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Janet B

Need help finding Hope

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Hi everyone.  I have been missing from the boards for a few months, because,frankly, I have been missing from life for a few months.  A little background. In early July new mets showed up on my scans, miliary nodules in both lungs and a met in my spine.  The treatment plan was to stay on the Tarceva and Avastin but to add Carbo and Alimta every 3 weeks.  The plan was to do this for 4-6 weeks and then drop the Carbo and continue on the Alimta as a maintenance.  I was so hopeful and optimistic.  Supposedly, for most people, this is a very doable combo and the side effects did not seem at all frightening.

I guess I am not most people.  I have been totally debilitated by this combo.  I have extreme fatigue, can only walk about 20 feet without gasping for air, getting light headed and sitting down.  I can't get up the stairs, everyday tasks are nearly impossible.  I haven't cooked, cleaned, shopped, driven, gone to my farm, the beach, a friends etc etc in 3 months.  I just sit here on the couch and watch stupid tv (I have no concentration for books or crochet).  I feel this way until the day before or day of chemo, then it starts all over again.

My 6 week scans showed shrinkage and stability which was great news, but since my counts kept being so low and my quality of life so miserable, we stopped the Carbo after the 3rd cycle and continued on with the Alimta every 3 weeks as a maintenance (along with the Avastin and Tarceva).  The big hope was that without the Carbo, I would start to feel better.  I don't, not at all.  The  thought of feeling like this indefinitely is so depressing and defeating that I have forgotten about hope.  

Now my doctor wants to take me off the Alimta.  

He feels I am just super sensitive to chemo and he wants me to feel ok again.  He will keep me on Tarceva and Avastin and has hopes that eventually I will qualify for a clinical trial. I have such mixed feelings about this.  On one hand I am beside myself with joy that I will start to feel "normal" again, that I will be able to enjoy the holidays and yes, that I will finally get my house cleaned!  (cleaning, cooking, and caregiving, I have discovered, are not things my husband does, but that would be a whole other post!)  But more so I feel like a failure, a quitter and mostly like I am letting down myself  and my children.  When I was first diagnosed I sat my kids down and promised them I would fight this with all I had, I would not give up, and now, it seems I am.  I have never felt so tired and defeated.  I know I cannot go on living like this indefinitely, because this is not living, but I am not a quitter and so I am torn.  My husband does not get it.  He thinks I am just not trying hard enough, I am just not pushing myself.  That makes me feel even worse. Have any of you had to give up on a treatment?  Have any of you had the people closest to you not "get it". How did you deal with it?  I feel like I have hit rock bottom in my mental fight against this and it was always my optimism that carried me.  This is the most lost I have felt since diagnosis.

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Janet,

My heart goes out to you and yours with this latest installment. So very sorry to hear your status and the past three months. I don't know how to give you advice on this as I haven't had the trial you've experienced / are going through. I'm a stage III NSCLC recipient and initially had a year of chemo, surgery (inoperable), more chemo (alimpta) combined with 3 months radiation. I've been cancer free since.

What I will say is in my world, quality of life is everything. I for one refuse to live in a world where I cannot function where the med's would pull to the point of incapacity. I fail to see the point of staying alive only to be miserable. I would prefer to have 6 months of living over 12 months of dying. Every morning I tell myself to get busy living or get busy dying...it's your choice. I'm choosing the former.

I put a lot of faith in fate...what will be will be. I've learned to accept this and live every day and be thankful for it.

Not sure if any of this helps or it's off track in your thinking. I don't feel it's giving up. It's not. It's a choice you have to make...I'm not in your shoes and can only relate to the year I spent feeling much the way you describe. I gave it it's due and I'm alive today to write about it. Had i not, I highly doubt you'd be hearing from me. But I would really have to weigh the projected outcome to go down the road again and feel like death...

Live every day is my mantra...for all of us, eventually it'll be our last. I've come to be at peace with that until that day arrives. No one else but you knows what that feels like so it's doubtful any one else will 'get it'. You're the only one who needs to. My $.02.

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Janet,

While not the same, I remember at the end, before we knew it was time to give up, my mom had a day she considered stopping and as her daughter, I was mad and didn't get it :( I was selfish. I see that now. Turned out the dr said she couldnt make any decisions until she had the fluid drained from her lung b/c she was not really with it and it was the end.

My advice, which was our motto, was go with whatever the oncologist said.

Love and hugs to you.

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Hi Janet,

I have been missing you about here these last weeks,I did'nt realise it was actually over a few months.I have read your post,I am so sorry to hear what you are going through,I am probably the last person here to offer an opinion on your situation,since I have not had any experience of any of the drugs you have described,my chemo drugs were cisplatin and vinoralbine.

My heart goes out to you as a friend who is concerned about you,I loved meeting you and your husband at the Hope Summit,I just take as read,we shall meet up again next year.

I do have experience though of the emotional side of what you are faced with,reminding me of Christmas 2008,having been given my dx of Lung Cancer,by one doctor then followed by a second doctor telling me I also had bowel cancer,after having gone through a colonoscopy.That was the most miserable Christmas I have ever spent,and hope not to go through another one like it.

I cannot imagine how much more you are being challenged at the moment both physically and emotionally,listening to your husband's comment please dont be too hard on him,he just loves you so much,its his way of coping and also trying to encourage you,but you know us men, we can be so tactless at times.

I am staring a the flashing cursor on my laptop screen,searching for the right words to say to you that can give you that wee bit of extra encouragement that may go some way to restore your determination to overcome the doubts,the physical and emotional fatique of fighting back against this disease.I can only offer you my support and prayers that you will recover fully from your present setback.Please do keep in touch.God Bless.

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Janet:

I have been so worried for you. When you started on chemo and then you disappeared I knew where you went. I too had extreme reactions to chemo. All I could do was stare at the TV or sleep. I could not read. I could not focus long enough to watch any of the DVD'S my sister brought me. I could not face trying to figure out Netflix at my parents house where I was staying during treatment. I could barely walk 3 houses down to my sister's house and had to hang onto the rails to pull myself up 2 steps. Eventually I could not climb stairs at all. I threw away most of the food they kept bringing me because I could not keep it down. After round 2 I could not get out of bed by myself and I was up every 10 minutes all night long. Someone had to help me. I felt as though I was dying. After round 4 I went in to meet with my oncologist to find out my results. I remember being terrified. If we had shrinkage I would have 2 more rounds of the carboplatin/taxol cocktail that had made me a non-functioning human being. If I was still just stable I would have the choice of stopping that treatment. I remember wondering if I would have the strength to let them pump me full of chemicals again or if I would crawl screaming out of the room. I only had stability. I remember feeling such relief and such guilt for feeling that relief. It takes great strength to do what is the right thing for YOU.

My oncologist gave me the choice. He felt since my side effects had been so extreme that it was okay for me to stop. I made it through the holidays. Barely. By New Years Eve I was back in the hospital for 5 days. It was at that point we decided to try the genetically targeted therapy I am on now. It was not available when I started chemo. You know me and know my treatment is working now. I have survived over one year since diagnosis. I still worry what will happen some day when my current treatment does not work. I don't know if I could go through any more chemo. I do not look forward to making that choice. My oncologist told me that the chemo cocktail I had would be the worst I would ever have (this was after round 3). But, I am not sure I would still be able to try it again.

I know others who say their side effects were not so bad. I don't know if I am weak, or if they are better liars than me. I understand your desire to really be ALIVE. I have been where you have been. I know some day I will be faced with a similar choice. Do what you need to do for YOU!

You have been through a lot, you have shared and given of yourself to your family, friends and fellow lung cancer survivors. I have tears running down my face as I write this and wish I could be there to hug you. Stage 4 cancer is more than anyone should have to bear. But we do it. You do it, and I am just new at doing it. It is hard, it sucks and I hate it. But it is also making me stronger, more compassionate and has given me forever friends like you. You are a wonderful person and you should be the person you want to be. It is not giving up. It is acceptance.

There are some things that just beyond our control. I miss you here on LCSC. You have such a good perspective on life and you are the best Words with Friends player I know. Even during these last 3 months. So, I know you are still in there my friend. Talk to your oncologist and then do what is right for you. I want to hear from you. If you are down, it is okay to ask for help. I know what it is like to isolate, but please let us be there for you, as you have been for many others. I know I have said a lot, probably too much, but your post touched my heart and all this came pouring out. If you need a hug let me know and I will fly out to give you one.

Love and many virtual hugs,

Susan

Sent from my SCH-I405 using Tapatalk 2

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I forgot to remind you that Hope is not always bright and flashy and obvious, sometimes it is just a tiny little web address that can bring you to others like your self. We can share our Hope with you while yours seems out of reach!

Susan

Sent from my SCH-I405 using Tapatalk 2

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Hey Janet, I am so sorry to hear how badly you've been feeling. But I'm more sorry to hear you feel like you are failing or quitting. Your body knows when you need a rest. It takes a fighter to know that too.

Can you take a little break to get some strength back and then start up again? Is that the plan?

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Janet, so sorry to read about how rough things are going for you. Going through a stretch of really bad quality of life is one thing if there is clearly light at the end of the tunnel. It's quite different if it's not certain that all the treatments causing the bad quality of life are really going to help.

When I had cisplatin as an adjuvant after my surgery, it became obvious to me that 4 rounds was going to cause long term problems for me, so I quit after 3 rounds, in spite of my doctors' protests that 4 rounds would give me a better chance at long term survival. That doesn't begin to compare with what you are going through, but I think it shows which way I lean on the scale of quality of life.

I say justifying things to yourself has to be first and foremost. Then worry about everyone else. Best wishes, I hope things get better.

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I love these replies but mostly I love the love and support that is here and that they/you/we have for each other.

I don't have any advice for you Janet because I haven't been in your shoes but I've walked beside many and here's what I know to be true-- you know yourself. If its time to stop then stop. Regroup and recharge. This isn't about not being strong enough or "quiting". It's about you. It's about knowing yourself better than anyone else. It's about having a little bit of control over what is happening to you and making your choices based on YOU.

Whatever steps you take next, know that we are all here for you- sending positive thoughts and prayers and love your way.... I think about you everyday.

Sent from my iPhone using Tapatalk

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Janet -

I am so sorry to read what you have been going through the past couple of months. I have been thinking about you and hate to hear what you have endured recently. I read your post and I don't see a person giving up, I see someone taking a rest for a little while to recoup from everything you have gone through. Hang in there - I know deep down inside you do have hope & the strength to get through this difficult time!

Best,

Nikole

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Oh Janet ~

I read your post yesterday and took until today to begin to even TRY to respond. All the previous posts say tons that I could not begin to say. I've not walked in your shoes or experienced such devastating effects of treatment such as you have. So about all I can offer is cyber support/love/ comapssion with the hope that the words of your friends here can lift you just a bit to enable you to make your decisions and move forward with them.

I've followed your posts since the beginning and know you as a smart, committed lady who has researched and always done what she felt was best for her. I do not see that changing in any way. You know what is the best for you. It is difficult for those we love. who have seen us do so well, and respond to treatment eventually see things take a different turn. I think it is denial for them. That denial does not help us at all, but I suppose it is the best way that they can cope. Those of us here don't go the denial route. That is why we are all saying the same thing ~ follow what YOU believe is right for you. And some days that is a very difficult thing to do.

It grieves me to see you be so debilitated after being so active and involved and vibrant. Take the time you need to regroup, rethink, or whatever else you need to do. And during that time please come here and allow us the privilege of lifting you up and sharing just a wee bit of the burden you now carry. We all love and support you.

Kasey

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Hi Janet, I am sorry that you have come to a point where you have to make these decisions. Im sure it is a very hard choice and the last thing you need is guilt. You take that guilt and throw it in the trash can. You dont need it. Im sure your family loves you so very very much but it is your body and your pain. You do what you feel is right for Janet. You have always been one of my favorites here and I always respected your replies to others. I know whatever you decide is the right decision. God Bless!

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Janet - I've been off the computer for a day or so, but while happy to see you post I am so sorry you are dealing with this. You are an amazing woman and I know that whatever you decide to do will be the best thing for you. I cannot relate to what you are going through now, but like Bud I had Cisplatin/Etoposide as my first line treatment. For my cancer the doctor said it was the #1 choice for the best chance of survival. That was all my husband heard. After two infusions I was so sick there are no words to describe it. When I tried to tell him that I really didn't think I could do anymore he got very upset with me and said he thought I just needed to make up my mind this is what I had to do, to try harder and not complain - touch it out so to speak. I felt terrible - like I was letting him down and also wondering if I was somehow not quite brave enough to suffer more. When we met with the doctor the morning of my 3rd infusion I didn't say a word, but she took one look at me and said "well you won't be getting anymore of this combination". My husband argued of course - still focused on the fact that this was what I needed to do - but she managed to convince him that for me it was so toxic it was doing me more harm than good. In fact I believe that if I'd continued it would have killed me. I was switched to Carbo - which as you know is no walk in the park either - but for me there was a definite end in sight and it was doable for a short time only. But I doubt that I would even do Carbo again.

Each of us has to decide what "quality of life" means to us. Our families love us too much to be objective. Whatever you decide to do, I wonder if there is someone - your doctor or a pastor - who might be able to talk with your husband and help him understand.

I am keeping you in my prayers.

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Janet, I don't imagine I can say anything on here that has not already been said. I do know that when you are in the thick of it, it is nearly impossible to see the other side because your pain and side effects and sadness take over control. Someone mentioned possibly taking a short break to gain some of your strength back. Sometime gaining a fresh perspective, getting some sleep, and taking some You time can make a world of difference. I wish you the best and will keep you in my prayers.

Sara

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Janet,

I am so sorry that you are having such an ordeal.

Everyone else has said such wise things, I don't really have any useful words, but just know that I'm thinking of you and hope for better days ahead for you.

I don't think anyone really gets it unless they've walked your path, and I can't imagine you not trying hard enough. You will be in my thoughts and prayers.

Cindy

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Janet,

Just reading this and wanted to tell you are so loved here! I am so sorry to read of how you are feeling but if anybody can relate, we can.. Keep the faith that this feeling is only temporary ...although it seems like forever.. You have some big decisions to make but I know you will make the one that is right for you. That does not mean you are a quitter that just means that the path you are going down is a different one!! You are a survivor!!!! My hubby didn't understand either but then he doesn't understand alot of things that I think make perfect sense.. For example, having a clean house. I think that is normal... he probably feels very helpless in this situation and doesn't know how to react. I pray that you will start feeling better very soon! We love ya!!

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(((Janet))),

I am just seeing this for the first time and my heart goes out to you. You have been going through so much. In all of this , I am reminded of the effect that Alimta had on Mike. He developed pneumonitis and became severely short of breath. It showed up on CT scan as a ground glass opacity.. Have you had a scan since all the shortness of breath? The treatment for it is high dose of prednisone which is slowly decreased. I'm not saying this is the cause of all your problems, but sharing experiences is sometimes helpful. Just wish there was one easy answer . I so want you to feel better. I've always loved your spirit and I know that for you to be so down that you have really had a rough time and I hate that. You have been and will be in my thoughts and prayers.

Hugs,

Sue

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Janet, Im so sorry for what you are going through. Some people just sail through chemo with no problem. I was the poster child for horrible chemo trips. Your post brought back a lot of memories.

I hired people to come do things at the house that I couldnt and my family wouldnt. Nevermind why, there were some things I needed to have done to be ok. I dont know what your situation is but if you can afford to, you might want to consider that.

I also got my friends to come get me for short trips and take me somewhere. It was hard for me to ask peoople to do things because I am used to doing for others, but it was my survival.

I remember after 4 rounds, having end of life discussions with the oncologist. I could barely hold my head up I was so sick. I dont know if I could have had more than 4 rounds, but it was enough so I didnt have to make that decision.

Only you can decide your tolerence level. I just needed dark, cool and quiet so I could rest through the treatment. Yes it gets old sitting there but it may give you some additional months of life. I hope the results that are possible are enough to keep you pushing a little more. I know it is hard and depressing but we are here for you. Im so sorry this is so tough. Sometimes you need others to cheer you on when you are unable yourself, so heres your personal cheering section!!!!! Come back and let us know how you are doing.......at least once a week if you can. You are in my thoughts and prayers, Sandy

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