It's getting hard folks. Dad weighs in at 112 pds, not much more than a skeleton. I can't get him to take more than 1,000 calories a day. He was getting more than that but, a family member came in and decided to start mixing the water with the formula. She was trying to do a good thing and was worried about dehydration...but, they hydrate him at least weekly at treatment, they don't feed him. I need to push calories (Per Doctors order). And now...he like's having the formula watered down but, then he is too "full" to push more formula, so he is losing out on vital calories. Part of his adversion to formula is due to complication with is g-tube placement that caused him extreme pain for 3 weeks, and pain any time his stomach muscle began moving the contents through his body. Apparently he has "abnormal anatomy" which made the placement of the g-tube funky. But even then, the Doctors did not get how much pain he was being caused...until they replaced the one tube with a mickey button. By then he had such an adversion to any touching of the tube or putting anything in it, it was torture to get 1/4 the number of calories in him. Now he is doing better but his stomach has shrunk, his appetite is GONE, and the formula causes phlegm which he can't stand.
The pain is nearly unbearable. He is on a narcotic pain patch, and two narcotic pain medication he gets through g-tube. . Even what he is on BARELY touches the pain. His neck is completely raw. THe parts that aren't raw look VERY dark from the radiation.
The inside of his mouth and throat is raw, with sores all inside and down it. His tongue feels on fire. He has a ton of phlegm all the time, and regularly clears his through and spits large amounts out of his mouth...this is very painful. He has NO taste buds OR saliva glands so his mouth is VERY dry, he says it feels like cotton balls.
It got hard VERY fast.... he did REALLY well for the first 5 1/2 weeks and then it SUDDENLY got REALLY REALLY bad. We explain this by saying during the first few treatmemts symptoms/pain got a little worse....then, it suddenly got exponentially worse with each treatment...
HOWEVER...WE ARE DONE WITH TREATMENT! Yay! We finished last Wednesday (I actually wrote the first 1/2 of this post last week and forgot to post! OOPS! NOw we wait and see, wait and heal. THey can't evaluate the tumor or spots where it has spread yet due to the swelling and inflammation. It may look like the tumor has grown when really it hasn't, it's just that everything is so swollen it looks like it has grown. I found this odd because when my Uncle had this cancer they DID evaluate before treatment was even over, and told him it wasn't working, he was terminal. It all makes sense though and my Uncle was sick 8 years ago so perhaps they have just learned more since then.
We are doing a little better about the calories this week, it's still hard, especially if I am not home all day to bug him about it.
In other news, while my estranged sister did come over for Christmas and put on a show about wanting to "make things right", wanting to visit my Dad, cried, said she was sorry etc., and then never even bothered to call for MONTHS after....she called me today and asked me to do her hair for a party. It didn't work out but, she did invite me to a move this weekend. Both of my sister and I are going...that is a huge step for us. I so wish that having a relationship with them was easy. I wish our parents had cultivated family importance and good sibling relationships in us...
A friend came over and helped me do some deep cleaning which was SOOOOO appreciated! My Aunt has been a huge help in dealing with my Grandmothers affairs and squaring things away where that is concerned.
I admit I am scared. Very scared. It's SO hard to see him in so much pain. I cry nearly every time I leave his room. I HOPE this treatment will work but, I fear it may not, or if it does, the cancer will come out. Sometimes I have nightmares about him dying in his sleep because his body just couldn't take anymore. I am also dealing with anger directed at my Mom and Sister. My mom should BE HERE. She should be doing MORE. She should be both a wife and a mom. I know mentally and emotionally she is not capable of taking care of financial matters but I still have some frustration that she cant, and doesn't. My sister hasn't called 1 time since diagnosis, and she came over only once, and that was to see my Uncle who was visiting from out of state.
The worst part is my Dad is not saved. He has NO HOPE. He has lived a joy less life and he is afraid of dying. He has lived a life of misery, bitterness and anger. That makes me the saddest... I want him to have peace. I want him to believe and know that we will be taken care of by someone greater than him. I want him to not worry about finances, my schooling, us "losing everything".... He lives in constant stress, worry and anxiety, not a good combo for fighting cancer...
I love him all the same, and I savor every hug I get from him... I'm learning more about being PATIENT and just kind. I wish I could do more, especially to make him feel at ease about me handling things if something does happen to him.