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:
Jeff, I’m always glad for your writings & envious that you complete & publish. I seem to run out of steam at about 85% complete when I write and abandon things or never push the ‘publish’ button. We write about different subjects but they fall in the same camp of ‘things people don’t want to know because they are not fun.’ They do not support the Heroes Myth where the Übermensch tackles all adversity through sheer will and if he fails, well, he just didn’t try hard enough. Yet, these things, your life with cancer, life & death, what it is to inhabit a human body when it is failing you… my own life within the invisible, parallel universe of poverty… these intolerable things are the stuff of humanity. It seems to me that the cultural rejection of what is difficult in life, the particularly American aversion to anything short of a blazing, fairy-tale hero story with happy endings is an immaturity which is destroying us and which, at the moment, humanity is having to confront…reality, that is. Part of the amazing side of this new world of the World Wide Web, is people like yourself are shining light into the dark, so that we might learn, evolve into embracing all aspects of life, even those that seem intolerable. We’ve a long road…humanity. You are a trailblazer forward….inch by inch…even curled up in the bottom of a shower. Which…who these days doesn’t end up curled in a heap at some point? Those are the moments humanity needs to make the center of the universe right now.
I find this latest entry of yours meaningful because it beautifully illustrates just how fragile we are, just how big tackling the ‘smallest’ of hurdles (putting on lotion) can be. No one wants to know humans are that fragile…but we should know and appreciate and respect that; only when we can… look at that, accept that will we mature, humanity that is… kind of like how we have ignored the fragility of the ecosystem. We haven’t respected the enormous load a bee carries in maintaining the planet’s survival, just as we ignore one another’s & our own fragility.
You asked for suggestions in the ‘keeping it together’ vein. I turn to books myself. I was in a Dialectical Behavior Therapy group for some years. I found it incredibly helpful. Parts of it work in a diary format, which is helpful when one feels disordered. The workbooks, and books on it are fairly dry, clinical stuff. But it might be worth sifting through some of it to see what might work. You sort of cherry pick worksheets or exercises to make something workable for yourself. I had a three ring binder full of work sheets from the course. When I lived in my arts building community, whoever was stressed out would tap on my screen door and borrow the binder. It was a bit of a running joke and also helpful. I’m including a link to one such book. Also, when I went into the shelter I had grabbed a thin book by Pema Chodron “When Things Fall Apart”… it got me through those dark years and I have never put that book, and others like it, down. Thich Nhatt Hahn is great too. He lived through the Vietnam War, was exiled… He’s got serious street cred in my book. Practical stuff… tolerance, radical acceptance. Two other books I turn to are, “Letters to a Young Poet,” by Rilke. He was ill and quite alone during his time of correspondence with young Mr. Campus. He has a lot of useful ways of thinking about… the solitude one encounters. Third, I’ve recently stumbled upon “Ambition & Survival” by a poetry critic, Christian Wiman, very reassuring book. Okay, I’ve gone on and on. Baby steps, brother. You’re doing great in the face of all this. I send you love.
https://www.goodreads.com/book/show/369266.The_Dialectical_Behavior_Therapy_Workbook
Connie,
Always grateful for your supportive words and wisdom. Thank you for sharing your experiences. Now, stop running out of steam and start pressing that publish button more frequently! Heck, if you can respond to my posts like this, you can get more of your own online. Or, you know, you can just spend more time responding to my posts… That’s good, too. 😉
Love sent right back to you!
Hi Jeffrey! Y’know what? Go ahead and weep. That’s cleansing, too. Love you, Kate
Thanks, Kate! Next time I am weeping in a heap, I’ll be sure to think of you! <3
Love you, too.
Hi Jeffrey. I’m new to reading your blog. I am a hospice/palliative nurse and have seen so much suffering. Thank you so much for sharing your story. What I have seen helpful to my patients is 1) letting yourself weep. For awhile. And that time to weep is allowed because you need to let it out. 2) connecting with other people in similar circumstances. Is there anyone else In this clinical trial you could reach out to? You may have already thought of this but I wanted to mention it. 3). My mother found great peace in music. She never had listened to opera but now suddenly sitting in her chair with her eyes closed and listening to beautiful arias gave her a great sense of calm. And always know that even though I don’t know you I am thinking of you and sending you love and hope and strength.
Thank you, Carol — it is wonderful to have the perspective of someone who works in the hospice and palliative care side of the equation. I love the idea of discovering something new, like your mother discovering her opera. Music is something that I return to again and again, and I think helps people in many different ways.
Thank you also for thinking of me — I hope that you become a regular reader here and look forward to hearing from you again.
All my best!