Ever want to give in/up?
 

As a stage IV HER2 gal our treatment will never until we run out of options and they all stop working. I am in year three and doing well but I frequently wonder what for? My kids are grown and on with their lives. Our financial situation is challenging and the copay costs and cost of staying on my insurance plan are what teachers make in a year ( I was a school teacher). If I quit my family gets my life insurance policy, I don't have to keep 30 or so doctor appointments a year, my family will no longer have the financial burden of keeping me alive...so why continue with this insanity if you're terminal?

Re: Ever want to give in/up?
 

Hi Colleen
I am lucky enough to be NED, so I cant speak to the terminal part. However I can understand your desire to be free of the doctor visits and tests and treatments and the costs of co pays, gas to get to appointments and the mental toll of it all. One thing I think you will certainly find out is if you talk to your family about this they will tell you it is worth everything and anything to keep you with them as long as possible. Everyone is different and your decisions are yours to make regardless of what anyone else thinks or believes. Stay strong and find joy. Be happy.

Re: Ever want to give in/up?
 

Colleen,

I agree with what Donna has said. Your family do not likely think about the cost, they do not want your money, the do not want to be free of you---they want you, every last minute they can possibly squeeze in.

I understand where you are coming from. We started around the same time. I however was not Stage IV at the onset. My children are grown. My SO's boys are in high school and I feel like I sometimes take him from his kids. My needs shouldn't outweigh theirs but I feel like they sometimes do and it makes me sad for them.

Isn't treatment tedious? I hate it, it causes me such anxiety. I am tired all of the time, I hurt, I ache, I feel worthless. BUT, I love life, I love my family, I love people, I love the Earth and its beauty. I would so miss all of these things. I can't quite. I have too many experiences left here. I'm ready when it's time, when things aren't quite as shiny and beautiful as they still are. I'll be ready when it becomes difficult to see beauty in my surroundings, it is then that I will let go, I will quit.

No one can tell either of us when is right. Only we can decide. I just want you to know, you are not alone in thinking this is just tedious. I'm sick of it. It's grossly unfair. Cancer sucks.

Re: Ever want to give in/up?
 

Colleen,
I am so weary of treatment, limitations, worry and the stress of a chronic disease. The one thing that keeps me absolutely going forward is the thought of my kids experiencing the loss of their mom when I know that they want me around till I'm an older old lady. So I try to create good things for which to look forward, and do a lot of self talk to myself (obvi) to stay motivated. And I have a support group. And a therapist. Maybe you need more support resources around you - it really does seem to help many.

Re: Ever want to give in/up?
 

Colleen,

I'm not in your situation so I'm not sure how I would feel if I were in your shoes. However, I just lost my husband a few weeks ago. He died unexpectedly at age 60. We were together for over 40 years. I can tell you that I would do anything and pay any amount of money to have him back. My guess is that your family would feel the same way about you!

Having a chronic disease must be draining. These diseases have both a physical and mental aspect to them. I believe at times, we focus only on the physical and ignore the mental. My guess is that what you are feeling is perfectly normal and that seeking out help from a professional would be helpful. I have found that they can help and offer different coping skills that can be effective.

I will keep you in my thoughts and prayers.

Take Care,
Brenda

Re: Ever want to give in/up?
 

Hello Colleen,

I understand where you are coming from, as I’ve been thinking the same thing myself lately. I was diagnosed with HER2 positive breast cancer in January, at the age of 41, and had a full mastectomy in February along with 14 lymph nodes removed (eight has cancer in them). I started Docetaxel, Carboplatin, and Herceptin in March, and radiation at the end of July. I also started taking the drug tamoxifen in mid-July. Everything was going well until a week before I was supposed to finish radiation. At that time, we noticed that the scab over my scar tissue had come off, and the doctor decided to biopsy the area. It turns out that there were still cancer cells there. I went back to see my surgeon, who told me the growth was left-over from my first surgery, and that he could remove it and all would be fine. In the meantime, my oncologist sent me for tests in order to “re-stage” me. The ultra-sound and bone scan were clear, and the breast MRI showed three small masses at my surgery site, but nothing in the lymph nodes. We were all happy with these results, and I was getting ready to have surgery until we got the results of my CT scan. It turns out that there are new spots on my lungs and a lymph node in my centre chest that is quite large. Given these new results, I will no longer be having surgery, and will be starting TDM1 next Tuesday, which I will be taking every three weeks for an indefinite period of time. My oncologist is also going to try and get me into some clinical trials. She told me that I am a rarity, and that she’s never known anyone who has gone though the treatment I’ve gone through, and still have cancer. She says that my breast cancer is the most aggressive cancer she’s ever seen, and she is looking into new, aggressive treatments for me. This does not leave me feeling very optimistic! I have been holding up as best I can, however, I have felt nauseous since I got the news, and I don’t have much of an appetite. Up until now, I have been fairly confident that I would beat this cancer, but that is no longer the case. Right now, my biggest fear is that my oncologist is going to tell me that I have six months to a year to live, even with the new medication, and that’s not what I want to hear at the age of 41! So, while I’m trying very hard to stay positive, I’m really having a hard time doing so, and I keep wondering if it’s worth putting my family and friends through so much stress just to extend my life by a year or two. In fact, I just got off the phone with my seven year old niece who told me that she’s sorry that I’m going to die, and that she will keep me in her heart forever, and she didn’t want to get off the phone with me. I think she’s scared it might be the last time she gets to talk to me. I tried to stay positive for her, but it breaks my heart to hear her say that. My aunt died of ovarian cancer six years ago after a six year battle, and I remember the stress my family was under at that time. Everyone’s life was on hold, as she would be good one day, and sick the next. No one knew what to expect. I really don’t want to put my family though that again. I also can’t help but wonder how anyone can get through their days, trying to live life to the fullest, knowing that there may not be many days left. So, like you, I am left wondering “what’s the point”. I’m sure my family would feel differently than I do, but that’s how I am feeling right now.

Re: Ever want to give in/up?
 

Dear Colleen,
Your family and friends would definitely plead with you to keep on fighting. It gets hard and we all go through depression and fatigue but focus on the good things, those wonderful, precious moments that you would miss. You need to get your strength back. Try to work out your appts so that they don't wear you down, either do them all close together and get them done with or spaced out enough to give you breathing room. Try yoga or mindfullness, they may help you. Eat more chocolate and get some hugs. Please understand how precious you are and how needed.
hugs and love
sarah

Re: Ever want to give in/up?
 

Yea, when my treatments (which is every 21 days) falls at the beginning of the month,
and at the end of the month, with 1 Doc. visit, one echo heart test, followed by pet
scan which is 2 hrs from checking in till I leave, and one dental cleaning.

Total 6 trips every 90 days. So yea there are times I feel like throwing the towel in.
It seems over whelming at times. I am tired at times etc. But I am not in any
pain to speak of, and yes the out of pocket expense is there. But there are more
good days then bad. And I am so grateful to still be here. Everyday is an adventure
for me, and as long as I can drive and be a part of life around me, Im ok. I do have to watch DOING STUPID things like exploring caves etc. GOT A little to daring for age 62.