Hello Everyone!
Had to break away for a few days and ingest everything and also let part of it go. We went to the MO last week, I shared that with you all...thanks to everyone who replied, your advice is always so helpful and I can't think of how to say thankyou for someone always being here when I need a friend!
We have decided to go with the RO and have the brachytherapy. It's amazing how much relief fell upon us as a whole. I know I was upset about how the MO spoke but, maybe, that is just his way of telling someone what he thinks could happen. I still don't appreciate how he did it, and the fury still sparks but I am finally a little more accepting of it all. I haven't really gotten on to see what this is all about, the RO described and explained everything, of course I'm sure that there is a whole lot more to be explained. I'm nervous, and I am more calm at the same time. The trouble I am having is that every so often I fall apart...I break down in tears, I get extremely angry and at times my heart feels like it is going to fly out of my chest. Yesterday the fact that my grandmother brought over her young dog sent me into such a snit. The dog got loose, a neighbor popped her head in the door to tell us nana's car windows were open and it was pouring rain, the dog ran out and right up to another dog that is known to hate other dogs. My mom came running out the door, very upset, getting pale and yelling for the dog. This mad me madder than a hornets nest! I told mom later that I was going to tell nana to keep her dog home. She told me I can't, it would hurt her feelings. I am so frustrated, I don't want the dog here, she is a nice little papillon, not trained well, runs and pees all over the hardwood floors...and who knows about the areas where there is carpeting. I have an old male bischon who feels a need to mark his territory...double cleanup! I want nana to feel comfortable visiting. I don't want to hurt her feelings...I don't want her dog here at this time. I'm also beside myself because everything is falling on me. I am trying to stay on top of all the housework, shopping, and mom...not to mention, i have the two girls. I said I wanted to make everything as easy as possible, all agree. I am left still to do most things...that is bull....I am left to do it all. I have gotten on my kids to pull their share but when the grandparents leave dirty dishes out and food...well, it doesn't leave a good example. I must sound awful. I am already tired and angry...I miss working, I miss my life is it's only been since April...If everyone doesn't start doing the little I ask I am going to really fall apart. I am just soooo angry. And selfish...and disappointed in myself.

Donna, you need to talk to the Doctor and get some help for YOU to cope with things.

The dogs aren't an issue; neither is Nana. You are stressed almost to the breaking point, and if you don't look after you, you'll be completely ineffective.

there are many highly effective medications to help you with the stress, and there is no reason for you to feel the way you do. Talk to your Doctor, and talk to a councillor. You need to GET some help before you can GIVE effective help
Wayne

Hello Donnarose

Welcome to the harrowing world of the caregiver.

I'm so glad your RO gave you some "positives".

Take two quaaludes and write back in the morning. All will pass and it will get better.

Try to stay stong! This is what this forum is for. Rant away, it does help. We all feel for You and your Mom.

God Bless, Petey

PS. Wayne is correct!

Thanks Guys! I have an appt for tomorrow with my doctor. You're right...it's not my grandmother...but her dog ahs always driven me nuts!! I hope that whatever they give me will keep me normal, just calmer.

Donna - along with going to your Dr and getting some help there, perhaps you should share with some of your family the fact that you are stressed and feeling very worried about your mother, and there are some things they can do to help you and alleviate some of this - like your Nana leaving the dog at home when she visits, and your children pitching in a little more. You may have already said something, but I know from experience that I often silently seethe about things, but if I diplomatically talk to the person about it, it often helps...

Hey Donna,
I'm not big on medicating right off the bat so I'm going to take the opposite side on this one! I don't know that you need medications...........I think what you need is to go off on your family, and by that I mean to speak your mind and tell them how YOU feel. Take charge, take control and everything will fall into place. If someones feelings get hurt, tough, they'll get over it. Your mother and yourself need to be the focus right now, not anyone else's feelings. My husband did an awesome job with that part of it, he ran defense and interference for me so many times during treatment! He didn't care who he pissed off. Like he said, I've got one chance to help you get through this.............I have a lifetime to apologize to someone.

Trust me when I tell you that others CANNOT understand your life right now, they don't SEE or FEEL the changes to it. Not understanding makes them not see things, such as how annoying and uneccessary another dog in the house is.

Praying for you,
Minnie

Well said Minnie. Two heads are always better than one!

Thank you Ginny, Minnie and Petey.
I am going to stop by and visit my Nana today, I am going to explain that her dog coming adds to the level of stress and I won't be able to relax and even ask how she (Nana) is dealing with all this. Mom is on my side now, I nearly broke telling her upset it made me the other day. I sat down with my dad and girls last night and explained that as of right then there were new rules and expectations. As for the meds....I am going to the doctor today. I don't really want to take anything, but would like something on hand. When my brother died a few years back I tried something and I waslked around like a zombie and looked like a nervous german shepard yawning....have you ever seen one do that?? That's what I felt like! As for mom....she had a great day yesterday! She planted and cleaned her garden area, she went shopping ofr plants with dad, she was able to be up all day....the med her RO gave her has been wonderful! The only upset she had was early this moring she woke up thinking abuot what my sister had asked her about going out shopping for wigs. I never thought about her losing her hair with radiation. Have you heard of anyone having this happen? I know with chemo it can. Trying to be upbeat, I know that helps. As I tell my kids and my sister often....even if you aren't having a good time, pretend that you are, eventually you may believe it. I know ... goofy, sounds like BS, but I think it ca also turn a mood around if you try hard enough. Going to follow my own advice today.
Hope everyone has a wonderful, peaceful and easy day!

Donna --

The people who lose hair with radiation only lose it where the (external) radiation beam impinges on their scalp, and then it doesn't usually show too much (tends to be at the nape and lower hairline) if you cut hair long over this area. That's what my husband did, no one noticed his bare-naped look. With guys it also affects the beard. Sometimes the hair and beard grow back a different texture and color, which can be interesting!

However with brachytherapy I am not sure that there will be any hair loss due to the radiation, as it is very short-term.

Unless your mom is getting one of the chemo drugs that causes hair loss such as Taxol she is unlikely to have any hair loss. Cis- and carboplatin do not cause massive hair loss, although in some folks there is a thinning of hair. (Which could also be due to the radiation field, so hard to pin down).

In other words, no - she does not have to shop for a wig...

Gail

Donna, it sounds to me like you are going to do just fine with all of this.....I love your sense of humor! A yawning German Shepard, lol.

I'm so happy your mom had a good day yesterday, that will do wonders for her. She is the same age as my mom, if I remember correctly......she's 63?? My mom is so busy and active, works fulltime with a job that travels, she just got home from a six week stint in Palm Beach. If I were in your shoes, I would be doing just as you are doing now. Pat yourself on the back and KNOW that you have the strength to do all this and that you will be a better and deeper person because of it.
Minnie

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

JoAnne,
Glad to hear Jack is doing so well.
I guess I am where you were a year ago-it's hit me very hard tonight. I posted earlier under caregiver....just ramblings
I'm just very frightened and feeling useless

Donnarose,
I've been reading your posts and I really feel for you. A few 'thoughts'--if anyone had a recipe for 'perfect mother', 'perfect child' etc. they would be millionnaires and we'd ALL be fine!
I cared for my disabled dad whilst mum was in hospital dying and got so frustrated at taking him all the time, then on my 'night off', stupid sister would roll up at hospital with 6 family members in tow! When dad had to be hospitalised himself, I finally drew up a rota, in writing, for visiting! To my surprise it worked, after years of being the 'only one on call'
My partner and I have already decided that when/if I can no longer go out much, visiting will be arranged through HIM and I've got friends, with offers of help lined up, for buying me books, MP3ing music, giving me lifts to treatments etc! Each has their own skill, bless em!
On the food side, dad was always a fussy eater and wasn't into much variety. I cooked up batches of tiny cottage pies with peas and froze them,ditto casseroles and occasionally a meat pie if he could manage it--all spuds mashed, bought him his favourite 'mini-trifles'--they were calories although bad for his heart, so kept his strength up, changed his milk to full-fat--not so good for his heart, but again, more calories, and let him have his tea with 3 sugars--Hydration!
Let Mom eat what she wants--the stress and stuff will be killing her appetite!
And you organise some time that's JUST for you--not for housework or practical stuff--bath, chat on phone to friend, read a book or whatever. Get the family/friends to take over for a while REGULARLY and give yourself some 'recharge' time. I know I couldn't have coped with the 3 years I looked after dad without it.
And NEVER EVER feel 'useless'--Shit happens! You can't stop it and you sound like a wonderful, caring daughter. Take care of yourself love,
Brenda

Brenda is right. You are anything but useless - scared, sure, uncertain what your role is, why not, but useless no way. Stop beating yourself up, it's a waste of energy and unwarrented by the situation.
If you haven't already done so get some Ativan for yourself to take the edge off all these raw emotions. I think you really need it right now to help you deal with this. A year ago I got some excellent advice from seasoned members to make time just for me - REGULARLY - as Brenda is suggesting. Step away from being the caregiver for an afternoon, an evening, whatever you can swing and do something for you. Screw the housework, it will still be there when you get around to it. What good is a clean organized house if you're a mess?
You must take care of yourself first in order to be a help to your Mom. You are not responsible for everything and everyone, nor can you make it go away or go right. It's an unrealistic expectation and you will quickly burn out by trying to live up to an impossible standard.
If Mom finds something she wants to eat right now, that's fine. She's under stress too, let her handle it the way she wants. The doctors are aware of her cardiac status and they'll watch it. You do not always have to be the messenger here.
Give yourself a break.
Regards JoAnne

Thanks so much Brenda. I can't imagine doing all that you had to do, and not burning out. That must have been the most heartbreaking time for you. I am sorry for your losses. I appreciate hearing about the caloric vs heart....tonight I stopped by a Wendy's-fast food-and got my mom a vanilla frosty. She devoured it and felt satisfied. It also made her smile...that was worth more than anything. Sorry about the 'useless' comment--pretty low last night, and couldn't figure out a thing to do. All this running back and forth to the city for her appts is draining for her, ZI have no idea how it will be for her come time for the radiation txs. Today was a good day. Went to meet onc dentist--what a great person she is!! and stopped by RO's office for a script for pain. He saw us, asked mom to come into exam room and examined he and took a few pics. We didn't have an appt...he always wows me. He has to be the most compassionate doctor I have ever met. I feel very good about him treating my mom.
How are you feeling? You seem like a very strong person, I have to say, I really admire your spirit!
I have to go and do some laundry-went to go for a t-shirt earlier and realized I've done everyone elses laundry but my own!
Hope you have an enjoyable night.
Donna

Thanks JoAnne!
I am taking off later this month for an overnight with Eddie--we are big parrotheads and heading to Atlantic City to see Jimmy Buffett!! Unfortunately it will probably be about the same time she'll begin her rad txs. Hoefully I'll still be able to go and enjoy myself. I could use the breather.