Fear of Recurrence May Hide, But Never Truly Goes Away

I have been super anxious this week and could not figure out why. Everything just seemed off and out of sorts.  It is as if grey storm clouds have come in and are waiting to wreck havoc on the world.   My family is good; no one has COVID (anymore), my husband has been working again for a year, my job is going well, the kids are all fine. I have had 2 separate evenings with girlfriends this week, I have been on the Peloton bike a few times and even went for a nice walk today with the dogs. I have been reading for pleasure and trying to take some time for myself.

So what is wrong? My brain is not fine. Lying in bed this morning, tossing and turning, the lightbulb went off!  I am afraid. Last month, it was five years from my second cancer diagnosis.  Five years is a celebratory time for a cancer survivor.  Every five years that goes by, your chance of recurrence goes down.  There are stats on it.  I was so busy with my job, working on various things for my son’s school, etc. that I did not take the time to appreciate how far I have come. This is usually a good thing because I have also been too busy to worry about the cancer coming back.  I don’t often think about it, but sometimes, it hits me like a ton of bricks.

There is a 30% chance of recurrence after a breast cancer diagnosis.  1 in 3 diagnosed will have it come back, either as a recurrence or metastatic breast cancer.  I have had 2 primary occurrences of breast cancer, one in each breast, so really not a recurrence, just twice (un)lucky. Both times, it was caught at stage 1, ER/PR+ HER2-, which they say is the most treatable.  Yay!?!  I did everything I was advised to eradicate the cancer from my body each time, but there is always a chance, apparently 33%, that is will come back.

What brought it up lately? The fear and anxiety? I suffer from anxiety disorder and have been on medication since 2015 – I am all about better living through chemistry.  Those daily little pills help me get through the good days and the bad without losing my shit or crying in my closet with a box of wine. Late 2021 I had a physical with a new PCP. He asked if I wanted to take some time off from my beloved Celexa? I listed off everything that had gone on for us in 2021, in addition to a global, isolating pandemic and responded: “Hard Pass.”  So, every morning I take my anxiety pill and my cancer pill and trust they will do what they are supposed to do.

Then I read a book and my brain went wild, not in a good way. For my podcast, Breast Friends Cancer Support Network, I interview guests about their experiences with cancer, how their lives have improved after a cancer diagnosis or talking about what to do about the multitude of side effects post cancer. Yesterday, I finished a book written by Mike Murphy called “Living in Color – A Story of Love, in Sickness and in Health” about the diagnosis, treatment and loss of the love of his life, Margot, to metastatic breast cancer. He is going to be my guest on March 16 to talk about Margot, the book and the foundations he created after her death to help others.  It is an amazing book and I highly recommend it, but wow it took me down.

As I finished the book yesterday, I was sitting outside on a rare sunny day in February in Portland with my dogs.  I had other things to do, but I could not put the book down and read half of it in that one sitting, which I rarely allow myself to do.  But I could not put it down.  I mean, it is not like the ending was going to surprise me; I knew beforehand that young, beautiful, spiritual Margot is taken by the cancer.  Way too young.  She was 10 years younger than I am now.  She never had the biological children that she so badly wanted.  She never made it to Rome.  How come I made it through (so far), but she didn’t? I cried ugly tears when I finished it.

Survivor’s guilt. When a person has feelings of guilt because they survived a life-threatening situation when others did not. I have experienced this a few times in the past nine years.  Early on, after my first diagnosis, I attended a Young Survivor’s Group. There would usually be 10 – 15 women in the room, in various stages of treatment. Everyone shares where they are currently at, side effects, what is coming up and many offer advice to others.  It can be very uplifting to be in a room with others who “get it.” I sat in the room after having stage 1 cancer and radiation, I did not have chemo, so I kept my hair. My tumor was small, 4 mm, so I kept my breasts.  As I sat listening to the women who had bilateral mastectomies, very difficult chemotherapy, metastasis to the brain and so much more, I felt guilty.  Why was my cancer caught so early and so treatable when they were suffering through so much? How could I sit there and talk about how tired I was from driving back and forth to radiation 35 times when some of these women could not even feed or bathe themselves? Women I met in this group have died. Young. Yet, I am still here.  Why?

So on top of feeling guilty that I am still here and have not had awful treatment experiences, I am now terrified that it is going to come back.  Every random pain in my body is now cancer which has come back in my bones, lungs and brain.  Mind you, this is all in my head – there is no cancer (don’t panic).  I had a visit with my oncologist back in December and he now wants to see me once a year instead of every six months because I am doing so well.  Uhm, no thank you. See you soon dude.

Reading about Margot, diagnosed under age 30 and gone 10 years later has sent me into a mental spiral.  It is totally illogical and I have no reason whatsoever to feel this way, yet I do. She did everything she was supposed to and then some, yet cancer took her anyway.  What is to protect me from it invading other parts of my body and taking over?  I know, I know.  I take the medication (exemestane, an aromatase inhibitor) which helps stop estrogen production in my body because my cancer fed on estrogen, even though I have all of the side effects from it and my body just hurts.  Yet I still take it and will continue to do so for another five recommended years.  I am working on my fitness, am eating healthier and hardly drinking any alcohol. But this fear will not go away today.

I try to live every day and be grateful for all that I have. I have started a gratitude journal. I have a new mantra, from the book of another one of my guests, Dr. Michele Kambolis, author of “When Women Rise: Everyday Practices to Strengthen Your Mind, Body, and Soul.”  It is:

I am grateful for this body, this breath, and this life.

For now, I am working on learning to let go, to give myself grace and to not worry too much about the things I cannot control.  Putting the fear and guilt back in the box and moving forward. This time I am going to use a lot of duct tape to wrap it all up and pack it far away.

Photo from Disneyworld’s Animal Kingdom, just as you are walking into Pandora.  It makes me happy so adding it to make you happy too.  

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