Diana's Story

I was working as an ER nurse, and life was going quite smoothly for me and my family. One morning, as I was getting out of bed, my hand happened to brush against an unfamiliar lump on the side of my left leg, just 4 inches above the knee. It was painless, about half the size of a Silly Putty egg, and was easy to wiggle around. It seemed to have come out of nowhere.

Alarmed, I called my doctor and got in to her office that morning to get it checked out. She examined it, and said, "It looks like a lipoma to me." She explained that lipomas are benign lumps of fat tissue, and that no treatment is usually indicated. Still, she instructed, if the lump got bigger or became uncomfortable, she wanted to know about it.

Several months went by. The lump sometimes seemed to be a little bigger; I couldn't really tell. It also seemed to be more anchored down into the muscle. Then it began to get uncomfortable, especially when I was on my feet at work. Tylenol helped, but I decided to get it checked out again as I'd been instructed. I will never forget the look of alarm on my doctor's face when she rechecked the lump. Immediately she gave me the name of a surgeon, and instructed me to follow up with her that day.

The surgeon was very nice. If she suspected the lump was anything other than a lipoma, she didn't let on at that first meeting. I was scheduled to travel to France on vacation the following month; she suggested that I could wait until after my trip to schedule the surgery if I wished. But, since the lump was causing some discomfort and I planned to do a lot of walking on my trip, I asked, "Could I just get it done right away?" She said, "Of course. Next Monday morning, if you like."

I arranged to have four days off from work (that should be plenty, right?) and Monday morning found me and my husband sitting in a pre-surgical room, an IV in my arm, awaiting the excision of what was termed a "mass" on my left leg. I don't remember the surgery, of course, since I was under anesthesia. But I do remember waking up, and being somewhat groggy as someone handed me a glass of ginger ale and encouraged me to drink it. I remember, too, hearing my surgeon talking to my husband. She said something like, "Lipoma tissue is easy to recognize, just as fat is easy to recognize on a piece of meat. What I found didn't look like a lipoma. So I did a biopsy instead of removing it, and sent it to pathology right away." And I heard, with dismay, the word "sarcoma."

I remember lying there, still feeling foggy, sipping at that ginger ale (they told me I couldn't go home until they were sure I could take fluids). I also remember feeling a tear going down my face that I hadn't even realized was there. I saw tears in my surgeon's eyes, too. I said, "Do I have to cancel my trip?" She said very quietly, "I think it would probably be wise." Because sarcomas can be tricky, my surgeon told me, she couldn't remove it herself. She referred me to a colleague of hers who specialized in surgical oncology at Loyola University Medical Center. "You must get in there before next Tuesday," she said. "If they can't fit you in before then, call me back, and I will see that they get you in." Dazed, I made the appointment.

This surgeon, too, proved to be very nice, as well as encouraging. He showed me how he would make a D shaped incision, right over the biopsy incision, and remove the tumor as well as a thick layer of tissue all around it. "You'll have a crater in your leg," he warned me. "Then you will have radiation therapy for several weeks, and then you're done." Radiation? The word scared me. I'd taken care of cancer patients undergoing radiation before. It suddenly dawned on me: I am a cancer patient.

The surgeon sent me to another building to meet with a radiation oncologist. This doctor was quite humorous, which I found reassuring. He said to me, "So, you were just going along minding your own business, and then one day...?" I told the story all over again for him, and he, his nurse and the resident working with him all examined the lump on my leg. Surgery was scheduled for September 28, less than three weeks after the biopsy: it was termed "radical excision of sarcoma, left leg." I would also be given brachytherapy, a form of radiation I'd never heard of. The oncologist said, "You're lucky. Twenty years ago, the treatment of choice would have been amputation."

Treatment

When I'd first emerged from the anesthesia after my biopsy and heard my surgeon utter the word "sarcoma," I couldn't think of anything else. One of the things that I'd shoved to the back of my mind was a visual problem that had cropped up, for some unknown reason, while I was lying in the pre-op waiting room. I'd started to see double. This wasn't the first time I'd experienced this: it was a fairly common temporary occurrence for me after a migraine. Only, this time, it didn't go away. On top of that, I was experiencing some serious pain issues. Apparently the tumor had been slightly pressing on a nerve (causing the discomfort at work). After the biopsy, the tissues were swollen, resulting in excruciating pain in the upper leg. Two pillows under the leg, an ice pack and the maximum amount of Norco did almost nothing for it. I called my surgeon, and she ordered a stronger narcotic pain medication. It helped, but made me dizzy. But I had no choice but to use it. At the same time, I started having night sweats and nausea. I remember thinking that it was almost like a migraine, except that my head didn't hurt and it lasted much longer than any migraine I'd ever had. All of this as a result of a simple biopsy?? I couldn't believe how sick I was! My unit manager at work, bless her, immediately got to work filing papers for short term disability. She didn't even ask me how long I thought I'd be out, which is good because I had no idea. To tell you the truth, I was so frightened and so sick and in so much pain I wondered if I'd even survive this thing.

The sarcoma surgeon was very concerned when the double vision didn't clear up. In the bald way that doctors tend to talk to nurses, he said to me, "I don't want you to stroke out on the table during surgery." So it was decided that the low beam radiation would be done before, instead of after, surgery. Meanwhile, I could see an ophthalmologist about my eyes. Accordingly, I spent a day at the hospital undergoing an MRI of the leg and a CAT scan of the chest, then being set up for radiation treatments.

Radiation

A radiation technologist put three little tattoo marks on my pelvic area that felt like tacks were being hammered into me. Then a big blue plastic form was placed under my legs, and swelled up to create a mold, into which my legs would be placed during radiation sessions, to ensure accurate positioning. The following Monday I had my first treatment. I was instructed to put on a blue hospital gown, and told to climb up onto a table with a big machine over it, vaguely resembling an X-ray machine. The blue leg mold was already in place for me to put my legs into. Two radiation technologists meticulously adjusted my position until it was exactly to their liking. Then they slammed a big cartridge into the machine, and left the room.

The machine whirred along on an axis, until its head was pointing under the side of my left knee. A thin buzzing noise---I counted seventeen seconds until it stopped. Then the door opened again, the technologist made some more adjustments and placed another cartridge into the machine, and the whole process was repeated, for about eleven seconds this time. The third time lasted only five or six seconds. The technologist came back in the room, helped me off the table, and assisted me into the dressing room.

That was it? Somehow, I'd expected radiation treatment to last forty minutes or so. But, less than ten minutes after I'd been called back, I was getting dressed to go home. That was the routine for the next five or six weeks, Monday through Friday, every day at 9:30 am. It wasn't easy. My nausea and pain continued for weeks. I lost 10 pounds, which would have pleased me at any other time, but I found that the doctor and nurse were very concerned about it. I also found that, if I stood on my left leg for more than about three seconds, I'd get a severe cramp like a charley horse. I couldn't eat. I couldn't sleep. I would take the pain pills (which had a Tylenol base), and then wake up at 3 am, drenched with sweat from the low grade fever which had broken.

To this day, I have no idea what caused the fever or the nausea. The doctor told me to drink Ensure or Boost to keep up my caloric intake. The nurse lectured me about not eating. How could I make her understand how the very idea of food revolted me? It was, I thought, as if someone had handed me a big spoonful of dirty litter out of my cats' litter box, and said, "You have to eat this to get better." She said, "Every bite you get in is a battle won. If you can't eat a meal, then eat a bite. Then eat another bite. You MUST keep up your strength for surgery."

At my very lowest point, I remember lying alone in bed (my husband was sleeping in another room, to give me more room to spread out) reciting the 23rd psalm over and over to myself. Getting up to the bathroom was difficult, sometimes impossible, without help, due to the pain and dizziness. I'd wake up at 5 each morning, and try to delay getting up for as long as possible; washing and dressing myself was exhausting. At 7:20, my college student nephew, who had no early classes, would arrive to drive me the 30 miles to radiation.

But then something happened. During the last two weeks, the pain suddenly started to get better. I started to have a little more appetite, too, and the food I ate stayed down. I was drinking a can of Boost (the smell of that drink will forever remind me of sarcomas and double vision!) each morning, and even eating some lunch and dinner. The dizziness was still there, but not as bad.

On my last day of radiation, the day before my birthday, the radiation tech said, "Congratulations: you've graduated!" and hugged me. The blue mold for my legs was torn into pieces and discarded. And - miraculous to me! - the tumor was now completely painless, and even felt smaller. But there was still the problem of the double vision. After a temporal artery biopsy, which proved to be negative, the ophthalmologist sent me to a neuro-opthalmologist, who sent me to a neurologist. None of them figured out what was triggering the problem, but I was cleared for surgery. Thank goodness!

Surgery

On January 18, while it was still dark out, my husband and I climbed the steps up to the hospital entrance. I was wearing a new blue dress, a Christmas present from my husband, since I had nothing else to wear that would go over the knee immobilizer and dressing I'd have after the surgery. I thought ruefully of my "skinny" jeans at home. After this, I'll have to wear baggy pants, I thought, because of the crater in my leg. I'll never wear skinny jeans again. The anesthesiologist checked me out, pronounced my jaws and neck and throat to be a "textbook example," which made me quite pleased, and the nurse came in and inserted an IV into the back of each of my hands.

I remember lying on the cart waiting for something to happen, and, the next thing I knew, it was late afternoon, I was vomiting into a small basin, and somebody was telling me, "Your surgery is over." I was relieved to discover that I was still alive, and that I still had two legs. Despite the surgeon's assurance that I'd be fine, somehow I'd expected I wouldn't be. That probably comes from working in the ER, where everyone assumes the worst until proven otherwise. I had a big knee immobilizer on my left leg, and a local anesthetic being administered by a pain pump. It worked pretty well.

Brachytherapy

The next morning, I had a migraine, most likely, I think, because I'd gone for some 30 hours without eating, other than a clear liquid dinner after surgery. Unfortunately, even a migraine can't be permitted to get in the way of preparations for brachytherapy. Two EMTs took me by cart down to an ambulance, and drove me to the radiation oncology department (in another building), where I was met by my radiation oncologist, a physicist, and a radiation technologist. While I lay with a towel on my aching head and tried not to throw up, they removed the knee immobilizer, exposing nine catheters that had been inserted into my leg during surgery, and did some adjustments to prepare for brachytherapy the following Monday. I was too sick to pay much attention, but was dimly aware that preparations took at least a couple of hours. Two and a half days after the surgery, I went home, with the knee immobilizer and a bulb shaped Jackson Pratt drain, which I was instructed to empty every eight hours and record the amount of fluid discarded.

The following Monday, I was back for brachytherapy. This consisted of lying on an uncomfortable table trying not to move, with a bunch of narrow tubes connected to the catheters in my leg. I was alone in the room; every so often the radiation machine would make a grumbling noise. These sessions lasted for about 20-30 minutes, as I remember; there were two a day for two days. Then the catheters were removed (ow!). The radiation oncologist told me that I could now bend my leg, although the surgical drain still made bending or weight bearing somewhat uncomfortable. Two weeks after surgery, I saw the surgeon in his office, and he removed the drain (ow!!!!) I was surprised how much less discomfort I had, once all the hardware was out of the incision.

Recovery

Well, it's been almost ten months since my surgery, and my birthday is almost here again. I went back to work about six weeks after my surgery, to assume a full work load. I haven't missed a day of work since then. I didn't need any special therapy after surgery, and stopped taking pain pills long before I'd run out of my initial prescriptions. (One thing about oncologists: they're VERY generous with pain medication.) I had underestimated how uncomfortable it is to have a drain in your leg. Once it was out, I felt much better, and much more able to move around and do ordinary tasks.

The night sweats and nausea never came back. I have no idea, to this day, what caused them, nor does my radiation oncologist. I'm just glad they're gone. The crater shaped incision filled out quite a bit after surgery, and now looks fairly normal if you don't look too close. And, yes, I'm still wearing my "skinny" jeans. I'm rubbing moisturizer on the surgical site every day, as I will have to do forever, since the sweat glands were destroyed by radiation, and the skin must be protected from cracking.

The surgeon told me that the surgical pathology report showed that the tumor was dead. I've gone back about every three months for an MRI of the upper leg, and a CAT scan of the chest. The radiation oncologist carefully examines the CAT scan for any sign of nodules, which would indicate metastasis. So far, so good.

Life Now

Life is pretty much back to normal for me now, but, of course, not a day goes by that I don't realize what I've been through, and what still could be ahead of me if it turns out that the sarcoma wasn't completely destroyed. I've learned since then that my sarcoma was rated as high grade--more prone to metastasize---and was larger (although not by much) than 5 cm in diameter. So for the rest of my life I'll be a bit nervous every time I get a follow-up scan. Sarcomas aren't respecters of that five-year rule, so there will be no time in my life that I can say with any certainty, "I'm cured!"

My experience made me more sensitive to the oncology patients we see in the ER. When appropriate, I will sometimes tell them I'm a sarcoma survivor, and I find that that knowledge makes them a little more comfortable in my care. They know, I guess, that I understand something of what they're going through. And I learn from them, too, since I'm always aware that someday it could be me again, lying on that bed getting treated, rather than being the nurse doing the treating.

By the way, I did get to France, the following September. When I was working on trip arrangements, I confided to my husband, "Remember when we were going up those steps into the hospital before my surgery? I didn't tell you this at the time, and it seems silly now, but when I swung open that door I was wondering if I'd ever come out again." And he said to me, "So was I."

I'm just glad for every healthy day I have, and I hope - and expect - there will be many more.

Thoughts for New Patients

I would urge new patients to make a note of any questions and concerns, and talk them over with your doctor, because your imagination can run away with you when you get a scary diagnosis like this.

Copyright © October 2012 Liddy Shriver Sarcoma Initiative.