My Cancer Journey – Part 6

Dependency and Withdrawal

The morning of February 18, 2020 I woke up early and went to sit on the couch. Something was very wrong. Something was happening to me. Something I had no words to describe. I still don’t. My brain raced, but on nothing.

I tried to think it through, to name the sensation. What was this? It felt like my brain had a life of its own, like little rodents were running in frenzied circles inside my head. Looking back, the words that come to mind are distress, anguish, despair. But none of these is quite right. I wouldn’t realize until later that I was going through withdrawal.

I was going through withdrawal.

The Descent

Hydrocodone was my first opioid, prescribed for post-surgery pain following the removal of my diseased tonsil. Though I didn’t want opioids, the surgeon was convinced I’d need them. (see Part 1). I took Hydrocode for three days, then switched to over-the-counter acetaminophen. I couldn’t tell the difference; the Tylenol was just as effective.

When radiation and chemotherapy began, the wound in my throat was still healing. Now, radiation would burn my throat raw, swelling and narrowing the passage to my stomach. Chemotherapy caused sores in my mouth and lesions on my tongue. To say that eating was a challenge is a gross understatement. But with my immune system under attack, I had to focus on my intake of the right nutrients and sufficient calories to keep me alive. I was trying to avoid the need for a feeding tube (see Part 5).

During the eight weeks of my treatment, I experienced a lot of pain. Early on acetaminophen dulled, though did not eliminate, the pain. By December 19, just two weeks into my treatment, I was on Hydrocodone again. And on January 8 the doctor switched me to Oxycodone.

In case you’re wondering—yes, Oxycodone is the same as OxyContin.

On Oxycodone, I couldn’t drive. I was totally dependent on others for transportation, daily trips to the treatment center, and all other errands. (see Part 4)

Whack-A-Mole Medicine

I was on a lot of other drugs too. Drugs designed to combat the painful side effects of radiation and chemo, and additional drugs to counteract the side effects of those drugs. I refer to this approach as Whack-a-mole medicine, because it resembles the game, though it’s not nearly as much fun.

Whack one side effect down and another pops up. Vomiting? There’s a drug for that. Whack! Diarrhea? There’s a drug for that. Constipation? Nose bleeds? Dizziness? Chest pain? Whack! Whack! Whack! Whack!

Managing all the drugs became a full-time job. Some could not be taken together because they worked against each other. I needed to track what I took, at what time, and in what quantity. I kept a journal. I set alarms on my phone to stay on track. This included alarms in the middle of the night.

In addition, the two oncologists treating me didn’t always agree on which drugs I should take. One said “take this for the pain”. Another said “No, take this.” They weren’t consulting each other even though they worked in the same building, for the same institution. Somehow that communication became my job, the job of a person on opioids. A person too drugged to drive.

The cisplatin was causing serious side effects, potentially damaging my kidneys and heart. I was so sick after the second infusion that the doctor reduced the cisplatin by 25% and upped the fluids by 30%. I worked hard to tolerate the third, fourth and fifth infusions, but my health continued to deteriorate even at this reduced potency. I opted out of the sixth treatment. It was just too brutal. The hematology oncologist agreed.

Remember the bully doctor? (see Part 2) His treatment plan was even more aggressive; double the dose of cisplatin in three infusions. His approach might have killed the cancer. And, it might have killed me.

My last radiation treatment was January 27. The assault on my body—from radiation and chemo—was over. But I was still on opioids. I wouldn’t understand the full impact of that assault until I went into withdrawal.

Hallucinations

I was admitted to the hospital on February 8 for observation. My throat was so swollen that I had a hard time even swallowing water without choking. At that time, I was taking 7mg of Oxycodone (liquid) every four hours, 42mg per day.

During my stay in the hospital, I experienced hallucinations and memory lapses. Once the nurse surprised me talking to someone when there was no one in the room but me. I’d clearly “seen” my son-in-law sitting on the couch, but when I looked back, he was gone. The nurse reported that she’d helped me shower. I had no recollection of that. After I was released, I received a bill for almost $4000.00 for three visits from a hospitalist. I did not recognize the name. I had no memory of this person. None.

I was released on February 10. The next day I spoke to my oncologist about getting off the opioids. From the beginning, when I’d voiced my concerns about taking them, he’d assured me they would wean me off the opioids when the time came. His notes from my medical chart that day say: “Ms. Hilton does report significant concern regarding her medication doses and timing, and expresses a desire to taper off her oxycodone. I will see Ms. Hilton in follow-up in 1 to 2 months.” And, here is the “plan” the doctor and his nurse gave me that day:

  • Oxycodone:
    • Take 5mg at 5am, at 11 am, at 5 pm, and 10pm for 5 days
    • Then take 5 mg 8am and 10pm for 5 days
    • Then take Oxycodone 2.5mg at 8am and 8pm for 5 days
    • Stop taking Oxycodone at the end of these 15 days

So here’s the thing: I spent most of my career in project management, and I’m here to tell you, this is NOT a plan to wean a patient off an addictive medication. This is a draft of a schedule. A schedule needs to be closely monitored, managed, and adjusted accordingly, not checked every “1 to 2 months”, especially when the stakes are high.

If you draft a schedule and then walk away, chances are your intended outcome will fail. (Project Management 101)

A Medical System in Denial

So, when I woke up on February 18 with my brain on fire? I called the doctor’s office, only to be told that what I was experiencing sounded like depression, that they frequently saw depression in cancer patients (the first time I’d been told that). Also, my oncologist couldn’t prescribe medication for depression. More medication? Whack!

The nurse gave me a phone number for a therapist. That therapist had no openings for a month. I was given another name and number – three weeks, but they didn’t take my insurance. They gave me another number. Two weeks. What was I to do? I made the appointment and sat down to cry. I felt abandoned.

I realize now that the medical system was washing its hands of the dependency it had caused. But luck was on my side. Later that day, the phone rang. A therapist with a cancellation! Could I come in the next day?

He was a kind man. Talk therapy. But his advice was lightweight – Think positive thoughts.” – and sometimes unwise – “Get outside for a walk.” A walk? I was weak and dizzy, falling on a regular basis, fainting without warning. Also, I live alone. Who was I to walk with? Under the circumstances, a walk outside in the dead of winter didn’t sound like a safe endeavor. He also recommended an anti-depressant, though he couldn’t prescribe medication. I’d need to see yet another doctor for that. Fortunately, he was able to recommend someone who saw me the next day. The anti-depressant (Whack!) was to be taken at bedtime because it could cause drowsiness—already an issue with the opioid. If you’re rolling your eyes at this point, imagine how I felt.

Whether the anti-depressant helped or not, I can’t really say, but it joined the other drugs in my system (Whack!), and caused other side effects. It takes a while for anti-depressants to work. In the meantime, my brain continued to torture me. I had never before been diagnosed with depression. I wasn’t convinced. I continued to puzzle over the situation.

Thanks to my years in project management, I am a problem solver. Thanks to my training as a coach, I understand human nature and how to work through personal blocks. Thanks to my stubbornness, I was not going to let this thing win! Plus, I had people checking on my wellbeing. And for all these reasons, I’m still here.

I’m here and able to tell this story. Many people are not so lucky.

The problem solver in me took another look at the schedule. I analyzed the plan. When I was admitted to the hospital, I was taking 42mg of Oxycodone a day. This was my prescribed treatment; I never took more than what was prescribed. The proposed schedule took me from 42mg to nothing in 15 days. The schedule also cut the dosage in half every five days.

Another data point: In the past three weeks, I’d lost 33 pounds, not to mention the five pounds I’d lost between surgery and the beginning of treatment. At this point I weighed 113 pounds. I wondered. Could this be a factor? We don’t generally give the same dosage of medication to children as adults.

I concluded that the schedule was too aggressive. That’s when I realized I was experiencing withdrawal. My brain was asking for the drug, fighting the fact that I was taking it away. This is where denial comes in. Not my denial, but the medical system’s denial. Or maybe not? There is significant evidence these days of the insidious efforts of Big Pharma to convince doctors that opioids are safe. And when addiction occurs? We blame the patient. Not the pharmaceutical companies. Not the doctors. We blame the victim.

Even though we are now painfully aware of the addictive nature of opioids and the horrific impacts on our society, not once…NOT ONCE…did any of my doctors discuss the possibility that I was going through withdrawal. Not once in the course of my treatment, or since, has any doctor—not even the therapist—used the words dependency, addiction, or withdrawal when discussing my care.

I realized that I was largely on my own. So, I put together my own schedule. I took it more slowly, reducing the Oxycodone dosage less aggressively, listening to my body, and consequently extending the schedule one full week. I shared my analysis and plan with the radiation oncologist. He approved.

My last dose was March 3. My friend John was with me. We cheered! I was anxious, but I was determined. The pain wasn’t gone, but the opioids were. I still had significant pain to deal with. It wasn’t easy, but I’m sure it was easier than dealing with addiction.

Note: At the time I weaned myself off Oxycodone, I had a full prescription still in my arsenal of drugs. Small wonder that so many people relapse.

The treatment and the ever-changing cocktail of drugs had other consequences too. More challenges lay ahead.

Next up: Chest pain and adventures in cardiology. Recovery during the Covid-19 pandemic and a Derecho, a land hurricane. Stay tuned.

References:

I’ve done a lot of research and reading during the aftermath of my treatment. The lawsuits associated with opioid addiction are ongoing. For those of you who are interested, here are a couple of resources I found informative:

  • American Overdose: The Opioid Tragedy in Three Acts by Chris McGreal
  • Empire of Pain: The Secret History of the Sackler Dynasty by Patrick Radden Keefe

A final word: Advocacy! Find a trusted advocate. Advocate for yourself. Don’t let the medical system intimidate you. Ask questions. Do research. Don’t be afraid to ask your doctors about other options. Remember: You are the customer. They are the service provider.

7 thoughts on “My Cancer Journey – Part 6

  1. Shirley,

    Every provider should read this blog! This is so well written, clear, concise and not histrionic…just the facts, Mam, WHACK…this is what happened to me. I am not shocked (although very disappointed) that NO ONE talked to you about withdrawal. This is a horrible experience. Let alone the pain and exhaustion from the diagnosis and the treatment but not being heard is infuriating and uncalled for. The final thing is anyone (and all therapists should know this) in opiod abuse would certainly take into account the weight of the patient. This is just so absurd. Or maybe I have been lucky to work places where we had withdrawal protocol approved by JCAHO. This needs to be read by everyone in health care. (ER docs and nurses would benefit from this too!!) Get it out there, Shirley. Turn this blog into a book!!

    Thanks.

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    1. Thank you, Maeleen. Some have suggested that I write a book about this experience. It’s just too exhausting to relive. The best I can do right now (and my reason for writing these posts), is to underscore the importance of patient advocacy. Many people go through treatment alone and are at the mercy of the system. Unfortunately, corporations have taken over much of the management of our healthcare. The focus has shifted from the patient, to the process and (of course) the profits. I feel sorry for those who went into the profession to help people and are also now finding themselves victims of the system.

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  2. GODS! After the first paragraph I was hooked. A third of the way through I just wanted to hug you long and hard. By the end I wanted to hurt several folks, beginning with your oncologists.

    This is good, and enraging, stuff. Very well written. And VERY informative. This should be very helpful for anyone who is, or will, negotiate the minefield that is the US Healthcare “system”. Could be refined into some kind of TED Talk, maybe?

    ________________________________

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  3. Dear Shirley, I am in awe of your ability to write so eloquently about this horrific situation. I sincerely hope that you have someone/s to advocate along with you. The cure must not be worse than the disease, though clearly this is often the case. May you be surrounded by beauty and countless moments of kindness and joy in your healing. Janice

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  4. Thank you, Janice. This post was a hard one to write; it took me months. I appreciate the readers who afforded me the patience and space. You are so right – the cure should never be worse than the disease. There are, however, segments of our medical system that see death as a “failure”. It is important that we all think about quality and quantity of life, and make our own wishes known. Atul Gawande’s book Being Mortal: Medicine and What Matters in the End, is a beautifully written book by an oncologist. A good reference for anyone dealing with severe illness and/or end-of-life situations. We are, after all, all mortal. Thanks for reading and thank you for your comments.

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