can also have physical therapy that will help stabilize him, and he starts next week. We are going to ask for pool therapy, and the pool he will be in is heated to about 97 degrees so he will feel warm. While this won't bring him back to normal, it will help. And if he hadn't had the radiation, he would be dead right now. Let me know if you have questions!
ReplyDeleteSorry to hear about the divorce but we all have to make scarifices even though it sucks.
ReplyDeleteTo hell with normal. Are any of us really normal anyway? My way of thinking is, "it is what it is," and we have to do the best we can with the hand we are delt. God will see us through every step of the way.
Pool therapy sounds good to me, the warm water and all. Especially after such a cold winter. Enjoy.
Amanda I am glad that you are there to visit. Hopefully you will be able to come back in April so we can see you too. Love to all.
It is what it is. And God is Good. Sorry to hear about today, must have been a tough one. Sending out lot of love.
ReplyDeleteSad to hear that you have been having a rough week. Hopefully news from the Doctor today will be encouraging. Glenda said she would keep me updated throughout the day. I think it is time to be pro-active about getting some medicinal marijuana to increase your appetite. You need to eat to keep up you strength. Never forget that we are always with you along this most difficult journey in you life and remember you are not dying of cancer, you are living with it with much courage. Love you much.
ReplyDeleteWe haven't pursued the medical marijuana because Wayne's doctor doesn't seem amenable to it. He doesn't even like to give him pain meds and seems quite put out when we get them somewhere else, but Wayne has a lot of pain some days and he needs pain meds. They have never proved that he doesn't has cancer in his spine and several radiologists have thought that it is, so obviously something is not right in there and he has pain. I am going to ask the VA doctor when we see him next week. But how easily he would smoke it is still a question. He's been too sick for a while to smoke much. I wouldn't make him take his marijuana outdoors to smoke like I do cigarettes, but still, he may not feel like smoking it. But we can try! The doctor raised Wayne's megace, a hormone that is supposed to increase appetite. But the amount has been raised before without any effect so I am not holding out a lot of hope. So I shall try hard to talk the VA doctor into agreeing to the medical marijuana. Wayne needs to eat!!
ReplyDeleteThat really pisses me off. Why would a doctor not give his patient, who is in pain,something to make him more comfortable. That is just not right and I think you should be demanding that they do something to keep him from experiencing so much pain. With what Wayne is going through, they should be doing everything to keep him pain free.I worry alot as we all do. Give him hugs from us. Lots of love.
ReplyDeleteI send all my love and prayers to you wayne, Tomorrow is a brighter day.
ReplyDeleteAlso just to comment on the medicinal marijuana debate. The evidence is overwhelming that marijuana can relieve certain types of pain, nausea, vomiting and other symptoms caused by such illnesses or by the harsh drugs sometimes used to treat them. And it can do so with remarkable safety. Marijuana is less toxic than many of the drugs that physicians prescribe every day. I cant believe a physician would be so obtuse to a patients needs. I feel its unreasonable, arbitrary and capricious for anyone to stand between those sufferers and the benefits of this substance in light of the evidence that has been recently proven by the american physicians association. At the Medical College of Virginia they were trying to find evidence that marijuana damages the immune system, but the instead found that THC slowed the growth of three different kinds of cancers, lung, breast and leukemia. As for the route of administration of marijuana, Wayne would not need to go outside to smoke his marijuana, it is editable and the oils can be extracted and mixed with smoothies etc. Also there is a medication called Marinol witch is available by prescription in capsules. I guess it breaks my heart that there are options out there to relieve his pain and discomfort and the doctors are not demonstrating any compassion towards him its just not right in my opinion...
Again I send love and prayers to you Uncle Wayne!!
Read the post I wrote about Wayne's doctor and us wanting to change, A new doctor would have been better, but we didn't get to change and I really don't like ours, Glenda and I are both afraid he;s going to kill Wayne.
ReplyDeleteThen take matters into your own hands. At this stage there is no reason for Wayne to be in any pain, and given that it is a fact that marijuana will increase the appetite, find him some. There's no reason not to, and I'm sure it's not that difficult to find. I know that Mom told me one time that she wished she wasn't afraid to try it to make her pain go away. There should be no hestitation at all.I can not stand the fact that my brother is in pain when there is somthing that can help. Give him hugs from us.
ReplyDeleteHey Wayne, when I talked to Glenda the other day she was hopeful that you would get out of the hospital today, so here's wishing you luck. Now I may sound like a nagging older sister, but tha's ok. You need to eat, even if you don't feel like it. It is so important to get your strength built back up.We have alot of visiting to do when we all get home. I have been trying to get in touch with Susan, so hopefully she will be able to come home also when the rest of us are there.Thinking of you always. Much love to you.
ReplyDeleteSorry it took me so long to respond. We are planning to change doctors. I really don't like the one we have, but last time we tried, our doctor didn't want to give Wayne up as a patient. I was pretty upset. We will go about it differently, but we will be getting a new doctor one way or another. Meanwhile, we have the VA doctor and an appt with him on Thursday, so we will ask him about the medical marijuana. Plus we do have some good pain drugs for the interim. Still, that doesn't address the lack of appetite, which we know the marijuana will. We'll see what happens. He's going to be in rehab for a bit once he's out of the hospital so the illegal kind probably won't work. But we will get it one way or another.
ReplyDeleteGood Morning, Hope today is finding you feeling better. Glenda told me that you have eaten more in the last couple of days than you did in weeks. Glad to hear that. I know I sound like a broken record, but eating is so important so you can regain your strength.I'm sending you smiles,hugs, and kisses from us. Love you much.
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