Overcoming the Mental Battle of Metastatic Cancer

Started by Tonia, December 23, 2014
11 replies for this topic
Tonia

Member
558 Posts
Posted on
December 23, 2014
When I was diagnosed with a breast cancer recurrence to my lungs, liver and bones at the ripe old age of 31, I had no idea just how many bumps and potholes lay in the road ahead. Unlike my previous early-stage cancer diagnosis, there is no light at the end of this tunnel.

The mental challenges of having stage 4 cancer are just as overwhelming as the physical ones, and I totally underestimated them.

First, there’s the uncertainty: I’m happy for today, and today I feel good. But how will I feel tomorrow? Is my current medicine keeping my cancer at bay?

Then there’s the big picture: How many more good days will I have? Is this as good as I am ever going to feel? Am I optimistic or crazy to think I can live a long and somewhat normal life?

Followed by the logistics: What drug should I take next? Will this chemo make me too drowsy to drive home? If I enroll in this trial, who is going to babysit Henry during all those extra doctor appointments?

And of course: how much time have I wasted worrying about time I may not get? Why can’t I just be happy to be here today? If I don’t have as much time as everyone else, I don’t want to waste it worrying over things I cannot change! I have always considered myself a glass half-full kind of gal, but I’m almost three years into my metastatic diagnosis, and I feel like I’m on the verge of losing the mental battle.

My family spent Thanksgiving in the Caribbean, and even there – playing with my little guy in the sand under the shade of the palm trees – I caught myself thinking about the fact I had a chemo appointment the day after we got home.

It’s bad enough that cancer may shorten my life, but it’s cruel to have a dark cloud looming over the time that I do have. With the holiday season upon us, it’s even more important to me that I clear my head enough to enjoy spending time with my family. I can’t truly enjoy watching Henry “get” the magic of Christmas for the first time if I’m too busy worrying if it will be my last.

Santa Claus is coming to my house this week, and I want to relish every moment.

So to all of you other stage 4’ers out there, I need your help. What’s your secret to turning off the little voice in your head? How do you keep cancer from ruining your good times? How do you juggle the mental challenges of a demanding treatment schedule with living a full life?

I certainly don't have all the answers. 
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Anonymous

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Posted on
December 23, 2014
When I was diagnosed with a breast cancer recurrence to my lungs, liver and bones at the ripe old age of 31, I had no idea just how many bumps and potholes lay in the road ahead. Unlike my previous early-stage cancer diagnosis, there is no light at the end of this tunnel.

The mental challenges of having stage 4 cancer are just as overwhelming as the physical ones, and I totally underestimated them.

First, there’s the uncertainty: I’m happy for today, and today I feel good. But how will I feel tomorrow? Is my current medicine keeping my cancer at bay?

Then there’s the big picture: How many more good days will I have? Is this as good as I am ever going to feel? Am I optimistic or crazy to think I can live a long and somewhat normal life?

Followed by the logistics: What drug should I take next? Will this chemo make me too drowsy to drive home? If I enroll in this trial, who is going to babysit Henry during all those extra doctor appointments?

And of course: how much time have I wasted worrying about time I may not get? Why can’t I just be happy to be here today? If I don’t have as much time as everyone else, I don’t want to waste it worrying over things I cannot change! I have always considered myself a glass half-full kind of gal, but I’m almost three years into my metastatic diagnosis, and I feel like I’m on the verge of losing the mental battle.

My family spent Thanksgiving in the Caribbean, and even there – playing with my little guy in the sand under the shade of the palm trees – I caught myself thinking about the fact I had a chemo appointment the day after we got home.

It’s bad enough that cancer may shorten my life, but it’s cruel to have a dark cloud looming over the time that I do have. With the holiday season upon us, it’s even more important to me that I clear my head enough to enjoy spending time with my family. I can’t truly enjoy watching Henry “get” the magic of Christmas for the first time if I’m too busy worrying if it will be my last.

Santa Claus is coming to my house this week, and I want to relish every moment.

So to all of you other stage 4’ers out there, I need your help. What’s your secret to turning off the little voice in your head? How do you keep cancer from ruining your good times? How do you juggle the mental challenges of a demanding treatment schedule with living a full life?

I certainly don't have all the answers. 
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Anonymous

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0 Replies
Posted on
December 23, 2014
Great article! I definitely find myself wondering if this is the best I will ever feel (I have stage IV lung cancer). My way of coping with this is that I really avoid thinking about the future. I have a house full of little ones to keep me focused on the present, since their needs are so immediate. It's funny, they are what give me the most heartache in this whole situation, but they are also what keep me grounded in the present. Happy holidays to you, and may you have many, many more!
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Anonymous

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Posted on
December 25, 2014
Tori, you are so right! Henry is almost three years old, and he definitely helps keep me in the present. No time to sit and dwell too much on the big picture!
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Anonymous

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Posted on
December 26, 2014
My dear Carrie, though I am the caregiver for my husband, diagnosed with recurrence of Mantle Cell Lymphoma in September 2013, (originally diagnosed with stage IV in December 2007), our history of ups and downs would take more than I could post in a commentary entry. However, I have heard my husband say more than one once , "Not one minute have I lost any sleep over cancer." This comes from two primary perspectives. One, there is nothing he can do to control the outcome. God knew our number of days even before he was conceived. The second, we are instructed not to be anxious about anything. "Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding will guard your hearts and minds in Christ Jesus." Philippians 4:6-7 NIV My husband has battled the physical and mental effects of this dreaded disease. He has times of weariness simply from the journey. But though the original diagnosis appeared so grim and still at times makes one wonder what the future holds, we know who holds our future, and this simple fact gets us from one day to the next. Yes, the journey is grueling and the endless doctors appointments and what seems to be the constant discussions about clinical trials and the traveling back and forth from North Carolina to Houston, are tiresome at times, we keep moving forward and living our lives one day at a time. Thank you for sharing your journey. May you be blessed with many days, weeks, years with those you love.
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Anonymous

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Posted on
December 27, 2014
Carrie, when I think of you the first thing that comes to mind is your incredible smile. At the MBCN conference where Mom and I met you, we sat through hours of lectures on treatment options, concerns for MBC patients, and so on. Don't get me wrong... it was great information, but it was a lot to take in in one day. I had gone out to the lobby to take a break when I ran into you again. We talked for a minute, then you blew my mind. You simply said, "Y'all wanna get out of here?" We were 1,000 miles from home, in a strange city, and we just assumed we'd be stuck at that hotel for the duration. But you and Chris offered us the insider's tour, the escape, and you were so generous to take us with you. So we left and got some great seafood and watched a football game. Sometimes you have to do that. When cancer takes more than its fair share of your time and thoughts, just escape. It's OK to take a break from thinking about it and just enjoy the moment. When I was re-diagnosed, my mom told me, "When you have a good day, enjoy it. When you have a bad day, hunker down and wait for a good one." Focus on what you can control, and don't give stupid cancer any more of your time and energy than it deserves. Love you - sending you hugs across the miles.
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Anonymous

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Posted on
January 07, 2015
we have much in common,, yet, as you know each cancer is all so unique... typing is not my ability with lymphedema ,,, I live in st louis area... our phone number is 314 838 7619 if you would want to call sometime. I am 55 years old... cancer began at 45... you are much younger than I..... I will pray for you if I may. This is the only way to stay focused for me. My faith in God who is with me in all things and helps me keep my focus.... I, like you,, want to have cancer in the background not always in front of me...lurking over me. I find how you write very descriptive of how I also do feel.... keep on writing. Let me know in what ways I may keep you in prayer. God is before all things and in Him All things Hold together.... that means so many things as we go thru our daily lives.... you can see His hand keeping the stars and moon at night.... the sunset returns each evening,, the sunrise we know will come the next morn.... just as His compassions are New Every Morning,, great is His Faithfulness.... hope I can find this again.... this blog of yours...... from Jean.... another stage four breast cancer mets to bone and liver..... thank you for your blog..... it is refreshing to me..... take care and Yes... enjoy Each moment..... as a gift ...... it is.... and we see things differently now don't we? it is not just glib talk... but we mean it when we say.... precious this moment is...... take care and I will toast with you to your New Year..... keep in touch.... nice to meet you ...... Jean
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Anonymous

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Posted on
January 08, 2015
All your articles touched me on a very personal level. I was diagnosed with Stage IV Lung Cancer at 30 years, just six weeks after giving birth to my first and only son. Two and a half years later, my family and I press on through this journey. In some ways it gets easier, in other ways harder, but it wasn't until recently that I found peace in the idea of living one day at a time. Today, I am fine, I'm present, and there is no tragic ending. A day for me is manageable. It's nearly impossible to maintain that focus all the time but it resonates with me when I feel overwhelmed and I hope that it will help you in the new year too. And congrats on the fantastic news you received heading into the new year!
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Anonymous

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Posted on
January 15, 2015
Great article Carrie! I was diagnosed in 2009 with stage 4 breast cancer. At the time my children were 9, 12, 14 and 16. All I could think of was how they were going to come out of this okay. My sister was diagnosed the year before with stage 2 breast cancer and they watched as she underwent treatment. She handled it well and made it seem like no big deal. We just compared my situation to hers. The reality was that it wasn't the same, but through positive thoughts, lots of prayers of a wonderful support group, I was able to get through the hardest parts. Once I realized that God has a plan for me and everything would be okay (whether I stayed on earth or not) then a peace came over me and I was able to handle whatever news was given. After what seemed like a year of bad news, things started to turn around and I have had no evidence of disease for 5 years. yay! I have days where I worry, but the worries don't last long. To make a long story short- prayer and support is the answer:). I live in the Seatte area and my number is (425)275-1280 if anyone ever wants to talk.
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Anonymous

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Posted on
January 22, 2015
Listen to me. Get the best medical care possible. It means your length of survival. Move closer to Houston if you have to. It's worth it. I have lived with BC for 10 years and mets to lymph nodes for 8, and recently a tumor on my hip in 2014. Try to figure out what cancer is here to teach you. Read Kris Carr. Change your diet, take supplements. Read, study your disease. You'll feel more empowered. And yes, you will have your "Come to Jesus moment." And you know what, it's okay! Build a legacy where you'll be remembered in the hearts and minds of people you love. And maybe someone else too. No I haven't walked your road, but those are some things that have brought me peace.
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Anonymous

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Posted on
January 29, 2015
I am on my 3rd cancer (breast both sides, 4 years out with the second one, knock on wood) and then one of the incurable lymphomas. That incurable one was, and is, qualitatively different because I know I am likely going to die of that well before my time. My child is older than yours, but mostly she has only known me messing with one cancer or another. I am friends with someone with stage 4 breast cancer (6 years out so far), who has an 8 year old. We were talking about the no cure aspect and we both found we do grieve for what we will miss, the future we will not have if we had never had our respective diseases… She had fallen prey to the "positive attitude will help you have a good outcome" rubbish and so had a layer of guilt. (A research article I showed her helped with that LOL). And we both agree some days are better than others with respect to how we cope. There are days and then there are days (or sometimes weeks). It took me about 18 months to get a handle on the no cure aspect of this and I still revisit it on occasion as I worry about my daughter (I adopted her as a single parent), my cats… and many other practical and not so practical aspects of this. There are days I still sometimes cry and wonder why it is worth it… that is partly likely depression speaking there so you might want to think about that. Depression doesn't just mean you lie in bed with the lights out all day. It is also feeling hopeless or very discouraged, not doing the things you like because it takes too much effort (not counting the chemo hit on the too much effort) or you wonder if it is even worth it doing the activity or you have forgotten that you even enjoy it anymore… depression robs you of joy. I also found not feeling guilty about having some pity parties can help - after all what is going on isn't fair, it isn't fun and I am sorry but I am in the group where I don't find one good thing about having cancer. There are easier ways to build character and learn to appreciate what we have. Sometimes after a good cry I can more easily pull it together. i also force myself to plan one thing I will enjoy every week even if I think that is pointless - whether it is an escape to sit at the reservoir and watch the water, rent a movie I will enjoy, call a friend and visit… forcing myself to do things I know brought me joy in the past helps. Memories about experiences matter and experiences are what brings happiness, not things as much. I try to create memories with my child - I know your child is young but lots of videos of these things, photos, written down stories will help your child remember. It doesn't have to be big things - making brownies together, doing something silly where we both laugh as hard as we can...I try to create memories for others in my life that are important to me. I try to create memories for me so that when I feel down or like crap I can think about things that make me happy. Laughing does help increase mood (there is research behind that). I find that I am more interested in watching movies and TV shows that make me laugh, that don't have a "dark" side… when I am feeling really down I try to make myself watch something that will make me at least smile, if not laugh out loud. And I try to let light into the house - sunlight, bright lights.. I am affected by short, dark winter days, Is it to a clinical level? I have no idea. What I have noticed is that if I sit by a window in the morning where sun streams in on me I feel a bit better, If I can force myself to go for a walk (I hate exercising - I used to take people camping for a living and was in shape due to my job. Then when I left that profession I have struggled with the exercising for the sake of exercising - to me it seems pointless) I find that I feel a bit better. I am currently homeless due to cancer wiping me out financially and my gofundme has helped but not enough (it needs to somehow go viral and I have no clue how to get it attention - I live in a state that did not expand medicaid and my health insurance alone is $798/mo not counting deductible, out of pocket, copays, MD Anderson payments so they will keep seeing me…- that alone is more than I make a year and I don't yet make enough for a subsidy). My friends who took me in so I wasn't living in my car in Walmart's parking lot have several dogs. I am not a fan of dogs but I take the biggest one for a walk because it forces me to get out the door, he wants to walk fast and it forces me to exercise. In many ways getting used to a diagnosis like this is like grief - you cycle though periods of intense pain. Over time the periods of intense pain become further and further apart, don't last as long, but the pain is still pretty intense during those moments. And sometimes finding ways to give to others helps. Sometimes it is just the act of giving and seeing the other person's joy or gratefulness. Sometimes it helps because I can privately thinK, "well at least I am not *that* bad or at least I don't have that problem…" and so by comparison things look a bit better. And quite frankly sometimes nothing works. Those are the days I cry, feel sorry for myself (and at the same time put myself down for feeling this way), sometimes am angry and ask why me (knowing that is a rhetorical question with no answer)… because sometimes life just sucks and that is the way it is. So far I have been able to pick myself up and keep moving forward even though at times it is just by focusing on metaphorically putting one foot in front of another. And other days I "get over it" for a while and can go on almost as if today cancer doesn't matter. But there isn't a day that goes by that I don't think about it at least once, often more than once. I am not sure anything I am saying will help you…it is just what I have arrived at after some really dark and discouraging days. Take care.
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