Posted 8/14/2014 11:37 PM (GMT -6)
thanks for your update on Paul. there are similar things going on with the two of us, but it may be for entirely different reasons and circumstances.
have any of the doctors mentioned cachexia (wasting disease)? its a horrible thing to suggest, but even my own PCP is getting suspicious that is what is going on with me. all my eating is forced eating. I am having mild all day long lasting nausea now days, something I am not accustomed to or comfortable dealing with. So I understand that part.
with cachexia, if that is what it is, eating more, even all the protein you mention, in most cases, will not reverse the damage or the weight loss or the general wasting you are witnessing. so I hope and pray that is not the case.
I was nauseated all day, and when I was cooking our dinner tonight, it was making me feel sicker and sicker. I knew I would never be able to stomach what was being prepared. I did take a couple of bites, but immediately told my wife, that this was going to make me sick, so I stopped. I went and fixed my fave comfort food these days, a bowl of Cream of Wheat. I make it with 3 parts water, 1 part almond milk. can't get any milder than that. I forced the single serving into me, and within 30 minutes, started feeling bloated and cramped up. Not severe cramps, but enough to be very nervous and uncomfortable.
Later this evening, ate a single portion of some plain, barely sweeten plain cookies, the brand is belvita. they are mild, and I seem to tolerate them at times. also, I have been eating a few regular saltine crackers, no many calories there, and not really any nutrition, but, they do have a way of soothing some of the nausea. Perhaps Paul could nibble on a few crackers like that to help.
so for today, I only ate a total of about 420 calories, and virtually no protein. I am having a lot of trouble with meat in general. I do better if I eat an egg or two, cooked in Pam spray, not butter. I can usually tolerate a couple of eggs mixed with a pack of instant grits.
I realize that is so few calories, but it was the best I could do. I have little tolerance with either the regular boost or ensure products, I didn't know there were higher level ones out there, will ask my doctor about that when I speak to him.
So far, my energy level is not really any different with the weight loss, well, perhaps a little weaker, but my chronic fatigue has worsened considerably. I am always tired, and sleep is as elusive as ever for me, 4-5 hours of broken sleep is the best I can hope for, and with making taking 2 types of prescription sleep aids to even get that much. How is Paul doing in the sleep department?
I feel you are doing all you can for your husband, and I know how terrible and heartbreaking it must be for you to see this downward spiral he is on. My wife is a nurse, and works among the elderly and dying every day of the week, trust me, she's done a pretty good job of not falling to pieces watching my own spiral downward. Her frustration, is that with all her knowledge and training , there is nothing she can actually do to help me.
You being Paul's best advocate is wonderful, though I am sure it alone is zapping all your mental and emotional strength to do so. My hat is off to you for never giving up. I personally don't believe in giving up. I will continue to struggle forward, one day at the time, and do the best I can each day. Self preservation is a mighty strong force if one sets his mind on it.
I find it equally important to keep my mind fit every day, as it helps me to cope with all I am dealing with. I refuse to let the cancer or these medical problems get me down, I am still the same me (for good or for bad, depending on whom you ask, lol), and I will not let my medical condition dictate the real me.
Please never give up hope with Paul, still possible that something could still change or delay the outcome, you never know what might pop up, or if some providential happening changes his condition for the good. I hope his spirits are holding up, despite what he is going through, that's real important in his condition.
If you ever want to talk more in depth, or in privacy, please e-mail me, and I will be happy to exchange phone numbers with you. I am a little hard to reach by phone (ask anyone that knows me, lol), but I wouldn't mind a bit, if you think it would be useful to you and/or Paul.
As far as I am concerned, I will be thinking positive thoughts for you both, and hope and pray that he has better days ahead, despite what appears to be the writing on the wall. Nothing is over, until its over.
I trust you can get some decent sleep, so your mind will be fresh in the morning.
My very best to both of you,