“Not Much Choice”

 Chronic Pain and Ills

Prepare for Mortality

Live Like You Can’t Die

 

Introduction to the Interview:

This post is an introduction to an interview, then an interview with a man named Mike whom I’ve known well for over 20 years. He suffers from chronic illness and chronic pain. A very useful book on some of the subjects covered in this interview is called “BEING MORTAL”, by Dr. Atul Gawande published in 2014. It outlines our society’s attitudes towards the aged and the disabled and our systems of caring for them. Another excellent, recent book is “THE PAIN CHRONICLES” by Melanie Thernstrom. It reviews the attitudes of society toward pain and the treatment of pain. This blog post deals with these issues of aging and medical infirmity including chronic pain and cancer. I am doing an interview together with a journalist, Cathy Zimmerman. We drove an hour to meet with Mike.

He greeted us at the door to his pleasant home in a neighborhood of east Vancouver, Washington. Mike is a 6 foot 5 inch tall tree trunk of a man. Aged 63, he is broad shouldered and appears robust at first glance. Upon closer inspection, I notice his face is somewhat pale and sweaty when we first arrive. He describes these spells as hot flashes due to a hormone secreted by his cancer cells. During our interview he periodically stands and stretches for awhile to relieve his back pain a little.

In the interview, he relates his transition from healthy young man to chronic illness and pain. We review his various conditions and the way they affect him and those around him, including his current wife and his first wife. He reviews interactions with the workman’s compensation system and his health insurance. He describes his coping mechanisms including the importance of the support of family, friends,  doctors and other medical care providers. He reviews some of the factors in what to look for in a doctor. The book Being Mortal analyzes doctor-patient communication and concludes on page 201 that the best style is one that Dr. Gawande refers to as “interpretive”. This style goes beyond the traditional “paternalistic” and “informative” styles and I believe describes what Mike looks for in doctors and medical care providers. Mike describes some of his previous and ongoing treatments including many operations. He relates the many obstacles and frustrations he’s had to surmount in his quest for a life worth living.

He is remarkably optimistic and resourceful. He is good-humored and articulate. He spent over 2 hours doing the interview, despite being in some constant pain. He provides insights that will be helpful to other people who also suffer chronic illness and chronic pain.  When Cathy asked him how he has managed to survive his numerous medical crises, he said, “Not much choice.”

 

 

INTERVIEW

40 years ago Mike was a healthy young man who loved to participate in many team sports and hunting. He enjoyed non-team sports with his friends. “I did a lot of dumb things when I was young”, he notes. He and his friends hugged the train tunnel wall by the cemetery as trains went through. They dropped under the tracks of the trestle of the bridge over the Missouri River onto cement supports when trains raced overhead.

He couldn’t imagine a life of illness and pain. At age 23 he developed blood clots in one leg with pieces of the clot traveling to his lungs. He has hospitalized for 3 weeks. “My wife was induced for delivering our first daughter when I was in the hospital. I was wheeled down the hall on a stretcher to be with her”. Even after that he couldn’t conceive that he would become chronically ill. “You’re pretty invincible when you are that age. I didn’t understand how serious it was until years later”.

Before our interview, he reviewed his health history with his 91 year old mother-in-law who lives with Mike and his wife. After doing this awhile, she said “Enough!”. The list of surgeries alone is formidable: 7 spine, 2 achilles tendon, 4 knee including 1 total knee replacement, gallbladder removal, shoulder surgery, kidney stone removal, exploratory abdominal surgery, and infusion of radioactive beads into the liver to fight the cancer.

His medical conditions include: blood clots mentioned earlier, serious injury to his back on 12/12/78, about age 27, spinal meningitis after a back surgery 20 years ago, an unusual type of cancer known as pancreatic neuroendocrine that he’s had probably for 10 years, pneumonia, arthritis, gallstones, kidney stones on 3 different occasions, shingles (1 year AFTER his shingles vaccine), chronic and severe lower back and cancer pain.

He hurt his back at work slipping on spilled chemicals. He fell 1 story onto his side and lower back area on a hardwood surface. 2 years, at least 12 myelograms (spinal canal X-rays using dye injected into the canal) and other tests later, it finally became apparent he had seriously herniated 2 discs in the low back area due to the injury.

PH: Tell us about your experiences during that time.

Mike: “I was not the same person. I was hard to get along with. I had little kids. I had some back surgeries after that. I had a lot of problems and pain with my surgeries. They dealt with it with pain medications; Percodan and Percocet. The surgeon was a real ass. If you weren’t well or better, he’d yell at you. One day he told my wife he didn’t want me as a patient anymore. He finally lost his license to practice. After that I ended up with a really nice orthopedic doctor. His wife was the county coroner at the time. He helped me and gave me wonderful advice on how to choose doctors.”

“Off and on I worked during that time. For years, the workman’s compensation program for the state was intimately involved with my case. They did everything they could to keep me going back to work. One day they put me on 100% disability and said “He’s on his own now”. They wouldn’t let you earn a dollar (doing other work) when you are on this. They give you a fund that is used to live on. (The state puts aside a fund that pays me a pension for as long as I or my wife live.)  I had a family to take care of. They went from one day saying there’s nothing wrong with me to saying I’m 100% disabled. I applied for social security (disability) twice and was denied. So I hired an attorney and finally a judge ruled in my favor to obtain social security.”

PH: Tell us about your feelings and activities during those years.’

Mike: “I was a totally different person. It’s very degrading to have someone help you get dressed every morning. I had to have someone drive me. I was still in my late 20s. You feel like you lost some of your manhood. I could no longer play basketball or softball. I could only hunt from a chair. The drugs change you. You get short tempered. The littlest things would upset me. I hollered at my kids, at my wife, at the dog. I took a whole bunch of steroids (prescribed by doctors). I was trim when I got hurt. I put on bulk. I was hard to get along with. Even with other people. I had such a quick trigger. Before that I was a happy person with a good job who could support his family. And I’d play golf every Saturday with a group of guys. All of sudden, that just came to an end.”

“People said, “What about taking up knitting or crocheting? I can see why my first marriage didn’t go as good as it could have. I was married to her for 24 years. We are still good friends. I’ve been with my second wife 20 years. I moved to her home town because I wanted to be somewhere where people don’t know me. You just get tired of talking about your health problems. Once people know, that’s all they want to talk about. We just started over. I found myself a new doctor. Luckily! It was a huge relief. When you have a lot of medical problems, a lot of doctors don’t want you for a patient. They like patients they can help cure. I was on pain meds. When I had first been on them, I had problems taking too much. I think I was trying to kill the other pain in my life. I was depressed. I felt terrible about myself. I didn’t feel I was taking care of my family. So when I took some more (pain meds), you just felt better, you know. Now, even though I take narcotics, I don’t get a high from any of them. They just help manage the pain. One of my fears is that the pain will get super bad. We tried other meds such as Neurontin, but they didn’t help.”

PH: The pain is not just from Mike’s back problems. The cancer causes a lot as well. The tumors in the liver bulge the liver capsule (outer membrane) and this is painful. The cancer is slow growing and more treatable than many, but not usually curable. Steve Jobs died from this same cancer.

Mike: “The pain goes all the way up to my right shoulder (referred pain from the liver metastases). Sometimes the tumor pain is very intense. Last week, the back pain was severe. The pain meds help both types of pain. I also take a lot of nausea medicine”

PH: What other things in your life keep you going?

Mike: “My wife. She’s the most up person. I was a very closed person. She makes you feel like it’s OK. I was too sick to go to a birthday party yesterday. I felt guilty about not going. She assured me it was OK to not have gone. We do a lot together. We camp. She does all the driving. Even if I was healthy, she’d do all the driving. We get to the outdoors. We’ve got grand kids.”

“Taking care of grandma (his mother-in-law)….easiest person in the world. I feel good about helping her. She asks for nothing. She is extremely happy. She has her own room. She likes the dogs….Emma, the yellow lab; and Sam, the Australian shepherd, and Gus, the golden retriever. My life is pretty simple.”

PH: Tell us about some of the difficulties you face.

Mike: “The biggest thing I had to learn is to let other people do things. That is the hardest thing. Even having someone change the oil.  I hire somebody to do the grass. I tried to work on a fence the other day. I got really sick and it screwed up the back pain worse. I had to find someone to do the work. It kinda drives me crazy. You can’t keep asking family to do things.”

“I hate to spend the money. I still fall down. I have learned to fall with an art. I tell everybody I can fall with the best of them. It’s like somebody stabbed me in the back. It takes me over 2 hours in the morning before I’m not so sick. I wake up a lot during the night; often from sweating. I take shots of Sandostatin (Octreotide) for the cancer. I’ve lowered the dose; now it’s every 3 weeks.”

PH: Octreotide is a hormone drug that suppresses the cancer cells’ growth and production of a chemical that causes the sweating and nausea.

Mike: “When I was diagnosed with the cancer, they told me I had about one year to live. Another doctor said maybe 5 years. I’ve been on the shots for 7 years. There’s so much scar tissue from the shots that 30% of the time the needle plugs and I have to get another one. They can only give them in the hips.

“My doctor now (Dr. Zafer Yildirim, Oncologist in PeaceHealth Medical Group); a neat guy; says “Prepare like you’re going to die tomorrow. Live like you’re going to live forever”. It took about 3-4 years to get to the point where I can do that. Christmas is an important marker for us each year. I’ve had way more than my wife and I ever planned on. So we just keep goin’. I think the experimental surgery they did on me has given me all this extra time. We’re going through a little fight right now (in regards to the Sandostatin shots). They changed the formula but didn’t tell anybody. People are complaining. I used to have 3-4 days of feeling more normal after them. Just like when you got here today, I was sweating a lot. I finally got a letter from the company this week. I don’t know what’s going to come out of that.”

PH: Do you have any opinion about what caused your cancer?

Mike: “Here’s my thoughts on it. You can take it for what it’s worth. I grew up in Great Falls, Montana. Hanford (nuclear plant in Washington state)  back in the 50s did a lot of releases (of radioactivity). A lot of that stuff came down in Montana. There is money for people with cancer that live in certain counties of Montana. Great Falls is not covered to this point. My Mom brought it up to me. I read some articles about it.”

PH: What have you learned about what matters to you in a health care provider?

Mike: “Best thing that can happen to you when you need health care is somebody to listen. I tell this to my friends. You’ve got to make a doctor understand how it’s affecting your life. We don’t let “grandma” go into the doctor by herself because she’s one of those persons that whatever they say, she doesn’t question. I think you need to ask questions. You need to be more proactive in your health care. I don’t think you should just take what they say. If you go to a doctor and they don’t seem like they really care of if they seem like they’re in a hurry, then I say, go find another doctor. Because you need somebody who really cares about what’s going on with you. Luckily, with my Medicare insurance, I can go to any doctor I want. It’s really important that you can talk to your doctor.

“The worst doctor I ever had was the surgeon who first operated on my back. Then I met the orthopedic doctor who taught me what to look for in a doctor. Every since him, I cannot think of a doctor I’ve had that I didn’t like; that I couldn’t talk to. I was careful about picking my doctors. I just won’t go to any doctor that someone sends me to. I will tell them I want an appointment to just talk to a new doctor first.

PH: How important is the ancillary staff?

Mike: “I think it’s very important. When they call you by your first name, it’s amazing how much better you feel. Twice, my wife brought paper work to a staff person who never seemed very happy; who didn’t seem to care. My wife had a very bad opinion of the girls who work in the office. But it wasn’t the girls; it was that one girl”.

PH: Mike has some final thoughts about his cancer doctor, Dr. Zafer Yildirim in PeaceHealth Medical Group; a nurse, his marriages; and his parents. He says he would NOT do his life differently if he could live it over again.

Mike: “I have a great cancer doc (Dr. Yildirim). He says I’m part of the family. He says you can just go to a major medical center if I want. I said I don’t want to go there. I want to stay here (small to medium sized town). He says there’s no complete explanation why I’ve lasted as long as I have. But he says there’s a higher authority than us. He said, don’t question it. One day he said, “Don’t let ’em cut on you anymore”. He’ll say, “This test doesn’t mean a whole lot”. He’ll tell me what matters and what doesn’t. He’s completely honest. He’s just a nice guy. He asked me to see a pain specialist, so I did because I know it helps him to care for me better. The pain doctor went through what I’m doing and taking and said, “You’re doing fine”.

“One of the nurses has the same birthday as I do. She was giving me a shot one day with a big needle. My wife was there and we were joking. She was getting ready to poke me with the needle. She said, “Oh, I live on a ranch. I’m used to giving these to cows. So this is no big deal.” The staff just makes you feel comfortable.”

“My first marriage was affected by my medical conditions, but we were 2 different people. I was ready to go into the police department when I was 21 (he married at 19).”

PH: She asked him not to because she had heard that all policemen cheat on their wives. She gave him an ultimatum that she would leave if he  became a policeman. That experience didn’t help his marriage although they stayed together another 22 years.

Mike: “We are still good friends. It worked out for the best. I met my wife. I wish I’d met her 20 years earlier. Everything turns out for the best. I don’t want to make it sound like I’ve gone through all this horrible medical stuff. It’s been over a long life. And it’s been stuff we’ve gotten through. In the last year I’ve lost about 55 pounds. I’m just not eating as much. I think it’s better for my back. Plus I don’t want to be an old fat fart. I do pay attention to my body.”

“Dad went to the war. They came through that era where people had work ethic and right and wrong. That’s where we got our philosophy. Mom, to this day, has a little green book to keep track of expenses. When I was young, she wouldn’t let me get out of paying off debts.”

“I just feel lucky to be here. When my mother-in-law and I say goodnight, we’ll say “See you in the morning” and the other will say, “Let’s hope so….it’ll be a good morning if we do”.

PH: Thank you, Mike.  And thank you, Cathy, for helping with the interview and reviewing this blog post before publishing.

4 thoughts on ““Not Much Choice”

  1. What a fantastic blog. I too suffer from cronic pain and have to take daily meds to help aleviate it. Mike’s story and mine are simular in many ways, differ in others. I am cancer free but suffer from a destroyed knee/right leg due to an industrial accident. Mikes support group and opinion on finding the “Right Doctor” ring true with me as well. Thank you to all involved in this Blog, it’s comforting to know I’m not alone in my thoughts, feelings and symptoms that come with cronic pain and Opiate pain medication. I will be a repeat visitor to this site, once again Thank You to all involved. Mike, thank you for sharing your story, good luck in your future treatments and live your life to its fullest.

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  2. I couldn’t agree more, that having a relationship with your physician could provide even the most horrific illness – situation so much easier.
    Even if there was very little anyone could do.
    My mother lived in chronic pain from arthritis, hard to compare to the pain of this young man; but, I lost her at a very young 64 following a surgery that didn’t appear to be concerning to the surgeon, and a report/call following the surgery that everything went really well; “she in recovery and would be brought up to her room soon.” I wasn’t prepared for what was to happen next; I lost my mother, at a very young 64, following a surgical complication “common in operating on a hip” and a “fatty embolism” leading to a brain stroke that happened somewhere between the recovery room and her hospital bed, she stroked.
    The communication observed in the handoff from the recovery room RN to the floor RN, was interesting – in retrospect alarming as it was almost non existent; and, when the recovery room RN seemed irritated that my mother did not respond to her request to acknowledge she was addressing her by name; seeking a response to her pain – and, only getting a wide eyed stare before closing her eyes again, she explained that she thought they may have “over medicated her” as they had a difficult time getting her pain under control and had given her an assortment of pain medications, which soon lead to the final one and the Narcan (sp?) which appeared to have her resting comfortably, peacefully (I assumed). It was a resident who rounded on her an hour or so later that sent the final alarms after telling me “he didn’t want to upset me, but he did not think she was over-medicated, but, thought she had a stroke!” From here I learned more from the “brain team” – the interventionalist who came in late night to do the angio-plasti and confirmed it was in the lower part of the brain, the stem – and, that in UT, it was not the physicians, but the family who would decide to take her off the breathing tube/life support if she didn’t wake up.

    I found myself wishing I had someone, access to the physician even who operated that could offer some wisdom, be honest, and not so protected/guarded by what they said, vs. what they couldn’t say. I’m resourceful, but there are times you clearly are not able to think straight and value the difference in the doctor patient relationship in a small community vs. large training hospital.

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