HUSBAND ONLY 45 WHEN DIAGNOSED-CAREGIVING IS HARD JOB

MOE58

Hello everyone, first off let me say I didn't know there was a caregiver site until one of my online friends told me about it. I want to start out with we are all caregivers, my husband Jeff was diagnosed on April fools day with Esophogeal Cancer, we were devasted, we had no idea that he had this or even signs of it, he was never sick worked 50-60 hours a week either at work or at home, when he first got the news the "CANCER" word was scary, he cried I cried and wonder is his life over, somedays were worse than others, we saw our oncologist, and had a pet scan done, fortunately when he had this done and got the report back he was only STAGE II and not in the lymph nodes, this we were excited about, we knew then we could fight this ugly disease. We started our first Chemo in April, that went like a breeze, then the second Chemo came that was awful, he was ugly to me, lashed out at me, told me he was dying and when he dies, I would be better off, I just kept telling him you are not dying your only stage 2 and this can be fought. Then we had the 3rd Chemo this was really hard on him, he said he would rather just die, I said I don't want a dead husband I want a healthy husband, he said maybe if I just give up everyone would be happy, I told him we are in this together and we will walk this road together, Keep in mind we have only been married 3 years this month, so our relationship has truly been blessed. We scheduled our surgery for July 23, upon that time he did well with the surgery, he was scared and so was I, when I got to see him in ICU, he had 14 tubes hanging out him and was on a ventilator, of course I knew this was going to be a hard road. Then on day 2 after surgery i got a call from the hospital stating Jeff was in a comatose stage and his vitals were dropping, I said "OH GOD" please don't take him now, we have alot of things to do together, they kept working with him and finally got him back, because of the hard Chemo he took, it attacked his lungs and trouble started. He laid in ICU for 12 days and 12 nights, I continued to talk to him in there like he was right there, I said "HONEY" you can fight this, you can do this, you have grandbabies, that need you, and I need you. On day 12 of his hospital stay I went and saw him on Sunday he was still out and really didn't know who we was, the following day which was Monday I got a call from the hospital stating Jeff was asking for me and was sitting up talking, Let me tell you i didn't drive there I flew there what would normally take at least 45 minutes, i was there in 30 minutes, I was crying all the way there and thanking GOD for bringing him to me. We were then moved to a regular private room, he continued to get better, he walked talked and everything else. I was allowed to bring him home on Saturday and he is doing okay it is a struggle, I have my hands full I have to help bath him cook for him, and work a 40 hour job.
Caregiving is a full time job, and I always had a saying when he was in the hosptial i will just put my "BIG GIRL PANTIES ON" and keep moving, there were days I just didn't think I could handle anymore, or days I just wanted to give up and not go up there, and days I thought why us? But then I look back and I know why GOD gave it to us is to make us stronger and to be a better person.
As caregivers we have to be there for each other, if I can help anyone I would be glad too, some people are just in denial and just wont talk about it, but the more they don't talk about it the worse it will make their life, no body asked for this ugly disease called "CANCER" its just something we have to deal with in life, we weren't given a book of how to cope with things, or how to handle things we just do the best we can for what we have.

There is this saying that another cancer friend on this site says: "LIFE IS ABOUT WAITING FOR THE STORM TO PASS, ITS ABOUT LEARNING TO DANCE IN THE RAIN"

Take care all
Lori aka MOE

donnare

HI
Beautiful post Lori - thank you for that. I'm a caregiver too - husband has Stage IV colorectal with mets to liver - dx 5/28/09. It's been rough.

Loved your saying "...put my big girl panties on..." as well as the the quote at the end. That's what we are doing - trying to learn to dance in the rain.

Nice to meet you - I'll keep you both in my prayers.

Be well,
Donna

MOE58

donnare said:

HI
Beautiful post Lori - thank you for that. I'm a caregiver too - husband has Stage IV colorectal with mets to liver - dx 5/28/09. It's been rough.

Loved your saying "...put my big girl panties on..." as well as the the quote at the end. That's what we are doing - trying to learn to dance in the rain.

Nice to meet you - I'll keep you both in my prayers.

Be well,
Donna

thanks donna
Thank you for the nice welcome, if you go under esophogeal cancer you will see alot of my post, alot of them will be under MOEANDPAPA, most of themon there are mine, with alot of replys, Yes alot of people have liked my saying of "BIG GIRL PANTIES" so i try to have that saying in alot of my sayings, and the quote at the bottom is from another EC survivor, but i took it from her, I have been through alot, I also have what they call "MOE"S SHOES" you will see a post on that too. There is a very good survivor named WILLIAM66 and without him i probably couldn't have made it. I hope i will be here to help others,I am sorry your husband was diagnosed with that you didnt say how old he was but so far i have noticed my husband is the youngest.

I will continue to pray for you two. Please keep in touch

Lori aka MOE

donnare

MOE58 said:

thanks donna
Thank you for the nice welcome, if you go under esophogeal cancer you will see alot of my post, alot of them will be under MOEANDPAPA, most of themon there are mine, with alot of replys, Yes alot of people have liked my saying of "BIG GIRL PANTIES" so i try to have that saying in alot of my sayings, and the quote at the bottom is from another EC survivor, but i took it from her, I have been through alot, I also have what they call "MOE"S SHOES" you will see a post on that too. There is a very good survivor named WILLIAM66 and without him i probably couldn't have made it. I hope i will be here to help others,I am sorry your husband was diagnosed with that you didnt say how old he was but so far i have noticed my husband is the youngest.

I will continue to pray for you two. Please keep in touch

Lori aka MOE

Yes, 45 is wayyyy toooo
Yes, 45 is wayyyy toooo young - I'm so sorry - that is really tough. I will be praying for you both too.

My husband just turned 52 - too young too, but I realize that I would feel that way no matter what age he was - I want ALL the time I thought we would have together.

I pray for miracles for everyone on these boards!

Donna

MOE58

donnare said:

Yes, 45 is wayyyy toooo
Yes, 45 is wayyyy toooo young - I'm so sorry - that is really tough. I will be praying for you both too.

My husband just turned 52 - too young too, but I realize that I would feel that way no matter what age he was - I want ALL the time I thought we would have together.

I pray for miracles for everyone on these boards!

Donna

Miracles do you happen
Hopefully a miracle will happen know I am here if you ever need to vent or a shoulder to cry on.

Lori

MichelleP

Lori
In reading your post I sense so much strength. You are an inspiration to all caregivers dear and I wish you and your husband many many years together!

tjo66

MOE58 said:

Miracles do you happen
Hopefully a miracle will happen know I am here if you ever need to vent or a shoulder to cry on.

Lori

Just keep going
First of all let me say how much I admire your bravery. Yes Bravery! It takes a lot of bravery to care for your loved onces whether people thinks so or not. I mean we couldjust give up and let someone else do it. But we have to keep going. I will tell you of one of my break downs. I had been caring for mom for 2 1/2 years, she not the most polite person, she tells me I am fat, and tells me what a bad mother I am and that is why my daughter left home. Well, one day my dad was gone and the hospice nurses was coming for there visit with mom. Lisa, the bath aide had given her a bath and I was getting her bed ready. Mom told me I can't do anything right and go home and never come back. I went out side and just bawled! I was still crying when the two nurses come out and they asked me if I was going to be ok? I told them I can not take this anymore, I wasnt to leave, runnaway from here and my family and never look back and never care for anyone ever again. I was at my wits end with mom. I was so hurt by mom's words. The hospice nurse told me that it is not uncommon to feel this way at some point and time when caring for someone, especially with the attitude mom has. I know and they knew I really didn't mean those things but I was so angry. Well like you said "I just put my BIG girl panties on" and went back inside and told mom I loved her and I am sorry I can't be better. Well, my mom is still mean at times, and yes I do cry (a lot), a cry because I can't be with my son and husband as much as I'd like too and I cry because I am lonely. But most of all I cry for my mom (and now dad who was dx with cancer). I feel helpless in a situation I have no control over. I guess at these time I just say "God I am giving every thing to you, because I can't handle by myself. Which makes me remember a song that I have to listen to quite often. It's a christian song by Plumb titled "I can't do this by myself". Incase you have never heard this you can go here and listen to it. Copy and paste the web address. http://lyrics.filestube.com/song/f93897078bc57c3903e9,I-Cant-Do-This.html Just click play on the box to the left. And yes I really do go dance in the rain sometimes.

Friends for Life. tammy jo

Rochelle37

Lori~
i could really use
Lori~
i could really use some positive help!!
Rochelle

seanslove

only 45
Moe,

I understand where you are coming from,my husband,then 44,in May was dx with stage four mestatic adenocarsinmoa,source of primary unknown. He went from perfectly,or so we thought healthy,bike five to six miles a day,and 180lbs at 6'3,the most he has ever weighted in his life,to down the next day and could not breath. We went to the ER to find he had a pluerl effusion,for which they stuck a drian tube under his lung. We went home with his drain tube and box,after 12 days in Beaumont. He had this tube for three weeks and three days. The doc's spent all of June and part of July trying to decide where the source of primary was,and when all they could do was scratch their heads,then they decided they would start chemo. Well,the weighted droped like mad,his mind set dropped along with his weight. Like your husband,he kept saying I am dieing,you'd be better off without me,and all the other nasty's which accompany such a train of thought. He made his 45th birthday on July 5 and my 39th on June 29th.
His chemo was every other week,a few hours in short stay for the psuh drugs,Oxyl and Leuc,and then we would come home and pump the 5FU for the next 46 hours. After round three of this cycle,the day after,they decided to do another ct scan,the next morning,Friday,we got the call to come back and be admitted through the ER. Which there they did an ECG and said the findis were trival. However,they admitted him anyways. On Sunday they finally decided they needed to do something,but still yet couldn't until Monday,as his plueral effusion from May was back and now a lateiral effusion in the lung which required and ultra-sound guided needle to releive the fluid.
Sunday night he has his first resipotroy attack,which the blew his lungs with 100% oxygen. After he was breathing better,then and only then,did they come in and tell us the whole truth. To which Sean said I am done I want to go home. They told us,no you can't go home your on to high of an oxygen level which has to be weaned off if it even can be,which I said well you better get busy,cause we are going home. I was told the only way they could release him was with Hospisis,and I said well you better get me someone in here now cause we are going home.
He was then put on a morphine drip,which he had a button to give himself more when he felt needed,sadley,it took until Tuesday afternoon,at 5 pm to get him out of there. We were home by six and he was in his bed flicking the remote. The abmulance who had brought him was gone and then I had the hospisis nurse here driving us crazy,whena at 7 pm he had his next attack,this one he did not recover from and kept asking for help,however,there was nothing left to do.
Sean lost consciousness a little after 7 that night,I called his family in,and they stayed until midnight,and said they would all be back in the afternoon,unless something happened,this way he and I could have our time together. Sean and I got up at 5 the next morning,just like any morning,and I placed his coffee on his night table,gave him a shower and shave in bed,and upon moving him to change his sheets,he did open his eyes for just a second,but they closed as soon as they opened it seemed. Since we were in the hospital from Friday to Tuesday,we had missed all our weekend shows,which gotta love on demand with Comcast,so I played each of our shows and laid on him and talked to him through everyone,just as we normally would have.
About 8 that night,with the whole family here,the family insisted that after six days of me not eating I had to eat,therefore,they ran to Mcy D's to get me some food. Upon returning around 8:30 I walked out of the bedroom and for some reason did an about face,and immediatly ran back to Sean. Of course they all followed and tried to stop me saying there would be no change,as I laid back down beside Sean,I saw him take a huge breath,and it was the last.
I wanted to tell you this story to show you I more than understand how hard being a caregiver is and 45 is wayyyyyy to young for this to happen. I am glad your husbands cancer was found in such an early stage,and I will pray for his remission to be soon. I,too,tried working in the beinning,only to wish I hadn't towards the end. Thelast few eeks of his life,with the mass weight loss,down to 125,he became weak and unable to walk without assistance,therefore,I left my job to be with him round the clock,and I am so glad that I did,I wish now,I would have done so sooner.