Photo credit: Nicholas Kingston
Hi everyone! I took a bit of a hiatus over the past month from blogging - my husband and I went to Hawaii for two weeks to celebrate being finished with treatment (post coming soon about that trip!) and it's taken me a solid two weeks to recalibrate and get back into the rhythm of life and working after our trip.
October 10th was World Mental Health Day, and I saw a lot of encouraging messages and shared stories on social media. It inspired me to contribute my own story of mental health and what that looks like for me today.
Long story short, I'm dealing with anxiety related to my lingering "chemobrain" side effects as well as PTSD-like symptoms related to my treatment (formally called Cancer-Related Post-traumatic Stress). I feel grateful that my providers and I were aware of these things (even when I didn't have a formal name for it) fairly early on and I am doing really well 90-95% of the time. It's that small percentage of the time that we're trying to get a handle on.
What anxiety looks like for me
Sometimes, anxiety will be triggered by something specific related to treatment that makes my body feel like I am physically back in that moment during treatment. It could be a particular smell, like the hand soap we had in our bathroom when I was going through chemo, that transports me into feeling like I'm laying on the bathroom floor trying not to throw up. Or it could a particular movement - I strained a muscle on vacation, and when my husband was helping me sit up, that motion transported me back to when I was recovering from my mastectomy and needed help sitting up and laying down and the intense pain associated with movement. It's also triggered by any feeling or inkling that I'm getting ill or something is wrong with my body - I feel the same anxiety and fear as I felt getting hospitalized for dangerous infections during chemo. I feel like a lot of the worst parts of treatment were a blur because of all the drugs I was on, but sometimes what I do remember feels less like a memory and more like I'm physically reliving the experience.
Other times, the anxiety is a bit more predictable and linear. It comes on as a result of overworking my brain and body. If I pay attention to what I'm doing and how I'm feeling, I can often get it under control early on. If I don't listen to my body and push through it, that's when the trouble starts. Many chemo patients experience what's called "chemobrain," which refers to the many cognitive side effects of treatment that impact one's memory, focus, attention, and ability to multitask. The chemobrain effects result in me getting easily overwhelmed and frustrated sometimes, like if I try to multitask, don't take rests, or try to take on too much at once. I hesitated about even sharing this part publicly because I don't want it to change the way people view me or my work (I'm in the midst of starting my own company and I don't want others to think this means I can't do the work). However, I want to contribute to ending the stigmas around mental illness and other disabilities by sharing my experience. Just because I am dealing with anxiety and cognitive difficulties doesn't mean I can't still do great work. It just means I need to pace myself, prioritize my health, and find different ways of working to accommodate my chemobrain until it fully subsides.
How I'm dealing with it
When I was diagnosed, I immediately knew that tending to my mental and emotional health would be incredibly important during treatment. I proactively saw a psychiatrist who specializes in oncology (provided by my cancer center) during chemo to learn strategies for dealing with the treatment-related anxiety I felt creeping on. I learned to meditate, which helped calm me during my darkest times throughout treatment. I talked about how I was feeling with my husband and others in my support system, knowing that I usually feel better after talking it out and possibly some cathartic crying. While it was often difficult to deal with, I knew what to expect from a mental health perspective. Once the treatment started winding down, I think I stopped being so proactive with all of this because the worst was behind me and I thought I didn't need it as much anymore. (Spoiler alert - I was wrong!)
I didn't expect that mental health was going to be more of an issue for me post-treatment. I knew that it's common to experience anxiety and/or depression during this transitional time, but I didn't expect it to manifest in the way it has for me. I recently had an appointment with my oncologist, who said that the way I'm describing my experience is almost word-for-word how other patients describe feeling post-treatment. Like I said, I'm thankful that my doctors and I were able to identify it fairly early on and that it's really not THAT bad. It is not all-consuming for me right now and my doctors and I agree that consistent medication to treat it is not necessary for me at this time.
I recognize and appreciate that this is a necessary aspect of my overall healing, and in some ways it will just take time and patience, particularly for the chemobrain-related symptoms. I also recognize that I need professional help to process my experience and deal with the PTSD symptoms so that it doesn't get worse or rear its ugly head 10 or 20 years from now. I've been talking with my medical team and we co-created the following plan for me:
My Mental Health and Self-Care Plan
Start regularly seeing a therapist that specializes in cancer survivorship, chronic illness, and PTSD
Explore Eye Movement Desensitization and Reprocessing (EMDR) treatment for PTSD symptoms
Implement diet and supplement recommendations from my survivorship doctor and naturopath doctor to help with chemo brain (should I do a blog post on these?)
Engage in deep belly-breaths for 3-5 minutes every day, whether or not I'm feeling anxious
Exercise for at least 30 minutes 5 times per week - great for cancer prevention AND anxiety AND chemobrain - a triple-whammy!
Meditate for at least 5 minutes every day (gotta start somewhere, right?)
Remember I'm not alone and keep talking with my support system and formal support groups when I need to
Pace myself when it comes to work and create systems that help me be effective without overwhelming my body
Give myself grace and patience while I heal, and don't be hard on myself
This post is the first in a series I'm going to share about my mental health journey - you will be able to find all related posts by going to the "Search by Tags" section that's on the right side of my website and clicking on the tag "Mental and Emotional Health." Stay tuned for updates!
Are any of you experiencing similar symptoms? What does your plan for mental health and self-care look like?
P.S. My friend and business partner Nicholas Kingston is responsible for many of the portraits of me you've seen (and will be seeing) on the blog. He is an incredible artist and photographer, and will be starting a new photo project on cancer survivorship. If you are in or finished with treatment and want to be a part of the project, please comment below or send a private message.
You can check out his work at his pop-up exhibition in Georgetown now through October 21st - the portrait shown in this blog post today will be among his many amazing pieces on display. See here for more details.