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Note: Lori Heckenkamp passed away on July 14, 2017.

Dear Dr. X,

My name is Lori Jean Heckenkamp. I am 57 and a patient at the Cancer Center where you head the gynecologic oncology group. I began treatment in June, 2015 for advanced ovarian cancer. I will soon be free of this failing body and damaged brain and for this, I am grateful.

It is this damaged brain that I am writing in regards to today.  I am writing to you about benzodiazepines because cancer is not what ultimately ruined what life I had left but rather a prescription for a benzodiazepine given to me by your facility.

In May, 2015, I saw one of your staff oncologists with concern about symptoms– the whirlwind of appointments, ultrasounds, blood work, scans and clinical trial discussions began. I was forced to quickly find my teenaged daughter a place to live as I moved in with family for help.  Next came the rush to surgery, ports placed and chemotherapy sessions. Many medications were thrown my way, including the one that would destroy my life.  That prescription was Ativan – a benzodiazepine.

Early on I spoke with one of your nurses and conveyed to her that I was frightened about starting chemotherapy. In a chirpy voice she said “a lot of our ladies like Ativan!”  She explained that Ativan (generic lorazepam) was an anti-anxiety medication that helped worried patients sleep and control their situational anxiety. At no time was I given any warning about this drug’s potential for creating dependence and severe, debilitating, protracted withdrawal symptoms. I was not told that Ativan, like all benzodiazepines, was meant only for short term use of just 2-3 weeks.  And so, being uninformed, I made the gravest mistake of my life.  I said yes to the prescription.

I read the informational pamphlet that came with the Ativan. It did mention some of the possible withdrawal symptoms, but in no way did it convey how severe and protracted they can be. I recall being reassured by a statement in the literature that those who have “addictive personalities” should take extra care when considering a benzodiazepine.  I never smoked or took recreational drugs and averaged about three alcoholic drinks per year, so I erroneously assumed I would be safe.

For the seven months of chemotherapy, I took one milligram of Ativan every evening exactly as prescribed.  I did sleep well, and recovered nicely between chemo sessions.

In November, 2015, treatment ended.  I was in remission and excited. I knew the cancer was likely to return, but I was determined to make the most of my cancer free days.  Most importantly, I planned to spend my time with my precious daughter and possibly travel to England.

Shortly thereafter I called the Center to renew the Ativan prescription. I was told that because chemotherapy treatment was concluded, the Center would no longer prescribe them, and that I needed to contact my regular primary care doctor.  I was then told, for the very first time, “Ativan is only meant for short term use.”

The first tiny ring of an alarm bell went off in my head as I hung up the phone. What was meant by “short term use”?  I had already been on the benzodiazepine for seven months.

Since I had completed treatment and achieved remission, I decided to stop the Ativan.  In December, 2015, I reduced the dose by half.  Within a few days, everything went sideways.  My sleep became severely disrupted.  I had constant nausea and bouts of vomiting.  I became dizzy and my head felt spacey.  I spent Christmas Day with my head in the toilet, and both New Year’s Eve and my daughter’s nineteenth birthday in bed. I didn’t know what was happening.

After a couple of weeks of misery and mystery, I decided one night to forego the Ativan.  I was up all night. My heart began pounding and I felt indescribably sick.  Sometime during that horrible night, one word popped into my head – “Ativan.”

In the morning, I dragged myself to my computer and began to investigate. One Google search returned the devastating truth.  I had become dependent on benzodiazepines. The more I read, the more horrified and enraged I became. I read testimonies of torturous long tapers. I read of terrible symptoms that went on for months or even years. I read of careers, homes, relationships and health destroyed. I read of down-regulated GABA receptors, cortisol surges, and major disruptions to the proper functioning of the brain and the CNS. I read of poly-drugging by physicians who didn’t believe that the benzodiazepines were causing the symptoms, but that the patient had an underlying psychiatric disorder. And I read of suicides.

Greatly alarmed, I went first for help to my primary care physician, who advised me to get off the benzodiazepine. She unfortunately switched me from Ativan to Xanax, a shorter acting benzo, for the taper. She also decreased the dose. This was a mistake, and the ensuing three days were horrifying. I wept in my aunt’s arms, sobbing “I can’t keep feeling like this.” Please hear me now when I say to you that not once during my 7 months of cancer treatment did I ever feel as horrific and sick as I did that night.

I went back to the 1 mg of Ativan and felt a bit better. I then went to a psychiatric addiction specialist, who switched me from Ativan to the long half-life Valium, and we devised a taper plan. I started at 8 mg of Valium, and over the course of a year – the span of my precious remission – I tapered slowly downward. I had made it to 3 mg when the cancer returned. I felt terrible the entire time. I wondered if I was an anomaly. Women in our local ovarian cancer support group told me they had no problem discontinuing the Ativan.

My primary care physician expressed surprise at how much difficulty I was having. But after participating in the large online community of benzodiazepine sufferers, I learned I was not unique as there are thousands of people who are terribly sick and fighting for their lives because of benzodiazepines.

I learned that unlike opiate dependence, the benzodiazepine dependent person in withdrawal, does not recover in 2-3 weeks. Many do not recover in 2-3 months. Some do not recover in 2-3 years. And even sadder, some only improve, but never fully recover.

I am the woman with terminal ovarian cancer whose remission was ruined by an entirely preventable iatrogenic illness. My symptoms during the last 18 months, since I first attempted to stop taking the Ativan, have included crushing head pressure, ice pick stabbing headaches, dreadful insomnia (four broken hours is a good night), tinnitus, nausea, muscle weakness (“jelly legs”), muscle cramping, tachycardia, cognitive dysfunction, inability to concentrate, dizziness and a pronounced and very unpleasant feeling of detachment and spaciness, visual disturbances, flu-like malaise, intermittent low fevers, chills, song loops in my head, painful nerve “zaps” in my teeth, memory problems, and “toxic mornings”, when I feel so ill upon waking that I can barely move. I have been too ill to travel, attend a concert or movie, or eat at a restaurant. I was too sick to spend any time with a very dear friend before she unexpectedly and abruptly died and too sick to spend Christmas or my daughter’s birthday with her, help her move into an apartment or take care of her when she was sick. This broke my heart and broke hers, too.

I managed to go to work, most of the time, staggering through my tasks while functioning at a significantly reduced intellectual capacity, and then I went home and got into bed. Chemotherapy was a romp in the park compared to this. Throughout my experience with Ativan, I have not felt depressed but rather sick day after day after day with symptoms brought on by withdrawal of a benzodiazepine taken exactly as prescribed by your clinic.

When I was in remission, I should have been enjoying my time, but instead I endured this torture. Over the past 18 months I have devoted a great many hours to studying what benzos have done to people. Recovery can take multiple years. I am not alone. Unlike many online, my time is limited, I do not have the time to get better.

After thinking this through, I have made the decision not to accept treatment. I am quite frankly too ill to endure more chemo. Moreover, since recurrent ovarian cancer is a terminal diagnosis, my oncologist informed me that chemo treatment would only extend my life for a limited time. My quality of life is so poor due to my symptoms caused by benzodiazepine withdrawal that I would rather not extend my suffering any further than necessary. My oncologist did his best to dissuade me, but I believe that there are worse things than death, and the thought of slogging through the relentless daily misery of cancer treatment and acute benzo related sickness is just too much to take. I realize that my decision to stop further cancer treatment and let the disease take its course is unconventional, and not one that was taken lightly. This is my life, and I want to enjoy it and live. Please do not chalk this off to “depression” or blithely ignore this letter.

Thousands of people have been harmed by this medication. We deserve better than this from our doctors. I deserved better. I walked into your hospital to get help for my ovarian cancer, and I walked out ten times sicker.

The greatest mistake I have ever made in my life was agreeing to take Ativan. The second greatest mistake was trying to get off. In both cases I was following doctors orders. I wish that someone had suggested remaining on the benzo as an option, but all of the doctors I communicated with encouraged me to get off. It is clear now that this was poor and reckless advice.

If I were to receive a phone call tomorrow that a complete cure had been discovered that would forever eliminate ovarian cancer from my body with just one magic pill, I would not care. It would not matter to me, because I would still be sick from the benzodiazepine, and that is something I can no longer continue to endure. The daily misery of benzodiazepine illness far eclipses the horror of cancer. That is a message I want to burn into your brain and your heart so that you never forget it.

I will be gone soon. Remember me. Remember the patient that your facility destroyed with an iatrogenic illness. An entirely preventable illness. Learn from what has happened to me. Please educate yourself and your staff, and do not let this happen again to one more patient. If any good could come from this, it is that medical professionals would become educated about benzodiazepines, believe that the illness and damage are real, and change their prescribing methods. Do not prescribe it at all, if possible, and if you must, make sure your patient is fully informed of the potential consequences. Learn how to safely taper a patient off benzos if you are the prescriber who created the dependence and only if it is advisable for the patient to discontinue.

The Cancer Center does good work. Let it do better work.

Sincerely,

Lori J. Heckenkamp

 

 

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