The formal diagnosis of ovarian cancer was confirmed after seven hours of surgery at Boston’s Brigham and Women’s Hospital. Prior to receiving that devastating news, we were in the land of possibilities, probabilities and suspiciousness in large measure due to the inconclusiveness of blood tests, ultrasounds and CT scans. Cancer never strikes at a good time, but for us the surgery occurred at a particularly poignant moment, it was our twentieth wedding anniversary.
For the next five and a half years, Sandra and I struggled with hope, disappointment, fifty hospital admissions, two other major surgeries, countless minor procedures, and two changes of physicians. And throughout these years, until her death, we had to function as a family, work, pay bills, go to school, be effective parents to our two teenage sons and assist our aging parents and a disabled sibling—in other words, live life. Additionally, for significant periods during those years, I became a caregiver.
In the ten years since Sandra’s passing, I have been consulted by friends and family who are going through similar experiences. Most recently, a business colleague told me that his wife just had surgery for ovarian cancer and I started sharing with him my observations about a husband or significant other’s job when a loved one is stricken with cancer. Those conversations led me to prepare this article on ten steps for effective caregiving. While most of my examples are from ovarian cancer, I think they are applicable across the spectrum of diseases that make a significant impact on the family constellation.
STEP #1 EDUCATE YOURSELF
Being an effective caregiver is a proactive job. It is imperative that the caregiver becomes an expert on the disease, particularly when the person with the disease is physically and emotionally drained from the diagnosis and treatment. This means reading the consumer oriented literature from the various relevant organizations such as the National Ovarian Cancer Coalition, The American Cancer Society or the National Institutes of Health, plus reading the professional literature.
Some of this literature is available on the general search engines such as Google or Yahoo, but it is also useful to try the sites medical professionals use such as MEDLINE and MEDLARS. In some instances, relevant articles may only be available as abstracts online so to read the full text it will be necessary to go to a hospital or university library. My experience has been that librarians are exceptionally helpful in assisting you to acquire virtually any article.
Understanding these articles will be a new challenge. Initially many of them will, because of their technical nature, appear to be gibberish. However, within a few weeks of starting this self-education project the articles will start making some sense. As important as the articles themselves might be, knowing whom the authors are is equally important. The articles will provide a crucial way of identifying those physicians who are doing the cutting edge research on the disease. More on that later!
A final way to educate yourself is to attend professional meetings or at least obtain the professional meeting abstracts. The reason for this is also to identify, meet and talk with the cutting edge researchers so that you will have resources for second or third opinions or perhaps to select a new physician.
STEP #2 BE ASSERTIVE (THIS IS THE TIME FOR SERIOUS CHUTZPAH)
Do not be a passive recipient of care. Ask questions, consider alternative approaches, and get second opinions. When someone you love is receiving care for a serious illness, they are often in a dependent and weakened state and the caregiver is the advocate. Effective advocacy is not about winning a popularity contest for most compliant patient, but rather always finding out what is in the best interests of the sick person.
Physician loyalty is good, but never put that ahead of the main objective; that is getting the best quality care for your loved one. For example, at one point we consulted a highly regarded professor of gynecologic oncology who gave us advice which, if followed, would have shortened Sandra’s life by 15 months. It was only by seeking a second and third opinion did we learn that he was simply ill informed about the particular therapy. In our situation, the second opinion was from an oncologist 400 miles away and the third from someone 1500 miles away. So, a willingness to go the extra mile, literally and figuratively, is an essential step in getting good care. Illustrative of this is the experience of a friend and neighbor from Florida who had prostate cancer and went for consultations in Miami, Baltimore, Boston and Rochester, Minnesota before deciding that the right place for him was the Mayo Clinic in Minnesota.
In another personal example of assertiveness, I am reminded of a Friday evening, when in response to my wife’s severe pain, the oncologist ordered morphine for her which was later delivered by a home health nurse. Within sixty seconds of arriving at our house, the nurse had placed the box of syringes on the table, told me that I should use them as per the instructions inside the box and “have a nice weekend.” I stopped her as she was reaching for the doorknob and asked if she would show me exactly how to use the preloaded single dose syringes (up until this point, I have been filling syringes from vials). She explained it was very simple: ”Just open the container and use it.” I demanded that we examine the new system more closely and it turned out that it was not all that simple. Indeed, the nurse eventually admitted that she could not understand the instructions in the box. Next she called the home care pharmacist who also had to read the instructions and together they figured out the mechanism for using the system. Finally, over an hour later, the home care nurse was ready to train me on using this new system. If I had been compliant, Sandra would have been frustrated, angry and in needless pain while we waited for yet another house call in the middle of the night.
Assertiveness is also making phone calls to strangers, particularly researchers, who may be working on something you want to know about. I have done this numerous times and always found that a polite and honest conversation about a loved one’s health will be well received.
STEP #3 UNDERSTAND THE THEORY OF DIFFUSION OF INNOVATION
The concept of diffusion of innovation is that new clinical treatments are not uniformly adapted throughout the health system. Typically, there are centers of innovation, early adopters of innovation, mid-term adopters and eventually late adopters of innovation. Some of this has to do with economics and some of it has to do with the pace of information being transmitted through professional channels via the literature and meetings.
Since time is both your best friend and worst enemy, it is imperative that caregivers be knowledgeable about what is being developed. Often years elapse between the first stages of research and the time of publication of research results. Consider the history of Taxol. Today Taxol is a first line drug for breast and ovarian cancer. Its long and complicated history began in 1962 when the first samples of the pacific yew tree bark and needles were collected. Twenty-two years later, in 1984, after an enormous amount of research, it began its first Phase I clinical trials to see if it was a useful drug. It took another nine years, until January 1993, before it was generally available for other than experimental purposes. It then took another period before it found its way out of the academic medical centers to the corner oncologist.
It is imperative to know that it may take several years merely to prepare an article for professional publication, have it go through the peer review process and then have it published. For the proactive caregiver, knowing what is on the horizon provides a leg up if it is necessary to go for some new medications or procedures that are not available in your community. For example, in my wife’s case, we had been following the saga of Taxol and were ready to jump on it as soon as it was released. In fact, thanks to the hard work of Dr. Donald Higby at Baystate Medical Center in Springfield, Massachusetts, a teaching hospital associated with Tufts Medical School, Sandra was the first person in Western Massachusetts to take the drug one day after its release.
STEP #4 RECOGNIZE FEAR, ANGER AND FRUSTRATION
Anyone who has a diagnosis of cancer is fearful and often angry. Why me? is a common question. Some people with cancer also blame others; “If there wasn’t so much stress in my life, I wouldn’t now be sick.” My experiences suggest that all you can do is validate that fear or anger. Trying to be logical or scientific does nothing but add fuel to the fear or anger. If possible, some type of therapy, particularly support groups for the entire family, should be considered.
In most instances, the caregiver is equally fearful and angry. While it is clearly useful to share these emotions with therapists and in a caregiver support group, one should be more circumspect in sharing it with the victim. Frankly, they have enough on their plate dealing with their own issues. As another friend put it simply, “The caregiver has to be the rock, the foundation of the family, and who needs a crumbling foundation?”
STEP #5 FORGET STATISTICS
There is only one statistic that counts, whether you are alive or dead! Articles and physicians like to talk of survival rates, but these numbers are not relevant since one’s only concern is not the cohort’s survival but rather the individual’s survival. So even if the five-year survival rate for ovarian cancer is 15 percent, what difference does it make if you are not one of the survivors?
STEP #6 STAY STRONG EMOTIONALLY AND PHYSICALLY
Being a caregiver is tough work. Most of us find that we still have to do our outside jobs and we’ve picked up a full-time inside job. Obviously when Sandra was feeling well, the job was fairly undemanding. On the other hand there were times, particularly in the last 18 months, when being a caregiver was exhausting and frustrating work. My days and nights seemed to be endless with oxygen equipment that needed filling, suction pumps that needed tending and total parenteral nutrition (TPN) gear that needed injections, hooking up, cleaning, and computers that forever needed programming. Even when we went to the hospital, I found myself part of the care team, often being involved in the changing of TPN equipment from our home care computer system to the hospital’s system. It is also hard work to be someone else’s advocate, but we have to always remember that our advocacy may indeed make the difference between life and death!
Under no circumstances should you be a hermit. For me, as for many men, work became an important social outlet. Initially I was afraid to tell people what I was going through, but as I opened up to a few colleagues, I found them to be an enormous source of support for which I will be eternally grateful.
Finally, being physically healthy is as important as emotional health. I don’t need to spend much time on what we all know: eating right and exercise. Unfortunately for me, I would find solace in “comfort food” and be too tired to exercise. My only advice is fight for your own health—it is definitely critical for you and your family.
STEP #7 EXPLORE ALTERNATIVE AND COMPLEMENTARY APPROACHES
The history of Taxol is truly a story of alternative medicine. After all, what was the search that found Taxol about but examining thousands of plants to see if one of them might yield a possible answer? So there is much we do not yet know and a great deal of alternative and complementary medicine that may be helpful or at least comforting.
In our personal journey, we never stopped the traditional medical treatments but did go regularly to a Chinese physician who specialized in herbal medicines. Additionally, Sandra spent a week at Deepak Chopra’s Ayurveda Medicine center, regularly meditated and periodically had massages. Obviously, it is impossible to know whether any of this helped her physiologically, but I can attest to the fact that she felt it was emotionally important to her.
STEP #8 TAKE CARE OF THE PAPERWORK, WILLS, FUNERALS, ETC.
This is heavy lifting. Perhaps this is the attorney in me, but I urge all families to put their “business” houses in order. This means preparing wills and trusts if necessary and arranging all manner of end stage issues such as deciding who will be the health care proxy, what are the requests for heroic interventions and DNR orders, decisions on custody of children (in worst case scenarios) and finally funeral arrangements.
I do not wish to be morbid and my strongest wish is that we all live to the time we say in Yiddish, “biz hundert un tsvantsik” (you should be well till a 120). But just in case that does not work out, it is simply better to be prepared. When death occurs, the last thing in the world you want to be doing is rushing off to a mortuary and listening to a funeral director discuss the 20 options for caskets, liners, limos, services, etc. Take care of this rotten business at a more opportune time and then forget about it!
STEP #9 BE OPTIMISTIC/COMMIT TO THE FUTURE
There is absolutely no value in pessimism. It brings both you and your loved one into an unhelpful and paralyzing place. Many of us who are faced with these enormous challenges have found it helpful to take concrete actions that indicate this commitment. For example, I have seen people buy new cars, take long postponed trips, purchase new houses and, in our own case, finally, after more than a decade of vacillation, build a huge and beautiful addition to our 100-year-old home.
STEP #10 FIND A SPIRITUAL FOCUS
A saying that came out of World War II and most recently applied to Hurricane Katrina was “there are no atheists in foxholes or hurricanes.” The obvious point is that when we are faced with deadly situations, we are likely to look for support or solace in a higher spiritual order. Rabbi Harold Kusher in his best selling book “Why Do Bad Things Happen To Good People” addresses this question and concludes, as I understood him, that God’s role is not solving the problem, but being a source of comfort while we are going through our hard times. In my own case, this trust in a higher spiritual power provided a measure of solace, a focus for prayer and an avenue for my rage.
While life may not always be fair, the crisis generated by a serious illness does indeed provide the caregiver with extraordinary and very real opportunities to demonstrate love. The demonstration of love for another will provide a lifetime of rewards for everyone, but in order to maximize its benefits, the caregiver must learn how be effective for themselves and their loved one. My hope is that this article is a step (or perhaps ten steps) in that direction.