Sunday, September 4, 2011

Planet Unicorn

Ducking, running, weaving, bobbing, falling down, getting back up, managing, adjusting, adapting, screaming, world shrinking, confidence eroding, always moving, always shifting expectations. 
 That's the game of living with metastatic cancer of any kind.

It's been almost two weeks since, after months of excruciating pain, I awoke to find my left eye had drooped and my left hand had become almost completely paralyzed due to my breast cancer.

Since that time I have been receiving emergency radiation, which has sapped me of a good deal of my physical energy. I've also been spending a lot of time lying around contemplating this new reality in which I find myself, staring into space and feeling sorry for myself and wondering how I can possibly move forward and face the next moves in this evil game of cat and mouse.

I feel trapped in a body that I no longer know. I don't see myself when I look in the mirror anymore. I see someone getting tired and old before her time. Tired of constantly getting hit in the head, and constantly pulling myself back up only to be hit again. The toll on my body, mind and spirit is definitely starting to show.

I'm having trouble adjusting to the thought that I'll never really be able to use my left hand again. The hand feels like an alien piece of meat attached to my body and no longer obeys my brain's commands. I think I might be mourning it's loss, and the freedom that it's use offered in being able to live my life in the way that I liked to do. It's loss takes away from so many enjoyments that I don't think even yet I've fully begun to experience or contemplate. I think I might still be in shock over this.

I want to scream, I want to beat my fists. I hate that this has happened. I hate what this wretched disease is doing to our lives. There is nothing about having cancer that has enriched my life - nada. It just takes, and takes and keeps taking. Every time there's a new crisis, Beloved and I must take stock again, to see what we are left with and keep the faith that we'll be strong enough to get through whatever else is being served up. How so markedly different our lives are to our peers. We may as well live on another planet in another dimension entirely, our lives are so far removed from what most people could ever imagine. It just all makes me so sad and angry truth be told. It's simply not fair.

And so now the question becomes as to how long it's going to take me to bounce back mentally from this latest catastrophe and assault to my confidence. Somehow I have to psyche myself back into the the chemo chair. Be a strong and "empowered" patient. Find some blind faith, tempered with a bit of hopeful reality, to try and ignore the fact that at this point we're just going down a list of treatments with the understanding that there is little likelihood of a cure or indeed any guarantees of my ultimate prognosis. More chemotherapy to erode my quality of life just a little bit more. Waiting for the next scan to see if there's any improvement. Or not. Then whatever the next move is after that. Then the next crisis. And so it just goes on. Ad nauseum. No breaks, no end game, just a relentless and exhausting tedious cycle of heartbreak and devastation.

Trouble is no one really wants to hear any of this.

They want to hear that I'm feeling better. That I'm coping with the loss of the hand. That treatments will work for me. That people with metastatic breast cancer can "do well" for a very long time. That I'm feeling more positive about things. That I can get through whatever this disease throws at me. That I'm continuing to fight. That I won't ever give up. That I will remain hopeful, no matter what.

Yeah, yeah, yeah I hear all of that, but right now I'm reserving the right to wallow because I need to. My brain is just lacking the emotional and physical energy to do much else right now. Perhaps it's just switched into self-preservation mode, whilst the rest of my battered body tries to catch up.

I just want to tell the truth and surprise, surprise life isn't all fluffy pink unicorns dancing on rainbows, no matter how much I wish it were.


  1. Sometimes a person has to wallow a bit. You're right, none of this is fair. Go ahead and be angry. Be sad. You have every right to be both. When you're ready, you'll muster up whatever you must and carry on. Remember keep on keepin' on. No matter what, I for one, do want to hear the truth, YOUR truth. I'm out here listening. Lots of us are my friend.

  2. Dear Rachel!
    Thanks for telling! I want to hear it! You don't have to protect others, it is important to share this. x
    Wish you all the best.

  3. We need to know this, Rach. We all need to know. And I'm listening, my friend. Hate that this is your reality now, but you are keeping it real, and I'm listening and I'm not going to run away. Ever.

  4. No advice just wanted to let you know I was thinking of you.

  5. Hi Rachel
    As the other ladies said "I want to hear the truth"! I am done pretending I'm OK when I feel like crap, I'm done being all smiley till my teeth hurt when all I want to do is just be left alone and not told "Don't worry You'll beat it"! How does anyone know do they have a magic crystal ball? You go complain, rant and just be what you want to be and forget the rest.... You have a lot of back up!
    Love Alli xx

  6. Been out of the loop for a month and didn't know what was going on with you. Reading your post is a very raw flashblack, standing in the shoes of your husband. You do whats best for you...the hell with what others want to hear. I love you and my heart is with you both....and always here for you.

  7. Wallow in it, scream, throw things...that's how I feel. It's ok to be pissed and sick and tired of being tired. Screw the people that want to hear your doing better. This disease sucks and works it's ass off to suck the life right out of us. I am at the beginning of this crap and I am already tired of it. I can't imagine how you feel right now. Unfortunately I will at some point. Know you are not alone, and know that I am just as pissed off about this disease. I read your profile and that is exactly how I feel. Who gives a shit about a cure, what about what is causing it? It seems like no one is as outraged that it is killing off more and more younger women.

  8. Rachel,
    It just sucks. And yes, we want to hear it because you need to say it. I am all for optimism and hope in hard times, but truth is more important for you, for everyone who faces breast cancer. Our experiences hopefully open the eyes of those who don't understand - and maybe,just maybe those people will move one inch closer to working to end this wretched disease. You are in my thoughts.

  9. Your truth is how so many of us our living. Nothing I say here can make things better for you but please know that hearing your reality makes my reality sound normal. I don't know if that makes sense but it gives me a strange sense of feeling that I am not alone. I wish you only the best and I know that after I "wallow" or as I prefer to "stick my head in the sand" for sometimes weeks, I finally get sick of myself and remember this:

    Perseverance is the hard work you do after you get tired of doing the hard work you already did.

    Thank you for sharing. You are so special.

  10. We want to hear from you, period, my friend. Whatever it is, I always, always want to know the truth. No gloss, no need to ride the pink pony. Over the past few weeks you have taken a beating, physically, mentally and spiritually.

    With every word you write you are educating men and women about the realities of metastatic breast cancer. People need to know.

    Holding you in love and light,

  11. Rachel,

    While this piece makes me sad beyond words, I don't want you ever to feel like you have to protect me or anyone else from your truth. This is what friends are for -- to help each other. I don't want to hear any watered down story of your life, I want to hear the full truth and every ounce of it. I want to help you carry this, whatever the hell that even means. You are not alone, my dear. Never, ever. Probably not even when you want to be.



  12. Rachel,
    I'm so sorry you're going through this, and Beloved too. You're right, it's not fair and it sucks beyond words. I don't know what else to say other than I'm thinking of you and sending you a big hug. We're here for you. XOX

  13. Its times like these the blogosphere seems such a small and safe place to be. Thank you for inviting me in to your hearts and minds and allowing me to speak my truth, and wallow free of judgement. It's a relief to be able to do so right now. Thank you all for such caring and heartfelt comments. Rachel xxxxx

  14. Oh, God, girl! You can say anything here. We won't turn a blind eye or a deaf ear. I don't know what I'd do if I were in your place. To say you give us strength is an understatement. Scream, cry, pound your fists. We're pounding with you although we can't begin to pound with the same fear and devastation.

    I believe in God. I know He doesn't always answer prayers like we want him to, but I have you in my prayers.


  15. Rachel, I hate that this is your reality. Cancer sucks and we need your voice to tell it like it is. I want hear everything you have to say and I want to hold your hand while you say it. You are not alone, Sherpa.

  16. It IS important to for others to hear this, and know this. And it validates those of us feeling similarly when we hear that we are not the only one feeling it. Thank you.

    You're in my thoughts and prayers.

  17. What they all said... and more. I, too, am willing to listen, good or bad. Do what you have to, we will give you a hand up when you're done. And then a million hugs full of love. You are on my daily prayer list, dear heart. ♥

    x's and o's

  18. Rachel,

    This post is so important. Cancer is a disease that is brutally hard. It's not fair to patients or family members to deny this. You deserve the right to express your experience, maybe especially the dark, lonely, hard parts of your experience. Speaking that truth is part of what allows others to feel more entitled to their own truth.

    With warmth and good thoughts!

  19. I wish I had answers and solutions for you, but am offering with the others my support and virtual hugs - and sending lots of positive thoughts and prayers your way.

  20. I hated going from feeling like I had a handle on my treatment to having that all change is 2 days. I think by acting like i am in denial keeps those around me from worrying. DH & I have been telling family & friends slowly of new tumors and the changes in radiation. I think I could face it all until my losing use of right arm and hand. Then the lack of coordinaton. Now we are going to add radiation to the brain to the to tumors that have reoccured in the chest.

    Today I finally went into anger mode. I had my 7 year old Grand-daughter and 4 year old Grandson ask me why i wasn't able to color with them. Damn you for having such an impact on those I want to protect.

  21. Dear Rachel --

    Thank you for having the courage, the balls, the what ever it is that you have in spades to write like you do and tell your story--especially during this dark time. You are an inspiration. I don't think anyone can read your words and not be touched by your spirit. I disagree when you say nobody wants to hear this. WE DO. And for those out there who may not want to hear this, well, tough luck, this is life, the Real Deal... everyone has to wake up to it at some point.

    When you ask: "And so now the question becomes as to how long it's going to take me to bounce back mentally from this latest catastrophe and assault to my confidence," it will take how ever long it takes and will probably happen in fits and starts. I think you are already headed in that direction because you're expressing yourself and letting your truth come out. Also, you're reaching out to us and that is such a life- and soul-affirming thing to do. I think that the fact you're wondering about it means you're already on your way there. Just don't rush or pressure yourself. I'm sure you are grieving, and that's a process, as you know.

    I feel for you, you are suffering terribly and there's no sugarcoating it. Let it rip, as you are already doing. I'm glad you have a Beloved.

    Sending love, support and hugs out to you,
    Liza, aka @itsthebunk

    PS: when I got to the end of your post and saw your last sentence and the video-still I burst out laughing. It was so completely unexpected!--your sense of humor hasn't gone anywhere!

  22. Rach, Your post makes me so very sad. But, I am also glad that you are sharing your truth like this - people do want and *need* to hear this, the reality of breast cancer.
    I too am glad you have a beloved and your beloved dog as well.
    You are 41 years old, this is not the life you deserve. None of this, any of this, is fair.
    Best to you, Sarah

  23. Everything that everyone else said, and more.
    You happen to be an amazing teacher of what life is like with metastic cancer. Please, never hold back w/your feelings. God knows I've learned so much from you by reading your writings, as I'm certain so have others.

    Sending a ton of hugs and support to you,

  24. Dearest Rachel,

    When I first found The Cancer Culture Chronicles I thought I came across another social scientist like me, a person who was seeing from a bird's eye view and connecting dots that are often invisible. She seemed to be another activist who is feisty, smart, and full of clarity, someone who wanted to know the evidence and was ready to use it to change the status quo. She seemed like an honest woman who was given a raw deal but was still willing to contemplate it, speak it, share it, and use it for something worthwhile. She struggled, persisted, laughed, cried, and screamed like a banshee even as she analyzed pink culture, industry, and cancer reality with such lucidity and concreteness that I often found myself reading and re-reading every word.

    Now when I read TCCC, I'm convinced more than ever I was right about you, Rachel. Even if you're not a social scientist by formal training, an activist by choice, or a public writer by nature, you have become these things out of necessity. Your honesty, wit, perseverance, systematic thinking, and inspired writing are just part of who you are.

    I'm honored to be in this with you, soul sister, even though it makes me all the more saddened and infuriated about the state of affairs, and the hand you've been dealt.

    -- Gayle

  25. Thank you for writing this and speaking your truth and putting yourself out there like this. Your story must be told and you ate the only one who can tell it. Wallow all you need to, we all need to sometimes. We are here for you in the mud, or in the sun or the rain or to ride the pink unicorns. Thinking of you with love, Debbie

  26. Rachel,

    Thank you for sharing your feelings. For me, cancer is a very lonely disease. I can be in a room full of people, yet feel there is not another person there. I have a wonderful support group of family and friends, but they don't weant to hear about the reality of mets. They want to believe that I'll be just fine. I guess all we can do is take one day at a time and keep the devil at bay for as long as we can.

    Deb in Massachusetts

  27. Rachel,

    You have every right to feel the way you do. You've been dealt a horrible hand. And the positive thinkers who want to pretty up breast cancer may not want to hear about the ugly realities.

    But trust me, there are plenty of us who want to listen. I faithfully read your blogs because you tell the truth about this devastating disease. And because I care deeply about you. Keep feeling safe enough to say what you need to say on the blogosphere.

    We respect you greatly.


  28. Rachel,

    I just joined this blogger community and I am angry with you, FOR you. it's SO very easy for people to want to "cheer you on" when they are in the cheap seats. Scream and rant and know that you have support. The kind of support you want and need.... and it's right here.

    I am so sorry for what you are going through.


  29. I just HATE that you are having to deal with this crap. Most of the time I am relatively optimistic about my situation, but lately (after only 1.5 years) I am for the 4th or 5th time now getting really freaking sick and tired of all of this cancer crap and all of the stuff that comes along with it.
    YOU SAY IT! Just rant and rave and get it out! Scream and pound your fist into a pillow and cry if you want to...
    This place that cancer has taken us to, you know it, we all is hell. There is nothing that could be worse, no trauma as severe as what we have to deal with every single day of our lives. Not only do we get to deal with this crap, but we also get to watch it destroy or at the very least eat away at any relationship we have with a significant other. When I am not wondering how much longer I will live or if I have eaten enough, or if I am getting too thin, or if I will feel good enough to do something, or if my cancer is spreading, or if my skin is turning yellow, or... I am wondering how much my boyfriend really secretly resents having to take care of "cancer girl" and how his family is probably wondering why he is with me in the first place....wonderful what cancer does
    HONESTY is always the best policy and it is so refreshing to hear.
    I agree with everyone else, I will always be here to listen and encourage the truth, and for what it is worth am sending you so much love and light and always health.

  30. And your incredible comments keep coming in on this post. It seems I have struck a nerve, but for me it's just the truth of this daily reality called metastatic breast cancer. Through this blog I know I'm not alone in going through this and having these feelings. Thank you for allowing me the freedom of thought and space to express myself here. Xxxx

  31. Dear Rachel,
    I love and admire you so much. I ache with you daily although I am without Cancer. I have worked with cancer patients so long and I want to be their listening ear, their friend; someone they can talk to. Your stories help me to be able to do this. I personally don't suffer your pain; but I mentally suffer with you. I HATE this disease and what it does to individuals. I want to be their for you and your fellow bloggers to love all of you and support you as I can. I never want you to feel alone. You have so many people that LOVE YOU and your sweety. Gail

  32. I love you Rachel. I. love. you.


  33. You are in my mind and in my prayers daily! With love, Maria xxx

  34. Rachel, I love reading your posts. People who can't hear your truth shouldn't be talking to or working with people who have cancer. You have every right to feel anger, grief, disappointment, worry -- as well as any feelings of hopefulness, happiness or peace you may find. What struck me about your comment "nobody wants to hear any of this" is that you are not responsible for protecting other people from what you feel or who you are. Women (and yes! Even women with breast cancer!) are allowed to be angry and to express that anger.

  35. Rachel - no words, no platitudes, no rah-rah encouraging you to bitch, rant, scream and cry. You do not need anyone's permission or validation to feel and express. You have been there for me this past year on my journey down th rabbit-hole. I am here. And I hear you.

    TC (

  36. no one knows what you are going through, even if they have mbc. You are at a place in your journey that no one else is. I couldn't begin to say I know what your are going through. Though I know this disease will knock me down from time to time. All I hope to convey to you is that I want to hear it, and keep hearing it. Even when you are yelling and railing at the world, it is an important job you do preaching the truth of the vicious and awful effects of this disease. Thank you for the knowledge you share. I would rather know the truth than be doused in fluffy pink unicorns. Unicorns aren't real, it is nice to know that YOU are real. Even with the cold hard truth of what you are going through.

  37. I have written and re-written this comment, but just can't find the appropriate words to say what is in my heart...apart from SHEEET!

    You are right, many of us have no idea what you are going through but we care about you deeply and and are grateful you are still writing is as it is. You are the one true voice in an ocean of platitudes. I wish I could find better words to say what I feel reading this..but sometimes there are no words...

  38. One thing about blogging. There are some fantastic people out there that really do care. We don't care if you wallow, cry or scream. You are having a tough time and need to vent somewhere.

    I hope things start looking up for you. good luck and bless you.

  39. It's definitely ok to wallow. Go ahead and vent to us. We understand. We're privileged that you can be honest with us.


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