Sometimes, self-care comes down to maintaining your own emotional health. And this is not always an easy thing to do. But if we do not work on it, keeping track of our own ups and downs, it can become too easy to get lost in a sea of anxiety and depression, carried along on waves of ennui and eventually drown out in the doldrums.
For the past seven weeks, I have been living in the midst of a clinical trial for poziotinib, a highly promising (and so far apparently quite successful) targeted cancer drug. But as with all clinical trials, there are areas of uncertainty in the treatment process, particularly with regard to side-effects and tolerance.
There have been a number of days where I have questioned whether I could keep going on with this drug — but I had vowed to see it through to my first scan at four weeks, no matter what. That scan showed a dramatic reduction in my tumor load, convincing me that another four weeks at the same dose was worth trudging through, no matter how thick and deep the gunk. But in spite of my optimism and the addition of antibiotics and antihistamines to the mix of my daily drug regimen, the primary side-effect — my full-body rash — has continued to get worse.
In fact, while some aspects of dealing with the rash are easier, and it certainly is less painful overall, it has spread considerably and shows no sign of abating. And with each day that I have to spend upwards of an hour just carefully putting lotion on my skin, I find that I am approaching my own self-care with trepidation. It takes me time to brave the shower, gathering whatever fortitude I have left, bracing for the potential pain of water against my raw skin, even as I know that I must clean my body and remove the accumulated crust of mixed blood, puss, lotions or creams, and whatever medicines have been slathered on in the process, hardened together with the flaky, dead skin that is continuously sloughing off my body.
No Obvious Reason, No Clear Solution
Some days, I stand in one room or another, momentarily without an activity or distraction, and I will just begin to weep. I won’t know why, necessarily; when this happens, the emotion comes before any direct or obvious cause. I just want to crumble. And then I have to do whatever it takes to gather myself and keep going on.
This is the part where people usually say to me that I am so strong or I am so brave, to keep persevering as I do. But that is not true. I am neither particularly strong nor am I brave. I don’t have things under control and I am never quite sure that I can, in fact, handle what is going on. What I do have is a constant challenge, one central to my overall health, that I need to rise to meet every day. And right now it is getting harder, which is why I have decided to make it my Self-Care Challenge of the month: Keeping It Together.
Sometimes, the most basic mental health care is the most important thing to focus on. I know that my medication is working, and I know that the side-effects will have been worth continuing to endure. I even have some level of faith that they will continue to become easier to deal with over time, whether due to better palliative care or a decreased dose of the cancer drug or a combination of the two, and maybe even just by me becoming used to the daily process as time goes on. But in any given moment, I still can get lost.
If you have suggestions or recommendations about how you keep it together when things are difficult, I’d love it if you would share in the comments section below. If you have a tool like the Health Storylines app to monitor responses to side-effects and keep track of reactions — something that is good to look back on as a reminder that it all ebbs and flows with some sense of order — I would love to hear how you make effective use of it. I look forward to hearing which techniques are most effective for your individual circumstance and the different approaches from those who rely on group support versus those who do it alone. We all have our moments, after all, when this is a challenge we have to face.
In case you missed them, here are my previous Self-Care Challenges:
And, of course, the post that set the stage for these challenges: