My surgeon received my final pathology report. None of the organs or tissues removed showed any signs of cancer or any other diseases that need monitoring. The mysterious growth is less mysterious now because it’s not the congenital disease initially believed and it’s not a cancer. Now, it is more clearly a cystic growth that my doctors view as incidental to leading them to discover my chronic pain condition. The chronic pain is now the mystery that requires solving.
To solve that mystery I will go to monthly appointments at the pain clinic. I will also work to taper my pain medications to a lower dose based on what my body can bear. In my last meeting with my pain specialist, we discussed trying acupuncture to see if that gives me any relief. She’s open to trying anything, as am I, which does not require another invasive procedure but may deliver some positive results.
The strangest part about all of this is that my family and friends, with whom I’ve had the opportunity to share the news, might actually be more relieved and happy than I am. I don’t mean that I’m not happy that I don’t have cancer. I mean that I’m disappointed that after two years, so many invasive procedures, including this major surgery and an ocean of pain medications, I still don’t have a final diagnosis. I’m still unable to perform the simple act of going for a walk without suffering painful consequences and I’m still stuck inside my approximately 700 square feet of space most days because of this pain. Even though I know it would have been close to miraculous for the pain to be gone so soon after surgery, I want it gone.
Just over a year ago, I decided to approach my condition as if it was something I had to live with long-term to avoid this kind of disappointment. However, if I’m being honest that wasn’t a real decision or commitment to a new way of living. I was still bargaining with the universe, even if I didn’t want to admit it. I was still desperately clinging to hope that there would be no permanence in this situation. I know this still may not be permanent, but I’m not sure it’s wise for me to grasp so firmly, to hope about what might not be if my pain mystery remains unsolved.
Instead of falling on either side of the line of what could be permanent, I’ve decided instead, to take the approach of breathing a little easier for now. I’ll continue breathing easier unless the day arrives when breathing easy hurts too.
It’s been four weeks since I had surgery. By all accounts, the surgery was a success. It was a success because they didn’t have to remove any of my bowels, especially my rectum. What they did remove was the mysterious growth that measured about 3cm x 3cm and was attached to my rectum but not growing out of it, and still has yet to be properly named. They also removed the organs the mysterious growth damaged, which were both of my fallopian tubes. In addition, there was a large cyst growing quite happily on my right ovary, which the surgeon removed without damaging my ovary. The surgeons sent everything they removed from my pelvis to pathology for testing. Since I haven’t received any calls requesting that I must urgently meet with any of my doctors, I’m assuming either they haven’t found anything too unusual or they still don’t know what the mysterious growth is.
When I’m finally healed from the surgery, I will have a vertical scar starting just below my belly button and extending down my pelvis measuring 10cm; or 3.9 inches for you non-metric converts. I’m grateful it’s that small because it would have been much larger if any of my bowels had to be removed, and I could have had an ileostomy attached to my abdomen. However, in place of those things, I will also have scars on my abdomen from the allergic reaction I had to the white, adhesive surgical bandage they placed over the steri-strips used to hold my incision wound stitches together. The allergic reaction I had caused my skin to develop large blisters around the edges of the bandage. I now have scars that show an outline of where the bandage was. I can only hope the scars will fade in time.
Apart from the allergic reaction to the surgical bandage, the big disappointment is that my pain is not gone. When I say that I’m not referring to the surgical pain, which is almost gone, I’m talking about the pain I’ve been living with for the past two years. The first signs that it was still with me came on the day they removed my epidural. Within a few hours of it being removed the old leg, hip, and back pain came back with a vengeance and my blood pressure jumped above 160. The nurses called the doctors from the Acute Pain Service to get my pain down to a level I could bear. That took a while and the whole time they were working on me all I felt was fear. Fear that what the doctors predicted prior to surgery was coming to fruition: I could have a major pain flare after surgery that could not be controlled and I might never be pain-free.
As I’m writing this my legs, right hip, and right lower back are hurting. I’ve been having this pain to varying degrees since they removed the epidural and patient controlled anesthetic (PCA) pump. To compensate for their removal and my body’s response to the surgical pain or body trauma as some doctors prefer to call it – at least I’m assuming these are the reasons – I am now taking pain medication at a dose that is just over three times higher than what I was taking before surgery. That scares me more than the pain. It scares me that before surgery, I was taking a significant dose of pain medications that didn’t always ease my pain and now this higher dose is barely doing the same.
My pain specialists are holding on to optimism. They believe that time will be my healer. They have me working on tapering the doses of my pain medications to a point where my pain is managed with the lowest doses possible. Until then I will try to live as normally as I can, which now includes accepting help from others without resisting, and monthly appointments to the pain clinic to monitor my progress.
“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.
My Small Surrenders 