Welcome to The Club

When you lose a mother, you become a member of the Motherless Daughters Club, a club no one wants to belong to and yet here we are. On a journey, coping with our loss, striving to either create or maintain our identity. A life-long grief journey. I am a card-carrying member of this club. My mother has been gone for 50+ years and I still miss her presence. In fact, I lead the Motherless Daughters Ministry and strive to help motherless daughters all over the world.

But now, I am a member of a different club. Last spring, I heard the words that no one ever wants to hear, “You have breast cancer.”  As the doctor said those words as gently as possible, what I heard was, “Welcome to the Club!  Congratulations!  You now join women all over the world struggling with this burden.”

NO!  That can’t be true. Granted I have family history of breast cancer (my mother died when I was 15 of aggressive inflammatory breast cancer), BUT I had always told myself I would not get cancer. I took excellent preventive and proactive care of myself. How could this be happening to me?

I undertook my investigation into the options and choices for my particular type of cancer with the same drive as I would take on a research project. I read everything I could get my hands on. I talked with others. I searched my pros and cons for each choice. I interviewed many physicians. I explored the many choices for breast reconstruction. I finally made my decision. Double mastectomy with DIEP flap reconstruction. “The girls” had to go. It was just the logical choice to make.

OK, I made my decision. When I presented my choice to my doctor, she told me that the DIEP Flap reconstruction was not possible. WHAT do you mean not possible? All my research said it was.  What she was really telling me is that she would not do the procedure in the way I had wanted. In fact, she dismissed me as a patient. I found myself spiraling back to the feelings of abandonment I had felt many years ago. “Don’t go. I need you. WAIT! WAIT! WHAT NOW?”

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“THERE MUST BE ANOTHER WAY”

Mustering up hidden courage from the back pages of my new cancer book, I thanked my ex-breast surgeon, hung up, and thought, “Well what now? You have cancer. You need to have it removed.  You have just lost the breast surgeon who was willing to help you. What have you done?” It was in that moment that I heard my mother’s voice saying words that I heard over and over in my youth.  “There is always another way.”  Could that really be her voice after all these years? Thanks, Mom!

Changing breast surgeons was exactly what I needed to do. Meeting my new surgeon felt like coming home. The comfort was obvious from the beginning of our relationship. Then I met my new plastic surgeon. I fell in love with her immediately. These were definitely the women I needed to be connected with. Little did I know how connected all of these women would be to me.

My surgery took place a few months later. Not easy, any way you look at it. I spent the next months in a drug-induced euphoria healing from my wounds. I am a planner and an organizer. My recovery was going as I had planned. Finding out that my nodes were negative and the rest of the tissue was negative heightened my sense of euphoria. I was on my way. This was going as expected.

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THE DISAPPOINTMENTS

I never knew that there was so much emotional similarity between mother loss and cancer. Feelings of shock, shame, guilt, and the silent secret emotions not shared. Some people coming along side of you, walking with you. Others quickly changing the subject to trivialities to ease their own discomfort. You just want to shout, “There is an elephant in the room. Doesn’t anybody see it?”

But then there are the ones who have already buried you. They are silent. You no longer exist to them. They don’t acknowledge anything. They are absent. My rational self excuses their behavior as their own discomfort. My irrational self, hurts and cries about their rejection.

I had this experience with more than one person. They were hidden and silent. Didn’t they even care enough to send me a card? I guess not. It hurts when you are hurting and their absence seems to say, “I don’t care.”  “You are not important to me.”  “You are invisible.”

One woman who had distanced herself from the ministry never showed up. Professing to be my close friend was a lie, but now the truth hurt even more.

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THE GIFTS

On the other side, there were some surprising and unexpected gifts. The unconditional love and support of my husband and daughter. Telephone calls from past exchange students expressing their love. A homemade mastectomy recovery pillow from a friend became my teddy bear. I refused to sleep without it. The many cards, food, caring, and recognition from friends. So, similar to a motherless daughter being comforted when someone just recognizes the pain of your loss.

I have to tell you about an unexpected blessing. A little back story first. My mother died of breast cancer when I was 15, leaving my 17-year-old brother and me without parents (my father had left us when I was 10).  That was in the 60’s when treatment consisted of surgical removal and radiation. The time that seemed to be quick, from diagnosis to surgery to death, had really started much earlier. She had been treated for mastitis (inflammation of the breast) for over a year before the surgery. As the daughter, I had gone with her to doctor’s appointments many times.

Back to the present. I have been rebuilding a relationship with my brother. We had been estranged for many years, but that’s another story. This relationship was budding, and I was ecstatic knowing my brother and his wife. I called him to share my diagnosis and upcoming surgery. His response was caring and thankful but startled me when he said, “Well at least you are taking care of yourself.  Mom never did.”  WHAT?  I had to process his response and finally realized he did not know.

On a later call, I told him my memory was different than his about our mother, would he tell me about his?  He had been told by another close family member, “She did not take care of herself.  She knew she had a problem and didn’t do anything about it. You were not important enough.” WHAT? I told him what I knew about the start and progression that led to her death. He was speechless but soon asked, “Why didn’t I know any of this?” My only response was that because I was the daughter. I had been with her. He was blown away with this new information.

Can you imagine the hurt, anger, and disappointments he has experienced all these years believing he was not good enough? His reality was that his own mother did not love him enough to want to live. I understand now that God gave me this opportunity to give him another view of his life story.

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ANOTHER GIFT FOR A MOTHERLESS DAUGHTER

God also placed healers in my cancer journey who understood what is was like to be motherless.  Both my breast surgeon and my plastic reconstructive surgeon experienced mother loss at a young age.

My pre-operative visit with my reconstructive surgeon was shortly after the 2016 Journey Retreat, in fact the next day to be specific. I did not share about my upcoming surgery at the retreat, instead focusing on the women God had brought to the retreat. I was flying high when I floated into Dr. C’s office. She asked if I was always this happy to have surgery? I told her about the ministry and the weekend retreat. She said, “Me too. I lost my mother when I was 12 from breast cancer.”

My breast surgeon also experienced mother loss when she was a teenager. God had given me two motherless daughters to care for me!

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WHERE AM I NOW? 

I begin this section with reminding myself that I took the ONE WORD Challenge a few years ago. My word for 2017 is Transparency. So here it goes. Be gentle with me.

It’s been seven months. I am healing nicely from the outside. Inside is a different story. The inside is an emotional wreck. All my great research in preparing for the surgery did not mention emotional impact. No one said how difficult the emotional side of having cancer would be. I cry for no reason.  I feel overwhelmed undertaking even the slightest task from my pre-cancer life. I can do it but it takes every ounce of energy and focus that I have.

I ask myself, “Do you want to wallow in your tears?” No. Then put on your big girl panties and do something about it.  NOW I am getting back to me. The organizer. The planner.

Yikes, that means telling others. Can I do this? Can I be transparent? Others look to me for my leadership, will I seem weak?  How can I ask others to share and be transparent if I am not? I have to walk the talk if there is to be a trust relationship with the women in the Motherless Daughters Ministry. OK here it goes. I decide to send out a HELP letter. I do. Most are gentle with me. There are some disappointments, and there are some wonderful gifts.

I am suffering from depression. Realizing that I had not slept well in 6 months, I make a plan with my doctor. Seeking out counseling was my next step. After discussion with the Psychologist and more research, I find I am suffering from Cancer Survivor Syndrome. This is when a woman is finished with her treatment. She is cancer free. This is similar to PTSD. Yes, it is real. Why do I find this comforting? I have a label. Maybe because I feel validated? This is exactly what has happened to me. I researched and organized my treatment, executed my plan, then I emotionally fell apart.

With the syndrome comes the emotional duo of guilt and shame. Everyone tells me how lucky I am to be cancer free. I should be grateful, which I really am that I am cancer free, but I am angry.  Angry that my life has changed. Angry. Angry. Angry. I am so angry that I have had cancer. It has been my silent secret that I am sure no one would understand. But I am wrong.

Now here is where the shame comes in. My body is disfigured. Every day I look at myself I am reminded. I see “boobs” on TV and in magazines, but when I look at myself I see my “Foobs” (fake boobs). I should be grateful I have them. Should, should, should. I have no feeling in my chest. I cannot feel a hug. My psychologist is helping me develop new ways and senses to feel what I have lost. Others have encouraged me that it will take a full year to rid my body of the toxic effects of anesthesia. I am gaining more insight into the lack of patience I have with this whole healing process.

Wait! I have been through this before. So many similarities. The scars of mother loss are invisible to the outside, but they are always there inside. The pain has minimized over the years. It took a long time. So too, these scars, the emotions and grief of this loss, shall also pass.

Somewhere in all of this, there is a sense of victory. I have a story to share. Someone out there will read this and gain comfort. For YOU, I give praise and thanks. You are the reason I was able to write about this.  Let me know who you are. Let me know if I helped you in any way.

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If you would like to connect with Mary Ellen, she would love to hear from you in the comments section below or through e-mail.