• I had 18 months to live.
• Chemotherapy was my best option and surgery was out of the question.
• Surgery was my best hope and chemo was a complete waste of time.
When you are the most vulnerable, the most terrified, and have the greatest hunger to be “taken care of” and told what to do, instead you must muster all your strength, research tirelessly, seek fourth and fifth opinions, and question everything.
Cancer behavior and treatment is still largely a guessing game. There is a standard “one-size-fits-all” conservative course of action offered by most doctors, and you will be directed down that path. Doctors rarely will present several options or admit that they don’t know what the outcome will be in your particular case. For the most part, I found, they presented a course of action as absolute gospel.
Unless you have a support team of family and friends, which includes people knowledgeable about cancer treatment; very good insurance; good transportation; and a fighting spirit, you are most likely to go along with what you are told and never challenge.
I had all of the above and yet mistakes and missteps in my care happened all along the way. Here are some lessons I have learned in my continuing battle with recurrent cancer that I hope will help you:
• Immediately after hearing your diagnosis for the first time, seek out the experts. Do not rely on doctors who are not specialists in your particular cancer. Get several treatment opinions. If you can, travel to the big cancer centers: M.D. Anderson, Memorial Sloan-Kettering, etc.
Because I was in shock, I let my longtime OB/GYN perform my initial cancer surgery. I should have had a gynecological oncologist surgeon.
• You will feel like you are racing against time and, in many cases, you are. But taking the time to understand your options — and there are several, even if you are told there aren’t — will give you power and control as you go forward.
• If you don’t feel that your doctor is your advocate, switch doctors. The first group from whom I sought treatment ran a huge operation and afforded me about 15 minutes per visit. I was truly on an assembly line and felt like Patient No. 52. I would receive chemo in a huge room filled with other cancer patients in various stages of agony, depression, resignation. The bus-station ambiance afforded no privacy or dignity. But I was terrified of “switching horses in mid-stream.”
When the chemo stopped working, I used that opportunity to find a new doctor. After talking to doctors in Cincinnati, Cleveland and Dayton, I found a doctor who runs a gynecological cancer clinic at Miami Valley Hospital. He spent time with me. He drew diagrams to help me understand what was going on. He went through each CT scan and PET scan step-by-step with me. He even gave me his home number and cell number. He showed, with every action, that he cared about my treatment and about me as a person.
• Ask questions constantly. Should you have internal or localized radiation, instead of wide area? I underwent six weeks of external pelvic radiation — which I was told was the standard of care — only to find out months later that internal localized radiation might have targeted my cancer more precisely and not damaged my entire pelvic region as severely. But I was not aware I had options.
If you undergo chemo, you will have your blood tested before every treatment. Exactly what are they testing for and why? At one of my lowest points, doctors feared I was having a heart attack. But it turned out that chemo had depleted most of the magnesium and potassium in my body. Taking these supplements immediately made me feel better, but — even though this is a fairly common side effect to monitor — I had no idea if my doctors were watching these levels.
• The Internet is your friend. It can be very harrowing to read about your cancer, your treatment, your odds of survival. But there is a great deal of help out there for you. If you can’t afford to travel to another city for treatment, there are organizations which will arrange free flights for you, arrange free lodging for you, etc. Unfortunately, they exist through donations and there is an ever-growing volume of patients needing their help, so you will have to get in line. But be proactive and seek them out.
• Billing mistakes abound with hospitals and doctors. Your health care providers have signed a contract with your insurance to accept a set amount for each procedure and visit. They are not supposed to come to you after accepting an insurance payment and seek the remainder if you have met your deductible.
Yet I am on the phone constantly, battling thousands of dollars in charges that I do not owe. How many people just pay the bill without question?
There also is a new tactic I encountered at many hospitals: Right before surgery, the billing department called and said they would give me a 10 percent discount if I paid my portion in full with a credit card. However, they calculated my portion as 10 percent of their “sticker” price, not the greatly reduced amount negotiated with your insurer. I felt taken advantage of, at my most vulnerable time, by the people to whom I had entrusted my care.
• It is not acceptable to respond “let me know if you need anything” when a friend/co-worker tells you they have cancer. They are raw, confused and have no idea what they need. Take action. Call or e-mail every day. Bring over a casserole. Offer to sit with them during chemo. Send them funny cards, magazines, DVDs. Let them talk and really listen. Do not lecture, do not tell them that they must “be positive” or grill them on what lifestyle habits must have led to this. Offer prayer. Always, always be upbeat and positive but don’t require the same from them.
• Never give up, never give up, never give up. At 2 a.m., when the chemo is killing everything inside you and you are in a hot fog of pain, resignation can be very seductive. You are tired, scared and sick, and the chemicals coursing through your veins also affect your emotions. But you must push through. Like soldiers facing a major battle, like Sully looking at the Hudson River from the window of his descending plane, like millions of people daily facing major illness, you can’t run away. Hold onto your faith, your friends, your will to live. Never give up.
Lisa Warren, former editor of The Journal, passed away July 23, 2010.