Sunday, April 15, 2012

This Surreal Life

The high school where I work, and where my son attends, had an event last week where all the classes play games against each other to be declared the victor. They are silly games, fun to watch: obstacle courses, dizzy frolics, crab walks, etc. It is the event of the year, and many people from surrounding middle schools bring their families to watch, and then they decide to send their children to our school after watching this raucous display of good sportsmanship and school pride. Rightly so, I should add: I work at the best high school in Sacramento.

I go every year and love the kids' joy at being young and having all life right in front of them, and competing at something that doesn't matter at all yet matters so very much at the time.

I had a shirt with "judge" on it although I wasn't really judging, and I sat in the staff/judges section. I had been asked to save spots for people on the floor so I did - put my purse to the left and my coat to the right. The stands filled up - thousands of kids and families there.

But, my coworkers never came so I was all alone with several feet on each side of me in a sea of people jammed next to each other, screaming, chanting for their class, for their kid. As I watched, isolated, I dissolved out of the picture. I saw the teachers I work with every day, I watched the kids, I heard the screaming but it was all a bit unreal and as if I was in a mist, a sort of out-of-body experience. I was watching but I wasn't there. I knew that next year, this event would go on exactly like it has for 30 years, and the only difference is I may not be alive to see it. Would anybody notice? Would anybody think of me? I saw them blowing whistles, judging events, laughing with each other, and I knew they wouldn't; I am dandilion seeds, blown into the wind. Gone. But, I looked up and there was my son on the highest rise in the back corner with friends, smiling and cheering. He would think of me. Would he be sad? Would he forget me for this one fun moment? Would he be remembering how much I enjoyed this event? I felt sorry for that motherless boy in the corner.

I do this more and more lately. I'll be sitting at my computer at the dining room table, and my son and husband will have a conversation in the other room, and I am not a part of it anyway, but in my thoughts, I'm really not a part. I'm already gone. I imagine them talking like this when I'm dead. Will they be having this desultory conversation about mundane things, exactly as before? Will they feel my loss or will it be normal? It's both a comforting and disturbing thought.

This is what having a terminal illness is like. You now see yourself as two people - the one fully present and enjoying life, at the same time, you are seeing things as if you will be gone. It's almost like having a split personality. You can enjoy the things you are doing, but out of the other eye, you picture the world without you.

Because, you know that life does go on.

It is very strange to be at a place and not there at the same time, but that is what is happening. You begin to feel alienated from other people. It's particularly so for most of us who still appear to be healthy. We are dying, yet we don't need to park in the handicapped zone; we don't look sick, we wait in line, we listen to people talk about their small aches and pains and petty problems, and we are standing behind them with this big huge secret.

Due to medical advancement, those with Stage IV metastatic breast cancer live healthier lives. It used to be that cancer took over and we died quickly. Now, we are able to beat it back for a year, for two, or five if we are lucky. But, there is no cure, and everybody eventually does die. This means this new generation of cancer patients must live in a strange kind of purgatory, our brains split between life and death.

It's an odd feeling to mourn your life while you are still living it.



  1. Please know you are an inspiration to me. I recently finished my year of Herceptin. Each day I try to be grateful for what it is, knowing that tomorrow may not be there. Your insight to this surreal experience validates how many of us feel. I wish you peace.

  2. I started reading your blog after a friend with cancer showed a link. I don't have cancer, nor do my loved ones, but a couple of my friends do.
    I never realized someone in your situation would sit & wonder what the world would be like after they are gone. I feel ashamed that it has never crossed my mind in that way. God bless you in your fight.

  3. I don't have any answers. I just know that I understand this surreal experience. I hope that you are able to take every moment you can to leave a part of you for you son. My sister was killed instantly and left 2 boys. We didn't get to say good-bye, we didn't get that one last hug. Memories are all we can give to our loved ones. And I know that you are doing just that, creating memories. You are an inspiration to many ... perhaps that is your legacy. And know that we cherish you.

  4. thank you for putting into words what I have been thinking for 4 yrs now I have triple negative breast cancer and am 35 yrs old my family gives me funny looks when I just stare at them while they are in conversation or at holiday get togethers but im trying to imagine a world without me and if anyone will care im gone it is a split personality of sorts glad im not the only one i been reading your blogs your perception of this disease helps me better understand and i thank you.

  5. Sigh. I'm with you. It's a strange life we live.

  6. Christina, here is hoping you remain cancer-free and herceptin does the trick for you, as it has for so many others. @ Anon1 - don't feel ashamed. I'm sure you are a good friend. @ Carol, I'm so sorry about your sister. It does sound funny but I do feel lucky that I know I am going to die and have the time to make these memories with my sons. And, @ Anon #2, sorry you are with me on this but I hope it can pass for you. Maybe your family will understand a bit better if you show them my post.

  7. Hi Ann,
    I found your blog in May 2010 when my mom was diagnosed with Stage IV breast cancer. I was 25. She was gone by November. I had similar thoughts as you, but in the reverse situation. "This will be our last 4th of July together." "This will be the last time that she'll wish me a happy birthday." It's heartbreaking.
    A year and a half after she's been gone, I still think of her every single day. OFTEN, every single day. And it seems like I think of her the most during the seemingly trivial parts of life. When my dog does something really cute. When I hear her favorite song on the radio. When I wash my face and see that I have her eyes. Whether you like it or not, there's not a chance in hell that your boys will be able to NOT think about you. And that's because you're a wonderful mother.
    Stay strong, but make sure you let the sad out every now and then too.

  8. Ann, Your family will miss you more than you will ever know. My Mom has been gone 31 years and I think of her every day. It is the especially happy times or sad times when it hurts the most. Thank you for sharing your life, and thoughts with us. You will never be forgotten.

  9. This may be among the most powerful things I have ever read. I don't know how you were able to verbalize those thoughts but they are unbelievably powerful. I'm here...... always ready to listen and jump in to help however I can....


  10. Just found this blog..... I so understand your words.. I am another metastatic breast cancer "survivor"..... I have made it 17 years since initial diagnosis.... 5 years since stage 4.....metastasized......terminal......
    a mother of 4...... and one grandchild, who I hope will remember she once had a gramma

    Thanks for your sharing

    1. Thanks Kathi.... I needed to hear that some people make it pass the 5 year mark.

  11. Oh Ann, This just hit the nail on the hammer. It's like you crawled into my head and wrote down my thoughts and feelings. I hope you are wrong and that you get to enjoy many more silly competitions.
    Michelle (aka 3littlegirls)

  12. Ann, I was diagnosed in 2010 with stage II breast cancer and I am constantly thinking about the "what if's." I showed my 16 year old daughter how to check the oil in her car, start the dishwasher, etc. in case "my cancer comes back." I feel like I will never be able to get on with my life because of dark thoughts. You put into words the way I feel/think at times and I am not stage IV. Love to read your blogs. Best Wishes!

  13. Ann, you continue to inspire by writing your truth in a way that most dare not, or cannot. You enlighten me with aspects of your journey that I would not know about or wonder about, if not for you writing about them.

    My DH's first wife passed from breast cancer that had spread to her bones. Though I never knew her, but I think of her often — far more often than anyone even knows. I think of her when I have holidays with her sons. I think of her when I am preparing a meal for my husband. I think of her when I am blogging or online, as she too found comfort in an online community (in its infancy). She knew she was dying. Did she wonder how her sons and husband would interact without her? Did she imagine those conversations, as you just did? It makes me wonder even more.

    I guess my point is that I think of a woman whom I never knew every day — because she loved the men I now love, because she is so much a part of the fabric of our family. She created this family! I'm simply taking care of them now.

    So I've no doubt that your DH and your son will think of you all the time, every day — and always will. You don't have to worry about being forgotten. You will never be forgotten. They will always love you, they will always think of you, they will always ask for your guidance — wherever you may be.

    Now go forth and live your life and enjoy that family. The one you created. xoxo

  14. Ann this is so true, thank you for such an honest and frank post. I know that as soon as I was diagnosed (and I know Stage 3 is a completely different beast) I started going through so many of the same thought processes.

    It is so hard, and critically important to share these thoughts - thank you for your powerful post. It is vital for those around about to understand just what cancer does to the mind as well as the body.

    Big hugs and I am wishing for the treatment to carry on carrying on
    Philippa (aka Feisty Blue Gecko)

  15. Beautifully captured. I wish that you didn't understand this feeling so well.

  16. Dear Ann, I follow your posts week by week and have come to know you as a strong and beautiful person. God gives us all just one day at a time to live, that day is ours to use to its full, doing whatever we need to do and using every second of it as best we can. None of us know what tomorrow may bring, our lives are in God's hands. Never give up believing that miracles may happen, they often do. You are in my prayers always. God bless you and keep you safe in His loving care always.

  17. Ann,
    This post is beyond moving and powerful. It generates so many feelings within me. It's hard to imagine life just going on without us isn't it? Living with a terminal illness is so incredibly isolating and lonely. Just know you aren't completely alone. I'm listening too. This post inspires me to work even harder to try to get the metastatic bc stories out there. Thank you for this compelling post, Ann. Hang in there. Hugs to you.

  18. Ann, Because of writing like this, because of your generous sharing of your experiences, you will stay with us long after you are gone. And I will treasure that.

  19. Ann,
    I don't have breast cancer, I have a rare form of liver cancer and although my last scans looked extremely promising I feel the exact same way you do about living in a duality of the living and dead. There is not a day that goes by that I don't think about how life continues even in the absence of my presence. I too appear to be healthy and I often feel healthy but have the nagging feeling that it will all go wrong again in an instant. I hear you loud and clear about the turmoil that you carry with your every single day and am so sympathetic to your situation and feelings. When those dark thoughts start flooding into my head I try to live in this very moment and take every single bit of life in so that it is forever etched into my mind. Every single day is a blessing to me. None of us have the promise of tomorrow, some of us feel that more acutely than others and I think that is what makes us more appreciative of the time we do have left and the people and family around us.
    Thank you for sharing this. It is so important for others to know the feelings and emotions that the "terminally ill" struggle with daily.
    I am sending you so many prayers and thoughts of love, light, peace and health.
    The Cancer Assassin

  20. Thank you Ann for letting me know that I'm not the only one that feels I'm living a double life. Sending you Love&Hugs

  21. There are no words that I can write that will ever say what is in my heart and mind. Just know you are admired and loved by many and will be greatly miss but my bet is that will not happen for a very long time.


  22. Diagnosed at the same time as you, I have followed your blog ever since...not yet stage iv myself but always thinking of all of my sisters...You are brilliant, insightful, humorous in impossible situations, and cherished.

  23. You all are making me blush! Although I mentioned it, I'm not worried about being forgotten. My children will always remember me; I know that. And, eventually, time goes by and we are all forgotten, it's the nature of life.

    I had no idea so many women who are not metastatic had the same out-of-body type experiences. I hope that you all get far enough into survivorship that it passes. I will be hoping that for each and every woman. I agree with the Cancer Assassin - we all need to try to live in the moment. If cancer teaches us anything, it's how powerless we really are and how all we really have is this one moment we are living.

    You all are wonderful, thanks!

  24. Sometimes I wonder if fully living in the moment is making me a little nutty. Simple, mundane tasks can take on such poignancy to me now that I can be spell bound. Like last night, the nightly ritual of stepping into my son's room to pull up his comforter, and most likely causing him to be too warm, but still I must. I stare at his perfect little sleeping self and fall in love again, then have to force myself to go to bed instead of staring at him, wanting to breathe in every bit of him.

    Love your eloquence!

  25. I don't think anyone else could have said it better.

  26. Ann,
    Do you have any religious beliefs? no need to answer. Not evangelizing, though I should, I am no good at it though. I write this because you have delineated the reality between here and THERE. IMHO you have written about a reality few acknowledge- there is there and somewhere else. ;-)
    Beautiful writing- just think you'll be like those artists discovered after their gone! /blackhumor Forgive me. This is truly wonderful. Your family will marvel and cherish your words, insight and appreciation of life.
    Love, Anon

  27. Ann, this is haunting, and well put.

  28. Thanks for sharing your thoughts, Ann. This brought tears to my eyes. I have had 2 different cancers, so of course I have thought about dying, but I never thought about it for long. I am NED now, and hoping to stay that way, so I rarely think about death. When I do think about it (usually after hearing on the news about someone dying from some freak accident), I feel sad because I know my daughters will miss me very much, but I'm thankful they can have peace knowing I will be in a better place, and someday they'll see me again.
    I appreciate you sharing your insights into something only those with stage 4 can really understand. Praying you will be around, writing this awesome blog, for many more years!

  29. Ann, thank you so much for your insight. It was so beautifully written. I have tears in my eyes at the moment, because of an experience I had earlier today with my 4 year old daughter. We were driving in the car, and she started making animal shapes out of the clouds. It was an absolutely gorgeous day. I had a flashback of riding in the car with my mom, at the exact same age, making "cloud" animals. At that moment, I wondered if something had happened to my mom at that age, would I have remembered her? I tried to imagine her, driving...singing Carol Kane. Beautiful breezy, spring day like day. I remember her turning the music up, and us singing along. Her long hair blowing in the wind. We were headed to a women's prison where she helped mentor inmates. I do remember all of that.The problem I had today, was dealing with remembering my moms face at that moment.That special moment we had between the two of us. My mom is still with me, and very supporting, yet I find myself longing to remember vivid visuals of HER face! My daughter was only 3 when I was dx at stage 3 last year. I am at high risk for recurrence. I always thinking, will my daughter remember me when we had our spiecial moments together. Will she remember not just the day, but my face? Not my face from a picture, but my face and the expressions I had on it during our special moments together. You hit the nail on the head for me today Ann. Just thank you! To know I am not alone in these thoughts helps with the anxiety of living with cancer. Much love to you!

  30. I've lost three friends in the last four years to breast cancer. Two of the friends I was never able to meet in person--they lived in another country and our relationships were conducted entirely on the Internet and the phone. I was diagnosed with breast cancer, had surgery and treatment in 2005 and it was in the capacity of having had the breast cancer experience that we connected. This comment is in reference to your wondering if you will be remembered. I think of these friends every day, throughout the day. The mark they made on me is indelible and I feel an intense loss. Much of what I think and do is a result of having known them and having lost them. My best wishes to you. Susan

  31. So beautiful, Ann. Your words access that elusive spot where one can almost touch the thin veil between being life and death. Thank you for sharing this with us.

  32. I'm so glad I found this blog. This post in particular is spot on. I'm 30, dx with MBC 21 mos ago.

  33. Beautiful post, Ann. You know, it makes me think about how precious life is - a reminder not to take anything for granted - regardless of whether you have cancer or not. Any moment is fleeting, and any memory only lives on if remembered. I think that's it's beautiful how awake you are living right now - I know that I, and probably many others, have grown a little more caring, a little more knowing, a little more alert, because of what you've written... thank you for that gift!

  34. Incredibly powerful - shedding tears here in Australia. I will show this to others. Thank you for writing it. I can't tell you how much I wish you didn't have to. Sending an almighty cyber hug...

  35. Reading this post has given me an interesting perspective on what my family is dealing with now. It has been almost seven months since my husband's mother died, and my husband is still having a pretty hard time coping with the loss. The kids are doing OK and going on with their normal activities, even my daughter C1 who was the closest to her of all the grandchildren. People around my husband keeping treating him as if he should snap out of his funk already and move on. After reading your post, I wonder what his mother would be thinking right now. Is she glad to see that ABM hasn't forgotten her and that her absence weighs heavily on him every day, or would she rather see him moving on like the kids?


Thank you for commenting. If the post is over 14 days old, the comment will be moderated and will approved later. This is a spam prevention technique - but I love to hear from you!