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Ewings Sarcoma - in chemo - does someone understand??

redneckgrl609
Posts: 1
Joined: Nov 2009

Well, I was diagnosed with Ewings Sarcoma in June 09. I'm in chemo now. I took to the first 6 rounds (orange stuff on a pump) really well with very little issues. Now I'm on a new kind & I hurt. I ache and I'm tired.
My husband and I have had problems long before I got sick. But me getting sick has amplified everything. I'm sick of hearing him say he knows how I feel. No he doesn't. I'm tried to explain that to him as nicely as I can, but have gotten very little change from him.

Really, I think I want a divorce. Cancer is hard enough. Sometimes he is great and makes me feel good. But most of the time he is a jerk. I'm the one making sure the kid's homework is done, that they do their chores, etc. I have ALWAYS worked (not prearranged that way) and he has not. When I got sick, I told him he needed to get a job, any job... He has never even looked.

I feel guilty that I'm not providing for my family like I used to. I feel lazy that I sit around all day doing NOTHING... It's driving me crazy!!!

Does anyone have any advice for me? Does anyone get where I'm coming from with issues with family members??

I have to start radiation now - after the doc said I wouldn't have to. And that scares the crap out of me! I am tired of things changing...

gbworld
Posts: 1
Joined: Dec 2009

My daughter Miranda was diagnosed with Ewings in 2007, so I somewhat understand what you are going through from watching her. I am not sure about your husband, but this disease is hard on the entire family, and this might be his way of coping. And cancer magnifies things. I am not sure I can condone his way of coping, but I would try therapy of some sort prior to taking a step that will magnify any financial problems the cancer might be causing.

Radiation is still very common for adults with Ewings. This is due to the fact that adults cannot handle the chemo kids go through for the disease. Radiation means they are not confident they got everything. I would talk to your doctor frankly about the radiation, however, and make an informed decision on whether or not it is necessary. Often times adult oncologists are not well versed in childhood cancer, so make sure it is not a knee jerk reaction. Talk to a pediatric oncologist for a second opinion if you don't like his answer.

My daughters site is www.caringbridge.org/visit/mirandabeamer. Leave a message if you want to connect.

Peace and Grace,
Greg

LindaDawn
Posts: 25
Joined: Feb 2009

I went through the Ewings protocol for a different and even more rare cancer. I survived it but I too had relationship difficulties and trouble because I could not take care of things the way I have always done. I was fery fatigued which,at times,made me feel as though I was depressed. I didn't want to get up, everything felt like too much trouble, what was the point. I had to keep reminding myself that my fatigue had a medical cause. I am through the treatment, my hair is growing back and my energy is returning. I don't think It would have been wise to make a major decision about my life during that time.

nemom4
Posts: 15
Joined: Mar 2010

Not sure how this works. But I wanted to let you know you are not alone. I was diagnosed with ewings sarcoma on my 9th rib in October 2009. I had 6 rounds of chemo. And 3 ribs removed in January. Chemo has started back up again. Would be nice to talk to some one else going through this. Let me know if you want to talk.

lidljb6129@yahoo.com's picture
lidljb6129@yahoo.com
Posts: 1
Joined: Mar 2010

im not sure if i can help but i was diagnosed with ewing's in may of 2009. i went through the orange chemo also. 6 rounds of it. then i had a major surgery to remove the cancer and most of my hip and more. then i went for another 9 rounds of chemo with different meds. i was very sick through out the whole thing. though i was only 17 when i was diagnosed. i've also had to deal with the father of my babygirl being a real jerk. and i no longer see him. but the things he has done are unforgivable. im not sure thats what your going through. but i also have had a lot of issues with my dad. my mom has to work to pay the bills and my dad quit work to take care of me and help take care of my daughter. i love him more than i can explain but we spend WAY to much time together so we argue a lot. i didnt have to go through radiation because the spot that the cancer was in they fully got it out. but i did have to think about the radiation. because they told me if they couldnt get it all they would have to do some spot radiation. i was terrified. but when im afraid i go to someone i love and talk to them about it. its usually my mom. even though she isnt home all the time its still easy for me to talk to her. but if you need anyone to talk to im here and i hope everything goes well. im now in remission and pray to stay that way. you will be in my prayers. :)

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