My husband has eight days of twice a day radiation left and I am falling apart at the seams. I've held it together pretty good till now. I think I had a mini nervous breakdown at Dana Faber today in the ladies room. I started to cry and these horrible sounds came out and I was shaking all over. They sent a chaplin in to see if I was o.k. My husband had just had yet another horrible vomiting episode right after his hydration infusion and I just lost it.{not in front of him). They keep tring different things for the nausea and nothing seems to help. Basically when he gets out of bed he vomits. So to top off my day, they loaded him up with Decadron{SP?} a steroid for the nausea. Well, we got home and my husband started acting completely crazy. He got very angry and short with me and accused me of having a power trip over this whole thing. He actually called his mother to come take him home. Long story short,he finally settled down and went to sleep. Has anyone had this experience with the steroids? I hope I can help him thru these next weeks, I really feel like I can't take anymore. And my three and five year old need me and I am in the hospital with Stephen evertday because I really have to be to keep on top of everything. How can I be there for everyone...I do have my parents helping but my kids need their Mom and my husband needs his wife. Thanks for listening, I don't mean to whine I just had a REALLY bad day...but sadly my husbands was worse.

The worst is over. Please believe me, there will be a lot of pain and for a few weeks. But you will know when it is time to wean him from narcotics. The nausea and vomiting will stop in a few days to a few weeks post radiation. But pain meds will be required for a while..
Darrell

Kerry, Get your parents and his[?] to take over the meals and laundry- or suggest they get together and hire someone to come to your house and do all the chores. Try to arrange it so that all you are responsible for is hugging, cuddling, bath and bed time for your kids until Stephen is past chemo. The kids will survive- I have been caring for my granddaughter [who just turned 2]and my 14 yr. old grandson for the last 9 months and have 5 more months to go before their Mom gets home from active duty. Kids are very resiliant and will not remember 6 months from now that you weren't with them every second of the day. Be very honest with both sets of parents-tell them you are in trouble and NEED some more help. Stehpen will start to feel better at some point-but if you collapse, the whole family is in big trouble. GET HELP with the daily chores, etc. You are being Mother, wife, housekeeper, nurse, medical assistant, and have no doubt assumed some of Stephen's duties since he got sick. You can't do it all. Please ask for help. Amy

Thank you Darrel and Amy...Can you tell me what next if after his scans are done, which can't be for at least 12 weeks after his last treatment because of inflammation, what do they do if its not all gone (its a T4 tumor/ BOT). What will
that mean?

Kerry

Kerry, if it is not all gone, then you will keep fighting-that's what we are doing. Probably a different chemo drug and possibly more surgery[ John has had 2 major surgeries in 10 months.] I don't mean to scare you, but it does relate to your letting your extended families know that you and your family will need active support for the next year. We'll pray that Stephen is all clear when his scans are done, but he will not be "all well" by then. It will take a while for him to recoup from the rad tx. and the chemo. I think you should prepare for ,at the very least, 6 to 8 mo. of concentrated care giving after his treatments are over. Is your 3yr old in daycare? I assume the 5 yr. old is in kindergarten. I used to be a preschool teacher. I promise you that if you can give them loving attention for a few hours in the evening and tuck them in, they will survive this period. It WILL be hard on them if you are totally stressed all the time. Here is a suggestion for you:#1. make a list of all the things you are in charge of right now,#2. then prioritize them, #3. then see what you can delegate to someone else OR just put into a "later file" #4.If your final list of thing you have to do is too long-start again and reprioritize. Get it down to a manageable scenerio[i.e. one that saves your sanity] If you need some further nudges from this 65 yr. old warrier-e-mail me and I will call you. Amy

Thanks Amy, Your advice for the children will be well taken. His ONC said it is inoperable and I know they cant radiate again.. I was also told that these tumors dont get cured from chemo, it is just used to disrupt the cells so they respond to the radiation which is what destroys the cancer. So thats why I ask what if...

Hi Kerry, I'm sorry to hear that you're having such a hard time. My husband Jack has 11 more radiation treatments and 2 more rounds of cisplatin to go and there are days when all of us are in that bathroom crying. Hang in there. Perhaps you've already tried this but for what it's worth to control nausea we use Zofran twice a day with Compazine suppositories for break through. On the chemo weeks we add Emend for 3 days. It's an aggressive medication regime but it's worked for Jack. I also do extra hydration at home in the evenings. The peg tube works fine for non chemo weeks but I do 12 hours additional IV hydration through his port on chemo weeks becuase of the nausea. Decadron is pretty standard as a premedication with chemo along with Ativan.
There is no way to get an answer to the what if questions and you have to find a way to work through that. I'm saying that having not exactly done it myself - but I know it's where we all have to get to. My husband has extensive lymph node invovlement and while we hope the radiation and chemo will kill the remaining cancer cells off but there is no way of knowing for sure. We're just going to have to wait for the results of the scans and the check ups. I was at a low point this week trying to come to terms with it and then I ran into an aquaintance who has been dealing with stage 4 ovarian cancer for 3 years. She has periodic chemo treatments and told me when one drug stops working they try another. She's gone back to work, resumed teaching exercise classes and she just makes the best of it. As I listened to her I realized none of us know how things are going to turn out in many situations, and worrying myself sick wasn't going to get me any additional clarity.
You're not crazy and you're not alone. I hope the upcoming week is better for you both.
Regards JoAnne

Hello Kerry,
I can't really give you that long term surviors point of view because I am not quite 5 months post radiation and 3 months post surgery and in fact I start Hyberbaric oxygen trewatments next week, yes I developed Osteoradincrosis after radiation, however all of that being said let me tell you this, my ex-wife is a 15 year survior of stage 4 cervical cancer at age 30. She was and continues to be my best supporter, when I told her I had cancer she said "so what, what are you gonna do about it, remember more people survive cancer than die from it, they know more today than yesterday, get your head right and start fighting". When ever I guess overcome by the gravity of this illness and think about my own mortality (I am only 48)I think of her words and fighting attitude. Your husband can do this with you in his corner. I can't say that attitude is everything but man it sure does help, Hang in there my dear.
Always lenny

Thank you everyone. You are all so caring. My husband has now landed in the hospital due to pneumonia. They think he's apirating mucous into his lungs. He has a suction machine at home and I cant get over the amounts and thickness of this mucous. Even with the robitussin. Its also causing vomiting even with all the meds. Just when I gather up a positive attitude we get knocked down again. I find myself getting very bitter, Its like we're in this little hell of our own and I look at everyone on the outside going about their merry lives I just want to spit.I know that this will get me no where its just a total pity party. On top of it all my husband who owned a business for almost 30 years was going thru a career change right when this hit us. So on top of it all he will be jobless comgng out of this and we have a 3 and 5 year old and will have to sell the only home they've known. Again, I don't mean to sound so "woe is me" but its my only place to vent that people can get the whole picture. Thanks everyone

Call your lender immmediately. Mine gave me a 2.9% "hardship" interest rate for 2 years. Has he applied for SSDI (although it sounds like he might be too young)?