Paula,

I, too, am so sorry to hear how difficult things have gotten for you. Good for you that you are looking into therapy for yourself. I did that last year and it helped immensely. Take care of yourself and get the surgery on your knee. Your own health is important now. Can you ask family or friends to help out for the few days you may need it?

All my best--
Anita

Paula,

I so know what you are going through. My husband and I had almost 7 good years after his radiation, chemo and neck dissection. Last Oct. a tooth on the radiation side started going bad. No one would touch it due to brittleness of his jaw. We went to dentist affiliated with our medical insurance. They did a "special" root canal. I think the only thing "special" was they exacerbated his down turn in health. He had a lung abscess in Feb...some of the hospital drs. thought it was caused by the bacteria from the root canal getting into his lungs. He was in hospital 6 days. He started seeing a maxillofacial dr. in our ins. group. He had a few good weeks and then bam...terrible jaw pain. He also developed 2 abscesses on outside of his jaw. MF dr. referred him to infectious disease dr. who put him on IV pump antibiotics. He went back in hospital in late May with pneumonia...3 days that time. He had another okay couple weeks, and then last Sat. I had to take him to hospital due to terrible jaw pain. He wasn't able to swallow much at that time so he couldn't get pain pills down. Another 4 days in hospital as he had pneumonia again. He is aspirating his food and pills into the lungs. Drs. at hospital convinced us he needs a PEG tube as he's lost 50 pounds in about 4 months. He goes in Mon for tube. He dodged that bullet during radiation, but it came back to hit him.
I think we may have to go back to hospital today as he has been in terrible pain all day...his jaw is so swollen. He may not be able to have tube on Monday if the jaw is still so bad. He's sleeping now. for so long, our days have been filled with his pain and not much else. I look outside my window and see neighbors going to an fro or working in their years, and I am so sad....our yard is his pride and joy. This week we had to hire a gardener as he just can't do it now. I have to have faith that we will get through this, but some days it's so very hard.....A few years ago, he was diagnosed with chronic lymphocitic leukemia. He is still in stage 0, but his white count is climbing. If we don't get him better, he will never be able to tolerate the chemo when it's time. I am scared because I am a very strong person, but I can feel myself starting to fall apart....
You are all in my prayers....
Siouxbee

Wow, it was great reading everyone's posts - I'm doing everything I can to take care of me. Jim is declining more mentally than anything and I'm going right along with him. I'm doing therapy on my knee to help the pain and have a knee brace. I was unable to keep my mental therapy appt. as there just isn't enough time to go around right now. I'm pretty much in the survival mode with Jim. He is trying to be in a happier place, but it's not working much. The breathing treatments seemed to have worked as his breathing is much better. I appreciate everyone's advice and concern - it was soo good to hear from those of you that continue to hang in there with us that continue to struggle with this horrid disease. I don't know how y'all have the strength or even desire to look at this site - I just know there is a special place in my heart for each and every one of you. Hugs to all of you....Paula

Hey Paula.

I sent you an email today.

Love,
Donna

Dear Paula,

So glad to hear Jim is doing a little better. I will always remember this saying...."God will either lighten your load or strengthen your back" You my dear have one strong back right now! I'll be praying that God will lighten your load. Hang in there.

Hugs,

Shelley

I KNOW EXACTLY WHERE YOUR COMING FROM!!! We are wearing the same shoes. I am trying to cope too it's been a lot longer, with a lot more surgeries and children who grew up only knowing this kind of life. But we are all the SAME!! It's very frustrating and heartbreaking. I am at the very exact page you are on. I know you don't know me but I do know my husband frustration and how that frustration is directed at you, the caregiver, It's a hard pill to swallow for all!!
Liz