Stories From Wildfire: The Hard Lessons – Learning to Accept Help

I sat numbly on the couch in our living room as my one-year-old son napped in his crib. I was waiting. The waiting game of learning test results to see if the hard lump in my breast was either a clogged milk duct as the first radiologist promised only two months ago or a crazy cell that decided to snap and wreck havoc on my life.

It cannot be cancer, this does not happen to young mothers in real life, only in dramatic Hollywood movies.

I hear a door slam and I look up to see my husband rushing down the hall towards me with tears in his eyes. I did not react in the same way, I was still numb. He gasped, “It is not good, it is really bad!” He hugged me and I sat and stared at the floor. My mind was blank and I could not take on these words so quickly. I pulled back and said, “Ok what did pathology say?”

I remember him wiping his face and sitting down to calm himself, this is not my husband’s nature to be emotional. He is a calm cool collected guy who I always tease about how he strolls as I run when there is an emergency. He has to be this way as he is surgeon and needs to be able to stay calm in the operating room. If there should be a problem, he needs to be able to keep his head and fix it.

We sat there that day, next to pictures of our young family. Just four years earlier we were on our honeymoon in France and a picture depicted us kissing in front of the Eiffel Tower. A couple years later we had our son and a picture showed us as a young family. As we discussed the pathology, I went into a panic. The emotions kicked in as I started to realize the truth and then my surgeon called to discuss what we needed to do.

I remember yelling, “Take both of my breasts!” I was pacing the floor and starting to feel angry.

“Then realization hit when I heard my son waking up from his nap and I panicked. I could not face him right now, I felt like I had let him down. ”

I had dedicated my life to him, turning down my career to stay home and teach him, catch him when he fell from his first wobbly steps, wipe the food from his goofy grinning face, and nurse him to sleep as I sang his favorite melodies. What was to become of me? Who was going to raise my son?

Before my son was born, I had made a promise to myself that I would be the one to take care of my son and stay home from work so I could be the one to teach him how to walk, talk, and about life in general. I did not want someone else to raise him and I felt rather strongly about it. It all came to reality as we started looking for a part time helper/nanny. I would be going through six months of chemotherapy and radiation. I was diagnosed with Stage III Intraductal Carcinoma and it was quite aggressive. I would need the ‘royal treatment’ of medicines since it had reached 9 out of 14 lymph nodes and they were quite enlarged when removed.

I would need to have days to rest and that meant someone needed to help us.

My husband insisted we would need someone twice a week and we would time it with when I felt my worst so on the days I felt better then I could be there with my son. I realize now especially how fortunate we were to be able to hire someone to help us for those days, however I was still very emotional about removing myself as the main caretaker from time to time.

We did find a lady who seemed nice and had the experience when it came to handling toddlers. It did not start out quite so pleasant however. She was not happy with my list of instructions or my son’s schedule. The first day came for her to start as I began my cancer treatment. I could not walk standing straight up, I was quite breathless, and the chemical feeling running through my body had me feeling quite nauseas. I was also loopy from the steroids and emotional.

My husband was working a half day and I was in bed not wanting to move with the visions of the ‘red devil’ Adriamycin in my head. I had wanted to check in with the nanny throughout the day as I wanted to be sure she was happy and also that my long list of instructions were being followed. I could hear her in my son’s room getting him ready for his nap and I saw the time on our digital clock…20 minutes past his usually put down time. I cringed and realized he was going to have a hard time going down. I decided to get up and see if she needed my help since it was her first day. I walked into his room and was met with a disaster. His room was a mess of toys and clothes on the floor. She was changing his diaper and my son was happily playing with a toy on the changing table. She seemed very calm and moved at a casual pace. I was a bit upset and asked, “Is everything ok?”

“She did not acknowledge me, finished what she doing and then said, “I am in charge right now and he will be ok so please do not interfere.” I felt like someone had slapped me on the face.

I then went over and took him from her and said, ”He needs to be on his schedule or it will ruin the entire plan I have set up for him.” I felt a rush of energy through me and I felt very dopey from the steroids. It almost feels like that surge of teenage hormones when you are 16 and your mom tells you that you cannot go out. I was a bit put off by how the steroids were making me feel but I tried to focus on the situation at hand. She was none too pleased with my accusations and said, “You have to allow me to do things my way.”

I felt defeated. I was hanging on to something that I no longer had control over. I left the room crying feeling lower than ever before. I told my husband what happened and he did not quite understand what had happened and tried to reason with me that maybe I was trying to control the situation too much. He could not risk firing her and then who would help us out, he had said to me.

It was hard for me. Just a few weeks prior I was the one making his meals, putting him to bed, and making sure he was on his schedule.

I was angry because cancer was not only making me tired and sick, I was also losing control of my home.

I would find as the treatments progressed I had no energy and I was getting the trio of chemicals called AC&T. I would find myself laying in bed unable to move some days and then a couple days later I could manage to walk out of the room and watch television with my son as he played. I found as I walked out of the room during the days we had our caretaker the dishes piled up in the sink, toys all over the house. There was the time she took him for a walk and did not leave a note. I went running outside looking for them with a scarf on my head and no bra revealing one breast under my lose shirt. I started to cry yet again wondering how our life had changed so quickly. I could not take my son anywhere really or steadily make him meals and I felt like as his mother I had lost control and maybe this was meant to happen as I would be replaced by someone else because cancer possibly was going to win?

I decided at that point that maybe I need to try to fight through the chemo fog and walk him myself, maybe I was being too easy on myself.

The next morning I went out to her and said, “At this time I am going to walk him down the street and back. Is that ok?” She looked at me with concern and asked, “Are you sure that you are able to do that?” I was standing up breathless, feeling a bit weak and needing to sit only after a few moments. Yet I knew that I needed to try to get back into that position as mom. “Yes, I will be ok.” I then rested for about an hour and then got ready for the ‘walk’.

I laid on the floor at one point while she got the stroller out and I kept telling myself, “I can do this I need to do this.” I then got up and walked him slowly down the street.

It was the slowest walk of my life. This is coming from an avid walker and runner in my hey day. I decided to sing to him as I walked and I admired the trees and plants as I moved at a snails pace. I could only walk around the block and when I got back to the house I nearly collapsed. She quickly took him from me as I crawled back to bed with my shoes on. She brought me a water and said, “Maybe next time I can come with you?” I felt thankful at that moment that she was there. She was trying to do her job and I was quickly learning that I needed to pace myself. Even though I did not have my ‘schedule’ followed, I was quickly learning to live each day for what it is, not for the time slot we were in.

Finally, I finished chemotherapy and with it a new found respect for this lady and a new outlook on life. I would pace myself no matter if there were dishes in the sink or laundry sitting in the washer and dryer, I needed to spend time with my son, watch movies and enjoy each day.

The true test of whether I had learned my lesson would come a few months later.

My son and I had begun attending a preschool parent class. I very was excited because I had picked the school out a year prior and I did not think that I would be able to experience seeing him walking about the classroom, sitting in the tiny wood chairs, meeting his first friends, and singing songs with the teacher. All was going well until one evening I found a lump in my neck.

I knew it was cancer the moment I felt it because it had the same feeling as the first lump in my breast. I realized the pain I had felt in my arm and neck the past few weeks were not from surgery or radiation. It was from the cancer growing back.

I was very depressed and angry. I would not be promised surgery, just chemotherapy and that meant if it did not work I was going to be re-staged to stage IV. At first I was numb thinking that I must be terminal if they cannot perform surgery on me. How can the medicine work if it didn’t work the first time. I took this diagnosis on differently this time around. I realized then this was my new normal.

The year before I was trying to hang on to an old life to a woman who did not understand cancer. I realized then this was going to be my new life and I had a chronic condition that would require attention and care from time to time. I needed to take care of myself and then I could take care of my family.

I had the preschool program to help me and while my son played with the other kids I could rest and be there in his company. If we were at home and I needed to rest I would put on a movie and we would watch it together in my bed. I would turn on music and we would dance and bake cookies as I let him play with the extra flour and sugar. I learned that a mess does not need to be cleaned up right away and so dishes would be left in the sink — not to the extent of what I found with the sitter, but I would try to pace myself. I would save the dishes for the evening.

I would also have set days to do laundry and groceries. I would have my husband run to the store on this way home. I found easier ways to make dinner without needing to make everything from scratch. I was starting to feel like I had more control over the home life. The catch was needing to let go. I needed those first few months of misunderstanding and confusion to lead to me where I was at this point of letting go and allowing things to just be. It made me a better mother in a lot of ways and it made me better to myself.

I really do not believe in schedules any longer. If we decide to wake up and go to Disneyland we do it because I like to live each day for what it is: just that day and that moment.

Dana Dinerman. Swimwear designer, fashion trend writer, and stay at home mom. Diagnosed at 34. IDC, Stage III. ER+, PR+ (HER2-). Regional recurrence at 35, lymph nodes in neck. Recurrence summer 2016 at almost-39: Stage IV, mets to lung, chest wall, and neck. I was diagnosed at a time when I was celebrating my son turning one and hoping to add on to our family. I never thought the growing lump in my breast, which was initially misdiagnosed as a clogged milk duct from breast feeding, would change my world forever. I did not realize the struggles that lay ahead as I planned my surgery on removing a breast and forgetting to get my labs for chemotherapy as we drove for my first infusion. I managed to get through the first trials of chemo and radiation not expecting that the pain in my shoulder and neck a couple months later would be the recurrence I was so fearful of experiencing. I would be re-diagnosed exactly a year after my first diagnosis. The day I was supposed to be celebrating one year out I would be on the phone setting up appointments with my oncologist. I would be told this time surgery was not an option as the neck nodes were too difficult to remove and I could only rely on chemotherapy. I honestly believed that this meant I was Stage IV however, being a mom and wanting to fight for my son, I moved forward. I would find three months after I started chemotherapy the cancer had melted away and I would complete my treatment with radiation to my neck and shoulder. I discovered during treatment that going to yoga, acupuncture, and meditating would keep me connected to my inner spirit and mind. I strongly believe that connecting the mind, body, and soul helped me get through the entire process the second time around and I was able to enjoy my life even with iv bruises and a bald head. It is nearly four years later and after much struggle with early menopause I still manage focus on the positive and last year I was at my son’s fifth birthday party helping him blow out his candles. I vow to always be an advocate for my fellow survivors and share my story, create designer swimwear for them (Hulabelle), and find trendy fashionable items that breast cancer survivors can have fun with while dealing with side effects from cancer. My mission is to encourage, give back, and be the best mom to my son. @hulabelleswimwear and hulabelle.com

Editor’s Note: This piece has been republished with permission from WILDFIRE Magazine, the 2016 “Parenting With Cancer” issue (Vol 1, No 4, Copyright (c) September 2016 by Wildfire Community LLC). More information available at wildfirecommunity.org

Every month, Rethink will be sharing powerful stories from WILDFIRE Magazine. Use code RETHINK for 10% off anything in the WILDFIRE Shop.

WILDFIRE Magazine is the only magazine for young women survivors and fighters of breast cancer under 45 years old. Headquartered in Santa Cruz, California, WILDFIRE is a beautiful, story-based bi-monthly magazine published on different themes relevant to young women survivors, from stage 0 to stage IV. Beautiful and ad-free! Visit  wildfirecommunity.org for more info.