Recovery

 “The long black skirt is classic, but the navy mid-calf with the paisley border print is dated,” Clare, my daughter-in-law, said. “Don’t be angry with me…”

With the ten pounds I lost intentionally last year and the twenty pounds I lost since cancer entered my life, my clothes didn’t fit anymore. For years I had saved favorite clothes that had gotten too tight, thinking I may fit them again someday. Well, “someday” was here! If they were ever going to be of any use, now was the time to get them back in my wardrobe; if not, it was time to get rid of them once and for all. I pulled them out of boxes in a back closet and tried them on. They fit, but were they fashionable enough? Were they suitable for a woman my age?

Had this grey linen suit I loved come back in style? Was it classic enough to wear again? Was it worth altering or only good for the trash bin? All my pants had wide legs and skinny pants were the style now. Can a woman my age wear skinny pants, or leggings? If so, how did I put outfits together? What shoes did I wear with the current styles? I had no dress boots at all, only snow boots.

I wasn’t good at this, but Clare was a fashion designer and I asked her for help. She thought she was being ruthless, but I ended up with more than I thought. Nonetheless, Goodwill was going to have to open an annex.

Ask any woman—one of life’s greatest satisfactions is putting on a great outfit, looking in the mirror, and thinking you look good.

It was the day before Easter. I had the first sign of tongue cancer at Thanksgiving, was diagnosed shortly thereafter, started cancer treatment at the beginning of the year, finished it March 1, and by Easter I was one month into recovery. That’s what the medical team called it.

Recovery (definition): Return to a normal state of health, mind, or strength. Yes, that’s what I wanted alright—nothing exorbitant, just to be normal again. I wanted to be rid of nausea and pain. I was tired of focusing my mind only on my health and crashing every afternoon. I was anxious to recover. I wanted my life back. But it was *)%$^* slow!

My doctors said I was progressing more rapidly than most patients, but not to expect to recover overnight. It was going to take a while. Radiation was a cumulative process. There was more to come, some new, some better, some worse, but slowly I would improve. Side effects could continue to occur even months later. Since I had done well so far, I expected my side effects would be minimal.

From the beginning I had tried to deny I had cancer, then minimized how side effects would change my life. I should have known better by now, but perhaps underestimating my disease was my way of coping with my desire to be well again. Why should recovery be any different? Like everything about cancer treatment, recovery is difficult but doable.

On my last day of radiation, a week after my last chemotherapy infusion, I had throat pain when I swallowed, no appetite, thick secretions in my mouth, mild nausea with food, and was able to eat only a limited diet consisting of mainly oatmeal, pudding, and Ensure. My neck was irritated and painful from radiation burns, requiring steroids, lubricants, and soaks. I had a rash from chemotherapy in addition to the radiation burns, my skin was dry and sensitive, with painful splits on my hands and feet. What little sense of taste I had was out of whack—everything tasted the same, salty, metallic, and bad. Swallowing was an effort and rather tricky. All day I followed a health care schedule, leaving little time for personal matters. By mid-afternoon I was exhausted.

In the first week post treatment, there was little improvement. My diet and skin conditions remained the same. I didn’t expect things to change in a week, so I was patient at this point, thinking I would start feeling better soon, perhaps even the next week.

During the second week post treatment I was disappointed but I told myself it was still early to expect significant improvement. I didn’t leave the house because it was too painful if clothing touched my burns. I developed pain in my left ear with discharge of a clear fluid. My otolaryngologist said the inflammation was due to inner radiation burns like the exterior ones on my neck. The ear soon got better with antibiotics and eardrops.

The third week post treatment was the low point of my entire treatment process. I faced the fact that I was still getting worse instead of better like I expected, and I had had enough. My mouth was coated with mucus so thick and nasty in taste it brought me to desperation. I reread the materials given to me on my last day of treatment and discovered to my horror that the mucositis could last three months. For the first time I didn’t think I could get through it. My tongue, gums, and cheeks were painful. At this point I was spending two hours a day actively treating my radiation burns, and mouth care entailed brushing and using three mouth care products four times a day, each session lasting an hour and a half. None of it seemed to be doing any good. I returned to oncology for an unscheduled visit to be sure I didn’t have something else going on, but no, it was just mucositis. Just! I thought. It seemed the straw that would finally break me.

It wasn’t until week four post treatment that I was able to add back a few foods, very slowly, sampling a bite or two once or twice a day. I didn’t get nauseous, but food still tasted bad. I got down little bites of meat, rice, vegetables, or bread if after chewing them I added water before swallowing, but I didn’t enjoy eating because the mucus was still bad and the taste unpleasant. I kept experimenting. The burns on my neck were improving, and I was only lubricating my neck with Aquaphor ointment now.

By my one month follow-up visit, my doctors still thought I was doing well. I was happy with the way the burns were healing, but still very disgusted with the mucositis and inability to taste and enjoy food. My tongue hurt, especially at the tip. I was only brushing and using Biotene four times a day now, since the other routines seemed to be doing more harm than good. I had more personal time once again.

Despite the continued side effects, I was gaining strength and improving slowly. I was able to enjoy Easter with my family. The whole family came to our house and I prepared brunch (with help!). I was able to nibble, taking a bite or two of ham and French toast casserole. I couldn’t eat the blueberry shortcake that seemed excessively sour, but I sat at the table with a plate in front of me and my family around me, and it seemed like a normal holiday. We colored eggs and had the first Easter Hunt for my two-year-old granddaughter. With caution, my energy level lasted through mid-afternoon.

It is now a little more than six weeks post treatment. My neck burns are still a little uncomfortable, but I’m able to wear soft clothing and get out in public again. My skin is what I would describe as “normally dry” now, with no more “snakeskin” or “splits.” My throat is still very dry and hurts when I swallow, especially in the afternoon and evening. I am gradually increasing activities: I’ve returned to two of my writers’ groups, board meetings, and I’m spending a few hours at the Historical Society as a volunteer. I just began walking an indoor track again to build strength.

I’m still eating oatmeal, but I’ve stopped Ensure. I still can’t eat acidic, strong-flavored, or overly sweet foods, like salad dressings, ketchup, or chocolate. I’m eating meat, bread, rice, potatoes, nuts, and vegetables in small portions. I still have no appetite, and the mucositis coating, tongue irritation, and taste are as bad as ever, so eating is still an unpleasant chore instead of enjoyable. Swallowing is getting stronger, and I can even repeat swallow—carefully.

We had a beautiful day last week, the sort of day we should be having every day at this time of year, but then again, this is Chicago. Chris and I got together with a friend to hike in a local forest preserve and explore the setting for my upcoming book. I had been there before, but it looked different without summer foliage hiding the remains of the demolished clubhouse and farm we had come to find. I’m still smiling.

So how do I feel about all this, right now?

Well, I wish I was better by now.

• I wish I could feel fully recovered tomorrow.
• I really want a Big Mac, a piece of pizza, and a glass of wine.
• I wish I could go to meetings in the evening and not have to struggle to talk between sips of water and a painful, dry mouth.
• I wish I wasn’t distracted by fatigue late in the day, and could spend a full day on normal activities.
• I wish my throat didn’t hurt and I could enjoy eating again.

On the positive side—

• I’m happy to be well enough to return to activities I enjoy: family, writing, volunteer and board activities.
• Pain and nausea are no longer interfering with my life, although they remain to a small degree.
• I can swallow and eat, but not yet enjoy, some food, and my skin is almost normal again.
• I don’t “crash” physically as early or as often.
• I’m starting to think about scheduling social and marketing events again.
• I gave a short reading at an annual writers’ public reading, and committed to appear at Printers’ Row in Chicago in June.
• My calendar has more than medical appointments. It has things I am looking forward to.
• I have a new (old) wardrobe!
• I feel I accomplished something big and worthwhile.
• I feel I met a challenge with positive attitude and grace.
• Three immediate goals I now feel I can tackle:
  • I will see that my blogs about this journey through cancer are available in book form.
  • I have already started to review the historical mystery book I started before cancer so I can finish it!
  • In early June the chorus I sing with will be performing at Carnegie Hall.

Whatever it takes, I will sing at Carnegie Hall, I will publish a book about my journey through head and neck cancer, and you will be reading more historical mysteries about my hometown. I will not let these opportunities pass!

Next Post: Emotional Aspects