The clocks all went back an hour this morning. I’m very happy that they don’t do that before Halloween, although our town delayed Trick or Treating for thirty minutes to accommodate the many working parents who needed those extra minutes to get home before the trick or treaters went out. We had a little drizzle of rain, but that did not dissuade the parents who had toddlers’ costumes ready. I think we saw about sixty children with assorted parents in tow.
The dermatologist’s secretary called me on Halloween morning to let me know that the repeated biopsies of my arm showed no ‘atypical nevi’ at the edges, and pronounced the earlier reading scar tissue. I’m clear, now, until the New Year. Two full months of no digging or prodding or waiting for call backs.
I found some old cafe-type curtains when we moved into this house almost twenty years ago, and tucked them away “just in case.” This week, I found a use for them. We used them to drape the space underneath the cutting table, hiding the storage area from view. The curtains are reversible: a solid red cotton on one side, and a forty-fifty-style small print of red and brown medallions on the other. That print reminds me of the kitchen wallpaper in our home in Boston during the fifties. The fabric, perhaps because of its age and frequent washing, is incredibly soft,; as I hung them out on the line to dry they brought a wonderful fresh-air feeling into the Quilt Shop with them. I had to hem two of them to match the others, but that was fairly easy. I still have three longer ones left, and am thinking of possibilities for them. I could have just tossed them out when we moved in, as I hung my own yellow gingham curtains in the kitchen, but instead I added them to my fabric stash. And that’s where they were when I realized a new use for them.
My new book has gone through a week and a half of proofreading, changing, re-proofing and additional text being added. I’ve now reached a point where I’m re-thinking the idea of publishing it as the two-part, mystery story and annotated album of quilts that it is presently. To print it in it’s current state will cost more than I think most customers will want to pay; it’s a paperback, after all. I might separate the two parts and publish two distinct, slimmer volumes with more reasonable prices. I know I wouldn’t want to pay almost $30.00 for the combined volume, but might be willing to pay $15.00 each. Or not.
We’re off to the quilt supply this coming week to purchase more notions and fabrics. Then our Abby (vehicle) goes in for her 50,000 mile tune-up to be ready for our long ride to Bethesda later this month. This will be my fourth week-long visit to NIH (National Institute of Health) for the Parkinson’s Bio-marker Study group. When I told my colleagues at school how well I was treated there in the hospital, one of them told me I really ought to take a cruise sometime to experience true luxury! So I call these visits my cruises.
November will be a busy month. Be well, all, and thanks for stopping by here to see how I’m doing.
I am getting ready to add a new department to Terry’s Thoughts and Threads in Wooden Toy and Gift. We are going to open a Quilt Shop and stock fabrics, notions, batting, ribbons, threads and more. I have long missed the former Cressy’s 5 and 10 that was in our town center, and many others have told me that they, too, miss the convenience of being able to buy sewing supplies right here in town.
Rick and I will be opening the Quilt Shop on Small Business Saturday, November 30th. The shop’s opening will coincide with the release of my new book, titled The Quilter’s Quarters. It will also be the weekend before the Georgetown Peabody Library once again hosts the Georgetown Quilt Exhibit, which will hang from December through January .
We will make another trip next week to the wholesale quilt supplier to gather more thread colors, fabrics and embroidery floss. I have one friend who is going to place some one yard cuts of fabric with me on consignment: we’ll call that Barb’s Yards. Another will sell me her quilting patterns wholesale. And an artist friend who does beautiful paintings is going to place greeting cards with her artwork on consignment. The shop is beginning to look more full, which will please customers who want to shop local.
We met with with the dermatologist again today, so that he could see whether the two sites on my arm have enlarged or stayed the same. He decided to biopsy them again, a little wider. If these two come back with clear margins, I’ll be free until January. But if the new biopsy samples still show nevi melanocytic cells (the not-yet melanoma) then he will send me on to the surgery for a wider excision (more surgery, more sutures.)ers.
I told him I would be going to Bethesda next month, and asked for a copy of the biopsies. I know the nurse practitioners there like to be kept up to date on health issues with the people in their Parkinson’s Biomarker seven year study group. If I’m lucky, these new biopsies won’t call for additional surgery. I don’t know how that might effect the tests they do at NIH. But time will tell.
The dermatologist called me Friday to let me know that the biopsy results show the brown spots re-appearing on my forearm are not necessarily true melanoma; he called them atypical nevi. He suggests two choices: return to his office in two weeks for a follow-up biopsy to see whether the new spots are still expanding across the original surgical site, or go directly to the surgeon and have them cut out now.
I asked him which course he would recommend, and he said he would wait for the second biopsies before opting for more surgery. I agreed. Evidently if the spots show more atypical cells beyond the original biopsy did (they extended right to the borders of the first) then it is likely to become more malignant melanoma. If they haven’t changed at all, they are a slower growing atypical cell and would not require surgery, yet.
Such a funny word … yet. I used it often to close a sentence uttered by students … “I don’t get it” (yet.) ”I can’t do it” (yet.) “My essay isn’t finished. (yet.) It is a word that offers a promise of more to come, and that more can be a positive thing, or a negative.
Coaching my students to always seek to improve their work, making it “even better” than they might have in a first draft was an uphill Sisyphean push. “Yet” did impose an expectation of improvement, but gave it with an allowance for time. I’m sure it was a mixed blessing to the students.
“Yet,” in reference to the progression of a disease, can be very negative, or very positive. When a skin surgeon is doing Moh surgery (repeated cuttings until biopsy shows clear margins) :yet” implies that it will, eventually, be a clear margin, with no further evidence of the cancer. If he says it’s not clear yet, that implies a disappointment.
I have accepted that I am not finished “yet” with melanoma treatments. In truth, I may never be finished. Or I may, at some point, decide that I am finished. Right now, I feel free to make that choice. I do have things to look forward to, and I also have things that I can look back on and take satisfaction in having accomplished them. My children are grown. My grandchildren are also nearly grown. My parents are at rest.
There may be more ahead in our lives … more grandchildren, and great-grandchildren … all of that will happen in its own time, whether seen by me or not. There is a peace in knowing that. There is rest ahead.
There are no immediate reasons to believe that MS will ever be understood or cured in my lifetime. I can say the same of malignant melanoma. We can say the same of the two-party system in Washington. The country is not waiting for someone like me to solve its problems. I vote, as that is my responsibility … it is the responsibility of all of us, though some choose not to do it. But whether I vote or not (and I do) Congress will still be arguing decades from now … God willing another century from now. Nothing I do with my vote will change that.
I’m tired of the newscasters opening eveyr news program with stories of Congress bickering with each other. I’m sad to hear of the hardship this government closure is imposing on some American families. I know I am among the fortunate, with a self-funded pension not accessible by politicians. I know why I have what I have … because the union advocated for us. I became the union and took my turn in difficult years of negotiating. I tried to do so with dignity, and gentleness. I counseled younger teachers in bitter years to have faith in the strong people that stood around us. But I am weary of the fights. I am weary of the melanoma fight, the MS fight, and the depression fight. I am weary of so much of it.
I will stay in it for now. I want to get the new Quilt Shop up and running. I want it to be a success, financially, to replace the rest of the pension that I lost by giving in to MS and retiring early. I want to succeed in earning that little bit more for us. If having the continued surgeries led to a definite end of melanoma, I would not hesitate. But going back to repeat sites is not progress. It is not treatment. It is only maintenance, and it is tiring.
I do admire those who can stay in the fight. They most likely still have responsibilities to meet within their families, and I wish them well in their endeavors. Time will tell how long I can keep up with them, and with “yet.”
When Rob was a little boy and riding with me every morning, he to day care and I to school, we would watch the changing seasons together. We rode on a beautiful road with many trees and handsome homes, traveling from our town through two others before reaching the town where we would both spend our days. As we approached the Burger King at an intersection, he would politely ask whether we had extra money that morning. If I said no, he’d say nothing more. If I said yes, he’d ask (politely again) could we stop to buy a little box of mini-muffins for him to share with his day care friends, and we would.
Each fall, when he was little, we would appreciate the amazing foliage we were privileged to enjoy along our way. I told him, the trees always put on their best colors for his birthday, which fell in mid-October. Living here in New England, we knew that the wonderful autumn temperatures and colors were a treasure that blessed us, compensating abundantly for the summer’s sweltering heat and the winter’s prohibitive blizzards. Some mornings on the ride we said little more than “Look at the trees in the wetlands … they are always the earliest to turn.” And inevitably, a few days later, we would comment on how many leaves had fallen from the maples and oaks that lined our route.
As he grew his school was in our own town, until middle and high school, when I brought him back to the town where I teach. Again we shared those morning rides, but he was older now, and often had headphones and his own music flowing into his ears. Our conversations dwindled to nil, and I coached myself to respect his ‘alone’ time on the morning ride to his busy high school days. And in time, he began driving his own truck, and we lost our morning time together. For a few more years, though, I continued to enjoy those morning views of dawn breaking as I drove through one town and then another, and always thought of him and said a prayer that his day would go well.
The trees still dress in their best colors for his birthday. This year, maybe we can travel together, with Rick and perhaps Rob’s girlfriend, to Maine instead of to school, admiring the foliage, and visit with Trish and the kids to celebrate Rob’s birthday amid the falling leaves.
Yesterday, Rick and I drove into Boston and met with the dermatologist for yet another three month skin checkup. He noticed many more spots on my face that he wanted to treat, and we talked about the cream he had prescribed three months ago. I told him it was much worse than the cryosurgery ever was, and so he decided to go with the freezing again. He also looked at my forearm where the malignant melanoma had been eighteen months ago, and agreed with me that the reappearance of brown spots was reason for more biopsies, and he did two of them. I’ll hear the results in a few days, and if the cancer has returned I’ll go back to the surgeon and have it cut out again. In the meantime, the frozen spots on my face will again crust over and fall and eventually fade.
I haven’t been back to school to visit my friends in their classrooms this year. I may wait until November or December to do that. Maybe by then my face will again be clear of treatments and scars, and my smile will be genuine.
This has been a challenging season for many reasons. Continuing skin surgery, ongoing and back-to-back heat waves, high humidity and rising gas prices. I was happy to flip the page to September and will be happier still when the last day of summer passes.
Summer has always been challenging for me (sometimes I claim that’s why I became a teacher ,,, out of school for the worst season’s weather.) But though every summer brings heat and humidity, I seemed to have a lot of company complaining about it this year. We had a few absolutely beautiful days in late August, with fresh dry air and reasonable temps in the seventies. September opened with a return of the heat but is calming down now. Nights are dark with cool breezes that allow a better night’s sleep. I’m a winter baby, after all.
I talked with the counselor this week, and decided with her that the need for continued talk therapy is lessening, as the meds for depression have settled me into a comfortable acceptance of ‘what is.’ She asked me how I would define happy, as I had told her of our mind-mapping group of artists with whom we meet occasionally to strategize ways to promote our arts. The center of my mind map is the word “happy.” The purpose of the maps is to identify what our main goal is, and what we are doing toward reaching it. I told her I feel that I have reached my goal, and that now I think of it as ‘maintaining happiness.’ Rick is absolutely the center of my happiness. Being at home with him brings me peace.
I talked next with the psychiatrist who prescribes my antidepressant and asked him what would follow? He had told me when we first met that he would want to see a ‘complete remission of depression’ before discontinuing the meds, and that he would rarely recommend that at this point in the year. The darkness of winter is not a time that he would want to ‘try doing without’ a prescription for his patients. And before discontinuing it in the spring, he would want to see that remission last through all four seasons. I like his cautious approach.
He explained that my depression is a chronic, long-term condition that is not ‘episodic’ and so cannot be remediated by improving conditions around me. It is a biological depression, (which I understand is caused by an imbalance of chemicals in my central nervous system, and probably some structural damage due to the MS lesions and related brain atrophy.) The research I’ve done through the years since the diagnosis of MS continues to validate the challenges I’ve been facing for so many years.
I’m still not convinced that what I have is different than what my dad had, but I’m willing to consider that he may in fact have had MS rather than Parkinson’s. He never had a prescription for dopamine, which I believe is the only true test of determining whether one has Parkinson’s. If dopamine relieves the symptoms, it is Parkinson’s. If dopamine does not relieve symptoms, then it is not Parkinson’s.
I’m scheduled for a week in November to return to the NIH in Bethesda, MD for the continuing study seeking early biomarkers for Parkinson’s. I do trust those folks to know what they are looking for, and what they are and are not finding in my central nervous system. To date, they tell me I do not have Parkinson’s. They, and my neurologist here in Massachusetts, are sure that I have relapsing remitting multiple sclerosis. They witness the ongoing damage to the structures in my brain (lesions and black holes, continuing atrophy and a small, slow-growing tumor – a meningioma) and advise me to continue to monitor that with my neurologist.
I share a’ closed board’ for folks with MS on Facebook, where I read of others’ challenges and progression. There are some who continue to take the discredited interferons as they are young and trying very hard to stay in the workforce. There are others who have made ‘menu changes’ as I have and work toward avoiding inflammations and relapses with apparent success. And there are still others who have tried every DMD (disease-modifying drug) that doctors will prescribe and have still progressed rapidly toward secondary progressive multiple sclerosis. And there are those who have carried the label of primary progressive multiple sclerosis and experience losses of mobility, speech, eyesight, etc. It is a place where they can share their fears and successes privately, as the comments and posts are accessible only by members of the closed group. It is a mutually-supportive group, and one where I try to make encouraging comments and ask for informed advice. I have made some good contacts there, and feel comfortable within the ‘virtual group’ conversations.
I will see the dermatologist again next month. I will see the Parkinson’s team in November. I will see the MS neurologist in December. I’ll see the counselor and the psychiatrist again in about ten weeks. The skin surgeon is secondary, depending on what the dermatologist finds. I’ll see the thyroid specialist again in the spring. The number of doctor visits is beginning to lessen this year, much to my relief.
Rick and I will be working toward opening a Quilt Shop in our barn. It is something I’ve long thought of, since our local five and ten general store closed down several years ago; I miss their fabric department and notions. We’ll start slow, acquiring fabric as we can afford, month by month. We’re going to limit the posted hours to four day a week, with Sunday Monday and Tuesdays reserved for doctors and family visits. We’ve begun to spread the word among friends here in town and on Facebook. We’re hearing affirmations that others in town feel this will fill a need and may be a successful venture. My wish to sell enough books to replace what I’d lost by retiring two years earlier than planned hasn’t worked out as I’d thought; I’ll continue to write but will have lower expectations for earning money that way.
I may not be able to beat the depression without meds, but with meds, and with the ability to continue to remove negative things from my surroundings, there may come a day when I forget that I have more doctor appointments than social engagements. I do miss my friends at school and my identity as a respected school teacher, but I have Rick and we have all that we have here, together. If we can pay the bills, buy food, and travel to see our grandchildren now and then, it will be enough.
- Parkinson’s sufferers told ‘you’ll get better’ (scotsman.com)
- Linda Ronstadt Says Parkinson’s Took Her Ability to Sing – ABC News (blog) (abcnews.go.com)
- I didn’t know mind mapping software could do THAT! (mindmappingsoftwareblog.com)
- Multiple sclerosis appears to originate in different part of brain than long believed (eurekalert.org)
- Brain Inflammation Linked To More Severe Parkinson’s Symptoms (albanytribune.com)
Someone at the melanoma bulletin board suggested that people who have had melanoma removed ought not say “I have melanoma” but say “I had melanoma.” The same would go for basal, squamous, and actinic keratosis (the pre-cancers seen in older skin.). Their reasoning is that if you’ve done the right thing and had the site surgically corrected by removing the skin carrying the cancer cells, you have removed the cancer. It is now a part of your past, not your present.
I would like to believe that. I would like to think that skin cancer is something you correct with surgery, like a broken finger. If it were true, I would not be seeing a dermatologist every three months. I would not be sent repeatedly back to the surgeon for more skin surgery.
Are people who have had malignant melanoma treated with Moh surgeries cancer survivors? Well, yes, as long as we continue to survive, we are survivors of many things. The term “survivor” does imply an end point having been reached. But like multiple sclerosis, there is no end point with skin cancer. The damage done in our childhoods comes to fruition in our later years, and it is repetitive, and ought not be unexpected.
So yes, I guess I am a continual survivor, both of multiple sclerosis and of melanoma, squamous and basal skin cancers. I can live with that.
The sutures were removed on day 5 from my chin. The before, during, and current pictures show the seriousness of “just skin cancer.” This site required two Moh excisions (conservative cutting and re-biopsying until clear margins are reached.) The repeated biopsies are done right in the office, and take about 40 minutes before continuing with either more cutting or sutures for closing.
The “New Normal” is a buzz word on social media sites for people with chronic illness such as multiple sclerosis, cancer, Parkinson’s disease and more. The adjective ‘new’ is a critical component of this expression, as there is little stability or consistency in any of these changed statuses.
My first experience with a new normal status was when I allowed the diagnosis of relapsing remitting multiple sclerosis and accepted the prescription for nightly disease modifying drug (DMD) injections. An entirely new routine became part of mine, and of Rick’s. Laying out the equipment for before, during and after the injections, all at least immaculate if not sterile became the new norm. Time had to be planned at the end of each day to perform this injection. We did our best to keep things positively framed, but the afterburn was undeniable, and I would try to hide it from him and he would try to help me see it as a normal reaction, After four years and increasing depression and anxiety easily attributed to these unwanted treatments, I stopped the DMD and, whether physically or emotionally respondent to this change, began immediately feeling better. I felt I had regained my self … I had denied and rejected that temporary ‘new normal.’
Retiring brought about another ‘new normal,’ both personally and financially. I had carefully planned to pay off both our vehicle and our mortgage loans at retirement by doubling up on payments in my final years of teaching – final years that would typically bring a moderate increase each year. But my retirement followed yet another contentious bargaining that resulted in less than typical increases, to no increase at all in my final year. And that final year itself came at least two and possibly three years before I might have chosen, due to my failing memory and waning energy caused by the emotional toll of the injections. Rick and I adjusted to our new financial status, retired, and abandoned our plan for double loan payments given a reduced income. During the first year, there was no discretionary money in our budget, and savings were dwindling as we tried to adjust payment schedules to the new level of income. A year later, Rick’s pension kicked in earlier than we would originally have chosen, but necessarily. We were back on a level field feeling confident that, with luck, we would hit no other unexpected expenses. I wrote a memoir of our experiences and we began to breathe easier.
But by the following spring, the diagnosis of malignant melanoma along with basal and squamous cell skin cancers, and osteoporosis and scoliosis required more medical travel, appointments, procedures and prescriptions. Our first summer back on our feet financially saw repetitive surgeries and related expenses. Back and forth we drove, and week by week Rick help me to change dressings on wounds and perform follow-up care for sutured sites. The last round of that first summer of surgery ended in late fall. .Five confirmed cancer sites and eight surgeries later the winter saw continuing three month check ups and minor cryosurgery procedures performed not with the surgeon but with the dermatologist. Spots on my hands, and on my forehead were frozen with liquid nitrogen and routinely took a few weeks to crust, dry, flake and clear. A suspected site on my nose, and on my forehead, were biopsied but declared negative for more cancer. And then once again, in spring time, another site for surgery was emerging; this one demanded yet another new normal. But it wasn’t just the same old same old. My tolerance was wearing thin. Depression was feeding off low tolerance. Anxiety was again rising. I had to say no at some point. Denial would be my new normal.
This time, though, denial was short-lived. After visiting the surgeon to talk about surgical alternatives, I came home to think things through. To refuse surgery for the sake of refusing, with the thought that I needed to be in control of something … I needed to feel I still had choices and not just continued surgeries … was not valid thinking. I had to go back and accept the surgery. I was writing the second memoir – a sequel to the first, and my readers’ reviews of the first were full of encouragement and confidence in me that I was a strong person who would do the right thing. That I had no idea which was the right choice was difficult to admit, but I had to admit it, at least to myself.
The sequel was released to the public this past week. And my chin surgery was this morning. Once again, it took more than a single cut to clear the margins of squamous cell carcinoma. But the second cutting was sufficient, and the sutures were put in. Tonight I have a large pressure bandage on my chin, and was told I may have a bruise extending down the front of my neck in a day or two. Tomorrow morning Rick and I will remove the pressure dressing and clean and recover the sutures with a smaller bandage, and then I’ll be off with a friend to the quilt show in Lowell.
My new normal can be one of living with the ongoing chronic condition of cancer. Rick and I can still be involved in all that we want to do, despite the ongoing findings and surgeries and recoveries. One chronic condition is much like another. The names are different, the procedures and prescriptions are different, and the limitations vary unpredictably as time goes forward. Whatever the new normal will be, it will be temporary at best. What comes next is the greatest unknown. How to deal with it is waiting to be discovered, and done.
So, what do you think people who “look like they have cancer” actually look like? I’ve known a lot of people with cancer … early stages, treatment stages, later stages… In my mind’s eye, I think I can recognize a person with cancer.
Most of the people I know who have had cancer were either elderly men and women, or young women. By young, I mean before sixty years of age, because I’m in my sixties, and not particularly feeling young at present. I stopped feeling young when I was diagnosed with MS. But I think I stopped looking young when the skin cancer was developing, unsought, and undiscovered.
When I lost a lot of weight, the first thing my neurologist asked was if it was of my own volition. I said yes, I had decided and changed eating habits to accomplish it. It was the year I was first diagnosed, and the year i began self-injecting the medication that weakened my then powerful immune system.
For decades before the diagnosis, my immune system was strong and reliable. I taught children, and children have childhood diseases, which are most often contagious and so spread rapidly through classrooms, especially elementary classrooms. They came with colds, with influenza, occasionally with German measles and sometimes with the real rubella. They came with chickenpox, and poison ivy (don’t ever let anyone tell you that poison ivy is not an illness, or not contagious. Kids don’t wash the sites well, and the oil still on their inflamed skin is carried from their legs by their hands to their face, or to another child or adult’s hands.) And say what they will, doctors who believe that shingles are not contagious have never spent a full year in a second grade classroom with overexposure to developing chickenpox in students. I have, and on numerous occasions have had shingles as a result.
My immune system fought those illnesses and protected me from most of them. And while it could not protect me from poison ivy oil or chickenpox virus, it responded quickly to such invasions, by sending armies of histamines to wherever it broke out on me, resulting in an over-reaction of protective swellings … goose eggs, you might say … red, hot goose eggs.
My cheeks are definitely hollowing. They have been growing (or un-growing?) inward for a few years now. They now resemble my father in law’s face during the year he had cancer, surgery and treatment. My hair line resembles my dad’s in his later years. And my eyebrows … I’d have to say my mother’s when she was in her sixties and early seventies. Sorry, Mum.
I have thought it through and decided that I will go to the surgeon and let him cut the squamous cell from my chin. The swelling of my forehead is increasing due to the treatment the dermatologist prescribed to save me from further cryosurgery there. This is much worse than the three little spots of crust and blistering would have been. Once again I live and learn. The rest of my face has no swelling, but my eyes are spreading apart due to the goose egg’s absorption of the bridge of my nose. I don’t know why one eyebrow is up and one is down, unless there is more internal swelling there.
Overall, I would say this is the face of cancer in my mind’s eye. This is why I didn’t want surgery/scars on my face when I was still teaching, and why I would have to stay home when shingles returned, or poison ivy resurfaced. What to do, what to do? If I put anything on it, I may react to that. I’m thinking I might ask the pharmacist about over the counter benedryl. It might do some good. I don’t think it can do harm. My immune system won’t allow it.