Pinktober Guest Post: By me!

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Today’s post is a slightly modified version of a post I wrote at the beginning of this year. If you want to know a little more about me, please take click the link. If you want to make me smile (she solicited shamelessly) please follow this blog and like my Facebook page.

30 percentI live in Israel. According to the Israeli Ministry of Health, about one in eight women in this country will be diagnosed with breast cancer during their lives. Medical sources agree that although only about 6% of breast cancer is metastatic at first diagnosis, close to thirty percent of all breast cancers, including those detected early, will metastasize.

Thirty percent.

My breast cancer was self-detected and them confirmed on my first ever mammography. There was already lymph node involvement and the question of distant mets was raised and dismissed. The primary tumor was about as long as my thumb. All the factors together put the staging at IIB or IIIA. Within a year, metastasis was diagnosed – in my case, to the spine.

Practically speaking, this means that I will never be healthy again. While people can live for several years with bone mets (the most common site of breast cancer metastasis), life will never be the same. Life is never the same for anyone who has lived through a “cancer event”, but for those of us with metastatic cancer it means living with increasingly severe pain and the side effects of pain relieving drugs, with increasing fatigue and the attendant frustration. It means living from treatment to treatment, and a narrowing of one’s sphere of activity and social circle. It means coming to terms with one’s mortality in a very immediate way, while helping loved ones do the same.

These are some of the commonalities among people living with metastatic cancer. But we are still individuals right up to the end. We each have our own personality, coping techniques, level of insight, hobbies, loves, fears. We still have preferences for how to live our remaining time. Some of us strive for continuous positive thinking, some become social or politically active. Some of us reach out to others, and some prefer to be alone. Some are indescribably sad; others seethe with rage. Many of us are all of these things at different times.

I wrote the original version of this post on an iPad while resting in bed. The weather was nice and I wanted to go outside to try to repair some of the ravages that recent storms visited on my garden, but I was exhausted after ten minutes. Some days I don’t even get dressed because I know I’ll be spending most of the day in bed, but on other days I call a friend who takes me on short walks in the neighborhood. Metastatic cancer is helping me learn to be more flexible and to adjust my expectations.

I can’t say I am exactly the same woman I was before the cancer, but I don’t think I’ve changed all that much in some ways. I still prefer to avoid confrontation, and I still use humor as my primary defense mechanism. I still love poetry and novels and movies about people and feelings. I am still fascinated by the “people side” of history,  am still more of a process person than a goal-oriented one, and I am still competitive. (Lexulous, anyone?)

While I was in bed writing this post back in January, the man who helped me by cleaning my house accidentally bumped my bed and the jarring caused me pain. “I hate being like this,” I found myself yelling and then I felt ashamed of myself for “breaking down” in front of him.

He looked at me with kindness and a little smile. “I know,” he said in a broken combination of Hebrew and English. (He is Hungarian and speaks neither language easily.) “For you, this is very difficult. You are a very strong person,” he made a fist. Then he held his arms out in front of him, palms up, and swept them wide open. “And you love life, living,” he said.  “It is very hard for you.”

Yes and yes.

Addendum, October 2013. When I wrote this post, I was still refusing narcotic pain relief. Ten months later, I am taking it–not as often as my doctor would like, but more often than I want to. Almost daily now, in fact, even though I’m pretty good at dealing with pain due to many injuries in childhood and multiple orthopedic surgeries as an adult.

In the intervening months I’ve had to stop working in my primary profession. I’m grateful that I have a second skill that allows me to work at home, as I’m able. My sweet Hungarian helper had to quit because of back trouble, but we’re still in touch. I have a wonderful new helper now.

I’m going through a hard patch right now, physically and emotionally, due to cancer and other things. I’m very grateful that I have a profound knowledge that the only constant in life is change.

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15 Responses

  1. I admire your strength. For five years, my breast cancer has been contained within the 70% group of survivors. Recently, I acknowledged and accepted the probability of a transition to the 30%. Reading your blogposts and similar blogposts opened my eyes and is preparing me to accept metastatic cancer, when and if I am diagnosed. Thanks for sharing what my health care providers and breast cancer support groups have failed to say.

    • Knot Telling says:

      Thank you for this thoughtful comment. It’s possible you’ll join this club of the 30%, but remember, 70% chance that you won’t! You’re awareness of mets can now be a wonderful tool for educating others.

      I hope you’ll stick around and keep reading and commenting on the posts. Thank you.

  2. Shari Larsen says:

    I’m sorry that you had to leave the other support group I first got to know you in, but with what went on yesterday, I totally understand. I don’t feel any of it was your fault. I am glad that I found your blog, because I am very interested in what you have to say on this topic.

    I have been living with stage IV, bone mets, since 2007; I can relate to a lot of your thoughts and feelings you wrote about in your blog.

    • Knot Telling says:

      Thanks very much, Shari. I’m looking forward to getting to know you better here!

      There are so many things that bind us sisters-in-mets together. I’m happy if I can verbalize some of it.

      Thanks again.

  3. Maxine D says:

    Also that another constant is our Lord. What a journey! I admire your grace in it.
    And I must admit to complaining this morning about the low level of pain I am currently experiencing, and I am well aware that it can only get better…. wimp that I am.
    Prayers and Blessings

    • Knot Telling says:

      Complain away, Maxine! Sometimes it helps… and there are plenty of biblical examples. As long as we don’t get stuck in it, I see no reason not acknowledge that life can be really hard sometimes!

      I always appreciate your comments. Thank you so much!

  4. I am sorry that things are so hard right now, harder than usual. It can be exhausting being strong. Yet, I wish you strength.

  5. dear KT,

    you tell your story with such candor and grace. and I really appreciated that you included the part about essentially being the same person you have always been, but have had to adapt to the more debilitating aspects of your MBC. I think so much of the time when others see us struggle, we long to cry out – I may be in pain, I may not be able to do things the same way – BUT I AM STILL THE SAME ME INSIDE. I feel that way, and maybe you do, too, when others are reluctant to talk about their troubles, or even the very happy things happening in their lives. I find that very sad because with people we love, we still want to be there for them and show compassion, or share in whatever happiness they are experiencing.

    you write so beautifully, KT, and I hope it has given you a respite and some relief to share your story. I am sorry you are going through a rough patch, but please know you are surrounded and enfolded in the arms and hearts of so many of our sisters and brothers.

    much love and light, XOXOXOX,

  6. Dear Knots, It is an honour to learn more about you. I understand your reluctance to take narcotics, and also how hard it is to be the strong patient. “The only constant in life is change.” We are not alone, it helps. Much love…

  7. Susan says:

    KT I love that you let me in to your world. Of course the Hungarian understood exactly where you were coming from in his broken English and Hebrew. I hope you have the right pain specialist prescribing pain medication that doesn’t impair your thinking and gets rid of your pain. It kills me thinking that you have to have any pain. There is so much pressure with mets. I hate mets. I’m sorry about the rough patch. You are surrounded by people that care and want to shine all the light and love they can at you.
    Cyberhugs and Shalom With Love

  8. Found you in among the guest posts and even that was over a month old. I can only assume that you don’t come here anymore. You were such a huge help to me while I was caring for my sister in law, and I am glad to see that your blog is still active even without your constant presence here, as I am sure you will go on being a source of comfort and inspiration to many. God Bless you and keep you. Sending Love and prayers, Shannon

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