A Caregiver's Role--Then and Now

The role of a cancer caregiver is dependent on the patient’s survival time—a fact I try to keep in mind when offering advice. When I wrote Cancer Journey: A Caregiver’s View from the Passenger Seat, I was new to the job and unfamiliar with the territory. Since 2002, I have become, simply by virtue of my husband’s longevity, somewhat of an expert on caregiving.

Immediately following diagnosis, I was just trying to keep my head above water—without a plan to save myself or rescue Jim. I was frantically treading water trying to keep us afloat and not be sucked down by the undertow. Putting one foot in front of the other, I painstakingly stumbled through the cancer maze.

My job has changed as Jim’s disease has evolved—responsibilities ebbing and flowing with the course of the cancer. Caregivers wear many hats—cheerleader, researcher, patient advocate, dietician, bookkeeper, nurse, psychologist, pharmacologist, spiritual advisor, watchdog, coach, chauffeur, physical therapist, cook, prayer warrior, and pill pusher. Which hat depends on the needs of the patient at a particular time. Tasks change with the condition and status of the patient.

For the most part, caregiving is much less stressful than in the early years of our journey. Jim has been in treatment, chemotherapy or radiotherapy, at least eight times. Each time he was in treatment, I resumed my role as chauffeur and nurse. In the early years I didn’t leave his side during infusions. If it took seven hours, I was there—reading, writing, or sleeping. Lately, depending on the severity of the chemo, I don’t find it necessary to be with him every minute.

Hospitalizations remain exhausting but easier now that I speak Medicalese. Having learned the language, I am better able to communicate with physicians and staff. My role is clearly delineated and I take comfort in the regularity of the hospital schedule. I can sit at the bedside—a hand-holder, prayer warrior, cheerleader, and, when necessary, patient advocate. Someone else prepares meals, administers baths, and dispenses medications.

At home, Jim has assumed some of the duties that fell to me in the beginning. He does his own injections and dispenses his own medication—which may not sound like much but saves me fifteen or twenty minutes a day. He also orders his meds and haggles with insurance companies.

When he is in remission, my job is to keep him there. I research complementary methods, fix nutritious meals, prepare protein smoothies, vegetable juices, and try to reduce stress. I encourage him to engage in activities he enjoys (coaching, FCA, church, ball games) and eliminate stressful activities and events when possible. Weather permitting; I accompany him on a two-mile power walk.

I still go with him to doctor appointments and most scans—but not every one. However, I always am present for scan results. Even the most seasoned patient, should not endure that waiting alone. Yes, I still experience scanxiety but not quite as severe as before. I’ve learned that an “iffy” scan doesn’t mean a recurrence, that a recurrence doesn’t mean certain death, and that a biopsy isn’t always positive. I know that statistics are misleading, and even meaningless, when applied to an individual case.

One thing has remained the same from the day of diagnosis through the second primary cancer and the five cancer recurrences: When you love someone with cancer, the battle is primarily a mental one. I still fight fatigue, worry, and fear, but I am stronger than I believed I was. The human spirit is indomitable.

Test Anxiety

November will mark ten years since we had the first of what would become a long string of anxiety provoking diagnostic tests. You might think that by now I am an expert in managing the stress surrounding these scans. You think wrong.

I have always been plagued by test anxiety, but careful preparation kept the nerves in check. Even now, with my school days long past, I awaken in a sweat from nightmares in which I neglected to study for some big exam—a scenario that never happened in real life. I was far too motivated by fear of failure to let that happen.

Now ACTs and SATs have been replaced by CATs and PETs. Unfortunately, studying does nothing to alleviate the anxiety preceding these tests. There is no way to prepare for this kind of test—and there is a lot more riding on the results.

Tomorrow we will walk the four blocks to the oncologist’s office for our two o’clock appointment. If we are lucky, the nurse will call us back to the inner sanctum by three. I’ll work on my crossword puzzle or read a book while listening for the doctor to approach the room. More than likely he will not yet have looked at the scans. I may hear him on the phone discussing results with the radiologist—usually bad news if it requires discussion. Finally, he enters the room. After two hours, or more accurately, two days of waiting, my stomach is upset. What will the verdict be? New Growth. It's back. We see something suspicious. Or those most welcome of words: All clear.

Will we pass the test? God only knows.

Scanxiety Revisited

Since my husband’s original lung cancer diagnosis in 2002, he has had more scans, tests, and biopsies than I can count. Being an old hand at the process and the anxiety surrounding each test—pre and post—I thought knew everything there is to know about scanxiety. My latest experience proved me wrong.

In July, we were elated when the CT/PET scan indicated that 2 months of grueling chemo had reduced the tumor load by 70%. After a short break, Jim repeated the same regimen for another 2 months after which on Monday, September 12, he had a CT scan.

For the past month, I have been down in the dumps--tired, lifeless, discouraged and unproductive. I didn’t have to search far for the source of my mood—a few rejected periodical submissions, a series of bad news from our f.a.i.t.H. group members, the tragic death of a friend’s granddaughter, some family problems, earthquakes, hurricanes, floods, the anniversary of 9/11—all legitimate explanations for my bad mood.

On Friday, when we realized that the oncologist and radiologist in Houston had not yet received the scans which were supposedly FedExed on Monday, I fell apart. My anger required a target which happened to be my poor beleaguered husband. “Why didn’t he follow up earlier in the week to be sure that the scans were mailed and received?” “Would anything get done without my nagging?” After a long-coming melt down, I realized how anxious I have been while waiting for the scan results.

I didn’t think I was anxious about the scans; after all, the course of action is pretty well decided: If the tumors have shrunk or remained the same, he continues with another 8 weeks of the same chemo. But I can finally admit I am terrified that the tumors will have grown—that the chemo is no longer effective.

I can’t believe what a revelation this was. How could I fail to recognize the very signs and symptoms of scanxiety that I describe in Cancer Journey where I warn new caregivers and cancer patients that “anxiety can often masquerade as depression.” Maybe I should re-read the book I wrote.

Tomorrow we should get the results of the scans, just in time to start another round of chemo on Tuesday—if the scans are “good.” No wonder I’m depressed.

The Witching Hour

This hour prior to our meeting with the oncologist is comparable to Washington Irvings witching hour--filled with fear,anxiety, and spooky spirits whispering, "Be very afraid."

For the first few days of our stay in Houston, I am able to distract myself with food and books and crossword puzzles. But then the inevitable, unavoidable hour arrives. The walk to the doctors office, the wait in the "waiting" room, the interminable minutes back in his office waiting for him to walk through the door. Hands shaking, heart pounding, I will try to engross myself in a novel but even that won't stop my mind from wandering.

I really have no idea whether the news will be good or bad; experience has taught me that my expectations frequently differ from the reality.Jim always expects the best; I pray for the best and try to prepare for the worst.

I know the Bible verses and believe me I am drawing on them: He who is in you is greater than he who is in the world. I have not given you a spirit of fear... . Satan roams the earth like a roaring lion seeking whom he might devour. But "The spirit is willing but the flesh is weak." My body just seems to take over with the conditioned fear response.

Almost time to leave.