Cancer Patient Advocate Discusses Opioid Crisis and Cancer Pain Management | Transcript | Living Well | Patient Power


Cancer Patient Advocate Discusses Opioid Crisis and Cancer Pain Management

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Was it the fear that a patient who was suffering from pain, like multiple myeloma could be an example, bone pain or other people have had metastases that they just couldn't get the medicines they needed? 

And with me it was actually quite the opposite.  It wasn't until a month before my actual diagnosis that the doctor finally reluctantly gave me hydrocodone, which I would use as soon as I came home from school and then lay on the couch for two hours kind of feeling the pain going away and then I could pick up my daughter, cook, and then the pain was right back and I really had to be careful with that. 

And then once I was diagnosed with myeloma it was amazing how the attitude of the people in the office changed, how right away I got fentanyl (Duragesic), and it was like, how much do you want?  And as nice as that was, being taken seriously, while I wasn't being taken seriously, I felt like they looked at me as a criminal, as a hypochondriac.  They just didn't take me serious, and that's a real problem too. 

Andrew Schorr:

Right.  I would just say for those of you watching who certainly have a cancer diagnosis or where you're being worked up for that, there are doctors within the cancer practice, not at every clinic but certainly at many of the major clinic centers, who are palliative medicine specialists.  And it used to be palliative medicine was basically for people at end of life, but it's much broader than that now.  And so I would urge you to say, look I'm suffering.  If you can't help me maybe the medical oncologist.  Can I be referred to a palliative specialist to really get the pain management that I need?  Wouldn't you agree, Cherie? 

Within three days or within a week I went back to him three times and last time in tears, and I was taken in to the hospital for 12 days just for pain management.  And then the reason I decided to write my article was because about a month ago I got bronchitis and we were afraid of pneumonia.  And the ER doctor I went to then, I've had RSV, you know, chronic lung, cough, lung condition like newborns get, a lot of coughing since my diagnosis, and the only thing that helps is a cough syrup with hydrocodone and acetaminophen (Vicodin). 

Cherie, I wanted to just discuss a couple of other things with you while I've got you, and we'll have other conversational programs like this one. 

My father was a life insurance agent.  He became the CEO of the company, but he used to sell insurance door-to-door when I was in his late 20s, and he would sit down with young couples who just had babies and he said nobody wants to talk about death, but he would tell them, you know, think about how much you love your wife and your baby girl and stuff and wouldn't you want them to be taken care of in case something was to happen to you.  And he said let's have the conversation now.  You put all your affairs in order, and then hopefully you'll live another 60, 70 years old without anything ever happening. 

So for me having seen the devastating effects of end of life issues where there was incredible suffering that just simply couldn't be controlled, there's so many circumstances that come into play.  And I think it's a personal right issue.  I don't have a lot of family around here to take care of me.  I don't want to burden my daughter with watching her mom—I have a very strong body.  I just have cancer, and so being young I realized that for me would be a very drawn-out business, so I'm going to actually meet with two doctors in Colorado, and we're going to start the discussion. 

And this is not because I don't want to live.  This is not because I want to kill myself.  It couldn't be further from the truth.  But I want to have that insurance policy, all that stuff into place that if I were to relapse and if the pain was to become unbearable and nothing can be done to ease that and the end is imminent, I want to know that I have a place where I will be able and make sure and make sure that the end goes—is easier on me, my family, my loved ones.  So it is not a—there's no slippery slope involved.  I've read all the laws.  There's no way that people can get rid of aunts or uncles or husbands or wives that they really would rather not be dealing with anymore.  This is purely a patient-doctors relationship. 

For anybody who thinks that doctors should be there to help us, sometimes help is no longer available, and all that can be done is keeping us comfortable, and sometimes that's not possible either.  And to me if we love our animals and we see them suffer and we see that death is imminent we take them to the vet and we put them to sleep.  And for me I don't see the disconnect, why we couldn't do that for people that we really love too.  But I think this deserves more time on its own. 

And to me that is a beautiful, humane thing of helping somebody when death is imminent.  Not when you just want to bail out of life, but when the only option is either dying slow, possibly horrible death versus let's just put an end to the inevitable, and that's how I view it.

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Page last updated on September 4, 2019