‘Chasing a Ghost’: A Mother & Survivor Recounts the Emotional Rollercoaster of Going Through a Cancer Recurrence

Today I put on my cheery face and begin my journey alone. I have plenty of support from friends and family, but the journey can only be taken by me. I am waiting to see the doctor. My back has been bothering me for almost a year now, my sleep has been interrupted because I cannot lay flat on my back or on my right side and I am tired of not being able to sleep. I have been here before, the faces behind the desk are the same, the magazines are the same and I now know the check-in routine by heart.

It seemed like we tried everything from X-rays to an MRI, even a chiropractor. Nothing has jumped out at anyone. I finally suggested that maybe it has something to do with the nerves in my back creating this burning feeling to the right of my spine. The doctor schedules me for a CAT SCAN with an injected dye to view the nerves.

It wasn’t long before I got the phone call that they found a soft tissue mass in my right lung. I didn’t feel panicked at first, they made it seem like it was possibly a collapsed lung from a prior bout of pneumonia, although I have never had pneumonia. My next move was to schedule an appointment to meet with a pulmonary specialist.

We go over the CAT SCAN films together. She fans her hands and fingers over the films quickly indicating that they look fine. Doesn’t look like cancer, again she expressed that her best guess would be that it is possibly a collapsed lung. She reads me portions of the radiologist’s report and offers me a copy (Divine Intervention at work). I gladly accept and read along with her.

The recommendation by the radiologist is for a PET SCAN and BONE SCAN because of the patient’s prior history with cancer. It also indicates a review in two months. She opted for the review in two months because she really didn’t feel the urgency of a PET SCAN. I told her that wasn’t acceptable. She acquiesced and said that she would call the radiologist on Monday and see how adamant he was about the PET SCAN.

My PET SCAN was scheduled for the next Tuesday. I felt vindicated for only a moment until the realization set in that they were scanning me for cancer. I wasn’t sure what to think or feel at this point. Deep down, I knew something wasn’t quite right, but I held out hope for a clean scan. I went alone. I sat in the waiting room and watched the other scanners move through the process ahead of me. I looked at each one and thought about what type of cancer they might have. I wondered if they thought the same about me. The scan was painless. My anxiety was more about the results that would be coming.

I got the phone call. My journey begins. There is no surgery scheduled, no chemotherapy or radiation. My cancer has metastasized from my original breast cancer from thirteen years ago and has taken up residence in my right lung. Yes, there is lymph involvement, which means it is already on its way someplace else, hence why it is like chasing a ghost.

I am informed that estrogen positive cancers are better treated with hormone therapy. I begin taking Tamoxifin and a monthly shot called Zoladex. The goal is to change the environment that my cancer likes to live in. That means removing the estrogen in my body as completely as possible. This all seems so much easier than the first time around, but this time I am more frightened. Ignorance the first time was a blessing.

This time, I am too internet savvy. I can research the statistics of my cancer. The efficacy of the drugs I am taking for about 70% of the women studied was about 33 months with a 12% rate of success. When you look at those statistics, it doesn’t feel comforting. What about the other fifty years that I want to live. I am told over and over again that new drugs are being tried and studied. I know that is supposed to give me hope. I do have hope, but I am also realistic. I want to be in more control of my cancer. That doesn’t seem possible this time around.

My days are stressful and mornings are filled with anxiety. I roll over and scrunch the pillow once more, praying for the strength to get up and out of bed. Not the physical strength, but the mental strength to face the day. The sun was up, but it was still dark in my head. I just wanted all the negative thoughts to go away, but they just kept coming.

They say it takes time to grieve, that there are phases that you need to go through. I understand that, unfortunately others in my life need to jump over this well intended process and head right into the “everything is going to be fine” phase. I am trying to understand their fear and their need to think positively. You may think it is all well and good, but “Hello World,” it isn’t. It’s not going to be okay. Nothing will be the same again. I am chasing a ghost. I will never know where it is or where it will show up next.

It could be anywhere, just sitting in wait for me to weaken. That’s when I will be most susceptible. And it knows it.

I cry at the drop of a hat. Some will say that it is normal. It drains me. My days are filled with stress and the need to escape, and I have nowhere to go. I cannot run and hide. I dream of living a more simplified life someplace quiet and serine. I pray for an island all my own, but I have a family to think about. I cannot let them down. I cannot crawl into my little cave and leave them behind. Nor do I want to. I want to beat and defeat this enemy. I need hope. I need to find the positive in my situation.

My body aches for a hug. My body aches for love, a gentle touch, a kind word. Maybe just, “I’m thinking of you” or “how are you today.” The women in my life are so incredible, they are supportive and understanding. They instinctively know what a heart needs to heal. It starts with comfort, understanding and compassion, never judging or critical. They know how to hug and comfort. Others in my life would prefer to keep their head in the sand and think that everything is going to be fine. Conversations are strained and emotions run high. I feel beaten for feeling scared. I can’t even grieve my loss, the loss of a long life with no interruptions. Oh yes, I hear that anyone can get hit by a truck tomorrow. The blessing for them is that they didn’t see it coming. I feel it coming every day.

I see the truck coming. I want to scream and tell it to stop. I want to jump out of the way, my feet are stuck, I can’t move, I have NO CONTROL! I need to talk about the truck. I need to feel sad about my truck because it is mine. I am truly sad and scared, but forced to play the martyr. Some people won’t say anything to me or acknowledge my situation. How sad, because more than anything, I need to process and talk about what is happening to me. I need to be in the moment and I need to know they care and are concerned. Not that I want everyone to wallow in self-pity with me, but it is soothing to know someone wants to coddle me and take care of me. It is so needed at this time.

I will get through this…I will chase the ghost and even try to stay ahead of it. I watch other people and imagine they have their own set of issues, and I shouldn’t feel sorry for myself, but I still have so much to do in this lifetime. I want to see my daughter get
married; I want to play with my grandchildren and retire to enjoy a more simplified life. The one I have dreamt of for so many years. Most importantly, I would love my partner to hold my hand and tell me he is scared to loose me. That would give me the courage and desire to fight this fight.

Years after writing this account, Kim shared it with us because there is hope. “I did make it to see my daughter get married and she is expecting my grandson,” she tells SurvivorNet.

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