An Update on the New Treatment

The dermatologist, whom I’ll call Dr. Williams in my new book, recommended a new treatment for the Actinic Keratosis on my forehead (commonly called AK, and considered a pre-cursor of cancer.)  Normally, he would use cryosurgery: squirts of liquid nitrogen that freeze the skin cells, resulting in their falling off after blistering and scabbing over. He had already done that on a few spots of my forehead, but decided he would prescribe a ‘cream’ instead. I put cream in quotes because it  is a clear, slippery liquid that comes in a dear little tube that is about  one inch long, with a plastic cap nearly  the size of the tube itself.

I confess I may be somewhat biased in my report of this, as it is once again a self-treatment rather than a treatment by a physician or nurse. Those of you who know me know I lost patience with the nightly self-injections for multiple sclerosis – a ‘one size fits all’ treatment that had various side effects for various people using the DMD (disease modifying drug.) It modified nothing positively, for me, and led to increased depression and the loss of my career as a teacher. But that’s a story I tell in my book, Multiple Sclerosis, an Enigma.

Today, six days after beginning the three-day treatment, I am wondering why I accepted this prescription. I was surprised when I opened the first tube on Friday night. Rather than the cream or lotion I expected, I found that the tube, small as it was, was nearly empty, and it took all of my left-hand strength (which is minimal at best) to squeeze out the first drop. My right fingertip received the drop, and I put the tube down and brushed the hair back from my forehead. I touched the first spot, and rubbed the liquid in, finding it surprisingly viscous (easy to spread) and remembered the lengthy directions I had read, warning against applying it unnecessarily to unaffected skin. I dabbed my finger off and went back to the tube, to forcibly express a second drop, to do the center of my forehead above my nose. And repeating these steps, I struggled and managed to get another drop out of the tube, which I used on the spot at the other side of my forehead. And then, following the directions, I scrubbed my hands with soap and water to get any remaining essence of the plant oil off.

And that’s when it hit me … plant oil …  like poison ivy’s oil?  … to which I react very excessively. Would I respond well to this new treatment? Or would I make things worse by over-reacting. My supply of histamines seems endless when I have poison ivy; I swell up and it spreads widely. When it’s on my face, it is miserably hot, causing more perspiration and more spreading of the oil. Friday night, when I applied the first dose, the temperature outside was 92, and inside was in the high eighties, as our downstairs’ air conditioner was dying a noisy death. Worse than the actual temperature was the humidity, which was over seventy. Worry set in, no doubt raising my own body temperature another degree or two.

Saturday morning I read the medication directions again, looking for information on washing the sites; I found nothing and so guessed that a doctor would not prescribe something that would leave skin unwashed for three days running, so I carefully patted my forehead with a facial washcloth from Ponds, and rinse it with clear water in my cupped hand.

Saturday night, with the new air conditioner set in the window by our able-bodied son, the house was cooler. I opened the second tiny tube and carefully applied the droplets of oil to the sites on my forehead. It was a bit easier to locate each area as they were beginning to turn red. I disposed of the used tube, washed my hands and went in to sit in the cool air. The temperature outside was still in the high eighties at 7:00 pm, but it was in the high seventies inside. At bedtime, Rick had the bedroom air conditioner on and it was a more comfortable  seventy degrees.

I didn’t call the dermatologist, because he had told me that my forehead would be red. I think I remember him saying it would take about a month to work its way through the stages of red, blistering, scabbing or flaking and then shedding, leaving  pristine new skin unveiled. I knew this would be a very long month.

Sunday night the third tube was opened and the treatment completed. My forehead was now a deeper red, with some cracking in the skin, and the oil burned a bit in the center of my forehead. But that was the last dose, and I wouldn’t have to apply it again.

Monday I called the skin surgeon’s office, and asked for an appointment with Dr. Walker (the pseudonym I use in my new book) to talk about the biopsy they were to receive Friday afternoon from Dr. Williams’ office. As they hadn’t received it yet, they would call me back later in the day to schedule the appointment.  When they received it and started to schedule me for office surgery, I asked her instead to schedule me for an office consult. She seemed a bit confused, but I just repeated to her that I wanted to talk with him about treatment options rather than just having the surgery.

Tuesday my forehead was beginning to blister in places and flake in others. Most of it was now a deep red, especially if I was moving around. Sitting and typing seemed to allow it to lighten in color.

Wednesday was much like Tuesday. After patting it clean, I asked Rick to take a good look at my forehead, to see the flaking and blistering. He did, and said that seemed to be what the Dr. Williams had predicted. Then we went out to lunch at our favorite restaurant, had our favorite meals, brought our ‘other half’ home for tomorrow’s lunch. I thought I might leave my cap on while we ate, to avoid showing my forehead, but it was too hot and so I removed it but kept my head down as much as possible. No one commented; had had said no one would notice. I was relived.

I asked Rick to take a picture of my forehead so that we could compare it again in a week to see whether things are improving or not. I told him it feels like it is cracking open, though I know it isn’t. Raising my eyebrows hurt (“If that hurts, don’t do that,” my favorite old common-sense doctor would have told me.)

Tomorrow is my appointment with Dr. Walker. I will ask him my question: how long are we going to do this? When is enough really too much? Are there other alternatives to surgery, chemo and radiation? Could I have laser surgery? Is there something else? The insurance companies are encouraging subscribers to ask these questions, and more, in the interest of eliminating unnecessary tests and procedures. I know that squamous cell carcinoma must be treated or it will become malignant and spread to other internal organs, just as melanoma would do. It doesn’t ‘turn into’ melanoma … Basal, Squamous and Melanoma are three different kinds of cancer. But they are cancer, treatable in the early stages, and deadly if left untreated. Wednesday July 10, Day 6

I have the day six picture here. The treatment of my forehead is complete: we now have to watch and wait to see how my skin reacts. It may take a month or two. Patience is a pre-requisite of cancer; self-advocacy is a pre-requisite, (or at least a learn-by-doing skill,) for multiple sclerosis. I guess I am learning that retirement is not like the fun and games shown on television commercials. It is, instead, having enough time to see to all of the things that are going wrong with our bodies. We really need to make a set of commercials about that.

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  1. Hi Terry ….. Hope you get to feel better soon. I totally agree with your last comment. The retirement one … I retired in February … and, believe you me, I hadn’t seen so many doctors during the time that I was working! Feels like my body is falling apart … but who am I to complain? I know that others have it worse. Sending good vibes your way!!! 🙂

    • Thank you, I cannot complain, as we are truly living our happily ever after years, together. We’re not able to do all that we thought we might at this point in our lives … our parents had decades of retirement before their catastrophic illnesses emerged. We spent much of our mature working life caring for them in their own homes.

      We are in our own home now, and we can still shuttle from doctor to doctor on our own (together, always.) But it sure is a surprise in comparison to what we thought we’d be shuttling to.

      Still, I think to myself, if this life were to end, and all the medical business with it, what would my next life be? Would I be more fortunate, or would I find myself a pauper in a country unwilling to even see me? And then I realize that this is the life that I want to keep, messy as it is sometimes.

      Be well, my friend.

  2. You be well too, friend!!! I wish you strength to go on, endurance for what may come and togetherness. You next life may be better if you learned the lessons that you were supposed to learn in this one …. I believe that you have b/c of the nature of your medical condition. Anyway …. this is the one that we have, you are right!! 🙂

  3. Yeah Terry! We had planned to travel a bit and see, if not the world, at least the USA! But instead, we spend our days quietly with my precious husband taking charge of all household duties ( laundry, dusting, cooking ,etc.) But, you know what? We have a lovely life because we have a wonderful family and great friends. I sure am hoping those red yucky spots on your forehead give way to beautiful, normal skin.! Hoping the treatment works… You truly are a fascinating lady and I am proud to call you my friend… Sandra~

  4. It is not lost on me that people who would otherwise never have met have been brought together by something as coldly inanimate as a computer and all of its technological idiosyncrasies. I’m happy to call both you, Sandra, and Dr. Rex, my web friends. ❤

    • Hi there, Terry …. better late than never!! Been meaning to reply to your comment. I love the way you state about the computer and it’s “technological idiosyncrasies” ….. LOL!! Rings so true!!!
      I’m honored that you consider me your web friend ….. please, know that it’s the same here!!!
      Have a great day!!! Be well …… 🙂

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