Bravoooooooooo....Sounds like a plan. Keep up the good work, Donna and as I said before you will be OK..You are starting to sound like you are organized..As we have talked before...Take care..Carol...

Good for you, Donna! You certainly do NOT need any added stress - especially one that runs all over the house peeing on everything. Re hair loss with radiation, my son's treatment involved radiation only and the hair only fell out in the beard area and at the spots in back of his neck where the beams were directed but it all came back. And since your Mom doesn't have a beard. . . why would she need a wig??? You are right about the positive thoughts and even pretending happy thougts. It really does work!! I call it positive visualization. Keep on keeping on, Donna.

Donna,

Hang in there!!! Sounds like you started to whip your family into shape. Good for you.

Did you check with the RO if your mom needs to get any dental work out of the way before she starts treatment? Did he give you a start date?

Jerry

I LOVE THIS FORUM!!! and everyone here...
thank you.

Jerry-I'll call you later.

YOU ARE VERY WELCOME!!!! I told you they were great!!! Carol....

Hi Donna, GOOD FOR YOU!!!! It sounds like you are taking back control of the situation and setting limits. It's amazing how much better you feel after you get things off your chest and start dealing with them. When Jack was at the point your Mom is at now I had heart to heart conversations with several family members. To my great surprise it actually worked and made me realize that I should have done it years before. They understood where I was coming from and I stopped feeling victimized. Very liberating.

There's no reason I can think of that Mom would lose her hair so that's one she can probably not worry about. As for the medication short acting drugs such as xanax or Ativan are effective and both come in several doses. What's good is that they are taken as needed and you decide when that it - if at all. If something is making you a zombie it's probably too high a dose and you can cut it back. I would find out what dose range the doctor recommends and start with the lowest one. Sometimes it's trial and error to find what works.

Hope today went well.
Regards JoAnne

Hi JoAnne,
Things went about as well as can be expected. I really like our primary office, they are a terrific bunch of people and I guess being a patient there for years I have just come to realize how lucky I am to have such a wonderful group participating in my care and that of my family. I should take a minute and send them a note as such. The doctor I saw yesterday gave me a script of ativan for mom, told her she can score it if she felt she didn't need as much. I am on my way out in a few minutes, nothing new to post except the same frustration at waiting and watching my mom suffer in pain the times the meds are wearing down. I told her we could ask if she could take it sooner, she doesn't want to. I think she's going to be difficult to get to take her meds that she will be going on after the radiation starts--I am assuming that she will probably need something more. I have read posts here where some people said they did fine on radiation treatments...I pray that I will be one of them saying that about my mom. How is Jack? I read your posts all the time, you are always helping someone-God bless you, but I don't recall hearing how he and YOU are.
Donna

Hey Donna.

I do not remember. Is your Mom getting a PEG? I know I am. Then you can put her meds right in the PEG.

I take my pills right on the 4 hour time frame. This keeps it level at all times. (pain)

THERE IS ABSOLUTELY NO REASON FOR HER TO BE IN PAIN???

If she is hurting before the time limit she needs something stronger. I took a double dose for a whole bottle, then the Dr. gave me something stronger. If her meds are not agreeing with her tell the Dr exactly what is the problem and he will give her another type. This is normal. There are many different types of pain meds and people react differently to them.

Also have her drink a small glass of prune juice daily. It will ward off constipation, which is a "given" when taking pain meds. Prune juice is my choice but there are many other options.

After one bout with it I said, never again. Drinking that small glass everyday keeps everything "moving". And now I have actually acquired a taste for it.

Also I would suggest making and eating all her favorite foods everyday as it may be a while before she can enjoy them again and she needs to be hydrated and up to par on vitamins and nutiants. She will most likely lose a fair amount of weight in her TX.

Thanks.
I have been trying to make some of her favorite foods...steak, except for filet mignon, is out, most of it is too tough-no matter how good a cut. Pastas bother her tongue. Most of her other favorites I have been avoiding because she has her heart condition now to be careful of. I think she is ready to fire me at times. I went out for dinner the other night and came home to find out that she and my dad had homemade creamed dried beef!! I frowned and told her that was a bad choice and she tearfully told me that it felt so good to eat it....it had flavor, the texture didn't hurt her and she finally felt satisfied. I feel like such a jerk at times. I am trying hard to meet all her needs and still be resepctful and let her have her independence. Geez....just writing that makess her sound so old and unaware..not the 63 yr yound woman that she is! I asked her to try to pick other heart friendly choices, there has to be some. I can't explain how confused I feel trying to help her and dad in all these areas. They tend to not think about these things. I am so opposite from them-hard to imagine sometimes that they are the people who raised me. I think part of the reason she may be in pain is that she was gardening the other day, I think she may have aggravated her sinuses and considering this is a weak area...well, I'm hoing that is all it is. I hate not understanding what is happening. Though, I do have a good friend who is a retired doctor and his wife was dying and there wasn't a thing he could do but watch...I guess it doesn't matter what you know, or think you know, this blasted disease does it's own thing.

Hi Donna, Jack is doing well. He's been tired lately but that turned out to be a thyroid problem - very common after radiation. He's been put on medication for that and it should improve. A couple of suggestions on the pain management, especially when radiation starts, is the fentanyl patch (starts at a dose of 25 and goes up as needed); using the existing pain medication on an exact schedule - not waiting until she is pain, that doesn't offer good control; or "layering" medication, using the prescription one followed 2 hours later by an extra strength tylenol to boost the effect and provide breakthrough control.

Jack hates taking medication, it was a new experience for him. So naturally the pills didn't work because he didn't take them often enough. For him the patch was great, it's a constant level released over time and you only change it every 3 days. He wasn't zonked out on it like he was with the others but everyone has different experiences.

I know that feeling of not understanding what is happening. I think you need to give yourself a break on that one. I'm a nurse who works in hospice and trust me I was not prepared to be a caregiver to my husband. The same is true for patients. There is no one on this forum who felt prepared for this. It's not a natural skill set, it's just a situation that we are all thrown into, and we do the best we can.

I'm not going to tell you not to worry when your Mom gets something that could be a symptom, just try to not get ahead of the information you have at any point in time. Get it all checked out by the medical team because that's the only way to know for sure if it's a problem. As far as understanding our adult relationships with our parents - good luck with that one. If you figure it out you must tell the rest of us. It's one of those mysteries of life things.

I'm doing well - now. You should have seen me a year ago. Of course I still worry that the cancer is going to come back, but not at the same raw pain level as last year. It will always be a fear, but it no longer dominates our every waking moment. Remember that we are not our diseases, we're just people dealing with something extraordinary that we did not chose. For what it's worth Jack and I can now have entire conversations that have nothing to do with cancer. You'll get there too but it takes time, and it's not now at the beginning of treatment. You're doing great. Your Mom is lucky to have you.

Regards JoAnne