back on line

Joy · 10-02-2008, 09:44 AM

And thank goodness, I missed my daily, hope-inspiring readings here. I was doing research within this sight and I swear it is so easy and so informative-who needs Google, when we have this site.

I have had trouble paying bills and apparently some people don't like that and will suspend your internet service for it. Go figure.

I met with my local onc and after looking at the progression while on herceptin dm-1 (something I am still mad and perplexed about) she recommended and I agreed to, Gemzar (a new one for me) with carboplatin and herceptin and zometa. I start Monday. I am not terribly worried about the drugs themselves, just about their success against the cancer. I think in all of my research here, I saw some good responses to gemzar and various combos. If anyone can give a shout out about it, though, I'd appreciate it.

I loved reading about more success with tykerb/herceptin and other creative combinations. I am so happy for everyone here who is toughing it out, keeping informed, sharing their hearts and souls and being so supportive. I tend to get on here when my time is so limited that I can't post or respond to everyone. I want to and my prayers include all of you.

My man is being so great about this dumb stuff and he would like to know more, which I am afraid will scare and worry him (he is a worrier and quite an empath-a hard combo). But he wants to know how to be supportive and I am so happy about the newish forum for caregivers. I think it will be better than any local support group, for now anyway. I feel he is a natural at support and caring, but I understand that he feels it is not always enough.

I have to share the best things in my life are my kids and Luca and his kids. If it weren't for that I would be a very sad case. The world seems so cruel and hard lately, globally and locally. My sister has had some recent trauma and I just don't know what to do for her. I love her sososo much and she does so much for us and now I feel helpless. My oldest, best friend is being seriously stalked by an ex-girlfriend of a man she has only dated a handful of times (this woman is even moving to where my friend is moving and got a job at the same place-all after pulling a gun on the man in the middle). Another friend of mine was just dxed with anal cancer. My ex-husband is such a, such a...well you know what (not nice word for the forum and feel free to come up with your own not nice word). I made the mistake of bringing up child support as he claims he has the kids 50%, but he doesn't (there are only 2 days a month in which I don't see my girls at all-50%-don't think so) and I felt that should be re-evaluated. He makes almost $8000 a month , I just found out and he is broke-riddle me that. My income is only due to family support and it is about $2500. He can claim the kids on taxes, I can't. On his weeks I do all the school pick up and after school lessons and homework and snacks and friends (which I love doing). I just feel a little taken advantage of. And when the kids are with him for his overnights, they call me for EVERYTHING, sometimes 6 times in an evening. Usually they are in tears as he yells at them a lot or they are hungry or bored. Luca says I should at least get an 'on-call' fee. It breaks my hear and interrupts my off-time, which is very little anyway. And when I tell the ex this he calls me a liar because he doesn't even know they are calling. He is a computer game addict and has been for along-time, but this is the worst it has ever been. The kids say he is always playing games and can't be bothered.

He is a very hard person to talk to as he is quick to yell,very defensive-almost paranoically so. He is accusatory and snotty. He has a form of bi-polarity and does the typical, "I feel fine. I don't need my meds," thing. He has violated our divorce agreement in a number of ways and I have let it happen because I wanted an amicable relationship for the kids sake. But now I am realizing that the it really isn't amicable. He is insulting and very unpredictable. So it is really a farce. I am thinking a legal consult would be good about now. He says he should give me less money becasue it is 50/50 (again, NOT!). And he filled out some worksheets (the wrong ones I noticed) that say he should give me less. I filled out the correct forms and found quite a different story. He does not recognize that child support and provisions in the divorce decree are 2 different things. He is supposed to and has always been supposed to pay half tuition. He never has. And now he is telling me a different story about tuition every month. At ceratin times he tells me and the office manager at school that we are splitting it and then turns around and tells me it is all covered in the child support. Then the story changes again. This has been happening for 3 months now. He also said that the $400 I paid for school supplies and fees should come from the child support. Ugh. My stress level over money has skyrocketed and coincidentally so has the cancer. I think I will blame him for that right now. Sorry to vent it is just contributing to everything that is going on.

But, tomorrow I turn 41, something I wasn't sure I would see and for which I am so GRATEFUL. Luca has been doing special things for me all week and it will continue through the weekend as I understand it. We will have our first night without either sets of kids on Sunday. That has not happened in a LONG time. So I guess there is a surprise in store. He gave me CD the other day and I cried as I realized that no man in my life has ever celebrated my birthday in such a special and giving way. It was only a CD, but this was after flowers and breakfast out. And pre-day wishes everyday. My first husband did things like that to a degree, but that was in the 80's. I am so moved and feel so blessed. My kids are doing special things for me everyday as well. And he is helping them to do some things for me.

My daughter likes to design houses in her free time and yesterday she was working on these drawing and showed me that they were her dream house. I looked them over and she had included rooms for Lucas' kids as well as us. It was so touching and happy. I just hope for that future.

With so much LOVE to you all,
Joy

mts · 10-02-2008, 10:06 AM

Oh Joy !

I feel for you with all your family issues... especially your ex and his unwillingness to be a real man.
My husband deals with family law and your case sounds very familiar to most divorce cases... At the end of the day -Your behavior and attitude are what will help mold your childrens' future. Stay strong and true and that legacy will live on.

You are a shining example of perseverance- both phisically and spiritually. Hang in there dear warrior !

xo
Maria

BethC · 10-02-2008, 11:03 AM

Joy,
I am always happy to see your posts and get an update on how things are going for you. You are such a positive influence on this board and I know for your kids and Luca and his kids.

I'm sorry about the money issues with your ex. It might be time for your lawyer to be involved in getting things straightened out. It sounds like he needs a refresher course. I used to practice law (a whole lifetime ago!) and it's better not to let these things get too far down the road.

My birthday is Monday (42 - yikes!) but I have to say I'm not getting the royal treatment like you are! Enjoy!

I hope the new medicines treat you well! Keep us posted

Love,
Beth

Mary Jo · 10-02-2008, 01:58 PM

Joy.......Happy Birthday. It sounds like the birthday festivities have been on going and fabulous.

....AND that man of yours..........well, he sounds absolutely like KEEPER MATERIAL.

I'm so happy for you and pray the blessings just continue to rain down on you and your entire family.

Mary Jo

Becky · 10-02-2008, 08:19 PM

Dear Joy

Your picture alone always makes me smile. I could go on and on but its late and I wanted to respond right NOW to one item in your post (I'll post again later to reverberate my go get em cheer).

Just in case you have to prove how much time you have the girls versus the ex - start writing it down (including the phone calls). Do it for a month. It'll be a pain in your a__ but you will have some ammo if you have to have it. Even put down what he's doing if you know (like a Saturday the kids are with you but you know he's going to Nascar or on a date with Jane Doe).

You might really need the info and then you can prove that you have them 93% of the time and he has them 7% (and its really 4% because they call you X amount of hours while they're with him). If you have to go before a judge its better to say I know than I think.

Good night sweetie

chrisy · 10-03-2008, 09:00 AM

Joy, what a load of stuff to deal with!

Just an observation...
Thanks for the update on your treatment plan. I noticed that that took up only a tiny portion of your post. Sort of like your approach to life.

I love how you keep cancer in it's place - this crappy life circumstance you are dealing with - but it does not take up ALL the space in your life. You have kept room for bill problems, family issues, promising and joyful relationships, dreams of dream houses. In short, to be a complete person. You are an inspiration to me and so many others.

I'm so sorry that right now your "in addition to cancer" life has so much turmoil and crap and frustration but you got some great advice on steps you can take to resolve at least some of it.

Thanks for being such a fine example of a WHOLE and BEAUTIFUL person living with cancer.

I just love you!

Jackie07 · 10-03-2008, 10:46 AM

Joy,

Happy birthday! Thanks for the note. You are amazing! Have a wonderful celebration for the big '41' and many more.

Sherryg683 · 10-03-2008, 03:25 PM

Joy, I am sorry about your ex and that you are having to go through this..sometimes life just plain sucks. But I guess it beats the alternative. It's good to hear you have a good man in your life now in Luca. I remember when you were doing the online dating thing..did you meet him there? You are in my prayers that the new combo will do it's magic..sherryg683

Esther · 10-04-2008, 01:08 PM

Happy birthday Joy, and so glad you have found a partner to enjoy your life with.

May you have many, many more!