The Good, the Bad and the Ugly

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Let me start with the basic facts, also known as The Bad. I have HER2-positive breast cancer, which arrived in June 2011.

The Bad
Six months later, after having a mastectomy, chemotherapy, radiation and everything else to make sure I was keeping breast cancer at bay, I was hit with mind-related problems, such as finding it difficult to read, loss of memory and confusion. Then one day, I came home, feeling “odd,” went to lie down in my bed and suddenly was unable to say my own name or recognize anyone in my family. A trip to the emergency room revealed that the breast cancer had spread to my brain — what surely sounded like the tolling of a death bell to me and my husband. My mother died of glioblastoma, the deadliest type of brain cancer, in 2007. Having helped care for her in her final months, I felt I had a full idea of what was in store.

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Marlene and the sea postThe Good
The following morning, Dr. Benzil came into the ER and revealed that maybe I didn’t know as much as I thought. She explained that there were things that could be done surgically to manage the cancer in my brain, thus giving us our first glimmer of hope that this might not be as sure an ending as we feared. No promises were made, but with three young children still to raise, I was ready to sell my soul to the devil for more time.

I have no memory of what was explained to me about what it would be like to have my head cut open. Maybe that’s a good thing. I woke up after surgery, talking about wanting some heavy-duty espresso to wake me up. Everyone just seemed relieved that I was able to talk at all. The cancer had been located in the vicinity of my brain responsible for speech and language. Recovery was slow, but not as bad as I feared. I’m a pretty tough girl. Also, Dr. Benzil has an amazing gift for performing craniotomies that hardly show — almost all my hair was left intact.

I wish I could tell you that the breast cancer in my brain went away forever after that. Unfortunately, that wasn’t the case. A few months later, the tumor reappeared. The next plan of attack was gamma knife, a relatively easy procedure involving blasting the tumor directly with radiation. Over the next two years, I underwent three more brain surgeries, the last one robbing me of my ability to read (but strangely, not to write), another gamma knife procedure and this past December, whole-brain radiation therapy. I’ve been on two clinical trials with new, experimental cancer drugs, the current one having shrunk the main recurring tumor by 20 percent! Here I am typing and reading (with help from my family and the “voice-over” utility on my MacBook). The multiple brain surgeries, which seemed like tragedies at the time, are now considered one of the things keeping me around, with side effects that I can live with.

The Good Disguised as the Ugly
As I sit here typing (but not able to read what I’ve just written), I am completely bald from whole-brain radiation — the Ugly. There is a tiny bit of hair growing back in, and I’m pleased to report that it covers my whole head when they said I might have to be bald forever. It does have large patches of white, but I am happy to see it anyway.

Another good is that I am still here, four years after my first diagnosis, and having recently celebrated my 50th birthday. My head doesn’t work as well as I would like, but I’ll take what I can get. I’m not worried about it. I am too busy living the best life I possibly can.

[aans_aside][aans_aside_title]Only Good[/aans_aside_title][aans_aside_byline]Deborah L. Benzil, MD, FAANS[/aans_aside_byline] Being a neurosurgeon taking care of patients with brain tumors may seem like a thankless job. I don’t agree: For me, it is only good. Each encounter becomes an opportunity to use a combination of technical and personal skills to have a positive impact on a distressed patient and their equally worried family. The privilege of caring for Marlene Rudy Linz has been no exception even though her HER-2 positive breast metastasis has been the most refractory brain met I have encountered in more than 20 years of practice.

Marlene and her ever-supportive and present husband are wonderful people. They ask a lot of questions and listen carefully to the offered answers. Both of them mostly laugh, though they have felt free enough in my office to cry as well. Their hope is high, but they are grounded in realism. They greet every day as enchanting. After each of their many office visits, I wonder if I have gained more from the encounter than they have.

Marlene is one of the many patients who taught me how powerfully the old maxim “looking good makes you feel good” applies to our neurosurgical patients. For more than a decade, I have used the combination of “no-shave” incisions with post-craniotomy shampoo/hair treatment. Every single patient who has woken up with a full head of clean, combed hair has thanked me, as have their family and loved ones. For all the gifts Marlene and these patients have given to me through the years, this is my small token in return.

In addition, I have had the sheer joy of helping Marlene participate in crucial family milestones, such as high-school graduations and college matriculation. Not everyone has the privilege to work a job where you have the potential for this kind of impact.

As I embarked on my training in this grueling profession as a neurosurgeon, my astute grandmother said to me, “Debbie, it is better to work 80 hours a week at something you love than 40 hours a week at something you hate.” Nana, you are right. Despite the long, hard hours and the many challenges, patients/people like Marlene serve as a constant reminder that treating brain tumor patients for me is only good.

[aans_aside_author_bio]Deborah L. Benzil, MD, FAANS, is a neurosurgeon with the Mount Kisco Medical Group (MKMG) in New York. On faculty at Columbia University in the department of neurosurgery, she also is director of restorative neurosurgery at Putnam Hospital Center in Carmel, N.Y. In addition, Dr. Benzil is a director-at-large on the American Association of Neurological Surgeons (AANS) board of directors, the immediate past chair of the Council of State Neurosurgical Societies and the associate editor of AANS Neurosurgeon. The author reported no conflicts for disclosure.[/aans_aside_author_bio][/aans_aside]

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