Seizing wisdom from an illness
By NANCY PARADIS
Published January 15, 2006
I know a number of readers have questioned why the Action column has been appearing under a different byline.
On Friday, Dec. 9, my life was turned upside down by the discovery that I have a brain tumor. The following Monday, I had surgery at H. Lee Moffitt Cancer Center in Tampa. The surgery went extremely well, and the surgeon was able to remove 90 percent of the tumor. I have enrolled in a clinical trial being conducted at Moffitt.
The tumor, officially a glioblastoma multiforme, is rarely cured with surgery, radiation or chemotherapy, so researchers are trying to find new drugs to improve treatment. The study I have enrolled in will use an experimental drug called talampanel. At the same time, I will receive the standard treatment for this disease, which is external beam radiation along with the chemotherapy drug temozolomide, which has been found to increase survival rates.
On Tuesday, I will begin daily treks to Moffitt for six weeks of radiation to the brain. At the same time, I will be taking both drugs by mouth, a big plus as far as I'm concerned. After that, there will be a number of four-week maintenance cycles, during which I will take the drugs only, albeit on a different schedule. I can drop out of the trial at any time, or I can be taken out if side effects become too severe or the tumor shows signs of growing. I'm not dwelling on those possibilities at present.
I will be on leave for a while, but in keeping with the Action column's purpose, I would first like to pass on what I have learned about facing a devastating diagnosis and being a health care consumer. So here, in no particular order, are things to keep in mind and actions to take to help manage a health crisis.
- As soon as I was able - in my case only days after surgery - I did an Internet search for my diagnosis. The news was grim. Fortunately, the only thing I remember from my statistics class in graduate school is that statistics apply to populations, not individuals. We have no control over what life deals us, including illness. We do, however, get to choose how we confront life's challenges. I am thus facing my illness and the tests that lie ahead with a positive attitude and hope. It helps that I have not only great faith but the support of family, colleagues, friends and my church. For this I am deeply grateful. I know not everyone has this.
- Like many people, I have never been comfortable with asking for help, even as I enjoyed giving it. My illness has brought about a drastic change in this regard. Ask for help. Not only will you need it, but you also will be helping those who are offering it.
- The information on the Internet ranges from useful to dangerous. Many of the "cures" being touted are anecdotal and don't necessarily apply to anyone but the person(s) reporting them. Ask yourself: Can they be backed up by scientific studies? Have they been replicated? Likewise, check the source of any information you find. Is it credible? How old is the information? Strides are being made in managing diseases, including cancer, at a rapid clip.
It is normal to look for claims of cures. Keep in mind that the Internet is rife with snake oil salesmen whose only goal is to make a quick buck by taking advantage of your fear and/or desperation.
There are no gatekeepers for what is posted on the Internet. We, as consumers and seekers of cures, have to become filters of the information we find on it.
- It is important to have an advocate for your adventure with the health care system. This means taking family members or friends to your appointments with doctors, at least the initial ones. It is normal to hear selectively, particularly when faced with a devastating diagnosis, so it's imperative to have another set (or even sets) of ears to listen to what the doctor says. There's usually so much information being hurled at you that it's impossible to assimilate it all. Other people may also think of additional questions to ask that can help you make decisions if you're presented with different treatment options. My neuro-oncologist at Moffitt patiently fielded questions for an hour and 15 minutes that I and six family members and friends had during my first consultation with him. During subsequent visits, my entourage has shrunk, but I continue to find it helpful to have at least one other person with me.
If you can't take family or friends, at least take a tape recorder so you can later review what was said. Trust me. You will hear things you didn't pick up at the time.
And speak up. If you don't understand the information that is being presented, ask questions until you do.
- Once you find out what your options are, take the time to think about them and discuss them with your personal medical team: family and close friends. In most cases, delaying treatment for a few days or even longer will not affect your prognosis, so try to avoid making fear-based, hasty decisions that might end up not being the best for you.
At a certain point, you will have to make a decision. After first ignoring the information I was given about my treatment options - it was simply too much to wrap my mind around at the time - I read and reread the information, discussed it with family and friends and then made my decision. I am not spending time second-guessing my choice, which does not mean that I have closed my mind to any additional information that comes my way. There's a fine line between trust and doubt. Crossing that line can lead to fear or denial, neither of which is helpful. Getting to the point of trust, based on information and knowledge, is in itself healing.
- Find out about any patient assistance programs and social services offered at your hospital or treatment center and how they may help you.
- Ask how your doctor prefers to be contacted for the questions you will inevitably have: By phone? E-mail?
- The doctor's nurse and physician's assistant (if there is one) are vital members of your medical team and often serve as the first line of defense for any questions you may have. Don't hesitate to turn to them as resources. Keep in mind, however, that they have many patients, so don't bother them for every little twinge you may have.
- You will be told what side effects to expect. Make sure you understand which symptoms you can safely ignore until your next visit and which ones may require more immediate attention.
- Books are available that offer advice on being an informed medical consumer. Your local library or bookstore should have some.
- The paperwork generated by an illness can be almost as daunting as the illness itself. Even if you don't feel like it, it is important that you, or someone else, establish a system for dealing with it. This paperwork can comprise informational brochures, treatment schedules, billing information from your insurance company, hospital and providers, and more. Much of it will be duplicated. Assigning bins or folders for the different types of paper that will flow into your home can be a way to start creating an orderly system for handling it. Being able to lay your hands on important information sure beats the stress of frantically searching for it. So regardless of how you choose to keep tabs on it, just make sure you do.
- Keep important documents, such as insurance and prescription cards and any other information that you're likely to need when you go for your medical visits, in an envelope, folder or binder so they are always together and easily accessible.
- One of the most helpful things a friend did for me was insist I go to the Social Security Administration and fill out disability papers. There is a lengthy waiting period for disability, so should you end up needing it, the sooner you apply, the sooner you will start receiving payments.
- It's critical to take good care of yourself during a time of catastrophic illness and treatment. Eat well and sleep or rest when tired. You want your body and mind to be in as good a shape as possible for the fight ahead.
- None of us knows what the future holds, so don't get ahead of yourself. Another way of saying this is to live one day at a time, focusing on whatever pleasure you can get from it.
- Seek humor. The mind cannot hold two thoughts simultaneously. If you're laughing, you're not focusing on your illness and what might be.
Nancy Paradis can be reached at firstname.lastname@example.org