A nurse practitioner at the National Institutes of Health in Bethesda, Maryland, has been working with me as part of their study on people who have a family history of Parkinson's Disease, but who don't yet have the condition themselves. As both my parents were diagnosed with PD late in life, I offered to join their study group. They are seeking early bio-markers that suggest eventual PD, in an effort to ease the diagnostic process to begin treatments earlier (and so more effectively.)
She has been seeing me for four years now, and we will finish this seven year study in the next two eighteen-month interval week long visits. I've enjoyed working with her, and with her partner, another nurse practitioner. They reimburse us for our transportation costs, and they house Rick for the five days in a family lodge on site, as I could not make the trip alone successfully.
At our visit last spring, she noted some irritation on my shoulder, and a swelling on my shin, and suggested I see a dermatologist right away. (In truth, she had suggested the same at the previous visit, but I hadn't followed through, as I was still working then, and struggling with the MS treatments.
I did schedule a visit to a dermatologist recommended by my neurologist, one working at the same hospital. I wanted to consolidate some of my doctor visits into one city, to facilitate collaboration and conversation between my doctors. On our wedding anniversary, May 30th, Rick and I drove into the city and I had the my skin checked out. The dermatologist found the two sites that the nurse in Bethesda had suggested notable enough to biopsy, and also found a third site on my back. He sent the tissue out for lab tests, and sent me home. But the very next day, I had a telephone call asking me to schedule a visit with his partner, a skin surgeon, as the biopsies had all come back positive. Two of them, the shin and shoulder, were basal cell carcinoma. The site on my back was malignant melanoma.It was suggested that I insist on an appointment with the surgeon within two days, and that mentioning the MM would assure that. It did.
That Monday, I saw the surgeon, and he explained that he would take small excisions of tissues, removing enough but not too much, and send the tissues out for biopsy. The two basal carcinoma sites could be biopsied right there in the office, but the MM would have to culture overnight. He would do the melanoma first, and the basal could wait until the melanoma had been addressed. I agreed, and he began to cut for the melanoma. Unfortunately, the biopsy was confusingly misreported, leading him to believe the site was on my shoulder, which was actually where one of the basal sites was. He showed me the report, and I agreed it had misled him to my right back, which he assumed was my right shoulder, which was irritated and nasty looking. When he realized the report's error, he read the results of that shoulder's tissue as Basal and was satisfied that it was now clear and sutured it. He then cut into the tissue at my left back, which did not look as serious ... simply a flat red marking like a simple sunburn. He sent that tissue out for culturing. He apologized profusely for the confusion, assuring me that the shoulder would heal with only a small white scar. We joked about his black suture stitches, and I told him I was a quilter and would probably not use black on such pale fabric. He said he would have to take special care to align his stitches neatly. His assistant covered the small open wound on my back with a dressing, and they sent me home with a precautionary prescription for an antibiotic, as the wound was open. I had one set of directions for caring for the shoulder's sutures, and was told to do nothing with the open wound as I would be back in the office in two days.
I was called the next day and asked to come in on Wednesday, as the tissue sent out for culture still showed melanoma cells. I returned, and he cut further, again having his assistant dress the open, now-enlarging wound. I went home to wait for the report on that tissue. The next day I was called and asked to come in again on Friday, for more tissue removal, as the biopsy still showed MM at the edges of the wound. I did go in, and he excised a larger area, and his assistant showed Rick how to dress it, as it was to be left open over the weekend and would need a dressing change on Sunday. They would call with the biopsy results on Monday morning to decide where to go from there.
With three surgeries on my back and one on my opposite shoulder behind me and the weekend ahead, I was intent on not letting the diagnosis of malignant melanoma get to me. I would "be calm and carry on," and tried to tidy up, but managed to turn wrong and hurt my lower back. I tried to work through it Saturday morning, but by late afternoon the pain had intensified, and I was conscious of trying to keep my shoulder sutures clean and my back wound stable. Rick came up to help me, change the dressing on my shoulder and when I sat on the side of the bed and turned toward him, something seized in my back. I was in a lot of pain. I got up to walk and said I felt funny, and immediately passed out. When I came to I found EMTs and Rick and Rob at my side. I had apparently had a small seizure, and the ambulance was called to take me to the local hospital.They in turn relieved the pain with morphine and decided to hold me overnight for observation. I slept restlessly through the night, and the following day was in pain again. This time they gave me a small dose of steroid by injection, which relieved the pain enough that I could get up and walk down the corridor and up and down the stairs in the hall. With that accomplished, they decided I could go home Sunday afternoon. The nurse suggested that she could help Rick change the dressing on my back before I went home, and so they did that together.
Monday morning the telephone call had good news: the margins of the site on my back now had clear margins and could be sutured closed. We drove again and had that taken care of. They told me to stay on the antibiotic for two weeks, and then to come back to have the sutures in my shoulder removed. The back would stay for another week beyond that. When they were all out, then the surgeon could address the simple basal site on my shin. I asked why they couldn't do it now. The physician's assistant said that I had enough healing to do already, with two surgical sites. And so the month of June passed before I went back for more surgery.
By the beginning on July, I had the sutures removed from my shoulder and my back. The wound on my back was so large, the surgeon had closed it by pushing skin from above and below and beside the circular opening that Rick said was about the size of a tennis ball. The result was what I decided to call my "Mark of Zorro." A large reddish-purple Z appeared on my back. I tried not to worry about it, as he said that it would fade to white in time. He then cut away at the basal site on my shin, checked the tissue there in his office, declared it clear and sutured it closed. Again I left with a prescription for antibiotic and with instructions for changing the dressing on my shin. I would go back in three weeks to have those sutures removed. And I did.
By the end of July, I returned to the dermatologist for my first three-month checkup. He inspected the surgery sites and seemed pleased with the healing progress. He asked me if there were any other sites that I was concerned about. I said yes, there was a wart on the calf of my other leg, and a brown 'stain' on my inner forearm. He looked at both, said he would biopsy them but not to be concerned as he didn't think they looked like skin cancer.
But the following day, the telephone call came, and this time it was the dermatologist himself, advising me that my leg was a squamous site, and my forearm was another malignant melanoma site. I asked him then about basal, squamous, and melanoma. Were they stages of the same cancer, I wondered? He answered no, they are in fact three distinctly different cancers. And it was my misfortune to have all three cancers, something that not many patients experience. I was again to call the surgeon and ask for an appointment ASAP because, again, it was malignant. And so I did.
Having become quite friendly with the receptionist at the skin surgeon's office, I called, told her of the new biopsies, and she fit me into the schedule for the next day. The surgeon, having just seen me a week or two before to remove the sutures in my back, was very compassionate and went right to work on my forearm, telling me that the squamous could wait and that the melanoma must be taken care of first. He again took a small portion of tissue, cutting in a circular direction around the site of the biopsy. This incision was no larger than the size of a nickel. He sent it off for biopsy and said they would call the next day with a result.
I need to explain here, that when the tissue is examined for melanoma, the surgeon takes as little as he can, and when the results come back, they come with clear indications as to which portion of the circular cut still shows evidence of melanoma. It is mapped out in a sketch on the report, so that the surgeon knows in which direction to continue cutting, and whether it is deeper or superficial. This is called Moh surgery (pronounced moe, like the doctor's name.) Some Moh surgery, especially for basal and some squamous call cancers, is done right there in the surgeon's office. Melanoma, though, requires a longer span of observation, and my surgeon called it "Slow Moh" surgery, wherein the patient goes home and comes back a day or two later for more surgery or for closure. My results have always indicated superficial cutting, which is a stage 1 melanoma (less than 2 mm in depth.) And when the biopsy comes back showing "clear margins" the surgery stops and the wound is closed.
They called me in for a second cutting; again he sent the tissue out and said they would call the next day. When they did call, the report was clear and so I went in for the sutures, and to have the squamous cell on my left lower leg removed. That biopsy could be done right there in the office, and it again, as the basal cell surgeries had been, it was clear and could be closed with sutures the same day. So I went home with two sets of sutures that day, and papers to tell me how to care for them, and a renewal of the antibiotic prescription. I would be back in three weeks to have both sets of sutures removed.
Curious beyond taking the surgeon's time with questions about the three types of cancer, I turned instead to reputable online resources. My understandings from that research are that basal cell carcinoma is most often superficial and rarely spreads. Squamous cell carcinoma is more commonly malignant, and spreads in depth (leading to higher stages) and can also metastasize (spread to interior organs.) Melanoma is always malignant (hence the title, Malignant Melanoma) but in early stages can be contained at the superficial level with careful monitoring and immediate removals via surgeries.
That round of surgeries finished the summer of 2012 for Rick and me. Later in the the fall, I went back for another three-month check with the dermatologist, who found several sites on my hands and forehead that looked suspiciously like beginning cancer sites. He treated those with cryosurgery ... short blasts of liquid nitrogen, essentially freezing the surface skin cells. He told me they would likely blister, possibly ooze, then dry and fall off similar to chicken pox or shingles would do. That process took about three weeks, during which time I left those open to the air, without dressings. It wasn't very pretty, but my hair covered most of my forehead.
Three months later, in the winter, I went back to see him, and this time he found a spot on my forehead that had returned despite the fall's cryosurgery, and saw another on my nose that had been repeatedly bleeding each time I washed my face. There were a few others on my hands and chin that were dealt with again by cryosurgery, but he biopsied my forehead and nose. I confess I was reluctant to let him biopsy my nose, but he told me that if he didn't, and it grew, it would be more damage than if I let him biopsy it now.
The following morning, I received the call that both biopsies had come back NEGATIVE! (Which, in biopsy land, is a good thing ... negative for cancer cells.) That was the first time any biopsy he'd done came back with negative results. And in the spring, when I saw him for the next three-month visit, he found nothing needing biopsy and only one area, my upper lip, needing cryosurgery. He told me that, if I have two three-month checks in a row like that, we might dare to cut back to six-month checks.
My next visit with him is next month, in June. More than a year will have passed since my first visit to his office last May. Through all of these visits, and biopsies, and surgeries, and sutures and removals, I have experience only the pain of the initial momentary sting of the liquid nitrogen, and the repetitive burn of the first shots of lidocaine preceding the surgeries. The surgeon seems to guide the needle in a little dance around the site, quite jabs in and out, each one feeling less pain as the solution begins to take effect. Both doctors have a habit of saying "sorry, sorry about that, sorry" as they numb or freeze the areas. And when I had cryosurgery on my upper lip, the dermatologist joked that I wasn't to tell anyone that he'd given me the fat lip. and it did swell and look like I'd taken a punch for about a week. But it, too, has faded to invisibility now.
The scars on my forearm, shin, lower leg and shoulder are all fading to white, as I was told they would. I cannot easily see my seven-inch long "Mark of Zorro" on my back, but Rick tells me that it, too, is fading to white. I have no need of tattoos, I tell people, for I have my own imprints as memories of eight skin surgeries in five separate sites, closed with over a hundred sutures, dealing with three different kinds of cancer. Some day I will dare to say that I am cancer-free, perhaps ... and that is when I've had no positive biopsies for at least a year ... Then, I can return to the American Red Cross as a regular blood donor. I still have a goal of donating ten gallons during my lifetime, and I have only reached eight gallons, so far.
The month before I launched my new title, Multiple Sclerosis, Melanoma and More, I visited the dermatologist again for a three month checkup. He decided to prescribe a cream for my forehead, and did a biopsy on my chin.
The "cream" turned out to be a plant oil called Picato, and I reacted to it just as I usually react to poison ivy: a large swelling and rash on my forehead lasted about three weeks, but eventually did clear. He prescribed this in lieu of doing more cryosurgery, but I would have preferred the freeze and its smaller reaction to the new treatment. Never again.
And the biopsy on my chin? It came back positive for more squamous cell carcinoma, and I returned to the surgeon to talk about whether to have more surgery or to wait it out, as squamous metastasizes at a slower rate than melanoma. I refused surgery that week, but later returned to allow it.
You can read about the skin surgeries at my health blog, http://terrysthoughtsandthreads.wordpress.com.
You can buy it at my webstore. While quantities last, I'm offering a two for one price of $12.00 for both MS books. Visit my page at Two for One Sale. And while you're there, sign up on the home page, at www.TerryCrawfordPalardy.com.
Here's another video, this one taken at the New England Authors Expo in the Danversport Yacht Club at the end of July, 2013, when I launched the sequel: Multiple Sclerosis, Melanoma and More.