Head and Neck Cancer is a Lifetime Disease

When I was diagnosed with cancer it was truly awful and devastating, but over time you come to accept your diagnosis and treatment plan. You get through it because you think “this is temporary” and I will get back to my normal life after a year or two. I can’t speak for other cancer patients who didn’t have head and neck cancer or for those who didn’t have similar treatments – partial glossectomy, neck dissection, high dose radiation and cisplatin chemotherapy. But for two-thirds of head and neck cancer patients, the latent side effects from treatments cause life-long conditions to manage. And of those two-thirds, half of us will have conditions that are disabling.

Maybe it’s better I didn’t know. Maybe I wouldn’t have done the treatments. I’m not joking when I say that. The treatments are brutal. And if you get through them and are lucky enough for your tumor to fully go away, you likely will have a lifetime of serious issues to deal with.

I think I still would have done the treatments. I’m a fighter and after feeling sorry for myself for a bit, I would have decided to deal with it. So I’d still be where I am today. But I would likely have been better mentally prepared to deal with the seriousness and debilitating nature of the side effects.

Once I healed up from treatments, I had about 6 or so pretty good years. Some of the side effects had started about 3-4 years out but they weren’t too bad yet. And I didn’t really know what was happening. I just started having more tension in my shoulders and neck. I started getting this intense pain in my neck, head and face, but only every few months. I began to forget little things here and there. Multi-tasking was becoming a little more difficult. I found myself struggling more with attention, or getting hyper-focused on inconsequential tasks. I was moody AF at times and would cry for no reason. I had a hard time feeling connected to the real world.

I started managing these one-off….seeing the chiropractor more regularly; started yoga, Pilates, and massages, began oxycodone when needed for my head and neck pain episodes; started acupuncture; and started seeing my therapist again. The massages started increasing to weekly. Then twice a week or once a week, 2-hour session. But nothing was helping. In fact, the head and neck pain episodes were slowly becoming more frequent despite all the time and money I was spending to do all the right things.

I was beginning to feel tired more often from things that didn’t used to wear me out. After work, I’d come home to take a nap. Then I’d spend the weekends sleeping to try to feel recovered from the week.

Through many doctors visits I learned I was anemic and that I was developing hypothyroidism. So I thought, ‘Good! These are easy enough to treat! I’ll feel normal again soon.” And the medicine and iron infusions helped, but they didn’t cure me.

Then I began getting sick. It started as just a bad cold once a year, then slowly crept up to 3-4. Then it developed into full blown pneumonia. And then pneumonia again the following year, juiced up with a side of Epstein-Barr and then shingles. Oh wait, let’s not forget that pesky tooth infection that meant I’d need a tooth extraction.

Are you tired yet from reading this? You should be, because it’s exhausting.

This is my life now. Managing these diseases and side effects. (And the medical insurance denials that go with them). I’m getting better at it. I know more of my physical and emotional limits. I know when I need rest, when my neck is getting fatigued, what activities are going to cause more tension (so many things) and when something is too heavy for me. I see doctors every week. If I’m proactive, I feel a bit better and I’m more functional than I’d otherwise be. But I don’t feel back to normal. I feel damaged and incapable. I get a brief day every few months, or an hour here and there where I feel normal and I soak it up.

I’m beginning to accept it. I’m less angry about it. I’m less apologetic for it. I have fewer days of sadness and grief for my old life and wellness. I find little ways here and there to find joy, or feel whole. I hope I can get more of these because I’m honestly still in a dark place, behind the veneer of daily life that I make the most of. When I have the time to be still and reflect, I still feel disassociated from how I show up daily for my family and friends.

This has all taken a serious emotional toll on me. Which goes back to my main reason for writing this post: oral cancer is a serious lifetime disease and I think patients should know that when they start treatments, or very soon afterwards. False hopes can be worst than the actual reality. I’d rather know what’s in store for me so I can mentally prepare. And if things end up better, then there’ll be an overflow of gratitude. If I’d known, I think this would still be hard on me, but I also think it would be easier emotionally than it has been. I also might have better understood the symptoms earlier on and gotten appropriate treatments. I might have saved myself thousands of dollars and financial stress trying to figure it out.

I do think hospitals and doctors are figuring this out. They are beginning to treat the whole patient and not just the tumor. But there’s more we as patients can do to inform them of what we need.

I am now a volunteer at a hospital where there are opportunities for me and other patients to give feedback about experiences in the hospital. The sessions are ad hoc so I can do them if I’m well enough and because it’s a hospital, if I committed to a session and then the day comes and I’m not well-enough, then they are understanding. I don’t have to feel bad that I can’t make it. Being able to do little things like this has helped me feel useful and to also help shape the care future patients receive.

I have been an Imerman Angel for years and have worked with at least five women going through treatments for tongue cancer. I am grateful to support them. I haven’t set these longer term expectations with them before because I’m only now realizing some of this. But I hope to be able to do so based on the individual, as they are ready to hear it. And to be clear, I am the first person to say that just because this is how it affected me doesn’t mean you’ll be the same. I know many people who haven’t had the same long-term outcomes. I hope that others don’t have to deal with any of this.

I worry many people reading this will think I’m just victimized, or want to play the martyr. Who knows. Maybe I am. And that’s ok if I am. I guess I’m ok with that. Because I am dealing with a lot and people have to process tough situations in their own way. I also remind that it’s easy to judge if you haven’t been through it yourself.