#Stage4Lifer: How I Live With Stage 4 Breast Cancer

January 2, 2017
January 2, 2017

There are many emotional and physical side effects of metastatic breast cancer and its treatmentsRead Judy Erdahl's #Stage4Lifer post below about how she lives each day with this diagnosis. (And follow Judy today, Wednesday, September 29, as she takes over our Instagram account, @livingbeyondbc!)

I have an odd life.  I live with metastatic breast cancer (MBC). A disease, which the American Cancer Society states, has a five-year survival rate. I’ve never followed the norm however, and I’ve been living with MBC for 5 ½ years.

I was originally diagnosed with stage Ia invasive lobular breast cancer when I was 43. I went in for my 5-year check up, sure that I had followed all the rules and would now be free from breast cancer forever.  I’d already survived another cancer scare in my early 30s. I could certainly do this. Apparently, I must be good at “doing cancer” because cancer was not done with me. Breast cancer cells had circulated through my blood stream and taken up residence in my bones. I now had metastatic breast cancer.

People ask me all the time how I live with this disease. There is constant fear, uncertainty and grief, and those are just the emotional side effects. The physical toll is indescribable.

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This technological world we live in is amazing in the connections and support it allows us to find. But, when you connect with others who have MBC they die. A lot. And it’s overwhelmingly sad.  Yet, we keep connecting with each other. We’re brave that way. We open our hearts and share the fear, the pain, the almost unspeakable worries and questions that come with holding hands with our mortality:

  •  How do we tell the ones who love us yet more bad news when a treatment fails or a scan shows progression?
  • What do we tell our children?  How much can and should they know? How do we leave a legacy that matters?
  • How can we handle the friends and family who leave because loving and caring for someone with MBC is a long, tough, and emotionally devastating haul?
  • How do we live with the emotional maelstrom that MBC brings?

I can only answer how I live with it. There is no right way. You just have to find what works for you and on some days nothing will.

I look at living with MBC as being similar to practicing yoga.  Tree pose is something most people are familiar with.  It’s all about balance and non-judgement. You can’t compare how you’re doing it with how someone else is. You find what works for you. And when you do stumble, and you will; let go of judging yourself. Breathe and try again.

It’s also about staying present. The days I live in the past I find myself depressed.  I should have done this or that. What if I had had less stress in my life?  Would cancer still have come?  Then there are the days of anxiety and panic about the future.  How bad will this get?  How debilitating will this disease ultimately become? Will I still be able to live with some dignity or will MBC strip it all from me?  What if I can’t handle the pain?  So much fear and anxiety.  I’ve learned the safest place to live is right in the present. At this moment, and with this breath, I’m ok.  I’m handing the pain, I’m living, and I’m ok.

The other thing I try is gratitude.  I am not saying that I’m thankful for cancer. Cancer sucks. I’m not saying that a positive attitude is going to make everything better.  Happy, positive people die just the same as people who aren’t positive. I am saying that there is much in my life I’ve lost control over, but the one thing I do still control is my attitude. I make a choice to find things to be grateful for.  It helps me cope.

Some days I am struggling to find anything to be thankful for because basically, it all stinks.  I look in the mirror and wonder where on earth I’ve gone and who is the person looking back?  My hair has come and gone a few times, my breasts are different, my skin is different, I gain weight, I loose weight, and on and on.

I have no consistency with my body or even my day to day life most of the time.  Cancer ends up controlling more then I’d like, no matter how hard I try to keep in control. So, the one thing I can choose is my attitude and I’ve chosen to be grateful.

This isn’t to say that some days I don’t find myself wallowing in self-pity, or anger or frustration.  I’m human.  I feel it all and it’s all valid. But I’ve learned that when I’m at my lowest and darkest if I can find one tiny thing to be grateful for,  it becomes the thread of hope that pulls me back to finding balance.

You've read Judy's story. Share yours with #Stage4Lifer on Twitter and Instagram.

See Judy's Instagram Takeover.


 Judy Erdahl has been living with cancer for over 20 years. Judy spent much of her adult life serving families as a licensed parent educator. When Judy’s third round with cancer forced her to retire she turned her energies towards writing and educating others about the real world of stage IV breast cancer.  She has shared her story with audiences large and small and is a passionate advocate of metastatic breast cancer research and education. Judy is a co-founder of “Team Judy” which raises money to support metastatic breast cancer research at the Masonic Cancer Center, University of Minnesota. She is a Hear My Voice Advocate for Living Beyond Breast Cancer and a breast cancer research reviewer for the Department of Defense Medical Research Program. (CDMRP) Judy shares her story of living with metastatic disease to encourage others to learn to live each day with gratitude, compassion and hope.  You can find her at PinkisComplicated.com

Comments

So happy to find this site. Diagnosed 4 1/2 years ago. Always need encouraging words

I've never blogged or written about my disease, but here goes. I was first diagnosed at 42, stage ll, estrogen receptive breast cancer. A mastectomy, chemo, radiation followed. In the big picture, it was only a year out of my life. 13 years later, after being told I had adult onset asthma, and my pain as muscular, I made an appointment with a pulmonologist. At the end of the day, my husband and I were told the cancer was back. Again with the chemo to back it down and am now doing hormone therapy. It had spread to my right lung and lymph system. It's been 3 years and the shots are still working. My dr felt he could get me 25 years. I was ok with that, since most in my family hadnt lived past 70. Even with MBC, I'd live longer than I thought . Most days are good, some symptoms around my monthly shot, but better than chemo. It's been hard accepting my physical limitations, lowered immune system, not as much energy. But that being said, I'm thankful to still be here. I've lost friends, often wondered why I'm still here and they aren't. Only God knows the answer to that. He gives me the strength to continue on. Often I remind myself that everyone deals with something, mine just has a name that scares you. LIfe is still good, there is family to love and seasons to enjoy. There are no guarantees for any of us. I appreciate having had the opportunity to clear up any misunderstandings. The chance to say "I love you" and hug someone, more than I might have before. Not to be bothered by things that would have held my attention before. My husband and I enjoy our life and don't take each other for granted. Being thankful for one day at a time.

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