really need prayers

[MJ]

my mother's mri results were not good. apparently the ct showed that she only had 2 brain mets (thus she was a candidate for the gamma knife), but the mri shows 5 more (for a total of 7). the radiologist suggests whole brain radiation, 5/week for 3 weeks. this is the first time in nine months that my mom and i completely fell apart, so much so that i couldn't get out of bed for the last 1 1/2 days. it is also the first time my mom said something directly about "not making it." i wanted to see what other's experience with wbr has been. everything looks so grim right now. it's even more frustrating in some aspects because my mom is still walking around and cooking. she's a little more tired than usual though. this disease just makes your life flip upsidedown. i have been more frustrated throughout this whole month, and i feel somewhat guilty for venting constantly. i read the previous post about trying to determine if you are just sad or depressed. i can totally empathize. but it's like i can't step away from my mom's illness for even a second to go to the doctor and find out if any drugs could help me. i'm sorry about ranting so much. i don't post responses as much as i would like to other's posts because i feel that i don't have the right things to say, so i apologize for that too. my family has always counted on God to lead us, but it's so hard when it seems as if He is just watching and not actually helping. but i know that's not true too, it just feels that way at times. i guess it's just been an extended period of time that i have felt this way, and it breaks my heart to see my mother so scared and sad. my friends keep telling me that i need to get away and take time out for myself because i basically dropped everything as soon as my mom was diagnosed (i.e. i quit my job which i really liked). but it's so hard to balance your own life with everything going on...i'm sure you all have been there. it's so hard because everything that i loved to do in the past seems so frivolous or i feel guilty for going out when my mom is stuck at home. so i completely absorbed myself in my mom's illness, forgoing almost everything else that i used to do. i guess it has all just hit me now, and it really has come like a deluge, so i could never have anticipated how much it would devastate me. i keep telling myself that the year will get better, but it just doesn't seem to be. i'm sorry about this extended post...i guess i'm being rather verbose for someone who doesn't usually write much. thanks for listening. God bless.

-mj

[Fay A.]

If you continue to neglect yourself you're going to burn out totally. Can't get water if the aquifer isn't recharged. Make yourself take time out for you.

And vent away...it's part of why we're all here. To help one another through the rough times, and to share in the good ones.

We all go through periods when we are the takers, and other times when we can be the givers.

You hang in there...

[Melinda]

Oh, MJ--

Reading your post took me back to where Geoff and I were a couple of months ago.

I want to assure you that your feelings are NORMAL, even if you can not see past the fact that they are engulfing you right now.

Geoff is away on business right now (the first time he has dared to leave his mom since her dx)--but I will ask him to PM you upon his return.

His mom had 12+ mets in the brain and had WBR. The latest diagnostic report we got (about a week ago) indicated that the vast majoity of these are now gone, so she may be able to tackle the few that remain in another--more targeted--fashion. And, just as important, her quality of life is amazing.

I will let Geoff fill you in further. In the meantime, please go to the "Good News" section and read Geoff's post dated August 1st.

Please take heart and listen to Fay's advice. She's one of the wisest woman I have ever "met". And L*%d knows she has been through H*&L and back.

You and your mom are in my thoughts.

Melinda

[SJAS]

Venting is what this place is about and by doing it here, you can keep putting one foot in front of the other. I don't get to all the posts as much as I'd like to either (I especially don't seem to make it to this section much - just too much going on). You don't need to add guilt to your burden. WBR is no picnic. Here's something I posted earlier on Steve's experience.

In Dec., Steve was to have WBR. We literally cancelled sitting in the radiation office for the first tx after having done some extensive research the night before. We demanded to see a Gamma Knife specialist and it seemed Steve would be a good candidate. The Tumor Board required a triple-dose MRI and by then Steve's tumors had disappeared from chemo. So all tx ended, but the controversy did not. His onc. and radiologist both wanted him to do WBR anyway prophylactically. The neurosurgeon totally disagreed and said WBR is too major of a step to take unless absolutely necessary. We finally just had to make the decision and live with the consequences. We refused WBR. Unfortunately, by Feb. Steve had 15 brain mets. He then had to do WBR, but we both still have some concerns about it. His health was terribly impacted by the WBR. He was completely wiped out and is still in a slow recovery. I would DEFINITELY read up on both procedures, and see a Gamma Knife specialist. I have read that some places are using CyberKnife for brain mets too.

But, the up side is that we know some people who have done very well after it. Keeping them in mind, helps us to keep going. Tell your mother, this is just another part of the journey and to keep your mind focused on the goal of beating this monster.

[Terry]

I’m like you. I don’t post very much and I feel like I take more from this group than I give back. I figure some day I will be able to give back. Right now I need the help of these wonderful people. Don’t feel as if you need to apologize. Every one here understands.

This is your precious “Mom” and it is, yes, heart wrenching. If you need to be there for her, so be it.

Terry

[ViVi]

MJ,

TBone went through WBR in Feb. and did great until very near the end of his 28 (I think) treatments when he lost ALL energy and appetite, which he never got back. TeeTaa, Teacake and I agreed last week, however, that we are glad that he had the WBR because we know that it DID shrink his brain mets and he got rid of those awful headaches. But more importantly, we think the WBR probably prevented him from having seizures and/or 'losing his mind', the two things that he was most horrified of doing to his family. He lost his hair on the 10th treatment but he was still feeling good then and got a good laugh out of his kids combing his hair out by the handful while the 16 year old son sang "You Are So Beautiful".

Right now you need to take care of YOU or you will not be much help to your mom. I know that's easier said than done but, believe me, it's the truth.

ViVi

[Ann]

I know how you feel right now. I was totally obsessed with and overwhelmed by cancer after Dennis was diagnosed. I read everything I could get my hands on. I stayed up late at night searching out information online. Thank God for the help and guidance of this group. I really believe they were my salvation during our bout with cancer. Thinking back, I have no idea how my friends and co-workers handled me. Dennis's illness and treatments were all I talked about. I just couldn't manage to focus on anything else. Fay is right...take care of yourself. Your mother needs you to support and help her through this terrible time. You must stay strong. Take time to do some things for yourself. You have no idea how much better you will feel if you just back off from the situation for an hour or so here and there. I know that sounds impossible right now. Just get in your car and take a short drive. Go shopping...even if it's to the grocery. Just give yourself a little breather and please talk to your doctor if you feel the need! Don't ever worry about "taking" from this group. We have all walked the same walk and are here to listen and try to help!

[Don Wood]

I agree with Fay -- you need diversions of your own, or you will collapse from the weight. We all need breaks. Prayers for you and your mom. Don

[Guest bean_si (Not Active)]

MJ

Many prayers are going up for you and your mom.

Listen, it's not frivolous - nothing is frivolous that makes you smile or lets you relax. You have to think of you once in a while. You can't be a caregiver if you don't care of yourself. You'll crash and then what?

Go do something completely wild and silly. And please don't apologize for venting. Venting is necessary!

Cat

[mhutch1366]

MJ

Gotta take care of yourself, if you are going to be able to help Mom.

Prayers always,

XOXOXOXOX

MaryAnn

[tnmynatt]

MJ,

Know how you feel. I have not been taking care of myself very well...spending a lot of time doing research, considering all options/possiblities.

Someone suggested that I have a girl's night out once a month. I started doing that earlier in the year. It has really helped me to get out and talk with friends over dinner about what's going on in their lives--get me off of total focus on my husband and keeping everything together. Take care. I am praying for you and your mom.