Head & Neck Cancer – A Personal Journey #13 – Reflections on Intimate Emotions

One of my writing resources is The Emotion Thesaurus, by Angela Ackerman and Becca Puglisi. The book details some 75 emotions. I experienced most of them at one time or another during the course of my disease.

I get compliments from friends and readers on my courage and positive attitude. I don’t think I’m doing anything out of the ordinary, except perhaps talking about my experience honestly. Even that began as a perfect storm: I had enough medical knowledge to understand and describe things, experience as a writer, and I was living with the disease.

As I’ve said earlier, I didn’t have a choice. If I wanted to survive, I knew that anything less than full cooperation with the program would only be harming myself. I guess you could call that positive attitude.

Now, two months after I finished therapy, I want this over. I am stronger, but I still have mucositis, dry mouth, poor taste, skin sensitivity and swelling (especially in the neck), and days when I just don’t feel well.  I don’t want to be thinking about fighting cancer every day. I’m tired of dreading eating instead of enjoying eating. I want a glass of wine! I want my life back.

Most on my mind is whether or not my cancer is gone. Did I go through all this only to find out I still have cancer and need further treatment? A PET scan will tell me that, but I can’t get it until three months after my treatment ends. If I get it sooner than that, before sufficient healing has taken place, I could have false positive results. I don’t want to have further treatment on the basis of false positive results. I have to wait.

“Oh, I’m so sorry!” well-intentioned friends and relatives say. “But you’re strong. I hope you’ll feel well soon.”

That’s not the way cancer works. With cancer, you start off well and treatment makes you sick. In order to get rid of your disease, you have to suffer side effects that aren’t nice and aren’t easy. You get worse every day, even after treatment is over. Eventually you get better, but it is slow and depressing.

In the beginning, I had a tender lump in my neck that I felt sure would go away with an antibiotic. I felt fine, but my doctors told me I wasn’t fine—I had cancer. If I didn’t fight it, the cancer would win and I would die. My initial emotional reactions were those of denial, amazement, reluctance, skepticism, surprise, and shock.

“This isn’t happening. It’s a mistake, or a bad dream. I’ll wake up and laugh about it.”

“I couldn’t have a life-threatening disease. I don’t even want to say the words.”

For me, the hardest part, the most stressful part, is making the right decision. This time was characterized by fear, anxiety, dread, guilt, nervousness, suspicion, uncertainty, and worry. Most of these emotions should be obvious, but why guilt, suspicion, and uncertainty? People in my generation grew up with an exaggerated sense of responsibility. I tortured myself with thoughts:

• What did I do to cause this? (nothing)
• Are those test results right? (they were)
• Surely there’s some mix-up! (there wasn’t)
• Should I agree to the recommended treatment? (I did and I think now I made the right choice).
• I don’t want to think about this now! (I have to.)

During this time I took a mild medication that calmed me down during waking hours and allowed me to sleep through the night.

After I decided to follow the recommended treatment plan, new emotions set in: acceptance, avoidance, and sadness. I put off thinking about cancer and didn’t do a lot of research. I wanted to avoid confusion between what I read and what my medical team told me to do. I engaged instead in a rush of activity.  

Okay, I have to do this thing, so I’d better get ready.

I scurried around, getting necessary (and probably some not-really-so-necessary-after-all) tasks done, distracting myself. I was pretty good at this, having practiced other times in the past by simply not allowing myself to think about unpleasantness and throwing myself into activity.

I couldn’t entirely ignore thinking about cancer, of course. Instead of letting such thoughts take over my life, I set aside specific times when I would be alone to give emotions and fears free reign. it might be before I got up in the morning, or at bedtime. in a chapel if that could be arranged, or just in a quiet room where I could be sure such private moments wouldn’t be interrupted. Often they took the form of conversations with God, which I see as a type of prayer. These moments were followed by purposeful activity until I felt ready to cope with life again.

When I started treatment, I was determined, confident, defensive, eager, and resigned. 

• I’ve made the best decision I can and prepared as well as possible.
• This is happening, so no use crying about it.
• I’m not going to like it (resigned), but the sooner I get started the sooner it will be over (eager). Life has been tough before and I’ve gotten through it (determination, confidence).
• “Don’t confuse me—I’ll decide who’s giving the best advice and follow it my way.” (defensive).

Then side effects set in, and I became annoyed, confused, frustrated, insecure, overwhelmed, my thoughts doubtful and conflicted:

• I’m doing everything they’re telling me to do, as well as I can. Why isn’t it working better?
• It’s taking every moment of my day! I can’t get it all done!
• Am I doing it right? Did I misunderstand the instructions?
• Should I take something for pain or tough it out?
• Is this minor pain in my chest an expected side effect, or some other medical issue I should call about? Or maybe just nothing of significance?
• Should I bother a doctor or nurse with this now, or wait it out another day? Maybe I’ll be better in the morning.
• Am I blowing this out of proportion? After all, everyone says I’m doing so well…
• I’m so tired!

When I wasn’t at the hospital for treatments I was home with Chris. He sensed when to leave me alone and when I wanted company. I didn’t need to be alone for emotional reasons, but just because I needed a lot of rest. I was happy to see friends and family, but afraid visitors might stay too long and tire me too much.

Later, side effects got worse and I started to feel anguish, suffering, disgust, hurt, and irritation.

• My whole life is this disease! I’m too busy, too unwell, and I’m tired of it.
• What new pain am I going to have tomorrow, and when is today’s pain going to stop?
• These burns on my neck, my dry and wrinkled skin, the disgusting flakey patches on my face…. I don’t want people to see me.
• Yet: These physical changes are like wearing a badge of courage. People can see what I’m going through.
• My breath must smell like something died in my mouth—probably because something IS dying in my mouth—diseased cells!
• “Don’t tell me what to do! I’m already doing my best. I’d love it if you brought over dinner and a bottle of wine, but I can’t eat anything except oatmeal, I can’t drink wine, and you’ve just made me feel bitter about that, thank you very much!”

Of course I knew people were doing their best to be kind and helpful, but I was frustrated that they couldn’t understand how bad off I really was. Then I was angry at myself for criticizing their kind attempts.

As I neared the end of therapy, I found perseverance and hope. Yes, the neck pain was worse every day, and I was eating less and less, but that last session was coming up.

• I’m almost there! I can do it!
• This will all be over and I’ll be well again.
• I just need to get through a few more….

Then it was over, that last day. I was proud, elated. I wanted to share the feeling, so I bought gifts—gift cards, donuts, books, hand-crocheted items—for doctors and staff members.

I’m all done, I won’t be seeing you again, but look how you all helped me get through this, share my sense of accomplishment, remember me and how grateful I am to you.

I didn’t say any of this, but it’s how I felt. I smiled and said, “Thank you,” and I hoped they knew I wished I could jump and shout but that’s just not me.

Then I was alone, but not really alone. It wasn’t loneliness I felt. Chris, my family, my friends were there—all I had to do was ask. I’d be seeing my team for check-ups, and I could call them anytime. But it’s not the same as having a daily chance to ask questions, complain, and brag about accomplishments to people who cared about me.

My biggest letdown, the most emotional time I experienced, was during recovery. I had fooled myself into thinking, no matter how often I was told otherwise, that now my life would go back to normal. Instead I was worse than ever. This recovery thing was not going to be so great either. It was harder and going to take a lot longer than I wanted to think about. I didn’t even have the satisfaction yet of knowing that my cancer was cured. Disappointment, defeat, depression, desperation, and impatience set in.

These feelings were transitory. I soon convinced myself this was just another hurdle on the way to cure. I was being too impatient. My strength came back first, and with it my ability to deal with ongoing side effects. Now, two months into recovery, I have started to pick up pieces of my life. I returned to my writer’s groups, board meetings, and volunteer activities on a limited basis. Although eating and skin problems persist, I am stronger, resulting in days that are longer and more productive. This gives me a sense of relief and renewed determination. I had been dragging my feet, but I have made hotel reservations and bought tickets for the planned trip to sing at Carnegie Hall in June. I may have to do less than I customarily do when traveling, and eating out may be a challenge, but I’m sure we will still have a wonderful time.

Throughout my cancer experience:

• I never lost my sense of humor. I think I inherited this from my father, an Irishman with a wry sense of humor and acerbic wit. He once scolded the occupants of an elevator he was riding in. He was on a gurney attached to oxygen at the time and said they were stealing his air. Like Dad, I joked and poked fun at myself—such as when the blueberries turned my tongue black.
• I remained curious, inquiring how each step in the process was expected to work. Writing this journal helped keep that in the forefront.
• I felt gratitude for many things: for the fact that my cancer had a high cure rate, that I was surrounded by loving and caring family and friends, that I had access to skilled medical care. There were times I was overcome with happiness and love by something done for me, like meaningful cards, messages, or gifts from people I didn’t expect. A close friend sent me a prayer box, a little note pad inside. On each page she had entered a personal thought or memory about things we had shared, one each day until the pages ran out.
• I heard from other cancer patients, or saw them in the hospital, some having a harder time than I am having, and often felt sympathy.
• Despite all attempts not to overthink my situation, I couldn’t stop fear from upsetting me from time to time. Fear was based on things I hoped would not happen, rather than things that were happening.

o   Will it hurt?

o   Will I have to have surgery?

o   Will I be disfigured?

o   Will I ever finish all the books I want to write?

o   Will I see my new granddaughter grow up?

o   Am I going to die?

 There were expected emotions I did not feel.

• Anger: I tend to deal with problems in a set order: Awareness, anxiety, acceptance, decision, and action. I didn’t consciously make a decision not to be angry about developing cancer, it just never occurred. Perhaps I was too busy to entertain angry emotions.
• Indifference: Indifference can be a coping mechanism. I have always believed that life gives a person good and bad, and the only thing we can do is enjoy it when the good comes and deal with it when the bad comes. Some might call this indifference, but I call it accepting fate.
• Resentment, envy, and nostalgia: More coping mechanisms. No matter how much I wished I could enjoy the taste of food again, I didn’t feel envious when I saw others eating or dwell with nostalgia on the days I enjoyed food. I only wanted my sense of taste to come back. Who or what would I resent? That would mean attaching blame somewhere, and that didn’t make sense to me.
• Regret: I didn’t find myself regretting past actions, only hopeful that I would be allowed time to do things that remained important to me. It is human nature to search our souls at such life-changing times, though. I realized I can be a better person than I have been, and I continue to pray that I will come out of this as that better person and at peace.

 Next post: Cure? Results of my PET scan will be announced before the end of May.