Tuesday, December 3, 2013
Saturday, June 1, 2013
Front yard from our bedroom window. You can almost see things grow this time of year.
The least I can do is give you an update on the cancer thing.
March, April and May will remain in memory as a time that went from darkness to light.
What appeared on a CT scan in March to be a torso dotted with cancer turned out to be cracked and broken ribs -- both front and back -- all on the left side where they zapped me with radiation in 2007 and again in 2011.
During the ensuing week of clinic visits and various added scans, someone (finally) suggested I see the Wound Care Clinic about the open sore (by then 18 months old) in my scar line. This, too, remained as part of the aftermath of second-degree burns from 2011's radiation.
Seven weeks of special potions and dressing improved the open sore -- and by the time I was allowed audience with a plastic surgeon, I knew I wasn't about to let anyone cut me. Good enough is good enough. The plastics guy agreed I wasn't a candidate for a skin graft.
Before I learned about my fragile ribs, I'd been going to the Y five or six times a week. Not only was I trying to regain upper-body strength, I was trying to lose the 15 pounds still hanging around after my last treatment and hoping to improve my energy and level of happiness.
When Oncology diagnosed the fragile ribs, Dr. G. expected I'd be thrilled. Not cancer, after all. Instead, I pouted. I'd been ready to hear I was riddled with cancer, but not ready to hear I'd have to stop my upper-body workouts and attempts to lose the weight. Dr. G. lightheartedly told me not to hug anyone, use any of the muscles attached to my left rib cage, and "certainly, don't fall or have any kind of accident." This wasn't the first time I'd wanted to slap his smiling face.
Eventually I stopped pouting. At the Y, I concentrated only on aerobics on the elliptical trainer. I began counting calories (MyFitnessPal.com really helped). I solved the energy/depression problem as best I could with more drugs. I abandoned my hope of being able to go bra-less and instead began wearing tight binding over my scars 24/7 as a means to achieve comfort around my torso from too many surgeries and not enough skin.
The darkness started to fade about a month ago when I came to a place of finally accepting what is (again).
Coincidentally (?), perennial gardening started around the same time.
I've lost about half the weight I so abhorred.
For the past few days, I haven't had to take what Greg calls my "speed" in order to get through the day.
All's well that ends well. I wish I knew for certain that this is the end of cancer treatment for me. In the meantime, most days it doesn't occur to me that there might be a third time and I find moments of bliss returning.
There's always hope.
Thanks for checking in!
Wednesday, December 19, 2012
I don't really know what remission means and I'm not about to research it. All I know is that I show up for my surgeon's and oncologist's suggested follow-up visits. (I rather flatly refuse to follow up with Radiation- Oncology. I want them to know how pissed I am. And yes, I know how ridiculous that sounds.)
The surgeon regularly gives me a no-breast exam. The oncologist looks at my blood for whatever possible signs of recurrence might show up there. He also sends me to periodic PET scans to look for more advanced signs of cancer that might not show up in the blood. Overall, it's anyone's guess whether cancer cells are still skulking about. We'll know when a tumor appears, just like the other times.
Meanwhile, I've come to use each day for doing things I love and taking the best care of my body and mind that I can. (After all, they are my oldest and dearest companions, as we say in Mindfulness Practice.) Unfortunately taking care includes juggling a host of meds. And I dole out social energy with great care -- balancing relationships with appointments, exercise, and household duties (as few as I can get by with without threat of divorce). I hoard a large share of my time for taking it easy. Fatigue and residual nerve pain from last year's wicked treatments are ever-present reminders that 1) the medical people are sometimes clueless and 2) I need to revel in the good times as they present themselves. I join the ranks of those who have dealt with difficult stuff on a daily basis far longer than I. I have a new understanding of how strong you are.
I sometimes feel as though I lead a double life. There's the pouty-angry me and the revels-in-small-pleasures me. Fortunately, the reveler is still in the lead.
Merry Christmas to all -- and especially those who continue to keep us on their Christmas-card mailing list year after year even though we don't reciprocate. Your greetings and life updates are very much appreciated here.
(Here's the last portrait completed, grandson Simon. My friend Susan is up next.)
Monday, December 3, 2012
Friday, November 2, 2012
I've discovered I love drawing pencil portraits. 'Took a class at the Thompson Center from Carole Leroy and have been filling every extra hour practicing ever since. This is a talent discovered just two months ago that I'm sure will keep me busy the rest of my days. It is challenging, makes me focus, makes me forget my cares and those of the world. My first ever passion!
I'm posting in random order, not the order of my practicing. Maybe you can pick out the earliest and the most recent? Many of you have already seen these on Facebook, so apologies to you.
My Aunt Agnes
My son Jake.
Friday, August 24, 2012
Greg and I took a little 7,000-mile drive this summer and stayed away from home for 5 weeks, 3 hours, and 15 minutes.
It's good to get away for a while. It sharpens your perspective and makes you realize that some of the things you deemed important on your own home ground were a good deal less so when looked at from a distance.
When I figure out what it is I now know that I didn't know before, I'll let you know . . .
Wednesday, June 20, 2012
For the past few months I've had a truly bad case of fatigue. I would get up in the morning, have a cup of coffee, and want to go back to bed. I needed, absolutely, a nap once or twice a day. Then I learned that my TSH level (had a physical with my primary care doc) was off, indicating malfunction of my thyroid. This is not uncommon after radiation. I was rather relieved to hear there was an answer for my fatigue and hoped my latest prescription, Levothyroxine, would kick in sooner than anticipated.
While waiting for the thyroid pill to kick in, I had a prophylactic mastectomy and port removal. I expected this to be a breeze. After all, it was just a handful of tissue, right?
My surgeon talked me into having a sentinel lymph node biopsy along with the surgery. She removed two nodes (in the armpit), and tests for cancer were negative! Healing from surgery, though, becomes messier when your surgeon's been digging for lymph nodes in your armpit.
When the two weeks' anticipated recovery period was up and I still had enough discomfort to warrant pain pills, I began to wonder. I pondered the painful burning sensation across my chest and around my back for ANOTHER two weeks before it dawned on me: I think I have recurrence of shingles without the rash. I started taking my leftover Amitriptyline from the last bout with shingles, and lo and behold, I saw improvement the very next day.
Now, after a week on Amitriptyline for shingles, that seems to be well under control.
Another complication I developed after surgery is called "post-mastectomy cording." For some reason, since the natural flow of lymph is messed up due to nodes being removed, the body's fascia (connective tissue that surrounds muscles, blood vessels, and nerves) forms "cords." My physical therapist pointed these out to me . . . the reason for my lack of range-of-motion in my arm on the new surgery side. When she held and flexed my arm, the "cords" became visible under the skin and hurt like hell.
"They're like guitar strings," she told me. "Very tight guitar strings that need to be stretched and popped."
So while pills have been stepping up my energy and controlling the pain of shingles, my aggressive physical therapy sessions have been "popping" my guitar strings. When PT-Teresa popped one of the larger cords yesterday, not only could we hear it pop, but it felt like a gunshot -- with tremendous relief to follow.
Today was the first day I didn't nap in months. I could successfully reach the top shelf in my kitchen with my right arm, and I felt no symptoms of shingles. IT WAS AN AWESOME DAY.
(Here are pictures from my birthday in 2011 a few days after chemo began and in 2012 painting ceramics with grandson Simon. The year between these two photos will long be remembered as "my year from hell.")
Monday, June 4, 2012
This go-round, since I didn’t have upcoming cancer treatment to ponder, I especially noticed the craziness and discomfort of the two drain tubes that invaded my torso for 9 and 12 days following mastectomy. (Removal of tubes is one at a time to make sure the job is really done before completely unhooking all the apparatus.)
Here is a picture of one of my tubes after removal.
The suction bulb hangs on the outside, as does half the tube. Notice the black stitches about midway on the tube. That’s where the tube entered my torso – and 14.5 inches of tubing snaked its way just under the skin, curving its way to a point under my armpit. (One wonders if the armpit location is chosen for maximum discomfort.)
The tube, though it appears enclosed like a drinking straw, actually has a tiny drainage ditch (slit) all the way along the length – allowing it to slurp up any extra lymph fluid in its path during the healing process. The suction bulb collects the fluid so it doesn’t build up under the skin, causing trapped pockets of fluid, or “seromas.” The bulb must be emptied twice daily and output recorded. When output is, at last, at an acceptably low level, the tube can be removed.
I scared myself silly watching YouTube videos of women having their tubes removed, writhing in pain as the doctor pulled, hand over hand. But in fact, my removals were remarkably easy because my surgeon, as she explained, was kind enough to use “the kind that don’t cause pain when you take them out.” Thank you, most sincerely, Dr. Honnie Bermas. (Known in our household these past five years as “Honey Bee.” She is indeed a sweetheart.)
Anyone who has ever had drain tubes will identify with the relief following their removal. I threatened the medical staff that I’d be dancing naked in the park that night, but in reality simply celebrated with a visit to the Murray Hovel Farm, as Josh and Brenda have dubbed their 7-acre kingdom near Plover.
So the month of June, for me, will be one of spoiling myself rotten -- except for physical therapy. PT is undoubtedly going to continue to hurt until I buckle down and do it faithfully, with sufficient effort.
Next blog: Your quiz on DRAIN TUBES: their function and logistics, complete with pencil sketch.
Thursday, April 26, 2012
I went to Brewster Village to visit my friend Barbara's mother Dolly who is over 100 years old. I was a bit early and wanted her to have finished her breakfast before peaking my head around the door of her room, so I walked the halls.
An intelligent looking, well-groomed rather large man wearing winter coat and hat was singing, free of inhibition, to his wheelchair-bound lady friend who did not have the good fortune of appearing as normal as he did. She appeared to be slow of mind, what can I say? Nevertheless, I walked in the direction of the rather lovely bass voice and found an avid willingness to chat radiating from the gentleman dressed for the outdoors. On the arm of his chair he guarded one full cigarette and one half cigarette. I assumed his intention was to eventually step outside to indulge.
Reminding me of a character from a Dickens novel, he immediately engaged -- telling me he didn't plan to remain locked up in "this asylum" for the rest of his days. I got right to the point, asked him what line of work he'd been in (I was guessing academia), and he said gravely, with widening eyes "infiltrator." When I said I didn't understand what that might mean precisely, he seemed satisfied with my demeanor and I assumed he was as fully delighted with our chance meeting as I was.
"Go to the small table there to the left of the chair and look at the covers of the two publications found there," he told me. I walked several paces and looked at the cover of the one and only magazine on the table.
"What do you see there?" he said, "What does it tell you?"
Here's where I fail him, I thought. I will not be able to put his clues together to define his occupation of "infiltrator" and he will lose interest in our conversation.
I told him I saw "headlines about marines and airplanes."
"And on the second magaziine cover?" He waited.
"There is only one magazine here at the moment," I reported, hoping not to agitate him.
"Then someone has already snatched the other, but no mind, flip over that which is there and what do you find, Miss?"
I found and reported finding an advertisement for Boeing.
"Boeing," he said slowly and distinctly, as if correcting me. "Not bowling."
I assured him I'd both registered and spoken the word "Boeing" in the first place and he seemed assured of my sincerity.
"Does that explain things then?" he queried.
I stood frozen, my face blank. He continued in a whisper, "Do you know who is at O'Hare today?" After a brief pause he went on, "Here. I'll provide you a clue," and he began to hum the music always played when a United States President is being ceremoniously introduced. I recognized that much.
"Obama?" I asked. "Is Obama in Chicagao today?"
"Yes, well, he has to escape the utter nonsense of Washington at times, you know, in order to maintain sanity."
With that he looked off into the distance. We were turning a corner on our conversation, I noticed, but another corner approached just as the thought occurred to me.
"Look at you," he said, "Especially that bag you carry. Why you could pass through any line without being stopped, any line at all, Mary."
"Mary" hit me between the eyes and I hastily looked myself over for any sign that would have indicated my name to be Mary.
"How did you know my name?" I asked, smiling coyly so as not to disturb him.
He returned a smile and said, "See . . . I know plenty of things, and 'they' will, too, as soon as you contact the local papers -- what is the name of the local paper? -- and tell them about the fiancée and the . . . fiancée? No. What's that other word?"
"Fiancé," I answered.
"Yes," he nodded, obviously pleased I had followed his drift as well as I had and was proving to be his intellectual match. (I felt he'd purposely tested me that time.)
"You will take our picture now, three separate poses, and the best will be given to the Post Crescent newspaper with your article." At that, he nodded toward my bag as though knowing I carried a camera. I obliged by pulling out a small digital that I typically carry with me.
"First like this," he said as he turned the quiet woman's wheelchair to a better position for picture taking. "We're ready."
"But you have your head down, sir," I said. "I can't see your face."
"I'm WANTED," he said as though I'd already been given that information and had momentarily forgotten. "I cannot show my face."
I clicked the picture with his head lowered. The woman offered a delighted grin.
"Now another like this," he said as he pulled her wheelchair in front of him, flanking it with his legs so their faces were close.
Click. Now he had apparently forgotten he was WANTED, for he gave me full face and a lively Kodak smile.
"The third shot," he said joyfully, "can be your choice. You choose," he said as he swung the woman's wheelchair to the side and waited.
"Okay," I said, walking around them to put in a new background for round three. "I'd like this one to show the aviary behind you."
Just then a man wearing a name tag came out of nowhere and motioned me aside. "Do you know Will and Jeannie?" he asked.
"No, but they are certainly a friendly pair," I answered.
"Why did you want their pictures?"
"I didn't, really. The gentleman asked me to take them."
"You'll have to delete them," he said. "Be sure to delete them. You know we could have trouble with privacy issues, HIPAA and all."
"Oh. Yes. Sure," I said. "Not a problem."
With that he departed with a nod and a trusting smile that acknowledged his understanding that I would comply -- that I was just giving a couple of crazies a thrill by taking their photo.
I looked back and waved to my new friends who returned the gesture with great enthusiasm. As I walked away to find whether Dolly had finished her breakfast and was returned to her room, I thought "The guy with the name tag who wanted the photos GONE will not rest easy tonight. He will vow that should it happen again, he will make a point of witnessing the deletion of any such photos and stop being such a trusting fool."
An infiltrator, that's who I was, who would go straight to the local newspaper with her late-breaking story.
Friday, April 6, 2012
Dear Photo of My Youth: One would think I’d have figured things out by now. At least the part about what I want to do with the rest of my life.
When I was sick, my only desire was to “get healthy again for at least a year.” That wish seems well on its way to being granted.
Now, I find myself with a new desire: Make each day count.
But how? My very wise brother laughed when I told him I was going on a retreat with a group of strangers to help me figure this out.
“You don’t need strangers to tell you how to make your life count! Just look within,” he said – or at least my paraphrase is what I heard.
I’m one of the fortunate people who wakes up in the morning when she will. I then have the day before me and can choose how to spend it. Sometimes I have appointments on my calendar, but I really love the days where my e-mail notifies me “You have no scheduled activities today.”
For a few months, my motivation for getting out of bed was coffee dates. I had an overwhelming response to my blog invitation and I reconnected with a good many people, enjoyed many pleasant surprises in getting to know some of my acquaintances a little better, and generally savored feeling good again.
But it wasn’t long before savoring didn’t seem like enough. For me, simply “doing whatever I wanted” brought some nagging feelings. So what if I finished an 800-page novel in record time? Or watched Downton Abbey on Netflix three times? Who cares if I got through my list of chores? What’s the good in that?
The “good” in savoring life is bound up with: 1) figuring out who you are and boldly BEING who you are, and 2) influencing life around you in some positive way, which for me naturally must include other people.
In a few weeks I’ll let you know what the strangers at the retreat have to teach me (!), and in the meantime, I intend to continue creating mini adventures for myself – some so trivial I don’t want to bore you and some so promising it’s too soon to talk about.
I find that when I get up in the morning and tell myself “today I’ll do something different, be a little brave, and see what happens” – well, something delightful usually kicks in.
My message, then, is: Don’t wait until you’re a year away from Social Security to learn who you are and be who you are. Life will most certainly end and you don’t want to be left with regrets.