Ask Wednesday: Jack Cover on living with kidney cancer

Jack Cover and our editor in chief go way back, to their 25th Yale Class of 1964 Reunion. Unfortunately, they can't remember meeting before that, but maybe it's just their memories. Morris and his wife attended Jack and his wife's wedding in 1991 and have enjoyed many meals together, and Jack and Morris have enjoyed quite a few miles of walks.
    Within the last year we were saddened to learn of the recurrence of Jack's kidney cancer, after thirty years of quiet.
Jack agreed to help us let you learn about one person's experience living with cancer. [Our questions are in italics.]

How do you want to start, Jack?
    I have recently learned that with most cancers, once you are cancer-free for five years, you probably will not see a recurrence. Two cancers break this rule: melanoma and renal (kidney) cancer. However, thirty years is a long time, even for renal cancer. Look for me in The Guinness Book of World Records.

What's it been like living with cancer over so many years?
    My cancerous kidney was excised in 1981. There was no chemo and no radiation therapy. I had a tougher time with my appendix. After five years, I thought I was safe, so I don't know that I have "lived with cancer over so many years."
    Recently, I suffered with anemia for several years. None of the doctors could come up with a reason. Finally, a doctor ordered a CT scan, which showed the tumors. It was bad news, but I finally knew what was causing the anemia.

What's the toughest thing you're having to deal with now?
    A "tough thing" is that the recurring cancer does not seem to be treatable by excising the tumors, or by chemo, or by radiation therapy. It looks like I will be treated for renal cancer as a chronic condition for the rest of my life. The good news is that a number of medicines can control, or actually shrink the tumors.
    The toughest physical thing is the side effects from the cancer medicine. It is "miracle" medicine that just attacks the blood cells in the tumors. I do not have the truly nasty side effects that my wonderful friends enduring chemo and radiation go through, but I do have low-grade nausea, enduring fatigue, plus the joy of not knowing if I will be constipated or have diarrhea on any given day.
    The truly toughest thing is the burden I am putting on my beautiful wife. She has stepped up more than I ever dreamed.

How do you answer when someone asks you how you are?
    That question came up in our renal cancer support group. We agreed that the standard "I'm fine" is a bit of a lie and inappropriate. However, answering "I'm feeling okay, but I have renal cancer" is simply too much information for anyone but close friends.
    Several friends offered suggestions: "None of you would understand." "Well, the best news is I'm still above the grass." "Thank you for asking." "Let me know when you have a couple of hours—over a margarita." "What is your name again?" "Well, I'm alive." "I'm still kickin'." "Well, I'm not in a wheelchair drooling."
    Another suggestion was to say something using words and phrases like dyspnea, hypoxia, ischemic preconditioning, non-toxic male.
    Or that I carry my last test results around with me and attempt to read only the scary words to whoever asks.
    A colleague of mine who, when asked how someone was doing following a death or during an illness or similarly difficult time, would simply say, "Appropriately."
    My favorite is: “Better than I have any right to expect.”
    But, seriously, if someone asking the question is truly concerned, I think that an appropriate answer would be, "I am feeling well today," or "I am having a bad day."
    But then, it's interesting that answering "How are you?" seems to suffice much of the time.

What besides humor helps?
    Certainly the renal cancer support group sponsored by Duke Oncology is a big help. Exchanging information and experiences has been very helpful. The cancer support group at my church has spiritual elements that I find very helpful.
    I send status reports to friends all over the world. It is a great help to be prayed for by a large number of people from all over the world. My wonderful church has a group that knits prayer shawls. My prayer shawl at the top of the stairs that I touch every time I go downstairs or come upstairs, I feel like I am gaining love and support each time I touch the shawl.
    Of course there is the joy, when I put on weight, of my oncologist's celebrating and my cardiologist's shaking a finger under my nose. Likewise, my oncologist thinks that slightly higher blood pressure is a sign that the medicine is working and reason to rejoice. My cardiologist gets after my case for every point my blood pressure goes up. My goal is to have happy doctors. Maybe not in this environment.

Is there anything that you'd have done differently during your courses of treatment?
    Probably the main thing is to have done a more thorough online study of anemia and its causes. I never suspected that after nearly thirty years my cancer would have come back. Fifteen years in, after my last CAT scan, my oncologist had told me, "Go away, you are boring me." May we all bore our doctors.

Do you have any advice for others, especially if they've just been diagnosed with cancer?
    Probably the most important advice is that we all need to be our own best advocates. Do a study of whatever the problem is, know what to expect, and if things seem odd, challenge your health-care providers. They will probably be pleased, if you know what you are talking about.

What question (or questions) would you like to answer that we didn't ask?

What about the medicines you're taking?
    They weren't around just five years ago. My doctor at Duke was part of the study group on the medicine that I am now on. It was approved by the FDA only last January. I regularly think that had I been born 100 years earlier, I'd be dead five times by now. I thank God for medical research and my doctors.
    I guess I'll close by praying that each person reading this may have happy doctors.