Jump to content

Need to get back to where I belong


Carleen

Recommended Posts

Hi everyone,

Boy I don't know where to start... So much has happened since I've last been here, and I have been away for so long.

I guess first off I noticed there are so many new members here since I last posted, and I am so very sorry that this terrible nightmare of a disease has come into your lives. I welcome you as part of my family, and will keep you all in my prayers.

I don't think I've posted since Nov./Dec. and I don't really even know why. I think I've been trying to live in denial for the past 6 months. For 2 years now, I've been going through life living day to day, one moment at a time. I've tried to stay positive, cheerful, helpful. I've had to be everything to everyone and I felt so overwhelmed and so stressed out, but I was never allowed to show it because I have to be the strong one. Through 3 moves, a job change, currently hating my job, treatments, doctors appointments, scans and results, clinical trials and as I watched everyone around me crumbling and needing support I held it all in. In Nov. things seemed to stabilize for a bit. We were settled in, radiation was done, and Keith and I fell into a routine in life. Part of me felt like if I ignored cancer, maybe it would ignore us and go away. Other than appointments, Keith and I didn't talk about it. We made plans for the future like normal people do. We did chores, and housekeeping like normal people. Although Keith was tired and going through Chemo, had periods of intense sickness from the Chemo I refused to let it sink in and deal with the emotions of it. I didn't want to talk about it and I guess part of that meant not taking the opportunities to get to a computer when I could to come here. It was really selfish of me, and I hope you all can forgive me. I don't know if I can forgive myself, but I've asked God to help me through this and know I have his forgiveness.

The ironic thing is that my plan didn't work. My pain is like an open wound being constantly picked at. Instead of getting better at this over time, or getting stronger I've been getting weaker, and the pain is spreading. My soul is infected and the usual balms don't seem to work anymore, they're just not strong enough. The last two Sundays, I've wound up crying through the entire church service instead of feeling renewed hope and strength.

I am scared. My heart feels like it is breaking, and I know it shouldn't because I still have my Keith with me. I should be finding joy in each day we have together, no one is promised a tomorrow. I'm already grieving and suffering loss and it's not time to give up the race yet. I know what I should be feeling, and that I am wrong, but it won't stop. I need your help to get me back to where I belong mentally.

To let you all know how Keith is doing... Keith had a hard time with his last Chemo combo of cytoxin, Doxirubicin, and Vichristin. It really made him sick, and lowered his blood counts drastically. He had to have a blood tranfusion after each dose as well as weekly injections of Procrit and Neulasta and even then his chemo was delayed with about 2 weeks between each treatment because his counts were too low. He continued on that way until mid April, and then had a CT scan which showed no change in any area which is good news. So the doctor felt Keith's body needed a break so Keith was suppose to have a few months break from treatment. He was so happy about that. Finally he could start feeling good again. He HATES chemo and has no faith in it to cure him and instead it makes him miserable. For the past 6-7 weeks Keith has been getting more strength, less fatigue, gaining weight, he has been happy; with one exception. Shortly after stopping chemo he developed a sharp shooting pain in the back of his neck/head area that radiates down his shoulder. It isn't constant but when it happens which is fairly frequent it measures a 9 on the pain scale. So Keith had an MRI, bone scan and a CT done on the neck and spine area. They can't find any reason for the pain as the scans came back clear in those areas so they haven't done anything for the pain. However, on the CT scan they found that Keith's cancer is progressing. We were called in and his doctor told us that pretty much all the existing tumor locations have grown at least 25%, this is just 5 weeks after the last scan that said he was stable. He seemed very concerned and upset, which made us scared and concerned/upset. He told us that since Keith's bone marrow wasn't strong enough for chemo, he recommends that he try and find us a phase II trial somewhere. Well, he was unable to find one for Keith's tumor type (Atypical Carcinoid). There is an experimental treatment being done in Switzerland that I've been following, so we thought to try and get into that. We went to see a doctor in Iowa that was connected to it, to get tested for admittance. Preliminarily Keith's Octreoscan showed he had the necessary uptake receptor sites in his lungs so the doctor said he was most likely going to refer us he just had to check his other scans before he could say finally. This Ytrium 90 trial is very promising, and for people with Carcinoid cell types there have been some results that have shown remission for 36-48 months. Needless to say we got really excited and were really counting on going. Well, Friday we got the call that the tumors in Keith's liver, pancreas and brain were not showing up on the scan with receptors so the doctor changed his mind and is not referring us for the study. So, we are back to no options and nothing to do.

Keith's doctor here is going to start him on a low dose Taxotere chemo this Friday. Keith is so upset by this, as he has had so much chemo already and it is successively making him sicker and sicker. And it isn't really offering him much hope. We both still hold out for hope for a cure. We pray that God lead us to the path that will heal him.

Normally Keith is strong and holds a positive attitude, but this past weekend has been very disappointing and he has been knocked low. He is very scared, sad and emotional right now, his faith is slipping and it makes it so much harder for me to maintain my composure when I see him so down and there is nothing I can do or say that helps.

People around me that have always been supportive and positive have started making small comments like "facing reality" and, "well we were only looking at treatments that would give him more time not cure him so I need to come to the reality that he is going to die eventually". I don't think I am ever going to be able to face that reality, eventually should be when he is in his 90s not 30s. I can't ever give into that, I'm just not strong enough. Me being selfish yet again, but I NEED him. I love him way to much to ever live one day without him because he is ALL I live for, ALL I have. I just don't know where to go from here, what to do what to try how to help. I've run out of words of encouragement for Keith, as I've run out of them for myself too.

Um, Oh, Well, I see I have gone on now wallowing in my self pity for way too long. Sorry about that. I ask for your prayers for Keith as he starts yet another round of Chemo, and maybe some prayers for us both to find some peace of mind as well.

Love you All,

Carleen

Link to comment
Share on other sites

Carleen,

you have both been so missed here.

I'm so sorry the news wasn't better and that there has been progression. I can just pray that the new low dose chemo offers no new side effects and brings Keith back to stable or even shrinkage of his tumor sites. He has his age and you on his side- as well as all those who love and pray for you both sending prayers for success and good news soon.

Please know that we are always here for you. I'm so glad I read this update from you today- I had been wondering and worrying.

Link to comment
Share on other sites

Hi Carleen,

Welcome back. I don't think I had the pleasure of meeting you as I have been here since Jan. But I am sorry for this horrific delimma that is going on in your lives. No one should have to carry the burden your both are.

I am sure your friends here will give you a mountain of support and prayers.

Your load is extremely heavy and I wish there was something to be done to lighten it. Right how it seems like the light at the end of that tunnel is getting darker, but just keep having faith that something will happen and he will get better results. Anything is possible.

I know it is difficult to keep a positive attitude as your watch your love one go downhill. But that could change at anytime. Keep believing that could happen at any given moment.

I will pray for him and you for strength. You story is so sad. I wish you would have continuted to come here for support so we could have helped you through this. I cannot imagine what you are going through but I pray for more positive results for Ketih.

Now that you are back, please stay and let us help you.

Prayers being sent your way,

Maryanne

Link to comment
Share on other sites

Dear Carleen,

I have been wondering about you and Keith for months. I have distanced myself from the boards also, but I always wonder how Keith is doing... I am so sorry you are going through this downward spiral right now... things can and do turn around. You have been through so much and it is only natural that you would finally "break"... and its okay. You deserve to be fragile right now. I will pray for your strength and for Keiths perserverance in this struggle... God Bless and watch over you both. Love, Sharon

Link to comment
Share on other sites

Carleen and Keith,

Hello,

Nice to meet you. We are Brian and Pat. ( Brian's car friends call us BRAT ) We are in Rockford Il., so we are your neighbors.

Thank you for coming back to this forum. We all need each other. I feel exactly the same about Brian that you describe feeling about Keith.

We are family, dear. I am sorry that any of us needs to be here, but am so grateful for the gifts of friends, encouragement, and information that we are given here.

We have you firmly in prayer.

Sincerely,

Brat

Link to comment
Share on other sites

Carleen, when we didn't hear from you for so long, I was so afraid of bad news, so I am very happy to see you back.

It is horrible to watch the person you love more than anything in this world be so sick. And you have been fighting this nightmare for so long.

Let us know how we can help you and Keith.

Link to comment
Share on other sites

Carleen,

Sometimes, when the plate is too full, it's time to step away from the table for a while. I can understand your mind needing to take a break from the board for a while, I think a lot of us go through that.

My thought is that maybe you and Keith need to plan a weekend away, take some time out and focus on the two of you, not doctors, not household things, not chemo - just the very basics of your relationship and get back on track. Those little stresses of day-to-day life can really begin to wear and erode a lot of the "good stuff" before you even realize it. Find a nice bed and breakfast or quiet small town hotel and spend a couple of days snuggling and holding hands and getting your souls back in tune.

I miss your presence here, but I truly understand needing to give yourself some breathing room - and sometimes, the virtual world is the easiest place to step away from.

Take care of you and yours,

xxoo,

Becky

Link to comment
Share on other sites

So, so glad to hear from you, even with the way things are for you right now.

We have all had to step away from the posts at one time or another. I've had moments when I was sure if I responded to someone, something bad would happen to me too. Then we come back, because this is such a special place for all of us to share our feelings.

I too, lost some of my faith after the lung cancer. I was holding on after the surgery, but when an Xray was questionable a year later, and I was waiting for the CAT scan results, I too, left church one day in hysterics, and never went back there. I do admit to people that God and I are trying to regroup now, and it has been three years since that day.

People tell you lovely things "God only gives you what you can handle" is one of my favorites :roll: I tell them YOU handle 3 cancers.

I had a younger friend (37 with 3 young kids) with breast cancer, and I knew it was bad. I was with her and her husband the day they were told there was no more treatment. She looked at me and asked how she could not do anything. At that moment I got it and I said to her

"This is your party here. You call the shots"

When people use the word terminal with me, (and it's usually non-cancer people) I remind them that we are ALL terminal. No one is forever. Usually shuts them up. then I show them a corner and ask if people are supposed to sit in there and wait to die. Definitely shuts them up.

3 cancers gives me a big liscense.

And remember Bernie Siegel's words "You are either living or you are dead."

gail

Link to comment
Share on other sites

WELCOME BACK, you two! You have been very much missed here. No forgiveness needed -- you did what you needed to do for yourself and Keith at the time. I'm just glad you can come back now and vent all you want. Sorry that things did not work out with the trial, but you two are certainly in my prayers. As you say, Keith is still here after over two years. And so is Lucie! Lucie gets discouraged, too, at times, and I can relate to your feelings as the caregiver. Hang in there with us and keep us posted when you can. We love you two! Don

Link to comment
Share on other sites

Carleen, so glad to see you back posting again but sorry that things are going the way they are. Never give up hope. I am praying for a miracle for you guys. Come back and post when you feel like it - the most important thing is to take care of yourselves first. We know you support us, you don't have to tell us. Take care.

Love and hugs,

Nancy B

Link to comment
Share on other sites

Oh Carleen -

I think of you and Keith everytime I come to the board - when I saw your name today I had to look twice! So glad you posted!

And this IS where you belong - we're all family here, and there's been a couple empty seats at the table.....so grab a plate, join us for a prayer and let us help you re-group and find your strength.

Sorry that you've gotten some bad news with Keith's progression....hang in there Sweetie - something might still turn around. And give that handsome guy a great big hug for me!

Hugs and prayers,

SandyS

Link to comment
Share on other sites

Carleen...you've both been missed and worried about...and while I wish your news was better, I am relieved to hear from you. As long as your Keith is with you....there is hope. Cherish each day.

Believe in miracles and try, whenever possible, to set aside the worries because...as our dear Betplace used to advise us...."every dawn is a victory".

I'm just glad to see you back here. Maybe we can be of some help or support for you again now...but I too understand that sometimes we need to get away for a little while.

Sending my best vibes and thoughts your and Keith's way....

Link to comment
Share on other sites

Hi Carleen,

It really is soooo good to see you back. I understand every word you typed in your post, and could have written it myself. I have the same feelings and the same fears. We, too, are facing similar circumstances as you and Keith, and I can't tell you how much I understand what you are going through.

I had lunch with some visiting family yesterday and my sister wrote me an email today and said I "seemed a little down." I told her that yes, I was a little down. I told her that I am just selfishly self-absorbed. All I can think about is my husband 24/7 and even being at the lunch away from him on a Sunday was almost more than I could bear. All I have are the weekends and very short evenings because he goes to bed so early. I told her that I had almost no interest in anything else. I told her I know I shouldn't be thinking the thoughts I'm thinking, but I'm thinking them anyway. I also told her that I am "working on it."

I stepped back from the board some, but then started posting again, and that has helped a lot.

I think it helps to share your fears with others because it seems that someone always comes back with something that will give us that spark of hope. We don't know where or when or if this disease will take our loved ones away from us, but I find that if I at least read every post, I find something that will lift my spirits and at least help me to feel better.

For example, I think it's JimBen who is on his 7th or 8th chemo - none of the others worked. Then all of a sudden this last one really knocked his cancer way back - I think it was maybe 50 or 75%. After I post this, I'll go check what he said to be sure I'm telling it right. Anyway, you have no idea how much hope that gave me. Just knowing that there is a possibility that this next chemo could be the one that really works is so encouraging. It may not happen, but at least the thought that it could helps a lot.

Also, identifying with your post, my pastor told me I needed to get back into fellowship because he thought I would need it later on. I told him that I quit coming to church because I cry every time I'm there. He said that's because God is there and that's the place to cry so He can wipe away my tears. So, I'm now going back - not every Sunday, but I'm getting there.

Well, I've gone on long enough, but just felt like I coud so relate with your words.

It's good to see you back, Carleen, and what a WOW picture!

Love,

Peggy

Link to comment
Share on other sites

Carleen,it's good to hear from you.Sorry Keith is feeling so bad from the chemo.Chemo has been beating me up pretty good too as I too am about out of options,but like Peggy said some of our members have tried this and tried that and all of a sudden something works and there is shrinkage.

I'm hoping and praying the low dose treatment will work for both of you and with little or no ill side effects.

Link to comment
Share on other sites

Well it is soooo good to have you back where you belong. There have been several "looking for you" posts. I am with the Beck (us Michiganders are smart) go away somewhere. Preferably somewhere near an ocean :wink: . If Keith doesn't want to do the taxotere then don't. Take some time and regroup.

I wish you better days soon.

Rochelle

Link to comment
Share on other sites

Yep, I was right, it was JimBen. Here's his profile:

Age 59, Dx...7/03, Stage IV, Left lung with Mets to Right lung and Lymphs, no other Hot spots seen on Pet or Brain CT

4 cycles Gemcitabine/Carboplatin..good shrinkage

2 cycles Docetaxel..good shrinkage on first cycle, growth during second

8 weeks Iressa..growth

2 cycles of Topotecan/Vinorelbine, another failure

Two cycles of Alitma....stable

2 mo. chemo break

Growth again

Started Cisplatin/CPT-11

After 2 cycles..75% Shrinkage "Yippee"

After 4 cycles..50% Shrinkage "Yahoo"

After 6 cycles..success continues "WOW"

After 8 cycles, stable, taking 2 mo. break

Still "Fish'n and working full time"

Photo "My Shadow" fishing with GrandPa 10-02-04

Link to comment
Share on other sites

Hi Carleen: I can understqnd the need to get away from the board for a while. I feel that way sometimes.

I think Becky's idea was right on. You and Keith need a weekend getaway.

Also, I have heard of people having good results with avastin when used in combination with standard chemo drugs. I don't know how appropriate it would be for Keith's cancer though.

You and Keith have my prayers.

Don M

Link to comment
Share on other sites

Hi Carleen,

Your post touched me deeply. As we try to figure out how we fit in this new and unwanted relationship as "patient" and "caregiver", sometimes we simply feel lost.

I have never fit the role of patient, even though I think most men love to be spoiled by their wives and girlfriends and I am no exception. My wonderful wife, Bobbie, has always been the family caretaker. Unfortunately, after 39 years of marriage, she is now a caregiver to a dying man. Not a role she wants or deserves. However, I'm not the only one who is sick here.

It is very easy for me to play "victim" in all this. I have to say this very carefully, because I don't want you to think I'm accusing Keith. This disease has brought sickness and misery to every member of this family. I have to remember, on a daily basis, that I must also support my family members and friends who suffer also, to give them permission to ask that their needs be met, as well.

For me, the fear has gone, and what I feel right now is a tremendous need to explore what is happening medically, to re-open doors which need to be open and to close doors which need to be closed. I need to give my wife and children the OK to be needy, too. I cannot expect comfort unless I give comfort to the best of my ability.

Sometimes, Bobbie and I will be somewhere and just look in each other's eyes, then hold each other and cry. It is my responsibility to continue to give her kindness, love, and tender care. That' what I promised 39 years ago when we mutually recited..."till death do us part". That's a three-way mutual promise between mates and God.

With my prayers..

Michael

Link to comment
Share on other sites

Carleen,

Welcome back. I was so glad to see your post and so happy to see that Keith is still in the battle. I think we were all worried that it was bad news and that's why we didn't hear from you.

Sounds like you needed us as much as we needed to hear from you. The feelings and emotions you feeling are what is to be expected considering all you've been through. This is no cake-walk, that's for sure. You are only human, and it's my personal opinion that maybe not God, but life in general can definately give us more than we can handle.

I know you probably feel that you can not take one more thing being thrown at you right now. I feel the same way everyday. I fake my way through each day, trying to be upbeat, non-complaining and strong.

It's the only way to get through it. But you must know Carleen that we can not ALWAYS be all things for all people. We must be able to be weak at times, let our guard down and reach out for comfort from our loved ones and friends and then restore and re-energize for the next battle.

Come back as much as you can. Glad you're back.

TAnn

Link to comment
Share on other sites

Carleen,

So good to hear from you. Sorry Keith isn't doing too well. Charlie is on low dose Taxotere on a weekly basis. But, has been getting radiation, also. He has been fatigued, but otherwise feeling pretty well. He will be getting scans again the end of this month...so we will see how it is working.

Like Peggy was talking about with JimBen, Charlie had a response on his 5th type of treatment. It just didn't last very long. We are hopeful that the Taxotere will give him stability...which I now know is a good thing.

My prayers are with you and Keith for peace and comfort and for his complete healing. Miracles do happen. Take care.

Link to comment
Share on other sites

Carleen,

One of the things I love the most about this group of people is the genuine affection we have for one another. And with that affection comes true empathy when one of us has to distance ourselves for self preservation. We understand. We didn't stop caring. And we are glad you found your way back to us....just very sad that there is still reason for you to seek us.

Carleen, it is normal to be sad when we lose something. You and Keith and everyone who comes here has lost "What Might Have Been" had Lung Cancer not entered our lives.

I wish that there were something I could say or do that would make a real difference in your lives. All I can say is "I'm sorry.".

Link to comment
Share on other sites

Carleen,

I'm not sure if I had the pleasure of meeting you before... I joined in November. I'm glad you posted today though...

I'm sorry the load is so hard to bear right now. I'm glad you came here today though, because we can help you bear it a bit.

I'm so sorry things are so discouraging. I pray that there is good news and good days just around the corner for you and Keith.

Val

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.