Dream New Dreams (8 page)

I turned to the hospital nutritionist for advice; she had years of experience working with cancer patients who had faced the same challenges. She had a wealth of information and tricks to get the calories in, and a lot of them worked. The program coordinator and oncologist also were very helpful in addressing the chemo side effects. In addition to an over-the-counter antidiarrheal medication taken every four hours, they recommended adding a prescription
antidiarrheal medication. Even with doses every two hours, Randy’s diarrhea continued at a dangerous rate. The next step was to add tincture of opium to the arsenal. Thank you, Blue Cross Blue Shield, for approving the prescription, because adding this third medication was the charm. Randy was able to stabilize his weight, and I breathed a sigh of relief. By the time he finished the treatment’s eight-week regimen, Randy had dropped 35 pounds and weighed around 147. His six-foot frame looked emaciated, but he had completed the treatment protocol without interruption. The odds were looking good for now.

I don’t recall Randy saying he missed the children during the time he spent in Houston, most likely because he had steeled himself to the separation. Plus, he believed that the sacrifice he made now would pay off by killing all the cancer and allowing him to be there with them as they grew up. He could keep the long-term goal in the forefront of his mind and not be distracted by the short-term pain. But I’m sure the children were never far from his thoughts. Our nanny, Amy, had made us a beautiful photo album of the children to take with us, and we flipped through it many times.

After the draining week in Houston caring for Randy, I would hop on a plane to spend a hectic and emotional weekend in Virginia with our children. Instead of our time together being some idyllic Hollywood scene where each moment was precious and perfect, I struggled to switch gears and parent three small children without any help. I’d been raised half my life in this small town, spending many summers at my grandparents’ house. Now as an adult I found myself lost in this little town. I didn’t know how to drive to places I’d been to as a child. I didn’t know what kind of child-friendly outings were available. To compound matters, I didn’t have time or
energy to look up things to do with the children during the time we were together. So I’d find myself worrying about how to manage their energy and have a meaningful and magical visit with them.

Our routine went something like this: after getting in from the airport late on Friday night, I’d pick up the children at my brother’s house Saturday morning, around eight a.m. The first Saturday I came by, the children were still in pajamas, but by the end of the two months, Bob and Jane would be standing in the driveway with the kids and weekend bags ready to go, a telltale sign that this arrangement was taking its toll on them as well. We’d stop by the grocery store together to pick up milk and something for dinner, then drive the two miles down the road to my parents’ three-bedroom house. My mother was usually gone during the day, taking care of her elderly parents at their house. My father was working in Richmond, Virginia. So it was just the four of us out in the country, in the peace and calm—or rather in isolation, which is how I saw it. My parents live off a busy two-lane country road lined by deep ditches that could swallow a car. With no other children to play with and nothing to walk to, we made our own fun.

Virginia has a mild winter compared to Pittsburgh: blue skies, highs in the fifties. Dylan and Logan could run around in the backyard while I held Chloe. Still, it was hard to find a rhythm like the one we had in Pittsburgh at our home. I felt off-kilter, unsure of what to do or where we could go. I’m embarrassed to say I felt overwhelmed, low on both physical and emotional energy. How could I feel that way when I missed them all week? When I loved being a mother and hanging out with my children? To compound my feelings of inadequacy, Chloe wouldn’t take a bottle from me. I was still lactating and she could smell the milk. She’d lie in my arms crying hungrily but rejecting the formula I was offering her.
I couldn’t nurse her because if I did, she wouldn’t take the bottle during the week, and that would make life difficult for everyone. Finally, her pathetic cries wore me down, and I called my sister-in-law to come over to get Chloe to eat. This scenario surely wasn’t part of my romanticized dreams of what the time with my children should be like. The pressure I placed on myself and the expectations of a perfect family time were more than I could live up to, and it brought me down, down, down.

Even though staying around my parents’ house was the easiest thing to do, it was boring—at least I thought the children would be bored. No toys, no crafts, no tricycles, no nothing like we had at home. Dylan and Logan didn’t ask for anything but to be together with me. It was I who had set these expectations of maintaining our normal, precancer lifestyles in an unfamiliar setting. Since the children woke up around six a.m. each morning, we had plenty of daylight hours to fill before bedtime at eight p.m. Often we’d explore the outdoors in the early morning. Then we’d go somewhere else for a change of scenery and an adventure. Now anytime we went somewhere it was like troop movements. I was weighed down with the baby in a carrier on the front, diaper bag with snacks and formula hanging from one arm, and two little hands holding mine. Just keeping up with the boys with a baby attached to my body took a lot of energy.

Once we went to the Children’s Museum of Virginia in Portsmouth (about thirty minutes away), and the boys enjoyed the various hands-on exhibits while Chloe enjoyed the toddler’s area. Another time we found a playground close to my grandmother’s house. One rainy Saturday, I took them to McDonald’s for lunch and to play in the play area. It seemed like an easy adventure until Logan lifted his open milk container to his mouth and soaked his
clothes, the table, and the floor. I could see the accident happen before it actually did, but I couldn’t intervene because I had the baby laid in one arm while feeding her with my free hand. It all seems so innocent, so simple a problem, but at the time, the incident was magnified out of proportion. My nerves and my psyche were raw, and the littlest things seemed to draw blood. I gave Logan my most disappointed-in-you look, yelled for the boys to get their shoes on, and stomped out the door with two sad little boys in tow.

I struggled to manage the everyday, normal demands of child rearing. I hadn’t learned to make things as simple as possible, like buying prepared meals at the grocery store or picking up takeout because there was limited food delivery in our area. Even after an exhausting day, I would push myself harder. For dinner, I cooked and then had to clean up the kitchen while trying to supervise the children. Chloe would sit in her bouncy seat or ExerSaucer while her brothers watched a cartoon on television. Afterward, I still had to give the children baths and supervise brushing teeth—activities that demanded still more energy. After baths and pajamas, the boys would pick out a book, and I’d read to each of them. The boys slept in one room: Dylan in the single bed, Logan in the crib. Chloe and I were in a room across the hall. Even though exhausted, I would still wake up every time the baby tossed and turned or made any noise, to see if all were fine. Then the sun would rise, and I would start another day sleep deprived.

The physical toll on me was apparent in the weight I gained during this period. But more visually striking and more painful was the eczema that flared up on my eyelids. Eczema is an inflammation of the skin that can be triggered by dry air, pollution, and stress. In my case, my eyelids were slightly swollen and the skin raw and painful. I couldn’t wear eye makeup at all, but would slather on Vaseline to
help protect the skin and calm the flare-up. The area would heal and the skin would become scaly and flake, only to erupt again, and the process would repeat itself. I remember Randy asking his oncologist if there was a medication he could prescribe to give me some relief, since we were thousands of miles away from our family doctor. He refused, saying I wasn’t his patient and I would need to contact a local dermatologist. As it usually takes six months to get an appointment with a dermatologist, I simply lived with the annoyance.

Regular exercise also took a back burner, but I got on the treadmill whenever I could. I tried to take the stairs instead of the elevator or escalator at the hospital. And on rare occasions, I would take a fast walk outside in the mild Houston fall weather. I was used to exercising at the gym twice a week, taking a yoga class once a week, and playing with the children. Pittsburgh is also a walking city where I would push the stroller to the library, playground, coffee shop, and even grocery store. In Houston, I didn’t have those built-in opportunities for daily activity.

For now, my energies were dedicated to my loved ones. They were my top priorities; my needs would wait. But it was a difficult balancing act, one in which I felt I could never please everyone. At the end of the day, I had to accept that I could only do my best; that would have to be good enough. Right now it was easier to separate Randy’s needs from the children’s. I could also dedicate myself completely to either when I was with them because they were physically separated. The real test came when we were back together in Pittsburgh after Randy finished his treatment in Houston. Then I would have to prioritize in real time with real and long-lasting consequences accompanying each choice.

T
HERE’S A PIVOTAL SCENE
in
An Officer and a Gentleman
where Lou Gossett Jr.’s character, Gunnery Sergeant Foley, breaks Richard Gere’s cocky, emotionally walled-off officer candidate character, Zack Mayo, by putting him through grueling workout after workout until Mayo finally can’t take any more. He can’t be an island unto himself, and he accepts the fact that he must change to grow as a person and to become a team player. He learns that being strong doesn’t mean doing everything oneself or that opening oneself up to love and expressing that love isn’t a form of weakness.

During my time as a caregiver, I came to identify with Zack Mayo. But instead of a hunky Lou Gossett Jr., life and cancer played the part of my drill sergeants, placing one burden after another on my shoulders. The load got heavier and heavier, and though I was stooped over with my back breaking, I kept telling myself I could carry on without imposing on other people or accepting their help.
I continued to mother Dylan, Logan, and Chloe and do all of the same activities, like taking them to the zoo and to the natural history museum. In my mind, I didn’t see time or my energies as part of a zero-sum game, so my intention to give the children the same amount of time while adding the tremendously consuming job of caregiver to my plate didn’t seem unreasonable. I knew it would be a juggling act, but I figured I would be perfectly able to nurse and care for Randy in Pittsburgh as I had been doing in Houston, even with the addition of the children tied to my apron strings.

Despite the help we had with the children during the day, I wasn’t doing a good job of dividing my time between them and Randy. Nor was I getting enough rest. The perfect schedule would have been to spend early morning hours with the children, midday with Randy, put the children down for their naps in the early afternoon, late afternoon with Randy again, cook dinner, and then resume care of the children until bedtime. Even being conscious of my time allocation, there were always variations in daily events—visits to the oncologist, children’s holiday parties, doctor appointments, or someone being sick. Looking back now, I can see I was on a collision course with reality. The paradox I missed at the time was that my efforts to care for my children and husband would be undone by exhaustion. My mistake was trying to live my life as it had been before cancer. The way I approached every aspect of my normal life would have to change dramatically.

Life sent me a serious wake-up call about the mess I was making. After four months of unrelenting giving, I finally hit rock bottom. It was a cold Friday in February 2007. Randy was on a 5-FU (fluorouracil) chemotherapy regimen via drip infusion. Some people experience mild side effects, but he was having a tough time with diarrhea and fatigue, along with reduced appetite. A minor cosmetic
result of chemotherapy was that his hair turned a coarse wiry gray. He rested in bed in the back bedroom during the day and in the basement at night. With his white blood cell count low and weight down to around 140 pounds, Randy couldn’t tolerate the cold, so we kept a space heater nearby to keep the room at 80 degrees. That particular Friday was no different from most. Logan and Dylan went to preschool in the morning, and Chloe was at home crawling about. As usual, I divided my time between the kids and Randy with the help of Amy and our babysitter, Laura O’Malley. Then at around ten o’clock that evening, something completely normal but utterly devastating to our fragile balance occurred. Dylan woke up with a terrible bout of stomach flu. Families go through this all the time. But in our case, Randy’s susceptibility to infection added a new dimension to the situation that I had not thought of or encountered before.