Living With Metastatic Breast Cancer: Dealing with Chronic Illness and Scanxiety
Lover of: my family, my friends, and good food & wine
How does living with chronic illness impact you from day to day?
I would really like to think and say that it doesn’t impact me, except on the days that I have medical appointments or I am dealing with symptoms or side effects. BUT, if I am going to be honest, I have to admit that I think about cancer, and my fate, an awful lot. Sometimes I forget what it was like to NOT live with cancer, how carefree I must have felt.
I don’t always feel sad or anxious, at least not in a clinical sense, but it’s on my mind frequently. And there ARE some times that I feel quite sad or anxious. I am a realist, so I generally cope and calm myself by remembering that this is the “circle of life.” We are all born, we all live and have our own stories, and we all die. (I am also an atheist; I know that people derive great comfort from religion, especially around death and dying, but I don’t feel that an atheistic worldview is discomfiting in any way – I do not fear death, I only feel sad for myself and others that I won’t live longer.)
From the week that I was first diagnosed (August 2010), I have thought to myself “everybody has a story that could break your heart” (thanks for the lyrical inspiration, Amanda Marshall). Again, it reminds me that as tragic as my story is, I am not alone; a lot of people have fared and coped with the same or worse.
I like hearing metastatic cancer referred to as a “chronic illness”, because I also prefer to think of it that way (as opposed to a terminal illness). I do like to hope that there will someday be a cure for MBC, and people will be able to live with it for several years, like they now do with HIV – although I acknowledge that it is a race against time for me, and probably unlikely in my lifetime.
There have been very brief periods where I have been physically incapacitated (usually around surgeries, or when I have experienced bone “tumour flare”), which is disruptive to daily living. Different treatment regimes have also come with side effects such as fatigue or nausea or medication schedules that I need to work around. But otherwise, I generally look and feel healthy right now. People often make comments along the lines of “But you look great!” which I like to hear, of course. But it also hurts sometimes, because I know that appearances can mask what is happening on scans and/or emotionally for me, and people with cancer often look well until suddenly, one day, they take a turn for the worse.
How does it affect your job, parenting, relationships?
I am lucky to have a fantastic employer. I am an employment lawyer (a partner at a large firm where I have worked for 18 years), and I continue to work. My partners and other colleagues have been uniformly supportive, and widely accommodating. They have allowed me to set my own hours and pace, they have altered my job description to make things easier for me, and they have been a pillar of support emotionally.
I have been very open with those at work who need to know, and my close colleagues, about my diagnosis, treatments, and scan results – I believe that open communication is essential to getting the best support at work. I find my employer’s approach extremely liberating and anxiety-reducing – sometimes I need to come to work as a distraction from cancer and as a distraction from worrying about my caregivers and other loved ones. As an employment lawyer, I am particularly grateful because I know quite well that not all workers are treated so well.
I am the mother of 5 year old twin girls, and I continue to actively co-parent them with my spouse. I think parenting can be challenging for everyone sometimes, so it is hard for me to know what level of exhaustion is normal, and how much is due to the fact that I have MBC.
My spouse is a very engaged parent; he relishes spending time with the girls and plays a significant role in all aspects of parenting, so he doesn’t make me feel like I am unfairly burdening him when I need to take naps or breaks. We have not explained “cancer” to the girls yet – my periods of incapacity have been so short and spaced out, that we never felt that it was necessary to explain anything beyond “Mommy is not feeling well for a couple of days”. But they do get very curious and nervous about doctors’ appointments and such, so I feel that the time will come soon when we need to give them more detail.
Thinking about that discussion makes me very sad. I have prepared myself with age-appropriate books and language, but I know that it will be somewhat heartbreaking for me when I have to explain to my children that I am sick, and that I may start to look sick. As a parent with MBC, there is a constant tension between making things normal and stable and routine for my children, and sharing as many opportunities and experiences as I can with them.
When we decided to take them to Disneyworld last summer, I knew that it might be my one and only chance to share the experience – but I also struggled with the idea that they might be too young still to remember much of it. That is very difficult for me – knowing that their memories will never hold all of the minutes that I spend with them, and will maybe only hold fleeting glances of me. I often think to myself: “What exactly do I remember from when I was 5 years old? Can I somehow make them remember more than I do?” Mostly, I think my family will be OK, or they will figure it out. Other times, I indulge my kids; I make allowances, I splurge, I excuse misbehavior, because their mommy has cancer, and I will do whatever I can to see them smile while I am still around.
I often wonder “Where is the rule book for this experience? How do other families get through this? When and how do they start and get through difficult conversations?” The situation calls for creativity, but I thrive on routine and structure. Mostly we try to carry on our activities of daily living as normally as possible, and don’t spend a lot of time dwelling on my illness.
I think that illness has made my spouse and I both take life a lot more seriously than we did before – we spend more effort thinking about how to spend our money, and such practical things. My spouse and I have both participated in cancer support groups in the past, and feel that we know how to access the right resources at the right time. For now, we are focused on living.
Does living with metastatic breast cancer cause a lot of anxiety? If so, what are some tools you use to cope with that?
I do get anxious from time to time. It’s not often paralyzing, but there’s always an undercurrent there.
I don’t have any specific coping strategies or advice – I think it’s different for every person. Some people thrive on yoga or meditation, but those are not tools that work for me. I prefer other forms of distraction. I have tapped into various support groups and organizations, and I find that they all have something to offer, at different times and in different ways.
Sometimes, I need to pull back from other people with cancer, or such settings, because they detract from another coping strategy I use, which is ignoring the fact that I have cancer! I am quite good at compartmentalizing, and can put it out of my head for a while if it becomes overwhelming. I’m sure my husband and other family members would say that I get moody, but I don’t beat myself up too much about that – I think I am entitled to be grumpy and sad about my situation from time to time.
I also cope by keeping busy; I probably say “yes” to too many projects at work and too many invitations to social outings (book club meetings, local “parents of twins” club meetings, dinner or drinks with friends, volunteering at the kids’ school, being a board member of an education-related not for profit organization), but being with other people keeps me grounded and reminds me what “normal” life is.
Tell us about your understanding/experience of ‘scanxiety’. What helps you cope with the anticipation of results?
I don’t think there is anything that can eliminate scanxiety. But putting a label on it, and recognizing that it’s happening, are a good place to start. It was very helpful for me to hear about others’ experiences with scanxiety for this reason. I felt so alone until I started comparing notes.
Like others with metastatic disease, I feel like I live my life in 3-month increments; waiting for the results is often more anxiety-provoking than actually receiving the results (good or bad).
The one thing that really makes a difference, for me, is being able to access my scan results on-line (through the online patient portals that are offered at Princess Margaret). Usually, my results are available within a few days of having scans. Since I am not a doctor, I cannot understand everything I read in the radiology reports, but I can usually make out whether there has been disease progression or not. With online results, I can choose to access them, or not. I can choose to be in an environment where I feel safe and supported when I open the results. Knowing the results before I meet with my oncologist means that I can absorb and process the information in my own way and on my own terms. And when I do meet with him, I can have questions prepared, and we can focus on solutions or next steps.
How does it feel when a treatment stops working and how do you move forward?
It feels terrible. But, my oncologist has always said “there are lots of tools in the toolbox”, and usually lays out a chronology for me (i.e., I always know what the next options will likely be, and in what order they are likely to be pulled out). This gives me structure and certainty and hope.
The times of transition–when I am moving from one treatment to another–can be difficult because they usually involve a “washout period” where I am not receiving any systemic treatment. I have a lot of faith in the medical establishment, and in my oncologist, and in conventional medicine. I take comfort in knowing and believing that the medical professionals I deal with know more than I ever will, and are doing their best for me – it allows me to focus on more productive and happier things than second-guessing or internet-surfing their expert recommendations.
What do you want other women going through this to know about this topic?
You are not alone. There is no best or right way to cope – do whatever works for you. “Everybody’s got a story that could break your heart.”