I’m coming to realize that I’m going through a form of PTSD that is not uncommon for cancer survivors and caregivers. It’s nothing new – a literature search finds articles and papers about it going back at least to the 1990s. But it’s new for me, something I hadn’t thought about before. Oh my, will melanoma ever stop giving me opportunities to learn about things I have no desire to know?
Well, I suppose the answer to that question is “no.” Having put that aside, let’s get on to the subject at hand – post-treatment stress disorder. It’s something that affects both cancer patients and their caregivers. And, it’s not surprising, if you stop to think about it: as another member of the Melanoma Research Foundation’s melanoma patient/caregiver community pointed out, it’s like waiting for the other shoe to fall.
The particular form of cancer PTSD I’m experiencing crops up in exactly the situation Robert and I find ourselves in – transitioning from active treatment of his melanoma to the nerve-wracking “watching and waiting” regimen. I can imagine that being an active cancer warrior could turn out to be a piece of cake in comparison. That’s not to say it’s been easy (particularly for Robert), having surgery and then waiting for the skin graft to heal; figuring out what treatments were available and deciding which one to take; having copious amounts of blood drawn, getting vaccinated, having biopsies for the GVAX clinical trial – but at least we were doing everything we could. Now it’s time to accept that after the MRI and CT scan at the end of this month, the only thing we can do is “watch and wait.” In a way, it’s like watching North Korea: you know the capacity for bad things to happen is great, so you have to be keep an eye on them and hope you catch them before they have a chance to wreak havoc ...
The American Society of Clinical Oncology (ASCO) has some tips for coping with the fear of recurrence. I’m working through them now, and you can see from this post that I’ve come to terms with the first one: “Accept your fears.” I’m still working on finding ways to manage my anxiety, and I’m hoping that, as the ASCO said, this fear really does lessen over time. As you can see, I’m writing down my thoughts and sharing them with the world, as suggested in ASCO’s admonishment not to “worry alone.” I haven’t decided yet whether to join a support group or talk with a counselor of some sort – it sounds like a good idea, but I’m not a joiner and have not generally found solutions from “talking” with a stranger.
Dr. Lipson, our oncologist, has given us a schedule for follow-up care – appointments with him every four months and skin checks with a dermatologist every three months. We’ll see him at Hopkins when we go for Robert’s scans, so the first appointment for follow-up at Sibley will be in late August. It’s time for a skin check, so I’ll get Robert to schedule an appointment later this month. Between appointments, I’ll check him out (!) pretty regularly and continue to kiss his head a few times a day ...
I think we both qualify for the ASCO’s “healthy lifestyle” tip. With spring finally peeking around the corner at us every few days, I’m pleased to say that Robert has gotten back on his bicycle. He’s also signed up at a gym with our Medicare insurer’s gift of a membership in the Silver Sneakers program, and the gym has a pool to swim in when it’s too hot or cold to ride outside. We both eat pretty healthy diets, don’t smoke, don’t drink to excess.
The ASCO’s final suggestion is to reduce stress. I’m pretty sure the anxiety I’ve been feeling (yes, physically) is a form of PTSD, and I’m doing what I can to take care of that (see above). I’m scheduled for a physical exam later this month, so if there’s anything else going on we’ll know soon. Meanwhile, I’ll keep eating well, sleeping eight hours most nights, working out three or four times a week, taking it one day at a time, and writing this blog.
That should do it. Eventually.