In March of 2012 my husband, Bob, had a squamous cell cancerous growth removed from his neck just below his ear. It was a big, aggressive tumor. Though we know that millions of people are living with cancer, it was new to us. We were scared, and the fact that we are not young added to our fears.

After several weeks of recovery, Bob began a 30-day, five-days-a-week course of radiation. (No chemo!)We listened intently when the medical team told us what to expect. As an advocate and caregiver, I wrote everything down in my notebook, as I’d been advised to do.

We were told that the radiation would burn a large portion of the skin on the right side of Bob’s face and neck, it would become raw and some areas would bleed. Sores would probably appear in Bob’s mouth, which would become parched, increasing the possibility of dental problems.  Since his taste buds would be destroyed, most foods would taste like mush with a metallic chaser, taking away any appetite, resulting in a significant weight loss. We were told that Bob would experience fatigue like nothing he’d ever known, and that all of these symptoms would get worse before they got better. It could take weeks and perhaps months after the last radiation treatment before Bob would begin to feel better.

But these words had no meaning because we had no frame of reference for any of this.

A few weeks into the radiation treatments, the predicted symptoms began to appear and zapped Bob’s energy and his spirit. I tried to remain optimistic and struggled to make meals he might like. However, with only one salivary gland—the other had been removed during the surgery—Bob said that everything tasted like dirty socks. He just stopped eating. I finally gave up nagging about the need  for nutrition to keep his strength up and acknowledged that applesauce, oatmeal, soft boiled eggs, ginger ale without the fizz and seltzer water without bubbles would constitute a meal.

The emotional and physical fatigue set in about midway through his treatments. Part of it was due to the fact that every day we had to drive an hour from our home to the Oncology Center, spend 45 minutes getting zapped, meet with the doctors or nurses, and make the hour drive back. As the weeks wore on and the effects of the radiation accumulated, Bob became increasingly tired and uncomfortable, would fall asleep in the car and take a nap as soon as we got home. Some naps lasted two or more hours.

We looked forward to the last day of radiation, expecting to feel almost giddy; no more driving, no more radiation. On that day we thanked everyone and got in our car. All Bob wanted to do was get home and get to bed.

After the first week without the daily routine of going for treatment and seeing medical professionals, it dawned on me that we were on our own.  I became hyper vigilant.  Several times a day I asked Bob if he was feeling okay, checked his skin, applied the prescribed creams, reminded (nagged) him to drink water and eat something–anything, and made sure there was a blanket near his napping chair.

The radiation treatments had stopped, but the accumulated affects were still ravaging his body.  Bob seemed to get sicker and he was losing a lot of weight, just as the doctors had said.

We retreated inside our home and inside ourselves; we kept our families and a few friends up to date, otherwise we kept to ourselves. I worried and fretted and did little else. I went out for a few groceries a couple of times a week and, twice a day walked our dog, Parker, who continues to keep a vigil next to  Bob. Otherwise I stayed home.

During April and May we lived in a kind of gray haze, not knowing when, or if, we’d ever see some improvement in Bob’s condition. These were the days and nights when we each worried silently that all of this might be for naught.

By the middle of June, Bob began to look better, his skin was healing and he was sleeping less.  We went to a concert; it was the first time we’d been out since early March. Bob started to expand his menu to include sauteed eggplant, some fish and a few soups.  Just recently, Bob discovered that cold shrimp with mango chutney tastes pretty good.

Then late one morning Bob announced that he was going to Home Depot to get some parts to fix an air conditioner. What a surprise, I thought, but decided not to make a big deal out of his plans. About an hour laterhe returned with his repair supplies, the mail, and something very special for me– a lobster roll.  He knew I was missing them, but was willing to wait until we could enjoy lobster rolls together.  It was a beautiful way for Bob to tell me how much he cares and that he knows that this is a difficult time for me too.

Then he expressed some  real optimism when he said:  “I haven’t turned the corner yet, but I can see it.”

We’d been so much in our own personal darkness that we hadn’t noticed that the bulbs in two of the ceiling lights that hang over our kitchen island had gone out. One night after supper that consisted of a small serving of Chinese (carryout) shrimp and snow peas, Bob suggested that we might be able to see better if we replaced the bulbs.

He got out the step ladder and a package of new bulbs from our laundry room and set it on the island. Bob turned off the circuit. I climbed up three steps and unscrewed the old bulb, gave it  to Bob.  He set it on the island, opened the package, took out the new bulb and set it next to the old one. Bob got me a cloth so that I could wipe the dust from the fixture. When I finished, I gave him the cloth and asked for the new bulb. He handed me a bulb, I screwed it in. Bob turned on the circuit.

Nothing. The bulb was dark; probably a bad bulb, we thought.

Or, is it possible we got the bulbs mixed up?

Bob handed me the other bulb, I screwed it in. When he turned the circuit on the bulb lit up.

I giggled, Bob grinned, we laughed at our silliness and tossed the bad bulb in the trash.

He helped me down the ladder, we moved it so that I could replace the other bulb. It worked as soon as Bob turned on the circuit.
Our kitchen was flooded in light and so were we.

We continued to chuckle as I got down off the ladder, then we started to  laugh so hard we couldn’t stop. It felt great to laugh at something, even if it was ourselves.

Maybe, just maybe, we’re starting to see our way out of this darkness.

My husband had just been discharged from the hospital and I was terrified.

I would be responsible for helping him recover from surgery that had removed an orange-sized malignant tumor from the area around his ear and neck. The 24/7 envelope of comfort and medical care we’d received in the hospital was no longer. We were on our own. I was the care giver, the one who’d better know what needed to be done and what problems to watch for. As we started down the highway to our home, two hours away from this hospital, I looked at Bob. One side of his face was covered in a large bandage, he was leaning toward me on the other side of his face. He was partially asleep, woozy from pain medications. For several weeks preceding the operation we’d met with surgeons, oncologists, dentists, read everything we could find on squamous cell carcinoma. We talked honestly to each other about cancer, laughed and cried together. We’d done all of our homework. Well, almost all of it.

I’d forgotten to prepare for the moment when we’d drive away from the hospital, letting the life-line slip away. The fact that there are fine doctors and a good hospital in our town didn’t diminish my anxiety. I had to be responsible, but felt vulnerable. The muscles in my lower leg twitched, my eyes darted back and forth between watching the traffic and looking at Bob. Is he breathing okay? What if I hit a pothole and his head bounces against the window on the side where the bandages are? I know he trusts me to drive safely, but I had to be super vigilant. We made it home safely and familiar surroundings eased my concerns.

For the next few days Bob rested and took his meds. I hovered, nervously trying to anticipate his needs. There must be something I should be doing. Without taking away his pride and dignity, I kept track of the details, the schedule of meds and followup appointments. I watched him closely for signs of problems, though I wasn’t sure what I was looking for. Bob slept in his recliner so he could keep his head elevated. A soft pillow protected the bandaged area. We’d found the right foods that were easy for him to chew.  He was getting better, but still hadn’t been allowed to shower or wash his hair. I knew it was driving him crazy. So I asked Bob if he wanted a shampoo. (This is a man who goes to a barber, not a salon.) To my surprise he said yes. Then I worried about getting water on the bandages or that the surgical site might open and start bleeding.

Bob sat on a tall stool in our kitchen, his back against the sink, with a towel draped around him and another towel over the bandages. I filled a small tub with warm water, soaked a wash cloth with the water, brought it to his head and gently wet his hair. I put a few drops of shampoo in my hand and spread it on his hair. My fingers massaged Bob’s scalp, the back of his neck, taking care to avoid the area around his right ear.  He smiled and relaxed and laughed, finding himself in this situation. I rinsed and applied more shampoo, which wasn’t necessary, but it gave me the chance to do more massaging. It was for my benefit this time. I worked up a good lather. The touching and massaging brought us close and our laughter helped reduce my worries. It was good to discover that there was actually something  I could do that would make Bob feel much better.

This shampoo turned out to be good medicine for both of us.

As part of the research for my book, Trying to Live a Normal Life–The Biography of a Parkinson’s Disease Support Group, I spent the last six years  with 35 men and women– those with Parkinson’s and their caregivers.  I’ve been at almost every monthly support group meeting,  informal gatherings, and interviewed many of the members. They’ve come to trust me and have permitted me to write about their lives and their determination to lead as normal a life as possible regardless of the fact the Parkinson’s is stealing their independence. I set out to write this book to understand how they do it and what role their support group plays in helping them live with purpose and joy.

The short answer is that it’s all about mutual trust. (The long answer will be in the book.) Trust that people who participate in this group can talk about anything and others will understand; trust that no one will judge; trust that there’s always someone to listen even if there are no answers.

I completed the manuscript a few weeks ago.

At almost the same time, my husband and I learned that he has a malignant tumor  in his neck which will be removed soon. We’ve been blessed with good health for years and years. Now we’ve joined the millions of others who live with cancer or other chronic diseases–like Parkinson’s.

Since our Parkinson’s friends learned of Bob’s cancer, they’ve gathered around us emotionally and physically with attention, love, support and encouragement.  Because they know how to listen, my husband and I have become more comfortable talking about fears and what ifs. Our  Parkinson’s friends know how to take life as it comes and still laugh and remain fully engaged each day.  We have much to learn from them.

The last thing I expected when I met this group for the first time in 2006 is that these incredible, resilient men and women would one day become our very own support group.

Sometimes in life we find ourselves exactly where we need to be.