4/26 Each week that passes new sypmtoms keep popping up, the nights and days are long but yet not enough time in the day. The ascites (fluid from the cells) is worse, his stomach is very bloated. It's kind of like when you sprain your ankle, all that swelling. That's whats happening to his stomach. There are black and blue marks on his stomach (about even with his belly button) from internal bleeding. His liver is starting to slow down, the liver re-vitalizes your blood. He has advanced disease and the liver isn't clotting the blood. He has frequent bloody noses, controllable. His gait (walking) is very unsteady. He stumbled three times just today, and if he is sitting down on a step or squatting, he loses his balance very easy and falls. It's awful to see him this way. He has lost a lot of muscle, seeing him without it is so strange. He still has occasional back pain...when he moves...I say, 'honey, how is your pain?' He says, 'fine til I move.' He's a funny a guy. But, for the most part, the pain is controlled or easily controlled. It is bothersome for him to talk, he gets extremely short of breath. He got up today to get something to eat, (yes, I stepped out), got so short of breath he was panting when I came home. I give him Roxanol (the liquid morphine) to calm him down and slow his breathing. It has sort of a sedating effect. Effect or Affect? Lisa can you ask Steve about that again? Anyway, His appetite is pretty good, as they have increased his MS contin (morphine) they have increased his Decadron, that is the steroid that reduces inflammation and increase energy and appetite. But, there is no room for the food-the melanoma is growing in his organs and they are fighting for space. We had to call the nurse out last Friday because he was having some discomfort just below his ribs and he was so distended. They increased his morphine again, decadron and added aldactone. That is a fluid pill. This is an effort to get rid of any or some of the fluid build up through urination. Dr. Schucter is skeptical it will work, but might as well try. Nurse says that it will get worse. So, let me help you understand something, in case you don't. If you do, I apologize. Gary has agreed to comfort care. There is nothing more they can do for him treatment wise. He will not see a doctor, go to the hospital or have blood drawn or a transfusion. The nurse from Hospice will look after him and visit as needed. She has been coming once a week, next week, she will start coming twice. They are very knowledgable about death, dying, being comfortable what meds work the best and how much they need. They get orders from Gary's oncologist, who pretty much agrees to what the nurse requests and an order if placed for his meds. We do not pay for the meds, they come to the door via Fed Ex. It is all included under Hospice Services. They are wonderful. They have offered a home aide to come out and help take care of him, he is not interested. I bathe him, help dress him, change his sheets/comforters every day. He is so bony, his little hinny needs lots of cushion so I put a comforter down, then the sheets, then another comforter. I've never done so much laundry in my life. >LOL. He needs cushion. He can still get around, to the bath- room or whatever, slowly, but he can do it. This has gotten much worse thoough within th last week. This really sucks. The kids are doing okay. Dallas hasn't asked much this week. Devan told daddy to, 'lay down, rest. You got noma noma in you back'. She is precious.
I just had a visit for a couple of days from one of my dearest high school friends, Lisa Cornell Moreland. Keuka college grad I might add, stay at home mom. She's a great mom, she spoils her kids. She spoiled mine too...she brought her 10 month old son, Alexander. It was nice to lay my head in her lap, and she rubbed my legs and stroked my hair and I cried. I do not know what I would ever do without my friends. Lean on them, they are your friends. My girls didn't want that baby boy to go. They were just weird about it. Singing, baby talking and begging to hold him. They are sweet.
Thank you so much for the guestbook posts that I have received...even since December when I started this page. Some have mentioned, 'pity', 'feeling sorry for me' and many have said, I'm sure you don't want that. The hell I don't! I think it should be re-phrased like, love from my heart to yours. Me loving you, feeling your pain or blah blah blah. Or something. It really does make a difference that you and you and you feel this or that way. Cards, letters, e-mails, phone messages, talks...whatever....I don't see it negatively. I see it as caring. Thank you.
So, I was able to get away last Friday to a dinner for a co-worker, friend who is leaving her job. I was to leave at 6:30, at 6:00 I was still feeding the kids and hadn't showered. Gosh, I didn't want to go. My kids wanted to go play with Jenna and Ethan so bad, (that's who was babysitting) so, I threw up my hair, changed my clothes and left. I had a really nice time. I was glad I went.
My house is great, still lots to do. No time though. My three stoogies keep me going. Til next time. love and laughter, Shelly Lyn |
