Melanoma - the gritty, graphic truth

Friday morning I woke up to a news snippet on the radio about an entertainer who had died. The cause of his death was melanoma, malignant skin cancer. After some investigation I discovered the entertainer in questions was Danny Federici, keyboard player in Bruce Springsteen's E-Street Band. He was 58.

I didn't know him personally. I couldn't have told you his name before this. But this news struck a nerve with me because on April 3, 2006, my Mom died, also of melanoma. I don't think that melanoma is taken nearly as seriously as it should be. There are so many types of cancer we've learned to fear, but somehow skin cancer, as preventable as it is, often doesn't make the list. Lung cancer? Sure. Breast cancer? Of course. Prostate cancer? Yeah guys, a good reason to get those physicals. Cervical cancer? Pap smears are lifesavers. But how many of us actually do skin self-exams or visit a dermatologist for regular skin exams? Not many. Not nearly enough.

I don't have any photos to show the exact damage my Mom suffered, which is a shame - during the later stages of her illness she lamented that there weren't photos of advanced melanoma available so people could see just what they were risking every time they tanned. I do have a photo of Mom taken in the early 1960's, in which she was laying out in the backyard sunbathing. Many years later, she wrote on the back of that photo in a very shaky hand, "This is why I got melanoma!"

Don't let that time span fool you: it's not the sunburn you got last week that causes skin cancer, it's the sunburn you got 20 years ago. Back when I was a kid we weren't as aware of the risks as we are now, yet today a tan is still regarded as "a healthy glow" when it really should say "I'm flirting with a really hideous premature death". An interesting conversation happened at work a couple of weeks ago. It was a beautiful day, warm and sunny, and some of the interns chose to enjoy lunch outside. Afterward they came into the kitchen where I was chatting with a volunteer. The interns were comparing how much sun they'd gotten - one was already showing signs of a burn. The volunteer told me that she didn't try to tan anymore since she had a basal cell carcinoma (benign skin cancer) taken off her nose. I told her that I had also had a basal cell removed near my ear (truth, and I hope that's the only skin cancer diagnosis I ever receive), but that my Mom died of melanoma and I never want to see anything like that again. The interns left, but after they got out into the hall I heard one of them scoff about our skin cancer conversation. Must be nice to be young and bulletproof.

This post isn't for the faint of heart: I want to provide a description of exactly what my Mom went through, from the time that her melanoma was diagnosed until she died, six months later. The progression of her illness was very typical for the stage and location of her tumor, according to my copious research. I did a lot of investigation during this period; six months was par for the course, and the spread of her cancer followed the typical pattern. A tumor located on the torso usually spreads as follows: lymph nodes, lungs, liver, brain, other internal organs.

I wasn't too clear on the function of the lymphatic system and getting a good understanding of it took some effort, so here's a quick summary: the lymphatic system takes waste away from the organs and transports it to the liver for filtration and removal. Everything that lives must eat, and that includes our organs. Everything that eats, generates waste, and that's what the lymphatic system removes from our bodies. That's why the lymph nodes are the gateway for tumor metastasis - because they channel waste from all over the body. In case you ever wondered why they remove lymph nodes when someone has a tumor, that's why. They can tell by examining the lymph nodes if the cancer has spread by the presence or absence of cancer cells, and removing those nodes puts up a roadblock in the path of metastasis, making it harder for a cancer to spread.

Mom's melanoma was actually a recurrance of one she had in 1985. The original tumor was located on the outside of her left arm, midway between the shoulder and elbow. They removed the tumor (with a 2-inch margin to get any stray cells - excising 2 inches of tissue all the way around the tumor and down to the bone, she had one hell of a scar) and they also removed the lymph nodes under her arm, both to see if it had spread and to make further spread more difficult. She enrolled in a clinical trial being conducted by Duke Medical Center, and it worked: it gave her another 20 years.

Fast-forward to October 2005. Mom had a bump under her left arm that just wouldn't heal. I think she suspected there was something really wrong, but she had a lot of mental things working at the time, including continued grief for Daddy, who died in 2000. She delayed getting that bump checked out until it formed a blister and broke, bleeding profusely. By then it was far too late; the bloodstream is a tremendously effective way for cancer cells to spread throughout the body. Her dermatologist immediately recognized the bump for what it was - advanced melanoma - and sent her to Duke Medical Center. They removed the tumor, which was under her arm, a very hard place to heal after surgery even if there's no cancer involved. With cancer, forget about it - her incision never did heal fully. For the rest of her life she lived with an oozing surgical wound under her left arm. Believe it or not, that was one of the better features of her illness.

Her left arm began to swell, a condition called cellulitis. It became greatly enlarged, about the same diameter as a man's thigh. Between the unhealed surgical incision and the cellulitis she was unable to lower her arm to her side, and it became a useless appendage she had to keep propped up 24/7. Her arm became rock-hard because of the fluid buildup, and was cold to the touch because of impaired circulation. She was on and off of antibiotics and other meds to treat the cellulitis for the rest of her life.

In late January or early February she began to develop additional lesions on her arm. These lesions followed the same progression as the first: a bump, then a blister, then they burst and bled. After that they wouldn't heal. Instead they just oozed a really nasty smelling bloody discharge. Think fish lying in the sun, three days dead. It was the smell of rotting tissue. Eventually these lesions sloughed off (essentially melted and rotted away) and left a layer of black tissue underneath. Totally black, dead tissue. At this point she had also begun to cough up blood, an indicator that her cancer had metastasized to her lungs.

In early February she had a PET scan which showed multiple hot spots on her lungs and at least one on her liver, indicating metastases. A PET scan is actually pretty cool - Positron Emission Tomography. Tumors are greedy little buggers, they consume a higher level of glucose and nutrients than healthy tissue. So in a PET scan they inject glucose tagged with a radioactive isotope, then do a series of radiographic studies to see if there are areas in the body that are consuming this glucose at a higher rate than normal. These spots light up on the scan and usually indicate cancer cells.

Mom lived in North Carolina, where Hubby and I are from. I made two trips from Colorado to NC during her illness. The first was in mid-February and lasted five days. During that time I helped to take care of Mom, and we hung out together and had a good time. I met her home health care nurse and additional members of her medical team. This was the next-to-last time Mom knew who I was. When I returned on my second visit in late March, Mom looked at me, asked who I was and demanded that I leave her house or she would call the cops. (In the hospital she had a brief period of lucidity, which is fairly typical for one who is near death. More on that later.)

My first visit to NC was pleasant; my second was a surreal nightmare. My sisters were physically and emotionally exhausted from trying to take care of Mom at home. Mom wouldn't allow hospice to come in, first out of denial, then she wasn't in her right mind and couldn't see that my sisters were overwhelmed. Home health care was no longer adequate. The scattered lesions I had observed on her left arm during my visit the previous month had merged into one giant oozing black sore that was larger than my outstretched hand. The lesions had spread to her chest and back as well, so there were hundreds of individual oozing bumps that wept a bloody, reeking discharge. Her dressings had to be changed every three hours or so, around the clock. Her arm was so large that normal pajamas wouldn't fit, no matter the size. On my February visit I bought her half a dozen pair of pajamas and additional fabric that I used to enlarge the left arm of each PJ top. Those pajamas were the only thing she was able to wear for the rest of her life. The smell from that discharge permeated every room, every soft surface of the house. If it couldn't be cleaned it had to be disposed of, including her mattresses and her recliner. I had read that some people are simply more susceptible to that smell than others, and apparently I am one of them. The only way I was able to cope was to keep some Vicks smeared under my nose like they do in morgues.

Within 18 hours of my arrival in NC (and after a mostly-sleepless night, between bandage changes, and Mom alternately threatening to have us arrested if we didn't leave her house and begging us to kill her) I was having my Mom admitted to Duke Medical Center against her will. This actually took some doing. Fortunately her Home Health care nurse came by early that morning and saw just how badly Mom had deteriorated in just a few days, and started arranging the admission with Mom's doctor. The only way to get her to the hospital was by ambulance, because of her left arm - she couldn't fit into a car. I had to convince the paramedics to take her against her will, because despite her condition she still tried to act like everything was fine, and without a medical power of attorney to back me up, I had to depend on the paramedics to see the problem and do the right thing, which they did. The ER doctor who first examined Mom was horrified by her condition and told us that if we hadn't brought her to the hospital when we did, she likely would have died within 24 hours and it would have been gruesome. All the while she was demanding to be released and taken home, but fortunately the ER doc saw that her mental status was severely altered (as a result of the tumors that had spread to her brain) and once he consulted with Mom's oncologist he admitted her over her objections.

There were some other factors in play as well. It turned out that Mom was also developing pneumonia, and her cellulitis was worse as well. She was also dehydrated because she was losing a lot of fluid to the discharge and we couldn't get her to drink enough - in her mental state she thought we were trying to poison her. She was also in intense pain which we couldn't control at home -Fentanyl didn't even come close, and in the hospital morphine wouldn't touch it; she wound up on Demerol. I can't say enough good things about the nurses at Duke Medical Center, they took incredible care of her. She stayed in the hospital until she died five days later, but during those five days she received the care that my sisters and I didn't have the training to provide, and I believe this enabled Mom to reach some level of acceptance regarding her impending death.

My sisters and I worked out sort of a routine of visiting so one of use was there most of the time. As the family night-owl I usually went to the hospital in the evening and stayed until the wee hours of the morning, often 1 or 2am. Then I'd go back to Mom's house and sleep till late morning. On the third day of her hospitalization Mom had a few hours of lucidity in which she knew who everyone was, knew where she was and why, and was more like her old self than she had been since Daddy died in 2000. My sister called me from the hospital and I rushed over to find Mom sitting up in bed, awake and aware. It was amazing to see. This period only lasted a few hours, but it was like one final gift. There was a booklet from Hospice that detailed things that typically happen during the dying process, and this period of lucidity was listed as often happening a few days before death. By that evening her period of lucidity was over and she lapsed into unconsciousness again. She did rally briefly that night, enough to say she was hungry. I fed her some chocolate pudding which she enjoyed tremendously. After just a few bites she'd had enough and said she was going to sleep. Those were the last words I heard her speak, and the last time I know of that she was conscious. That was Saturday night. That same evening her kidneys began to shut down, and by Sunday night her urine output was near zero. By Monday they'd shut down altogether.

I arrived at the hospital on Monday night and immediately knew there was something wrong. As I approached her room I could hear her struggling to breathe from half a dozen doors away. Her breathing had fallen into a pattern called Cheyne-Stokes, which usually happens when death is imminent. The patient's rate of respiration slows drastically, maybe 3 breaths per minute, and the breathing is loud and labored. I found Mom's nurse who told me she'd only come on duty a couple of hours before but Mom had been doing that when her shift started. The nurse advised me to go ahead and call other family members, with the caveat that it could be minutes, hours or days. So within 10 minutes of arriving I was on the phone, calling my sisters to come to the hospital. It was a little after 9pm. Two of my three sisters arrived by 10pm or a little after (the third was en route) and Mom died at 11:20pm. Nothing dramatic at the end; she took one breath and simply didn't take another. She was 71.

Copies of the Hospice booklet on dying were readily available at Duke, and I found myself picking up copies and giving them away to friends or family on their request and needing to get another copy for myself. Our society discourages discussions on death and dying, and the majority of people in our society know very little about the dying process. Those booklets were the only source of information that many had ever seen, so of course they were snatched up quickly. I did manage to bring home a copy for myself. I hope I won't need that info again for a long, long while.

Now you can see why this news item caught my attention so firmly. This also explains my year-round pallor, fondness for sunhats and the bottle of sunblock stored in my desk drawer (in case I want to go walking at lunch). I hope this story helps folks take skin cancer and sun exposure risks more seriously. There aren't many effective treatment options for melanoma that's advanced past stage 2 - that's why the survival rate is so slim for advanced melanoma. Mom knew that her diagnosis was most likely a death sentence. That's one reason to place heavy emphasis on prevention - by the time you get around to having that bump checked out, it may be too late. So be sun-smart and prevent the damage.

This is a story that I wanted to share. I hope this causes a few folks to reassess their own choices, go ahead and get that spot checked, or make sure to use sunblock! You may very well save your own life.

I'll get back to my usual rabblerousing and muckracking in my next post. I've got some great material to work with - there was a documentary on PBS' Frontline which compared medical care in different countries with US medical care and looks to see how we can fix our broken healthcare system. It's available in its entirety online at www.pbs.org/wgbh/pages/frontline/sickaroundtheworld Hubby also found a fascinating-sounding documentary for us to watch in the next few days which examines the war in Iraq and asks the questions 'who really profits?' and 'where does all the money from the war really go?' I think the answers to those questions will be quite infuriating.

Later,
AuntieM