Après la Chirurgie

Me ‘n’ Esmeralda, in happier times

Did you hear? I had a softball-sized tumor removed from my neck three weeks ago.

I first noticed it about a year ago and shrugged it off, thinking it was a little lipoma that wasn’t any big deal. Then I began having trouble turning my head. The lump was getting bigger – about the size of a golf ball – and I couldn’t comfortably wear turtlenecks or even mock neck shirts. I named my lump Esmeralda, and patiently waited for her to gain sentience.

When Esmeralda started aching, I decided to go to the doctor. I hate going to the doctor, especially when I think I’m going to get bad news. I’ve already had cancer twice, so having a tumor made me think that number three was here and if I pretended it didn’t exist, it would go away.  I’m a very bright girl in these matters, so I knew exactly what I was doing when I ignored the wretched thing for so long. Really.

My doctor looked at it and said that there was no question that it needed to come out. Clearly it was causing me trouble, and even if it was probably just a lipoma and not something devastating, it was in a bad place. And, he said, even for a lipoma it was, well, kind of big. There was definitely an asymmetry to my non-gazelle-like neck. A bump about the size of half a golf ball hung off the side it.

I knew all this before he told me. I knew he’d have to refer me to a surgeon. That’s why I was there, right? So, deep breath, I got the referral and made the appointment and went the next week to see when I could divorce myself from dear Esmeralda, who I was beginning to think of as my dicephalic parapagus conjoined twin.

Me ‘n’ Esmeralda before we started misspending our youth

He sent me to an otolaryngology clinic. Apparently, otolaryngologists are the guys who cut on people’s necks when the spine isn’t involved. I was glad my spine wasn’t involved, although I did wonder if that was because I simply didn’t have one. What kind of person, being possessed of a spine, was afraid of what was probably just a harmless little lipoma?

Echinoderms: The Other Spineless Creatures

At the otolaryngology clinic, I got a CT scan of my neck. Back in the examination room, the surgeon pulled up the scan on the computer screen. “Wow, it’s really big!” he exclaimed. He showed me what to look at. The difference in the two sides of my neck were obvious. One side of the screen looked like what you’d think a neck should look like on a CT scan. By that I mean it had not much flesh and a big amount of bone. At least, that one side did. The other side? Well, it was different. Waaaay different.

In fact, it looked a whole lot like this.

There was a vast blackness that took up a lot of space on the right half of my neck. It looked as though Darth Vader himself had taken up residence there and his helmet was pushing things around. The doctor pointed out how my muscle was stretched over this dark growth, how my nerves and blood vessels were pushed out of place, and how much space the thing took up. “It’s sooo biiiig,” he said again. And again. And yet another time, just in case I hadn’t heard him before.

That’s right.  Only I could have a freakishly large tumor in a place with as little flesh as my neck and not notice it for years on end. Evidently, I can’t see a damn thing with my eyes full of sand.

Lipomas usually grow just right under the skin and are fairly simple to remove. In fact, unless they become bothersome, it’s not necessary to remove them at all. Mine was different. It was under the muscle, which, the doctor graciously postulated, was probably the reason I had never realized it had been growing there for so long. It was also pressing on important nerves and blood vessels. There just isn’t a lot of room in a neck, and there’s a lot of important stuff there. Like, say, the carotid artery, which feeds blood to the brain. Which my lipoma had shoved out of place.

In fact, it had shoved things so far out of place that I was in danger of soon looking like the Elephant Man, Joseph Merrick.

Pretty!

Surgery wasn’t an option; it was necessary due to both the size and the location. If Esmeralda really did get large enough to become sentient, state law would forbid me from removing her. I mean, I could already forget about using federal funds. Her presence could no longer be disguised with loose clothing or makeup.  I had to act, and act quickly.

Fetus in Fetu: Sanju Bhagat

The problem was, the size and location of the tumor meant that a different doctor needed to do the surgery. Someone who specialized in cancers of the head and neck.  Swell. The”C” word again. Fortunately, I liked the new surgeon. I liked the old one, too, but the new one was quick-witted, funny, and personable. And probably married. (sigh)

My family rallied around me. My sister went with me to the pre-surgery appointment, my mom took me to her house after the surgery so I could be pampered. Jack came to see me that night.  I felt pretty raw, and my throat, complete with drainage tube, wasn’t pretty either.

See?

Three weeks later, I’m still a little tired, but I’m fine. Some mornings it’s harder to shake off the latent effects of the anesthesia than others. Of course, staying up til 1 a.m. to finish a novel I can’t put down sort of contributes to the problem, but I’m gonna do what I’m gonna do.

The books are really good*, even if the plot and writing are slightly rough in spots.
Brent Weeks is a new, young author and he has time to grow. I can’t wait for his next offering.

*My son, Jack, has demanded credit for cajoling me into reading this series.  Here you go, son.

So now I have an awe-inspiring scar on my throat, and I can come up with plenty of tales to explain its presence.

My throat, sans Esmeralda and smeared with Vitamin E, today.

I’ve told the story of Jack the Ripper to my wide-eyed nieces and youngest nephew (they’re 11, 8, and 6). I have the scar to prove that I narrowly escaped him.

Next I plan to work up a tale of the Bride of Frankenstein for their entertainment. I’ve already got the white hair at the temples going on, so between that and the scar, I’m not going to have to spend a lot on costuming.

The surgeon said that the tumor had to have been there for a very, very long time to be as large as it was. What I want to know is how the hell a softball manages to hide in a neck for years and only show up, finally, as a golf-ball sized bulge.

The size of the thing was apparently really impressive. Every time I call his office his nurse exclaims, “Oh, you’re the one with that really huge lipoma!” Every time. Every stinkin’ time. I’m beginning to wonder if I ought not to have saved the damn thing and taken it on the road. I could have made a living in the sideshow as the girl with the softball in her neck.

Obviously, I was the Freak Show member taking this photo

“It’s soooo big!” the statement is made in the context of, well, first of all, a man. And it’s said by an admiring woman, or at least one that is either thrilled or terrified at the prospect of something that huge… you know. I’m a woman and male doctors have been saying “It’s soooo big!” to me. It’s unsettling.

Big as in “Annual Christmas Blog” Big. And that’s saying something.

Maybe I should have had the thing cut in two and used it for a boob job.Next time, if there is a next time, I’m going to think that through carefully.

Breast Cancer Awareness

Breast cancer has taken the lives of women we knew and loved, and has made the lived of other women we know and love very difficult. Has anyone’s life been unaffected by it?  Don’t we all know someone who has had breast cancer?

The Susan G. Komen Foundation is the beneficiary of a Three-Day Walk for a cure for breast cancer. The walk is a National Philanthropic Trust project, aimed at nationwide and even worldwide participation.

With money for cancer research, more women diagnosed with breast cancer can be like my friend Ellen, who miraculously survived with a spontaneous remission despite being given a death sentence by her doctor, and my aunt Jackie, who survived with successful treatment.  I can name others who have recovered and others who, sadly, have not.  My cousin Margaret, my neighbor Sassy, my old friend Faye…. all have been the unlucky victims of this insidious disease.

As many of you reading this blog know, I’ve had cancer twice. I’ve not had breast cancer, but my nightmares tell me to I expect to. None of us are safe.

Please donate to this worthy cause.

My friend Kathi, who happens to be my former husband’s girlfriend, is participating in the three day walk in October. If you don’t participate yourself, please donate to her effort to raise money for a cure.

Is it weird that I ask you to support Kathi?  She’s dating my ex-husband, after all.  If you don’t already know, Skip and I have a wonderful relationship – much better than when we were married – and it all revolves around a certain boy who is closing in on adulthood.  Our son Jack is sixteen, personable, creative, and reasonably well-adjusted despite  his parents’ divorce.  Skip and I have worked hard to make sure we work together for Jack’s sake.  He is the single most important thing in our lives.  Skip and I encourage each other constantly, talk almost daily, and support each other’s goals, hopes and dreams.  We call each other for support and to vent. We still like each other.  Thank the gods we divorced before we could develop hatred for one another!

I support Kathi not only because she is my friend and Jack’s possible future stepmom, but because she is actually doing something for a cause I believe in strongly.  If you don’t participate in the walk yourself, support someone who is.  Support Kathi!

The link will get you to the page where you can donate money to the cause.  Five dollars, ten, any amount you can contribute will help.  Please help!

Here is the message Kathi is sending out to her friends:

I just wanted to send an update on the Breast Cancer 3Day Walk that I am doing in October.

We are asked to raise $2200 per participant and I have already raised $400 toward my goal! How exciting! Some of those donations are from people forwarding my email to their friends and I want you to know how much I truly appreciate your support. I joined a team called the “Buttercups” and our team has already raised $5,672! We are all training and getting ready for the 60 mile journey.

If you have already donated I can’t thank you enough! If you are still interested in donating here is the link to my site. You can donate online or print a donation form and mail it in. Nothing is too small and it is all tax deductible.

http://08.the3day.org/goto/kathianne

Thank you again!

Kathi

Eye Cancer

One morning in 1999 I went to my optometrist for a routine eye exam. It was time to check the strength of my glasses and contacts. With my pupils uncomfortably dilated, Dr. Randall Teague peered into the depths of my right eye. He looked into my left eye for a quick moment, then looked into the right again. He looked for what seemed like a very long time, since he was shining a light directly through the pupil onto the retina.

“Has anyone ever told you that you have a freckle in your eye?” he asked.

I was a little startled. In fact, my neurologist had asked the same question when I was last in his office for a visit for my migraines. I told Dr. Teague this.

“You need to see a good ophthalmologist,” Dr. Teague said. He turned and reached for a phone book. “I’m going to call to make you an appointment.”

This was certainly an unusual thing to happen during an eye exam, I thought. As I sat in the darkened room, in the exam chair, I watched as Dr. Teague called the office of Bill Mabrey, a very respected Little Rock ophthalmologist, and asked to set an appointment. “She needs to be seen this afternoon,” he told the person on the other end of the conversation. I began to worry.

“Why this afternoon?” I asked. I had other plans for the day, but Dr. Teague exuded a sense of urgency.

That afternoon I went to see Dr. Mabrey, who, coincidentally, was the son of my in-laws’ neighbor and close friend. Over the past ten years I had heard of Bill Mabrey’s professional progress from his mother, who loved to talk about how well he was doing and the awards and recognition he received as an extraordinarily accomplished ophthalmologist. I knew that he was the best in Little Rock.

“You have a choroidal melanoma,” he told me that afternoon. He explained that the “freckle” in my eye was similar to a mole on the skin. It was essentially a growth of pigmented cells in the part of my eye just behind the retina. Some people have small “freckles” in their eyes, just like they have freckles on their skin, and there is no problem. When the freckle grows, though, it is considered to be a malignant tumor that has to be removed surgically.

Only 5 in a million people have choroidal melanoma. That means about 1200 people in the United States have this condition. It is rare. And it is scary as hell.

The choroidal melanoma can metastasize, or spread to other parts of the body, usually to the liver or the lungs. Aggressive action to eradicate the tumor is necessary to prevent the spread of the melanoma. Usually this means the patient loses the affected eye. It is removed to prevent the melanoma from spreading. “You will most likely have to have your eye removed,” Bill Mabrey told me. My world rocked.

I have always had a fear of blindness. When I was first given glasses at the age of 9 I was told that my eyesight would continue to decline. “How bad will it get?” I had asked the eye doctor. He replied, “Oh, eventually you’ll go blind.” He thought I understood he was kidding. I didn’t, and it wasn’t until several years later that I came to understand his remark to be flippant. But in the meantime, I was sure my eyes would soon fail me completely and I would be in a world without books, without sewing, without the fine details that I loved to give to things.

More than anything else, I use my eyes. I read. I write. I sew. I make miniatures. I cannot possibly imagine life without eyes. I can lose my hearing and be okay. Yes, I love music and movies, but losing hearing would only handicap me. Losing my sight would make life much less worth living.

The fear of blindness that had permeated my childhood and adolescence came roaring back into my life. It arrived with a powerful blow and knocked me senseless. I didn’t hear the rest of what Dr. Mabrey said, but as I left I was told to make an appointment to have an MRI done on my eye.

The only place in the state that had the equipment to do an MRI on my eye to determine the size of the tumor was the University of Arkansas for Medical Sciences (UAMS), which is located in Little Rock. Pursuant to instructions from Dr. Mabrey’s office, I called for an appointment. It would be six weeks before they could fit me in. I made the appointment.

The next few weeks were hell. This was the second time I had been diagnosed with a cancerous condition. Jack was three years old the first time. Now he was eight. The notion of this cancer metastasizing terrified me, not so much for me but for my son. My dad had lost his mother to leukemia when he was a teenager and never recovered from the blow. I didn’t want this to happen to Jack. I was 36 years old. My grandmother died at the age of 39.

I walked around in a daze. Depression hit me hard. I spent a lot of time just going through the motions of life. Going to my law office, going home, making dinner, sitting in a daze waiting for the next blow to fall. I couldn’t concentrate on anything. I spent a lot of time just staring into space. Blindness, a cancer metastasizing, the possibility of my child growing up without his mother. I couldn’t even cry. I was numb.

It’s hard for me to write about those months of my life. Even now, nearly a decade later, I can’t think of them without tears. That time was easily the lowest I have ever been, and I’ve had plenty of lows.

My sister, Susan, recognized the fact that I couldn’t function. My husband didn’t – I think maybe he was too close to the situation himself to take action. My sister, though, didn’t hesitate.

Susan researched the diagnosis. She started making phone calls. She found that there were five clinics in the US that treated choroidal melanoma. One of them was at the University of Tennessee in Memphis, just a two hour drive away. When she told me she had found the clinic, she joked that she had hoped we’d have to go to New York, where the shopping was better. I managed a smile. I was so numb I really didn’t care.

Susan got me an appointment at the clinic in Memphis for two weeks later. She cancelled the appointment at UAMS and got the records from Dr. Mabrey’s office. She was ready to drive me to Memphis when a few days before the appointment my husband said he would take me.

Ophthalmic oncology is a tiny subspecialty within ophthalmology. There are approximately 147 ophthalmic oncologists in the world. Getting a second opinion would be virtually impossible, and would most likely be done at my own expense. It wasn’t practical. If the ophthalmic oncologists at the University of Tennessee, which was also associated with St. Jude Children’s Research Hospital in Memphis couldn’t save my eye, it wouldn’t be saved. (Remember the plugs actor Danny Thomas used to make for St. Jude’s on television? He founded the hospital.)

That day I waited in the crowded reception room with about 40 other patients. Not everyone had the same problem I did. There were some who were blind, some who were obviously frail and feeble, and others who appeared just as healthy as I did. After what felt like a lifetime my name was called and I began a series of tests.

After an ultrasound of my eye, photographs of my retina, and two doctors peering through the enlarged pupil of my right eye, Dr. Barrett Haik told me that the spot was most likely malignant and that there were just a couple of options for treatment. One was that my eye would be removed and I would get a glass replacement. If the second option didn’t work, that’s what would ultimately happen anyway.

The second option was a radical new procedure. A tiny laser beam would be aimed through the clear pupil of my paralyzed eye and the melanoma would be burned to a pile of ash. The blood vessels feeding it and helping it to grow would be cauterized by the laser, too. The procedure had rarely been done before, and never by Dr. Haik. However, Dr. Matthew Wilson, his associate, had seen it done. It was experimental. If I did it, I might still need to have radiation treatments on the eye. Despite the laser and radiation, I might still lose my eye. Was I willing to try it? I shrugged. Sure.

It could not be done that day. The doctors would have to get the necessary equipment from St. Jude’s. I should come back in a month. New measurements could be taken by ultrasound and by photograph at that time to confirm that the spot was malignantly growing inside my eye.

I was still numb. When Skip and I explained the options to our families, the consensus was to go for the laser surgery. I was still in such a state of shock and denial that I couldn’t pick up the phone to call for the appointment. My sister came to my rescue again. She called the office in Memphis. I had an appointment to have the surgery.

This time the reception area at Dr. Haik’s office wasn’t as crowded and I was ushered in almost immediately. The pupil of my right eye was dilated with drops. Measurements were again taken with the ultrasound and the photographs. I was seated in an examination chair and given a painkiller.

The team knew what they were about to do to me would hurt and they warned me it would be uncomfortable. Still, I was unprepared for the excruciating agony of a paralytic agent being administered to the muscles around my eye by a hypodermic needle. The shot and the searing agony seemed to go on forever. When it was finally over I asked if it was a boy or a girl. I hoped, for that much pain, I had a baby girl to show for it. Jack was, alas, still sibling-less.

While they waited for the paralytic drug to take effect, Doctors Wilson and Haik talked and joked with me. I have never met a doctor whose bedside manner was better than Dr. Haik’s. He was constantly patting my hand and arm in a fatherly manner, soothing me with his soft voice, and putting me at ease with every word. He explained each step thoroughly.

He was also honest about the fact that he had never attempted the procedure he was about to perform on me. Dr. Wilson had done it, and would be supervising him. The two medical men readied the laser and talked with me and each other about what was happening. Dr. Haik bent over me and aimed the light through my pupil onto the part of the retina where the melanoma was bulging through the choroidal layer of my eye. As soon as he was confident of his aim, he activated the laser. I felt nothing.

For several minutes he directed the laser into my eye. He explained that he was burning not only the melanoma itself, but the blood vessels that were feeding it. Cauterizing those vessels was paramount: if they could still deliver nourishment to that tumor, the spot would continue to grow. All the cancerous cells had to be eradicated.

At last he was finished. He moved aside and Dr. Wilson took a look. He readied the laser and burned a little more of the area. Still, I felt nothing. Dr. Wilson backed away and removed his mask. “I think we got it all,” he grinned. I smiled with relief. It was probably the first time I had smiled in over two months.

Four weeks later I returned to the clinic for a checkup. The tumor wasn’t growing. There was just a mountain of ash where it used to be. I had a blind spot in my vision where the laser had seared the retina and damaged it permanently. A small black spot in one corner of my vision is such a small price to pay to keep my eye. Nine years later, I don’t even see it. In fact, even when I look for the blind spot I can’t find it. (I guess I’m blind to it – right?) My brain has compensated for the small gap in my vision.

I now go to Memphis once a year for a follow up exam. Last year Dr. Haik was on sabbatical and I really missed seeing him. Dr. Wilson was there, though. I adore these two men who saved my eye.

When I came across a story of a small boy who had eye cancer, and who has a gift for something else special, I decided to share this story with you. I hope you find inspiration in it. I did. I found the courage to tell you about one of the darkest periods of my life.