My composure is crumbling

[dustinsmom2004]

Right now I just need a shoulder or a few shoulders to cry on. I am so tired that I am sleeping 20 hours a day most of the time and getting up to go to work, then going on back to bed. I have bruises all over me and little pin point red dots on my legs, and swollen lymph nodes on the sides of my knees. I just dont need this stuff. I thought that I would at least get a small reprise from chemo after my next treatment, but now I just dont know. I see my pcp on Wednesday and he is getting me a referral to hematology. I am so frustrated with myself. I know chemo can reduce platelet levels, but the onc said not to this extreme. My hubby is in a state of denial and doesnt want to talk about any of it. I want to talk about it, but he only crys which makes me feel bad. I am at my wits end. I try to stay strong, but I am really scared. It took me three weeks to go grocery shopping in town, and I only did that because I had to, there was nothing else my hubby could throw together for dinner I know what ovca does to me, but this is all new and and for some reason I am even more scared than the first time I was diagnosed with cancer. Then there is my miracle baby, Dustin, I dont trust anyone to help me with him except my older kids, Dusty is autistic and I am scared to death that someone would abuse him. I just dont know what to do, I pay my older kids to help with him, but still it aint fair to them to do so much of the helping.  I was doing all of Dustins therapys myself even with ovca, but now I have no get up and go and simply cant keep up with him. The state says that Dusty is not "autistic enough" to provide help for us. I work part time so they say I am not disabled enough either, I work to keep my mind off of cancer for a little while each day. I try and try to keep up with what I like to do, and for the most part I am losing a little more with each passing day of the things that I like to do. I am sorry about writing all of these worries. I have no friends I feel comfortable talking to here at home, and my husband crys, and my kids I wont put this on them, not when I can barely handle it myself. I am so tired of doing chemo, I am not even sure that I want to finish this last one for ovca and go into another ball game. I am just so tired, when I think this way I feel so selfish, but I just want a break.

[momofsandj]

I wish I could offer more than a shoulder -- you really should try to locate cancercare.org and call them and ask for help -- all their services are free and that's what they are there for -- I have used them for counseling and also the lady that suggested Wellness Community is right up there also --- I have been going to them for over a year for help with me and my kids -- they are free and full of suggestions and programs for help ---
This is my third going on fourth try with chemo in 5 years and I have two kids, one of whom is classified -- my heart goes out to you -- my antidepressants aren't even working any more so my heart is with you on the crumbling part --- give your husband something to do like the shopping or get him on antidepressants -- it will make him feel he is doing something useful and sometimes that helps more than  focussing on how he will handle Dustin and the other kids alone if you are gone -- you have to know that is what he is worrying about -- I know that's what my hubby was worrying about last year when he all but had a nervous breakdown (very helpful to me and the kids of course) -- this time I've been giving him things to do to help me and it keeps him from falling into a feeling of complete helplessness --- he even knows where the grocery store is now, although sometimes he calls from there because he can't find things (men, can't live with them, or without them)

[crecco]

  I offer yet another shoulder for you to cry on, as I know the feeling. You can cry and vent all you want as I have some pretty broad shoulders.
I pray that you can get this all taken care of as you have enough to deal with and as Jan said, who is to say when is enough and when is too much.
Don't forget that we are all here even if you just need to talk. I know how hard it is to talk to family at times. Hang in there Hon, we are here for you.
  Chris

[brownize]

when my platelets went way down i had to have a transfusion,,so i feel your pain.

canyou contact 'cancer care'?
they were great when my mother-in-law was ill. they help without charge..(or they idi long ago)

brownize

[withe]

My arms are reaching around you all the way from CT. Cry into my embrace.
I too had red dots, shortness of breathe, fatigue, bruises. Have had two treatments of platelets and received several bags of red cells. Was seen by the hematology people and just found out today that it was the chemo, (Alkeran) causing this condition. Was given a bag of red cells today, too. Perhaps you may benefit from blood products too.
Staying strong all the time is BS....venting is also good for the soul.... Withe

[Knotmeg]

I'm offering a shoulder to lean on... and I'll help wipe tears too.  I'm so sorry you're  having such a hard time with all of this... but let me remind you .... that you are STRONG.... and you are a GREAT mom... and you deserve a fighting chance!

love,
Meg

[manneca]

I am so sorry. You are in my thoughts/prayers. Once someone very wise told me when I was going through a different crisis, all I have to do is breathe. Just breathe. I hope you find some relief. Chemo is an experience I wouldn't wish on my worst enemy.

[butterflytc]

I am here for you too dustinsmom, and am so sorry you are going thru so much physical and emotional turmoil..sometimes it feels like life runs us over, remember we are here for you, at all times. Have you asked for a home nurse? I am in Chicago and my doctor set one up for me, and it is covered but I am on Disablility/medicare. Not sure if that is why I was able to get her. I recommend calling the Amer. Cancer Society, as they have legal aid to help, along with programs that might be able to help you get on Disability now that you have a secondary cancer. I wish you all the best. Hope you see sunshine in the future, as the darkness is hard on the body as well as the mind. Take a deep breath, and let your worries out here.
Hugs
butterflytc

[Lafnatitall]

Ok...I looked online for community services and resources in AZ City or near there and this is what I found.  Do some calling around and see if these groups can either help set up something or direct you to somewhere where you can get some help.

Catholic Community Services - even though it is supported by the Catholic church, it isn't JUST for Catholics.  I send many people to this resource.

The Cancer Center where you are receiving treatment.  The one I go to have a patient advocate who can direct you to services that are 'donated' to cancer patients and their families.

Division of Public Health

Department of Health Services

Autism Society of America - phone: [phone] there in AZ

The Wellness Community - phone [phone] in Phoenix

I wish I could do the calling for you, but in doing it yourself, you will find that you will begin to feel more powerful.  I have two shoulders I'm not using right now...I'll even put an arm around you at the same time!

Remember what vegas sent us regarding stress management?  You need to let something go and 'rest'...

Rhonda

[Jan214]

I am livid that we live in supposedly the best country in the world, yet you can't get any help because your son is not autistic "enough" and you aren't sick "enough".  Who fricking decides what's "enough"?  If you lived in just about any european country you would have help for all of your issues and you wouldn't have to stress yourself out over all of this.  None of us would.

I am so sorry for your situation.  We all think we know chemo until we try a new drug.  I thought I knew too when i recurred, but Gemzar was WAY different than carbo/taxol and now Topotecan is supposed to have awful side effects too.  Is that what you are on?  It sounds like the side effects I was warned about. If you are on that you are not supposed to be in crowds or around small children so how can they consider that not sick enough?  You should quit and get disability.  You can't go on like that and what time you don't spend sleeping you should be spending with your family or doing something you like to do.  Belive me, your Dr will say you are to sick with what you are going through.
I am truly sorry that this is so hard for your husband and your family.  I wish none of us had these additional worries.  We need to concentrate on getting healthier feeling.
You know you have lots of shoulders on here.
Jan

[gma718]

I am so sorry for all that you are going through right now..First and foremost you need to stay strong and stay positive..I think you should talk to your Doctor about going out on disability...as much as it is an out to go to work i think at this stage it is just too much for you...perhaps you can find a teacher or aide from the local schools that can come to your house and help with your son.I am sure there are some that would love to do that for you..maybe even try the American cancer society where they have volunteers that might be able to help you with things that are too much to handle right now...try your local red cross or other organizations...maybe there are some programs you can look into for your son..that you can check out referrals for ...I am assuming you dont have much family around ...how about neighbors or close friends ....people are there for you but sometimes  you need to tell them you need help...I am sending you positive thoughts and prayers and wish there was something I could help you with...please know that you and your family will remain in my thoughts....Please keep us posted ...Hoping your Doctor appointment goes well on Wednesday..My shoulder is always there for you to lean on...Good Luck...Gia:)

[Conquerer]

Well grocery shopping  is important but with a good list I should only hope your hubby could shop for you.. Now you must under stand I wnet to the grocery store twice this week for for first time in 5 years.  I hate the grocery shopping so I made it my husbands wonderful gift to me.  What ever he comes up with is good and believe me it gets better with time.  Take the burden off your shoulder.  Now if uyou husband can't find a friend to do some shopping for you.  Treat yourself.  Take care we all will help you all we can.

[msjazz]

Chemo can lower your platelets to that extreme. Do you get bloodwork before each chemo? They can build back up by themselves usually, but it needs to be monitered each time before you do another one. The red pinpoint dots are also a sign of low platelets. It takes me 3 weeks to get to the grocery for myself too.I got out in the car Saturday for the first time since June 9 chemo. You need your rest to handle chemo and definitely tell your onc about the bruising. I wish you had someone to help you more, or did not have to work. Hang in there, we understand how you feel.

[marie3B]

I am offering you my shoulder to cry on. I will let you know that the shoulder is peeling from a sunburn, but I think it will still hold you.  If my brain was not so worthless from my bout with chemo I would offer you some really great encouraging words.  As it is I can barley think to write this. I do feel for you and hope things get better soon.  Marie