Last updated: March 2023
There are many things that those of us in the MBC community fear based on my own experiences and others that I've spoken with over the last few years. This post is not about identifying the fear, but about naming it, understanding it, and carrying it.
Identify fear when living with MBC
I think one of the best illustrations is the difference between anxiety and scanxiety. Anxiety, for me, is often about the unknown or the possible issues whereas scanxiety occurs when the worst has already happened and may happen again.
Anxiety, for me, is usually handled or solved by staring the issue straight in the face, with information, with preparation, and with research. Scanxiety and living with MBC is a whole other animal. The coping mechanisms I've developed for dealing with anxiety help with scanxiety and living with MBC, but fall short overall.
It doesn't surprise me that coping mechanisms for other issues outside of a diagnosis that will kill me and all the others who have it aren't completely effective. The ramifications of this disease are simply bigger, more profound, more life-changing, just more and it's taken me a lot of time to figure out how best to tackle it.
My list below is by no means complete and I'm sure will change over time, so feel free to share what helps you cope and continue this conversation.
1. I have learned that I can't handle the fear unless I'm taking care of myself otherwise
While cliche, the saying that you "can't pour from an empty cup," is quite true. If I'm spreading myself too thin or pouring into the lives of others without first taking care of myself, I can't handle the challenges that MBC creates as well. It's not selfish to understand and act on the fact that those of us carrying this diagnosis need more than we did before the diagnosis. My emotional capacity is far different than before cancer. Now, I have to be really gentle with myself and put myself first.
2. Talk about your fears
Each time I've shared my fears with another, I feel lighter and the fear seems more manageable. Knowing who you can talk to is key and knowing that the other person can help you carry your burden is priceless.
3. I have learned that I can't look too far ahead
While looking ahead is a kind of hope and that's necessary too, I have found that if I try to examine and handle too many parts of my diagnosis or too many steps ahead, I get overwhelmed and often spiral. For instance, during 2020, I developed bisphosphonate-induced osteonecrosis of the jaw (BIONJ), which is a side effect of the bisphosphonate, Zometa, that I take to keep my bones strong as I have bone-only metastases. For a bit of time, while we got the BIONJ under control and I started treatment, it looked like I wouldn't be able to continue getting the Zometa infusions.
In my head, that meant that the cancer would spread outside my bones, I'd likely have several fractures that would exacerbate the spread and death would be imminent. In short, I panicked. Things aren't that dire and I'm getting my next Zometa infusion in January 2021 after a break to allow my mouth to heal a little, but it's a good lesson for me to remember, that I can't look that far ahead and borrow the trouble of tomorrow since today has enough to handle. Another way of saying this is to take things one step, maybe one second, at a time.
Bottom line -- when things get overwhelming, it's best to shrink your perspective and only face one part, one thing, one second, one step at a time.
4. I have learned that planning for the worst possible scenario (in smaller doses) helps me to then handle the smaller bumps in the road.
I learned this lesson in law school, to think about the worst thing, and it served me rather well in this scenario. I'm always looking for plans B, C, D, and E and encouraging my team to think about backup options as well. I do best when I don't have to make quick decisions based on limited data. Planning ahead and having alternative plans helps me to be comfortable making the decisions that need to be made at the moment.
I ask myself -- what is the worst thing that can happen here? I could die. Ok, I can plan for that. What's the next worst thing and then the next. By working backward, it helps put what is happening right now in a different perspective and I can keep plodding forward.
5. Find some buddies going through similar things to lean on
While my husband and my parents are the best caregivers I could ask for, they don't always understand what I'm feeling. Others in the MBC community do get it. I've learned the hard way that it's important to have a few buddies since you never know when someone is going to be going through something hard and just can't be there for you.
I also have a few friends who have had breast cancer themselves but are not stage IV. They get things differently and are helpful to talk to. Again, watch out for when you are leaning on someone too hard, or they are struggling themselves. This is key, so you don't flatten people.
6. Ask questions and seek out information.
Knowledge is indeed power, and I find that I do feel better when I understand not just the "what," but the "why." Dr. Google can only get a person so far and developing relationships with my team, and other doctors in the cancer space have been key to reduce my fear and anxiety. During my experiences with MBC, the times that I've struggled the most is when I didn't know what was coming or had my expectations set incorrectly.
For example, the surgeon inserting titanium rods inside both femurs back in June of 2017 told me that I'd walk out of the hospital and downplayed the amount of pain I'd be feeling after the surgery. I woke up from surgery in pain and furious that he'd lied to me. I had the wrong expectations and I hadn't prepared for the pain, plus I didn't have a great reaction to Dilaudid, and that didn't help.
7. Communicate, communicate, communicate
I've heard the phrase -- "I thought I was the only one who thought/felt that" -- so many times in the MBC support groups that I feel like I should make it into a t-shirt. So much of what I feared would happen either has or will happen and knowing that others feel the same way or have experienced the same things I've worried about, has been so comforting.
That human connection is so key when we face challenges and I'm not sure there is a larger challenge than living with a diagnosis that will eventually result in our deaths. Plus, the old cliche -- a burden shared is a burden halved -- is so true. When we know we're not alone in an experience, it suddenly doesn't have the same power.
8. Ask for help, prayers, juju, thoughts, light, whatever helps you
This is one of the hardest things for me. I've always struggled with connecting vulnerability with weakness. A few weeks ago, during a regular support group that my dad and I moderate (he's a licensed mental health therapist), he "forced" me to be vulnerable and share some of my struggles.
I'd been holding back since I moderate the group and felt the need to be "strong" and I often project that persona because that's part of who I am; however, dad noticed and when he had me be more vulnerable, the tenor of the group changed for the better. Someone shared with me once that to ask for help allows others to "earn their grace," and to not ask means you are depriving them of that activity. Something to work on, for me!
9. Give yourself time to wallow in the fear or the anxiety or the worries or whatever label that resonates with you and then pick yourself up
If I didn't give myself time limits or some sort of structure, I'd be tempted to stay in bed for days and I have done that. I think we're entitled to wallow as much as we need to - dealing with an MBC diagnosis is HARD stuff. At the same time, I've found that I feel worse overall when I wallow too much. Setting a time limit for me for wallowing has been a good coping mechanism so that I don't just sit in the yuck too long. The longer I wallow, the harder it is to stop.
10. Talk about your fears and then do it again
Did you notice how often communication and sharing and talking about your fears made it on this list?! That is because we are built for human connection and we thrive when we do life in a community. Find YOUR community and nurture it, for that is how we feel safe and secure and loved.
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