Saturday, May 1, 2010

I Alone, We Together

Cancer can be an exceedingly lonely disease, but simultaneously gives the opportunity to forge a closeness with your self that you never fathomed possible. No matter how much I try to put into words, into actions, to express what is happening inside my body, my head, my heart, it does not do it justice. No one else can ever truly understand what it is like to live with a sea of aggressively mutating cells in your body that have the power to eat you alive. A truly organic process happening inside you that you did not ask for, did not deserve. Not a doctor. Not a nurse. Not your spouse or family. Not the closest friend. Not even other cancer patients because everyone's journey is so wildly different.

I can't pretend to know what it's like for a dear friend of ours currently participating in a clinical trial to treat her breast cancer while at the same time raising two very small children. I can't pretend to know what the man across from my chemo pod needs at that moment when his eyes are glazed and his head is bowed. Every single person facing this disease, or watching someone close to them face it, handles the journey differently. It's finding a deep sense of empathy for each other that holds us all together. This is what's so amazing about the human race. Even though we can't pretend to understand the intricacies of the battles that each of us are facing, we can step up and be there for one another using our own experiences with hurt, pain, fear to know what each of us needs ... more than we may know ourselves. I have been so in awe of this deep and sincere love and caring displayed toward me.

You could take two seemingly same people - both young, strong, otherwise healthy, intelligent, determined and give us the exact diagnosis, prognosis, drugs, diet, everything, and I have no doubt that our reactions and outcomes would be markedly different. Because a certain chemo drug left no side effects for one person has no bearing on what it will do to the next, for whom it may leave beaten and broken from its wrath. Because one person can't tolerate the pain of the bone marrow stimulating shots does not mean they are any weaker than the one who can. This is because no one is the same. We are all complete individuals – structurally, molecularly, emotionally.

This is where the loneliness sets in. But it's also where I've discovered my most prized possession – my self – and that helps me to realize that I am truly never alone. This is not to discount the tremendous benefit and necessity that a strong support system brings. It's that support system that keeps me standing up so that I am capable of discovering what I am capable of. Without friends, family, strangers around me helping me to see what I'm accomplishing every day and illustrating how much having me in their life means to them, it would be easy to give up. Otherwise, it's only me in my lonely cancer world. It's this support group that helps me to realize my value in the world. Without them, it would be easy to listlessly go through the motions and just wallow in misery. With them, I've got a fire to fight.

But as painful as it is for the caregivers to know, their help can only go so far. Ultimately, it is up to me to decide to go the distance and to determine the path I am going to take to get there. Ultimately, it is me that has to grit and breathe through the bone pain, the straining tissues, the mouth sores. Only I can get myself on my feet every single day – some days which seem against all odds – and fight off the urges to give up. Only I can figure out who I am, what I need, how to get it, where to be, and who I need to surround myself with at that moment to get through it. This is at once overwhelmingly scary and incredibly empowering.

It is me who has to get stuck with a needle again, and again, and again. It is me that has to lie there in complete stillness in a narrow tunnel while cameras whir around eagerly searching for signs of cancer activity while I can do nothing but wait in agony for the results. It is me who has to watch those that love me try to make sense of something that makes no sense at all; painfully watching as I know how much it hurts them to see me suffer. I wish I could make it go away for them. I tell them that I'm going to be okay, although I'm dying inside worried that in fact, I'm not. Most often that's harder than the surgeries, the nausea, the unending fatigue.

But that's when the self comes in and building that relationship is vitally important. It took me a long time to realize what people meant when they said "this is the time to be selfish" or "this is the time to ask for help". And asking for help doesn't just mean from other people but also asking myself. When I am scared as hell and when I literally don't think I can handle being tethered to one more IV pole, I can tell myself that and we can talk through it. I can allow myself to be scared and allow myself to be honest and not worry about the ramifications. What I hear back has impressed me beyond measure. Sometimes it's the mind that kicks in as the strongest. Sometimes it's the body. Sometimes it's the heart. Sometimes it's just shear will that comes from places unknown, but it's always one of these parts of me that picks up the pieces and holds the rest of us gently until we've all bounced back and I am once again whole.


  1. Well said, and thank you for expressing it so clearly.

    I grew up just on the other side of the mountain from you so I know the places you talk about...........

  2. Beautifully said, Karin.

  3. Dear Karin,
    I am going to start reading your blog regularly. I finished ABVD in December and I guess it didn't work! Doc wants me to do the same things you did: ICE, BEAM, SCT. I am going to start in July because I need a couple of months to get my plans together for work and home care. I am so scared of being in the hospital and being sick and unable to work and feel normal with friends/dating (unfort. I don't have a partner or family where I live), but reading your blog has made me feel better. I know that everyone reacts differently but I do feel like I know more about what to expect and even the pictures were helpful. Thank you so much for writing this blog, please don't stop! When you finally write that your life is back to normal, that will be the hope I need.
    Tiffany Williams, 27, Washington DC (dx stage 4 hodgkins in july 09)

  4. I cannot wait for you to be like me--cautiously optimistic but wondering---but not as often---and when you here those words "you are cured"--which I sort of heard but really one more year--we will celebrate over and over again---you have the right to feel anything you want and you are right that noone knows it but you. Are there any more t-shirts? I want one as I had to miss Love you xoxo

  5. Keep forgetting to write my name BEV aka BEVI

  6. Tiffany, please e-mail me at if you'd like to connect further. I'm so sorry to hear that you are going through this same adventure but know that you WILL get through it. I will keep writing and would be happy to share further some tips and coping mechanisms I've found to help me get through if you send me your contact info. All my best to you! As tough as it is to be going through this at our age, we've got youth on our side to carry us through!

  7. karin. i applaud your honesty. it's refreshing and necessary