Not the best news

[jmarie]

I have had 2 months on Avastin only and just had a PET to see how well I did w/out Folfox. My liver is still clear, my colon got a little smaller but the node on my left lung got a little bigger. My PET before this one had shown some activity in my sternum, I had an MRI on it and that was negative for cancer. This last PET still showed activity in my sternum. so I might also have bone mets. I have to go back on Folfox on Monday. I was hoping to be able to have surgery soon but now my Onc. says he doesn't reccomend me having surgery at this point and possibly ever, for the first time said he thinks I will be on Chemo for the rest of my life. He said for the plan for now is two months on, two months off, with a pet scan every two months. I had been holding out hope that I could do my first 12 folfox, have surgery and be in remission. I knew that eventually I would have a reccurance but thought I could get a few years NED at least. He said since I respond to chemo so well that he thinks I still have plenty of time. He has patients who have been on chemo for 4-5 years and still doing well. But what quality of life is it. Can I keep putting my family through this? My parents have started going into debt helping us out. My sister and brother use their vacation time to take care of me after chemo. Its not fair to them. I have been off of chemo for two months and feel great. I have joint pain from Avastin but otherwise have got my strength and energy back. It is hard for me to believe that I am even sick, let alone terminal. I just don't get it.

My Mom was with me at the appt and I know she is trying to be strong for me but this is so hard on her. I can't imagine what this is doing to her. I think this broke my husbands heart, I don't know how much more he can take, he is such a wonderful man and doesn't deserve this. My poor baby girl will always remember me as being sick, I probably won't have any healthy years for her to see me as a normal mother. I always new this was a possibility but to hear my doctor say it was a bit mindblowing. I guess my only hope is that chemo can keep the cancer in check until they figure out a cure. He has recomended that I go to an oncology psychiatrist(sp). I am not sure how I feel about that yet, I guess it couldn't hurt.

Hopefully after time I will be ok with this. I am sorry this is such a downer but I needed to vent. Thanks for listening
Jessica

[Gaelen]

Jessica, please take your doc up on his referral to a psychiatrist who specializes in oncology patients. That's not a 'couldn't hurt' recommendation -- that's a recommendation that it could help, a LOT, in directing your processing of what you're going through.

You're approaching now the questions that most stage IV patients have to deal with at some time in our lives, usually relatively soon after diagnosis. Stage IV is a marathon, not a sprint--it's seldom 12 treatments and done. When the mets are multi-focal (in more than one place) it makes all treatments a balancing act. Figuring out how to manage them, how your support system will work, the financial and insurance stuff is all part of it. At one point I used to check my insurance lifetime maximums; had I not switched policies after two years, I'd have hit the lifetime max on my first one by now.

How do people do it? Everyone's approach varies. But I decided early on that my quality of life was more important that quantity, and used that barometer to judge my treatment decsions. I also didn't have a doctor who gave me any illusions about how tough the treatments would be, or that my lifespan would be indefinite, and honestly, it helped to know what I was up against from the beginning -- that way I could process it, deal with it, make some hard decisions when my head was clearest and move forward.

My own counselor (who I saw weekly when I was first dx'd and now see every 2-3 weeks as needed) was a terrific help in helping me focus what I really wanted. And once focused, it's easier (for me) to follow through -- that doesn't mean every new thing isn't hard, but it does mean I have a different definition of end-of-the-world than someone who hasn't made those plans.

My strongest thoughts.

[dianetavegia]

Jessica, I'm so sorry for your news. I'd like to pray for your concerns and pray that there is no mets to the bone.

Diane

[gofisch]

This is not the news you wanted... I'll keep sending good thoughts your way!!!

[hannahw]

I think one of the hardest aspects of treatment is finding the quiet space in which to hear yourself and decide for yourself without all the distractions. You mentioned worrying about the hardships your husband, parents and siblings are facing and it seemed like you were suggesting these hardships could be reasons for not continuing treatment - you don't want to put them through it.

I wrote at length in another thread about the need for caregivers to allow patients to make decisions for themselves. In that case I was referring mainly to caregivers who, despite their best intentions, push their loved one into making decisions that aren't really in line with what they want. It could be as simple as what to eat or when to rest to as complicated as end of life care questions and when to stop with interventional treatment. Ultimately, I believe the patient should have the opportunity to decide for him/herself.

But it cuts both ways and it goes beyond caregiver interference. It's not just about deciding what you DON'T want, it's also about deciding what you DO want - without assuming and pressuring yourself based on how you perceive your treatments impact other people. It's totally understandable that you would be concerned about the well being of your family, worried that your treatments would take a toll on them. But if you want treatment, if YOU want treatment, and you and your doctor agree it is reasonable to continue receiving treatment, you should, imo, continue.

And it sounds like your family wants to be there for you. Try not to assume what they might think is too difficult for them. I'd declare bankruptcy before I'd let my Dad go it alone. There is really no sacrifice that would not be worth making when it comes to furthering my Dad's wishes, be it treatment care or end-of-life care. Either way, it is your decision. No one should make it for you. After diagnosis or progression, depression is to be expected. But it's not the way you want to make decisions. Getting help from a counselor and your doctor can make a world of difference.

If you genuinely feel in your heart that you want to stop, or that you want to start preparing for the time when you will stop, that's ok too. Palliative care is a resource that is often underutilized. Using it can be life affirming for both the patient and the family. Randy Pausch is probably a great example of this. He knew he could not cure his cancer so he focused on living life to the fullest for the time he had remaining. He left his children with wonderful memories and a legacy that his wife and family will be able to lean on for the remainder of their lives. At some point, the focus shifts, and we find hope in different forms. It is not a failure nor a decision to quit on yourself if you decide to stop. There is no wrong choice, except for the choice you don't make yourself.

[laura3364]

Jessica,

I can sympathize with how you feel. I too, thought that after radiation, chemo, surgery, and 4 rounds of FOLFOX and 8 rounds of XELOX that I would get a reprieve and my cancer would be kept at bay or cured. I was shocked to find out I "failed" the OX regimens and my cancer has recurred and spread. Like, how could I fail at being a cancer patient and not even do that right? It is very disturbing and shocking to hear. My mother has been on chemo, with a few short breaks, continuously for six and a half years. She was diagnosed with lung cancer in 2002 and by all statistics known to man, she should have passed long ago. But she's still here, surprising her docs everytime she walks in the door. She's been on every chemo for her kind of cancer there is, her tumors get bigger and then smaller, and she goes back around again. She's responded very well to everything and even though she is a right royal pain in my ass, I thank God every day I still have her.

I tell you that so you can see that being on chemo "for the rest of your life" is not the worst. It sounds like you are having a hard time with the FOLFOX and I would talk to your onc about switching to FOLFIRI or IFL. I started IFL in June and received my first dose of Avastin this week and I am tolerating it much, much better. This takes the oxi compound out. I didn't do too well with my last rounds of oxi and I still have some neuropathy in my fingers and toes from it. But I am so happy to be off that stuff, angry that I endured months of misery only to have to continue with a different chemo. My girlfriend said to me, don't think of it that it didn't work, think of it that it got you this far, and now you have to go to the next thing. I am responding much better to the irinotecan and that alone makes me feel better.

While Hannah is providing a great perspective on the caregiving aspect, and it can be hard, don't assume what is too hard on your family. It is probably harder on them to watch you suffer than any slack they have to pick up for you. Take Gaelen's advice and go to the oncology psychiatrist. You need to do what you need to do for yourself, and I can't imagine what it is like to have to endure this as a mother with a young baby. I also can't believe you don't look in her eyes and want to fight tooth and nail to have as much time with her as you can.

Don't worry about the venting. This is a place where we can talk about the good as well as the truth because sometimes we really can't share it with those around us. Sometimes we don't get the news we want to hear and we are left alone with our shock and devastation. I no longer let anyone come into the doctor's office with me because I need time to figure out how I'm going to feel about what he's going to tell me and then edit that accordingly for family and friends.

My father, who has been supporting me for the past few months while I wait for word on my disability claim, recently asked me what I thought my life expectancy would be and how much I would need to make the things I really wanted to happen happen. I was touched by this and realized that what he is not saying is that he would gladly give it all to keep me around and functioning as long as possible.

Hannah and Gaelen are right...don't make decisions based on what you are doing to your family. Glad you came here to share and I am hoping that as the days go on and you come to grips with this news, you can find ways to come to terms with how to go on.. All you really have to do is get through today. And then tomorrow. That's really all you can do.

Laura

[jmarie]

Thank you for all your responses. I am feeling a little better about my situation, probably thanks to Xanax. I don't want to stop treatments or stop fighting. I just feel guilty for what my family has to go through. My Mom was dx with breast cancer 6 mos before my dx, so I have been on the family side of cancer also. Thankfully hers was only stage 1 and she is NED for almost a year now. Honestly if it wasn't for my baby I don't know how much fight I would have in me. But when the thought of stopping treatment creaps in, the thought of leaving my baby girl stop it in its tracks. I am determined to be here for her and see her have her own babies. I will fight to the end for my little girl!

And the fact is that after 2 months w/out chemo I feel completely normal besides the side affects of Avastin, no bowel issues, no pain in the rectal area, no symptoms of the rectal or lung tumor. So I think I am physically strong enough to withstand Chemo for a long time, and my Onc might have to lower the chemo drugs toward the end of my treatments. I will go to the therapist, there are things I don't want to burden my family with but need to talk to someone about.

My Oncologist didn't say anything I didn't know about already. I knew I would have a big fight ahead of me. I knew the survival stats. I knew that stage IV is considered a chronic disease and that many people are on maintenance chemo and live close to normal lives. I was in such bad health when he met me, I was 6 mos pregnant, in severe pain, severe diahrea, malnourished and weak. The doctors sugarcoated a lot of things then because I was pregnant and they didn't know what I could handle. This was the first time he was so blunt and it took me by surprise. Although at the time they never said you only have a few months to live, many of them have now told me they didn't expect me to still be alive. Not only am I still alive I am doing very well all things considered.

[hannahw]

It's hard not to feel guilty, but one thing I can just about guarantee is that guilt is the last thing your family wants you to feel. It's funny because in close families where the family is very involved in caring for the patient there is so much concern from the patient for his/her family and from the family for the patient that everyone can easily be blinded to their own needs. That outward focus, putting energy towards each other is a wonderful thing. But everyone need to make a little room for themselves - patient, caregivers, everyone.

[AngelaW]

I am so sorry about the news. Just keep fighting as best you can. I know there are Stage IV survivors on here. Even though you may like your oncologist, have you gone for a second opinion just to see if someone recommends another type of treatment? I will have you in my prayers!

[vancouver eve]

I did not know that stage 4 was considered a chronic disease. Has anyone else heard of this?

[mpeters6]

I am so sorry to hear this.

[jmarie]

Thank you all. I am feeling a little better about this. I am trying to get myself and my house ready for more chemo. My Mom was here for the last week and has helped so much. She is the best cheerleader I could ask for. She gives encouragement and support but also knew when I just needed time to myself. My brother will be here on Tuesday to help take care of the baby. This just all proves that I have an amazing family!

[ktpartner]

Im really glad that you are feeling better. I was really struck by the offer of the Oncological psychiatrist. I think that is amazing - I wish that our cancer facility offered that service. Cancer is tough on everyone, and I figure that if we can put some of the stress on the shoulders of paid professionals, why not go for it? OUr facilit y has a social work department, and i really found them to be great when we were in some tight spots. They have seen all kinds of families cope with all kinds of issues, adn thier advice and support made a huge difference to us. I mean -= if they have any short-cuts or strategies or referalls or whatever, i want any leg up we can get.

[luciag]

I would like to mention Cancer Care as a resource I have found helpful as we have taken this journey. I have been participating in their teleconferences since my husband was diagnosed. They also have oncology social workers available for support via phone. Their web address is:
http://cancercare.org I think it is very helpful for all us if we can find someone to listen to us during these crises with empathy. That is why Colon Club is so powerful!

Cancer Care also has podcasts of their education sessions that you all may find interesting:
http://www.cancercare.org/get_help/help_by_diagnosis/diagnosis.php?diagnosis=colorectal

My thoughts and prayers are with you.

[Sandy Ellis]

When I read your storey it touched my heart when I saw you had a baby girl.

I only recently learned I have rectal cancer and I don't know what stage yet.

My husband was there when I had the colonoscopy and the Dr told him then I had a tumor.
I was in recover at that time. My husband went to call our daugher and she is 26.
It was her tears that hurt so bad.
She lives a few hours away and is married.
But when I home and she called me she had left work early and was ready to come here to take care of me.
I expressed that I didn't know how much fight I had in me. (I have struggled with lyme disease for over 20 years)
After talking with my daughter and hearing her cry, all I could think about is how would I tell her by.
I don't want to make anyone feel sad by making that statment.
I can't imagine if she were small how much harder this would be.
You must be a very stong person to have gotten through this.
It is wondeful that you have a loving family.
You are so young and it is so sad having to think about making a choice like this.
I will keep you in my prayers.
Sandy

My husband and daughter are the only family I have left.
I would love to have some