Tag Archives for illness

The Second Opinion Surgeon Has Spoken: Two Years Is Too Long

I recently had my appointment with the second opinion surgeon. My reluctant surgeon sent me to him for a final opinion on what should be done to treat my condition. Before I get to the outcome of the consultation I want to say a few things about this doctor because I believe that who he is and how he dealt with meeting me should be described.

First, he wasn’t just any surgeon. He is THE SURGEON. More than thirty years ago, he graduated from one of the oldest and best medical schools in the country that today “teaches scientific excellence and humanity in medicine, facilitates leading health research, and influences social and health policy.” He then trained in General Surgery and followed that with a specialty in Colon and Rectal Surgery at another historied and world-class university – it was founded before our country was even a country. He completed is training in a prestigious Colon and Rectal Surgery Resident Training Program in Boston.

Since completing his training, the second opinion surgeon has amassed countless accolades. First, he returned to practice medicine at the medical school from which he graduated and within a few short years took on the role of Program Director of the General Surgery Residency Program – imagine the level of talent you would have to possess to have that role entrusted to you so early in your career. Within a few years he was back at his surgical alma mater to fulfill the role of the Program Director of a larger General Surgery Residency Program while simultaneously working as Head, Division of General Surgery – at the hospital where I am now being treated – for a decade. Within that same period he also became Program Director Residency Program in Colon and Rectal Surgery and still holds that role today.

The second opinion surgeon is a Member of the Board of Directors of the American Board of Colon and Rectal Surgery and is an Examiner for the American Board. He has served as an Associate Editor of Diseases of the Colon and Rectum and an Associate Editor of the Canadian Journal of Surgery. He has served as the President of the Canadian Society of Colon and Rectal Surgeons and as the Chair of the Royal College of Canada Specialty Committee for Colon and Rectal Surgery.

If these years of experience and knowledge as a surgeon and professor of medicine doesn’t put him at the top of his profession, then I don’t know what will. Nonetheless, with all of this backing him, he was unassuming and very human. He bounded into the examination room followed by four residents. I’ll confess that this was the part of the consultation that unnerved me: four extra sets of eyes and ears acting as witnesses to the history of my illness, all its wonderful symptoms, the side effects of medications, all the results from diagnostic tests and scans, and failed procedures. But neither they nor the second opinion surgeon were fazed by anything I reported about my likely rare congenital condition.

At the end of the Q&A, the second opinion surgeon made a number of declarations. First, two years is too long for me to live as I have with so much pain and such low quality of life. Second, it isn’t feasible for me to continue taking all the medications I need to manage the pain long-term. Next, my reluctant surgeon has taken a conservative approach to treating me by exploring all non-surgical options, but “the time for conservatism is over”. And finally, the thing in my pelvis that is the source of my pain has to come out. He looked up from his note-taking and asked if I agreed with his list of assertions. Of course I said yes. Truthfully, at that moment he could have told me the earth is flat and I would have agreed.

There you have it. The second opinion surgeon has spoken. I will have surgery. The thing living in my pelvis must be removed – regardless of the risks. My reluctant surgeon educated me about the known and warned of possible unknown risks and he agrees there are significant risks inherent to a resection, but leaving me as I am is not an option. Besides, there are risks with every major surgery. The hope is that removing this interloping growth will end my pain. The fear is that it won’t. Whatever the outcome, at least once it’s out they will finally be able to say with certainty what it is.

 

David Bowie – Changes

Gratitude and Creativity: My Heart

I haven’t had an easy life and my illness isn’t making things any easier.

But regardless of the terrible things that have visited my life – even now when I am in pain – my heart always rises above and holds on to goodness. My heart can share and receive love. My heart holds hope and happiness. In fact, my heart continuously grows love and happiness that I can share with others.

I know that love exists in the world for me. It is unconditional, and it makes me feel special and worthy. Because I know I am loved I feel grounded and connected. Knowing this love for me is in the world makes me feel more like a part of the world and that I belong in it. Being loved makes me feel hopeful about life.

For these things I am truly grateful because my heart is always full.

 

Eurythmics – There Must Be An Angel (Playing With My Heart)

Drug Seeking Friends Don’t Care About Your Pain

“I just want to see what kind of high they give me,” he said.

Every so often these words pop into my mind. They are a painful reminder that someone I considered a close friend cared so little for my well-being he was willing to take from me the only things managing my pain and keeping me out of the hospital emergency room. He wanted me to give him the tiny, pale, green, opioid pills prescribed by my doctor in meticulously measured quantities to cover two weeks of pain-filled days. He justified his request by saying, “Your doctor will write you a prescription for more pills.”

How did we arrive at “I just want to see what kind of high they give me”? About six months into my illness this friend started to express a lot of interest in what kind of pain medications I was taking and how much of them I needed to take to get some pain relief. I saw it as genuine concern because we had been friends for about a decade and my pain medications just became a natural part of the conversation when he touched base to see how I was doing. We talked about the various pain medications I had been prescribed and I remember during one phone call he googled a comparative pharmacology chart to see the differences between these pain medications. He expressed a particular interest when he learned that the Dilaudid I now take is “3 to 4 times stronger than Morphine”.

About a week or so later he told me he would be in my area of the city for a meeting one day soon and offered to come by to have lunch with me. He said he missed hanging out with me and it would be good to see me for a few hours. The idea of his visit made me happy. He came to my apartment with some delicious Indian food. I didn’t have the appetite to eat very much, but I was so happy for company in the middle of the day it didn’t matter. As it always was, our conversation was punctuated with laughter and sarcastic barbs. He sat with me for a long while and asked questions about how I was coping, why it was taking my doctors so long to figure out exactly what was wrong with me, and when I might get better. Then it was soon time for him to head back to work.

As we walked toward my front hallway he stopped in front of my kitchen doorway and asked if he could see my medications – all my meds were in plain view on top of the fridge. Being more than a little bit spaced-out and very naïve I didn’t think there was any reason for concern. I showed him the various bottles and explained the contents of each. He noted that the Dilaudid pills were very small considering their strength. As I was putting the bottles back on top of the fridge he asked if he could have some Dilaudid. I laughed because I thought he was joking. He asked again and I realized he was serious. I told him I couldn’t give him any for a number of reasons: they were prescribed for me; they are narcotics; they are a controlled substance and it’s illegal to share them; I needed all of them to manage my pain; and if I ran out of them I would end up in the emergency room because of the pain. That’s when he said, “Your doctor will write you a prescription for more pills.”

This disregard for what would happen to me if I ran out of pain medication stunned me. He kept asking and trying to persuade me until I felt uncomfortable and all I wanted was for him to leave; so I gave him one pill. He wasn’t satisfied with just one. He said one wasn’t enough to see what kind of high he would get from them and whether it would be worth having his “guy” go to the trouble to get some for him. I felt instant nausea. He wanted me to give him pills I was depending on to cope with debilitating pain for his recreational use. I held firm and told him even one was too much for me to spare. He finally stopped asking. He was clearly disappointed. He walked to the front door. Put on his shoes. Gave me a hug and left. I’m not sure how long I leaned against the door feeling numb because my anger couldn’t break through the muddiness of pain and medication.

I will never be able to forget this happened.

He wanted my pain medication to get himself high.

He also confirmed what I suspected for a long time. He is an addict.

He labels himself a “recreational drug user”, but there was no fun in what he did to me that day. He has often said that he ingests substances – cocaine, mushrooms, MDMA, Oxycodone, marijuana, alcohol, caffeine tablets, and energy drinks – to enhance and heighten his experience of life. From what I have witnessed it’s more likely he’s trying to escape parts of his life.

He didn’t care about what would happen to me if I didn’t have enough pain medication. But I knew: if I ran out of pills early I would have to call my pharmacist to get a refill; my pharmacist would look at my file and see that it was too soon; he’d tell me he could not be refill them yet because they are narcotics and Controlled/Monitored Drugs and question why I had taken that quantity so quickly. Then because of strict regulatory policies the pharmacist would not contact my doctor’s office on my behalf to get authorization for a refill, but he would advise me to contact my doctor immediately to be assessed.

My doctor would hear alarm bells when I told her I was out of Dilaudid before the end of the two-week period. She would assume I had taken them all and she would be concerned that my pain was becoming more severe, or worse, that I was abusing my pain medication. She would bombard me with a million questions and I would most likely lie to shield my friend, to hide the crime I had committed – giving someone even one of your narcotic pain pills is breaking the law – and to get replacement pain medication so I wouldn’t land in the hospital. From that point forward she would monitor me even more closely and probably request that I pee in a cup more often to check the level of Dilaudid – and other possible substances – in my system. And I would have degraded my doctor’s trust.

Thankfully these things didn’t happen. But his actions and words caused me to feel so stressed and paranoid I started hiding my pain medications in dresser drawers in my bedroom. I also distanced myself from him because he made me feel unsafe and I didn’t want him to believe what he did to me was ok. I haven’t seen him since that day over a year ago. And I can no longer consider someone who would put me at risk my friend. Nonetheless, my hope for him is that one day he recognizes the harm his addictions create and then engages in the work needed to repair and balance his life, family, and his relationships.

 

P!nk – Sober