To quote Dickens,
It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair…
2016 brought happiness and sadness, gains and losses. The year began in winter and ended in winter. There were more doctor visits for both Rick and I than previous years have seen. There were false reports and medical tests that added unnecessary stress. But summer brought happiness and optimism. We planned a great new adventure in our shops, and saw many more visitors than ever before. And as the fall began, we gained a lovely daughter-in-law and marveled at the most beautiful fall foliage any of us could remember. But in the final week the year signed off will a cruel slash of truth
It is a different world now. Yesterday we celebrated the life of my wonderful husband Rick, who passed away on Christmas morning. As I said on Facebook the next day, my heart died with him. Rather than a post here, I will publish his eulogy, written and delivered by our daughter Trish.
Laurent Richard Palardy may have been born in Peabody, but Georgetown was his hometown. If you knew him ‘back in the day’ you called him “Ricky”. If you knew him now, you called him “Rick”. Rob and I called him “Dad”. Our friends called him “Mr. Palardy”. Zoe and Tristan called him “Grampy”. But to my mother, he was simply “Hon”. She called him “Hon”, but she didn’t call him often. She didn’t have to call him, because they were usually holding hands.
My father had a smile that would light up a room, and a laugh that would lift the saddest heart. He had the largest hands of any man I have ever met, and he used those hands to work for the good of others. When I think of my father, I remember the quote by Saint Frances de Sales:
“Nothing is so strong as gentleness, Nothing so gentle as real strength”
My father was the original ‘gentle giant’. He always made a positive impact on the lives of others. In his work with the Fire Department, he used his physical strength to aid people, and his emotional gentleness to comfort victims. He volunteered with the Georgetown library, plowed snowy roads, drained soggy basements, and always showed up with a pickup truck and a smile when someone was moving.
Nothing was ever inconvenient to my father. He was never “too busy”, never too tired. He coached our soccer teams, and cheered all of us at every soccer game. He was an adviser to the Explorer Scouts with the Fire department, and coached Rob’s Lego League. He taught fire safety and woodworking in my mothers’ middle school classroom, and spent hours volunteering his time to help kids on community projects.
My father truly believed in the importance of nurturing and supporting kids. He opened his Wooden Toy and Gift business because he wanted kids to have toys that were safe and would last forever. His shop was always kid-friendly, and toys were always meant to be played with! I’m certain that Zoe and Tristan were not the only ones who believed that Grampy was secretly Santa’s Elf.
He would never have called himself a role-model, but he absolutely was. He taught us to never stand idly by when help was needed, and to never expect or demand a thank-you for doing what needed to be done. My father taught me to make my own decisions, and to believe in my own choices.
Above all, he believed in my mother. He respected her dreams, supported her ideas, and shared her values. My mother says, and we agree, that there was never, ever, a better man. They spent 50 years together, and were married for 46. And in that time, in all those years, my father never left the house without stopping to say “I love you”.
The time has come for him to leave, to go ahead without us.
And I know that as he goes, he hears us say “I love you”.
Please share your hugs and kind words generously with those you treasure. Here are all of us, at Rob and Heather’s wedding, enjoying the moment together. But now we mourn.
I know when I’m having an invisible relapse of invisible symptoms with this invisible condition called multiple sclerosis. No one else knows when that is happening, though those who spend time with me may notice a few odd things occuring.
I lose things … I forget things … I trip over things, or over nothing at all. My foot doesn’t come up high enough to take the next step and I fall. People have a conversation with me on the phone and I forget who I am talking with or what they just said.
It’s called, in the vernacular, Cog-Fog, or cognitive disonance. The online dictionary defines it like this:
the state of having inconsistent thoughts, beliefs, or attitudes, especially as relating to behavioral decisions and attitude change.
The damage done to the nerves by MS also affects your critical thinking and other cognitive skills. It’s not uncommon for people with multiple sclerosis to suffer from problems with memory and finding the right words to express themselves. Lack of concentration and attention is also common. Problem-solving skills and spatial relations can also be affected by the breakdown of myelin. Cognitive inadequacies can lead to frustration, depression, and anger.
And so I wonder … is the cog fog due to fatigue? Is the fatigue due to cog fog? It takes effort to remember something … to respond to questions … to learn new material … to walk without tripping over nothing … to go up steps by lifting each foot high enough … to look to the side without fully turning to the side … to take a corner without bumping into it … to walk in the center of a narrow walkway to avoid bumping from one wall to the other …
Do you remember when you first learned to drive a car, or a bicycle, or a bumper ride at the amusement park? Do you remember having to concentrate on which pedal performed which function? That in the bumper car taking your foot off the ‘go’ pedal was the same as putting your foot on the brake pedal of an automobile? Within a few seconds, as an adult, you adjusted your thinking and could use the go pedal to go or to stop. But with cog fog, you might have to re-learn that over and over, thus allowing yourself to be bumped by other bumper cars in the meantime…
So yes, cog fog contributes to fatigue, more so than the other way around. But most of us prefer to think it is the fatigue that causes the fog, and so better rest, or sleeping pills, could make us function better. But the truth disappoints.
It’s important to remember that cog fog is not a loss of intelligence, just as word retrieval issues is not the loss of vocabulary. The brain still knows what it knew … it just has issues retrieving the files so carefully stored. Everyone deals with “what was I just going to do?” moments … when you get up to get something in another room and forget what you went for, but when you go back without it you remember immediately what it was you were after? There’s an interesting explanation for that phenomenon, called the doorway syndrome. You can google it. But that is not cog fog. Cog fog does not immediately remit. At least, it doesn’t for me.
Sometimes my musings are a bit more esoteric than pedantic. The other night, I was wondering aloud to my husband Rick “Do you think there are fiction/mystery writers who work in the native language of Hawaii?” Now, this came about because we were listening to Christmas Music on the radio as we drove down the highway home from Maine. Mele Kalikiwaka is Hawaiian for Merry Christmas. But who originated the word Kalikiwaka for Christmas? Was it the missionaries who went there to convert the native population to Christianity? And how did they choose the letters within the limited Hawaiian alphabet? And why am I wondering this?
Rick is very patient with me, and agreed that it must have been a missionaries’ word that became part of the language of Hawaii. Was my thought process triggered by cog fog … like hearing music that isn’t playing is triggered by a hearing-impaired person’s wish to hear music? Or an amputee feeling pain in the missing limb?
The cog fog is now contributing to the fatigue, and I need a nap. Be well, all.
It’s been a busy few weeks, as we approach next week’s Humble Beginnings Adventure in the quilt shop. This is an event that has been in the planning and implementing stages for just over a year now. It began with a meeting at the fabric warehouse at the end of summer, 2015.
Kathryn, another small shop owner was there, browsing for fabric, as were Rick and I. After introducing ourselves, we spoke together of the mutual need to increase our customer base as we built our inventories … we spoke of wanting to publicize our shops’ existence, and how helpful the recent summer long Row by Row™ website was in advertising who and where we are. We knew of larger shops, well-established in their locales,that were well known and trusted to have the quilt-quality goods that the community of quilters looks for and appreciates, and supports. We knew that they ran successful shop hops each year, and had a loyal following of quilters. Our Quilters’ Quarter shop was then a year and a half old – and Kathryn’s was just coming up on her first year anniversary. She is running her shop as her business and career. I was running our shop as a community gathering spot for quilters and other friends to come together and enjoy creating beautiful quilts. With my teaching pension and Rick’s pension and social security earnings, we were not relying on the quilt shop for financial sustenance, as other quilt shops do. We did not have to meet a payroll, or afford insurance for ourselves and others. I was happy if the shop brought in enough working capital to pay its separate utilities and the monthly 2nd mortgage that had been incurred when we remodeled the second floor to relocate Rick’s woodworking space and make room for the quilt shop. The shop is doing that, but not yet earning enough to also pay for the expensive, quilt-quality fabric, thread and notions that we are acquiring.
And so we three together made a preliminary plan to gain partners in a shop hop venture that, like Row by Row™, would raise awareness of our shops and locations. We chose a time of year in which the environment would enhance the distance between our shops with its annual foliage display. Kathryn began recruiting a few more shops to join us, carefully selecting shops that were similar to our small size and unique in their own way. Geography was important, as we wanted shop hoppers to be able to enjoy the ride between our shops, with ours at the northeast border of our state, and hers at the south. In short order, we had five shops united in this goal. And a bit later a sixth was added. Kathryn was willing to handle the business end of the plan … she ordered brochures, tote bags, post cards, passes, etc., and organized a timeline of when to have our shop’s individual block patterns designed, block patterns printed, fabric to make up kits for our blocks, a sample quilt top completed at each shop; we began in earnest to be prepared. And each shop was to sell at least 50 Adventure passes to our customers. I gulped at that, not sure that we even had fifty customers… but we’ve managed to sell thirty-five so far. For their six dollar pass, customers will receive from each shop a free kit with fabric to make two blocks . It’s quite a bargain!
Of course, while we planned and kept things ‘under wraps’ until we were ready to reveal our plans, life went on and other plans were being made by other organizations. The printings had been ordered, paid for and received, making our chosen weekend dates unchangeable, before we learned that our local quilt guild chose the same autumn weekend as our Adventure weekend for their annual quilt show, which had always been in the spring. That meant that all quilters who were guild members would be busy on the Friday and Saturday of our Adventure’s three day event. And a local organization moved the date of their 5K walk/run for melanoma that starts each year virtually in front of our house; they usually scheduled it on Columbus Day weekend, but this year by chance chose the same weekend as ours, meaning that the road in front of our house (and shop) would be closed for a few hours on our Sunday date.
We knew that our son’s wedding would be two weeks after our Adventure, but didn’t know until late this spring that our nephew’s wedding would be the same weekend as our event, and as most of my family would be attending the wedding, they would not be around to visit our shop or support our efforts. No matter, I told my sister, the mother of the groom, who was very apologetic at the conflict in dates, that it would be okay, and that while we would miss their wedding we would be thinking of them. And I knew that our circle of artist-and quilter-friends would rally with us and help where they could, working around the quilt guild’s volunteer assignments and other calendar events. We will make this work. We have to make this work, as we have now invested several hundreds of dollars in event-specific fabrics, printing costs, kit-making supplies, refreshments, accomodations for customer comfort and so on. It is now feeling more like a business than just our own little retirement shop…
Having another cancer surgery on my back at the end of summer threw yet another chunk into our planned, relaxed approach to this event, as Rick was now my wound-care nurse, treating my back each night and day for the past eight weeks, trying to get the stubborn wound to heal. I’ve been prescribed both topical and oral antibiotics to aid the healing, and have been advised by the skin surgeon and his assistant not to stretch my back any more than minimally necessary, as that would only continue to open the wound. This, I kept to myself, trying to remember not to twist or bend while turning to pick things up in the house or the shop, but not wanting to sit out the chores related to planning an event for several hundred visitors in a three day period. Rick has arranged for the delivery of a “porta-potty” as there is no water in our barn to accommodate shoppers’ needs for a “facility.” He is planning to set up four canopy tents in the back yard to shelter refreshment tables and some sale articles. And we’ve used our ‘free become a member’ card at BJs to stock up on snacks as promised for the three days and possibly three hundred quilters (or more!) Our snacks will be simple treats and cool and hot drinks. We are not going to serve warm appetizers, though the other shops are planning to do more. I’m glad they will.
Rick and I are supplying the Grand Prize for the winner of the drawing at the end of the Humble Beginnings Adventure: we took one of our Singer Model 66 handcranks, dated 1915, added a hand crank and put it in a white oak base that Rick built for it, with two storage compartments containing needles, bobbins and a few other items. Kathryn asked us to assign a value to the prize, and we collectively came up with a retail price of about $200.00 Not too shabby a grand prize!
What I’ve learned from this experience is that running a quilt shop hop is no small matter, involves an output of a lot of money, either cash or credit (and as we don’t generate lots of cash it has been primarily on credit, with interest charges added.) Instead of feeling like we’ve done something exciting for our community of quilters and good for our shop, it feels like we’ve needed a lot of our friends’ help to get this up and running, at a time that the quilt guild itself needs their time and energy. My central business goal is still the word “HAPPY” and I do still feel optimistic that this hop may at least pay for its own expenses eventually, but presently it feels like it has added a large financial weight to our plates. It feels less like our normal ‘happily ever after’ and more like a business.
Our New England autumn environment will either make or break this event … the weathermen are predicting a ten day forecast of clear skies and comfortable temperatures next weekend … that will be good for the road race, the quilt guild, our nephew’s wedding, and our unpredictably-ill-timed Humble Beginnings Adventure. We’ll live and learn through this one … and perhaps be more reticent to offer to join in next time. We’re not spring chickens anymore … we’re more like autumn leaves, smiling brightly but fading easily! We are truly blessed with good friends who are like fairy godmothers with their rakes and their dusters and their work gloves and their wonderful creativity. We want to make this a happy event for all. Wish us good weather and luck? And thanks to those who will come and support us in this Adventure!
This week I heard back on the chest CT scan (the doctor’s nurse practitioner is still trying to identify why I have come and go rib pain when using my hands to sew, carry, etc.) Heavy breathing at night after climbing the stairs and lying down is another symptom that she would like to identify.
The results showed pulmonary nodules, but they are small enough to say that they are most likely not malignant, and so I will have a repeat CT scan in a year to compare the views, watching for any change in size.
The simple basal site on my back hasn’t yet healed, and the abscessed stitch that is weeping has enlarged from 3/16″ to 3/8″. I called the skin surgeon back to let him know that it continues to weep fluid and blood despite the past week of antibiotic cream twice a day; he decided to start me on an oral antibiotic today. I’m to continue that for two weeks, and if it has not by then healed, come in to see him to decide whether it needs another suturing. I’ve scheduled that appointment for one of the days that we are not in the shop.
I do trust my instincts. I regret not having held to them ten years ago when I allowed the first neurologist to talk me into the nightly injections which I now blame for the blooming of all these skin cancers; the disease modifying drug that I injected for four years was designed to attack my immune system, just as any chemotherapy will do. I believe in the six years since discontinuing the DMD my immune system has regained strength and the skin surgeon believes my immune systemis now attacking the sutures in my back – thus the continuing fluid and lesion growth.
Because I have had two melanoma sites (successfully removed with Mohs surgery two years ago) I do think that monitoring these other things that occur is logical; if melanoma metastasizes, it most often will do so with cancer of the lung, liver or brain, all of which are serious cancers. I will stay on top of these skin cancer sites, whether they are basal, squamous or malignant melanoma.
As for the multiple sclerosis … it is way, way back on the proverbial stovetop… that ‘whatever it is’ is still there, but just in the background of the skin cancer and the watch on other organs.
Last week, I heard back from the nurse practitioner that she had the report from the cardiologist (the one who had said that I had had a silent heart attack a month or so ago) … the two-day echo cardiogram testing he had suggested was completed, and it showed no evidence of ischemia, and so there is no evidence of my having had such an attack. I felt validated by that report, as I was sure if I had had an attack, silent or not, I would have known something was different.
I continue to avoid inflammatory foods (fried, meat, dairy) and believe my instincts will keep me as healthy as I can manage to be. I will avoid another episode of chemotherapy at all cost, physically, emotionally, and financially.
Be well, all. It makes life easier, if you can.
Update August 26, 2016
The sutures are removed, but a day later and I woke to find blood on the back of my t-shirt. Rick treated the small break-through bleeding with aquaphor and a small bandaid. If it continues to bleed, (being one of the signs of cancer, bleeding that doesn’t heal is a concern) we’ll try some of the formula that the dermatologist prescribed once before when my arm’s biopsy continued to bleed longer than it ought to have. I’ll let you know how that goes.
Update August 27, 2016
Uh oh … more bleeding last night. The incision without its sutures seeems to be spreading apart. It’s possible that the swelling on the sides will dimish with time, but I’ll call the surgeon and ask him to take a look at it early this week. And, I think I see a remaining suture at the very bottom of the incision…
I saw the skin surgeon last week; he did Mohs surgery on my back for the basal site. After the first incision, I waited with Rick in the office for the on-the-spot biopsy. An hour later, a smiling assistant came out to tell us that he did get all of the cancer cells on that first scraping, and I would have sutures put in right then.
This happened the last time I had Mohs surgery for basal carcinoma. My dermatologist is very good at spotting it early, and getting me off to the surgeon for quick action. When I had Mohs surgery for malignant melanoma, it took a few days between surgeries to have the biopsy read, and so back and forth trips were necessary. But they were worth the trouble, as he again was able to get all of the cancer cells before finally suturing it closed.
I’ll be back to see him in about a month to have the sutures removed. Here’s a picture of his fine work!
As his assistant was putting a pressure bandage on to cover the incision and sutures for the first twenty-four hours, he explained that there might be some permanent numbness in the area as nerve endings may have been involved in the surgery. He told us to leave it alone until the next day, then wash it with distilled or boiled water, coat it lightly with aquaphor (a vaseline-type product) and cover it again with a regular bandage. We’re to do that twice a day for three weeks, and then come in for suture removal.
The dermatologist did call, this morning, to say that the biopsy he took earlier this week is basal carcinoma, and so the surgeon will be called to schedule a surgery. At least this one isn’t malignant melanoma, as others have been. Sorry for the mis-information. Onward, ever forward.
And prayers, please, for the people of France.
The weather last week was cool and drizzly, and that was a relief … but this week is pay-back time. The temps are in the nineties, and the humidity is in the high fifties/low sixties. It’s uncomfortable enough that there are very few quilters out and about Row by Rowing for the free quilt patterns. I have AC in the barn, but I don’t mind the slow down. One or two customers per day is just about right for my energy levels in this weather.
I saw the dermatologist again this week; he did find a suspicious spot on my back, did a shave biopsy, but hasn’t called to report any findings (which means no findings, which is good news.) I won’t see him again now for six months – the first time in three years that I’ll have six months free of skin checks!
As for the silent heart attack – it’s been nearly a month since that failed echo ultrasound test, but it was not until today that I succeeded in getting the cardio office to schedule the two-day retake, and that isn’t scheduled for another month … I will interpret that as they’re not being at all alarmed by the evidence of attack damage to my heart that showed up …
I saw the internist who monitors my thyroid and osteoporosis. I filled him in on the recent appoointments, and he and I agreed that trying to schedule all that I’m trying to schedule can rationally push the Reclast treatment off until the fall. I feel the same way about the requested colonoscopy and gall bladder consult.
I will see the neurologist in August … the same week as the second heart echo test. I’ll talk with her about the suggestion that the rib pain I’ve experienced for the past three years may now have been explained by the recent full body b
one scan, which showed a healed fracture in my right lower rib, or may be attributable to the silent heart attack’s evident damage as found in the ultrasound, or perhaps in the gall bladder’s stones. At any rate, it no longer seems to be something to just shrug off as the untreatable MS-Hug symptom.
And while the beat goes on, and on and on, Rick and I are enjoying the care of our grand-bunnies while Rob continues to gradually move into his new home a few miles away. We bought a third cage so they can all have their own space, and we moved them downstairs to the kitchen so we can interact with them more easily on a daily basis, and let them out to roam and explore in the
kitchen. We’ve bought ‘potties’ for each of them, and are encou
raging their use … it’s rather hit or miss for two of them, but the youngest seems to have understood the plan. We have a grass ball that Blizzard and Pumpkin enjoy chasing when I spin it or toss it across the floor. When the weather is good, we take them outside and share the sunshine and shade with them. Life is good.
I was there for an echo-cardio stress test. My new physician has scheduled me for several long-overdue health maintenance tests, and this was one, most likely due to a recent rise in my blood pressure (which I have attributed to my gain of about twenty pounds over the past two years, ) The nurse explained the procedure and said she would do so again as it progressed, step by step, and I thanked her. It started with an EKG (and I don’t know why there is a K in there, instead of a C…) which went well. Next was an ultrasound of the heart.The usual ‘goop’ was applied, and the device began to circle across the left side of my chest. As the technician moved the device below my heart, she hit a sensitive spot, and I told her. She pulled away and then went back and hit it again. She decided then to have the doctor who would be reading the ultrasound to come in and look at it, now rather than later.
The doctor looked at the ultrasound monitor and agreed with the nurse that it was not going to be clear enough for him to make a comparison with the one that would follow the treadmill test, and that another test would be better and directed the tech. to call my doctor and suggest the alternative. He turned to me, then, and asked “When did you have a heart attack?” I thought I misunderstood his question, as he spoke softly and with an accent. I didn’t answer at first, and he repeated “When did you have the heart attack?” I replied to him, then, that I had never had a heart attack. “Yes, you did. There is evidence in the images.”
As we drove home, I tried and tried to remember an incidence that might have been a heart attack. Perhaps when I tripped up the back steps and landed hard on my chest, and stayed on the floor for a few minutes before rising, giving the pain time to pass? Could a fall like that cause a heart attack … and be over in those few minutes? Or could the repetitive nightly episodes of shortness of breath (when I laid down to sleep each night for a few weeks recently) have been a series of small heart attacks – my chest did tighten, side to side, during those episodes, but again, they each only lasted for a few minutes, and then my breathing evened out and remained steady as I fell asleep. That hasn’t happened in the past week – why would it have stopped? I had told our new doctor’s nurse practitioner of those episodes, but as they were brief I thought little of it.
I’ve certainly felt worse pain than either the fall or the breathing/squeezing episodes… I wondered, then, if I might have had a heart attack during a dream, and not realized that it was a real heart attack? My dreams are so vivid, I often am not sure whether they are dreams or reality, until I wake up from them. And even then, when I remember one, I’m not always sure that I am just remembering a dream, or remembering something that really happened and was forgotten for a while…
I’m scheduled to wear a heart monitor next week for a 24 hour period, and I’ll have the alternate stress/echo two-day test later in the week. I won’t know until I meet with the doctor after those test results, and others, are received. But I now know that my heart bears evidence of a heart attack that I don’t remember having. I don’t know yet whether the evidence is of past damage, or of ongoing damage. I wonder now if this is somehow related to the ongoing pain in my lower right ribs .. for which I am scheduled to have a full body bone scan the day before the heart monitor. But that pain is on my right side, not my heart side. It is sometimes a sharp pain, and sometimes an ache, and always hard to describe when asked to do so.
I’ll write more when I know more.
Until then, be well, all.
Forgive me if I’m repeating myself … I can’t remember what I’ve written when I open a blank page to begin again, and if I close this page to go back and read what I’ve already written, I’ll get lost in old posts and forget to come back here to write what I wanted to tell.
We’ve changed primary care doctors because our doctor of the past twenty years just retired unbeknownst to us, and turned over our folders to a young doctor. That doctor was very nice but, starting fresh, ordered some tests, xrays, etc. His office staff was overwhelmed with the influx of new patients and mis-coded much of the insurance billing, resulting in our being billed for hundreds of dollars of tests, which we appealed.
After two months of repeat billing, we chose another primary care doctor on the recommendation of a good friend. This one, also, is taking a fresh start approach; more blood work, different x-rays, etc. but apparently more accurate insurance coding, as we haven’t received a bill from any of the tests yet. But she is being very thorough … I’ve had my head examined (brain Cat Scan), have scheduled with my neurologist (August), and am going tomorrow for a treadmill stress test. Our new doctor would like to solve the mystery of the lower rib pain that re-occurs almost daily. I had a treadmill test about thirty years ago, in my mid-thirties, and was pretty sure they were trying to kill me at the time.
I hadn’t yet been diagnosed with MS then, nor melanoma, and tried my best to keep going as they encouraged me to do. I know they have to do that, to measure the strength of my heart. I did really push at the time, feeling confident that my then strength would impress them. I nearly fell to the floor when I finally stopped, and they hovered a bit leading me to the chair to take the resting heart rate.
This year, I’m not as strong as I was thirty years ago. I’m not as confident, and I surely don’t feel a need to show anyone how strong I am not. I just read a post written by a virtual friend (one known to me only through the internet, but sharing the experience of MS and social networking.) He was questioning his ability to complete a half-marathon with MS, as he just turned forty. He did it, and I’m very happy for him that he did. I commented on his blog that I will keep him in my thoughts tomorrow as I step onto the treadmill. I don’t know whether I will rebel against their insistence that I keep going and stop before I am fully fatigued, or rebel against my waning energy and try to keep going to help them measure my active and resting heart rates. I know what I did in my thirties, akin to what my friend just did as he turned forty. But I wil remind myself, and those testing me, that I am past the midpoint of my sixties…