T.G.I.F. (?)I always have liked Fridays. When working, Friday marked the end of the "official" work week, bringing a period of accomplishment to a close and sometimes opening a door to a couple of days away from the cares of my regular job. These days, Friday passes with little or no holiday air — perhaps because I no longer have an "official" job — leukemia has become my career and survival my profession. My old jobs defined my life by setting its parameters. In a fashion, my illness, my cancer, my malady defines my life by setting new parameters. It's a 24/7/365 gig and my first vacation will be my last. At least, I get to work at home...
A call about numbers...The Blood and Marrow Transplant desk (at Mayo) called last night with the results of yesterday morning's blood tests (at Portage Health). Again, the numbers looked pretty good. There were no indicators of problems. Even my blood glucose was behaving itself, coming in at a respectable 97. The latest critical factor, my breathing, lung capacity, and oxygen level won't be tested again until August 16, when we return once more to Rochester for a day of testing and consultations.
Sunday story...Although it is Friday afternoon, I was thinking about last Sunday morning. I began my "morning constitutional" at 6:20 am (despite a valiant effort to leave 15 minutes earlier). A slow walk on a cool morning, resplendent with a bright blue breeze and bounteous birdsong, should have been an anodyne for all that ailed me. However, I quickly was denied that sunrise analgesic by cockcrow coughing and carbonaceous Canadian air.
Sensing something was amiss, I slowed my gait almost immediately — for some reason the air seemed thicker than normal and had a faint smokey taste. I was unaware of the warnings about smoke stealing down from Ontario's forest fires, so I immediately searched the skies for signs of a local fire or some scofflaw burning rubbish in the open. I labored to no avail — it was imported smog that caused my cough and awakened my wheezing. Still, retaining some intestinal fortitude, or just plain stubbornness, I plodded onward — doing my best imitation of an old, single-piston, steam engine.
By the time I reached the corner of 4th and Hecla in Beautiful Downtown Laurium, I was gasping like a surprised fish out of water. I leaned against the morning cool stone of the Vivian building and waited for my head to clear. Recovering quickly, I let go of the building (It would stand on its own now...) and started toward the intersection. An older, black, pickup truck rumbled to stop in front of me, and a young man leaned out the drivers window.
"Are you OK?" He asked, "Do you need a ride somewhere?"
Caught by surprise and immensely gratified by the concerned look on his face and on the face of his young daughter beside him, I hesitated and rasped out: "I'm fine (cough) just stopped to catch my breath (cough) — thanks for asking." My smile must have mocked a grimace behind my sunglasses and under my floppy sun-hat. He looked unsure for a second, then flashed a quick grin and drove away.
I finished the remainder of my 2.5 mile route with a lighter step and less effort — partially because the rest of the path was slightly down hill toward home and partially because the kindness of that stranger lifted my spirits. The next morning would be the last day I would gasp my way through the route without medication to improve my breathing.
Tough MondayMonday morning started out tough. The air seemed clear when I left the house — more than a half-hour late — and I had high hopes for a more pleasant walk, minus the labored breathing, wheezing, and coughing from Sunday morning. However, about half-way through my walk, the air seemed to thicken and I was once again gasping. Fortunately, about a half a mile from home, I was rescued by Marian. Driving home from dropping Amanda at work, she pulled over and suggested I might need a ride. I happily complied.
Only 2 miles for Monday...rats!
Things improved Monday afternoon when my new medications, ordered by my doctor in Rochester, MN, finally arrived via USPS from Medco mail order pharmacy. These medications, Advair and Singulair, were prescribed and ordered on June 28, yet circumstances, errors, and bureaucracies on steroids contrived to delay delivery nearly a full month.
I started taking the new medications Monday evening, and I think my breathing has eased.
Like pulling teeth...Writing updates, a past pleasure and I hope a future joy, has become a momentary challenge. It seems the issue of chemo brain or chemo fog continues to haunt me by locking the doors to my mental kingdom and forcing me to use the windows to get in. I found this list of symptoms on the Mayo Web site:
Signs and symptoms of chemo brain may include:Also see: http://well.blogs.nytimes.com/2009/08/11/coping-with-chemo-brain/
Signs and symptoms of cognitive or memory problems vary from person to person and are typically temporary, often subsiding within two years of completion of cancer treatment.
- Being unusually disorganized
- Difficulty concentrating
- Difficulty finding the right word
- Difficulty learning new skills
- Difficulty multitasking
- Feeling of mental fogginess
- Short attention span
- Short-term memory problems
- Taking longer than usual to complete routine tasks
- Trouble with verbal memory, such as remembering a conversation
- Trouble with visual memory, such as recalling an image or list of words
Many of the doctors I see don't openly scoff at this problem, but smile patronizingly and share knowing glances over the issue. I manage to remain fairly high functioning, but only by concerted and extreme effort, using tools that constantly slip and twist in my mental hands. Like an athlete who knows when his muscles are not responding appropriately, I sense the faltering in my mental gymnastics. Let me explain...
Left Brain, Right Brain, Chemo Brain...For a plethora of distant and even vaguely unimportant reasons, I lived much of my early life inside my own head. I created my own worlds and teased aspects of the "real" world to respond to my rules. What I could not accomplish with innate talent (e.g., singing or painting), I could force by fierce focus and consummate concentration. My memory seemed both phenomenal and inexhaustible. In the sixth grade, using 11th grade Scholastic testing materials, I read 700 words per minute with retention of 98-100%. I became fascinated with words...so many words! If we count distinct senses and archaic words (not in the OED), English approaches three-quarters of a million words. I wanted to know them all...
Enter LimitationsDespite my aspirations, plans, and perorations to family and friends, the modern world held no place for a teenaged Renaissance smart-ass, with self-delusions of grandeur. Smack-downs came early and often — the first of many lessons learned about reigning in the horsepower and keeping it under the hood; about gearing-down and applying torque to projects at once diverse, satisfying to the mind, and gratifying in detail. Life was good inside my head.
Then fences appeared, and my professional life became compartmentalized due to educational, ethical, vocational, political, and physical barriers and boxes. Yet within that framework, I could compose entire documents in my head, reorganize and edit the copy, and type out a nearly final draft — a real time saver. The Rolodex in my head held the data in a searchable format, easy and quick to retrieve — if not entirely complete. I didn't have a photographic memory, but an eidetic one. I could recall images in vivid detail, but might forget our meeting at 2 pm...or even someone's name -- a great memory for a poet.
Of course, as I approached my sixties, there was an image or two blurred or missing data from the Rolodex, but my cache of words remained my pride and joy.
Then came my worst nightmare.Over the last two years, I have lost the ability to edit entire documents in my head, making it difficult and time-consuming to write and edit. Documents like this update take days to prepare and I find mistakes days later that appall and embarrass me. Word loss and word search have become critical, affecting even conversation. My Rolodex is out of date, perhaps broken. My poetic Muse left town in disgust and seems to be on a long sabbatical...
Most distressing is the change in my personality. I have less patience than earlier and get angry more often — usually through inability to quickly respond appropriately to a new challenge or problem. Communicating feels like sorting dimes while wearing choppers (leather mittens). I have all the concentration and focus of a caffeine-addicted gnat. At least, that is how it feels to me now.
Is it the chemotherapy drugs, the ongoing medications coursing through my veins in a toxic soup, the accumulated stressors of my journey since May 2010, or a combination of all the above? I don't know. I pray it is at least a temporary imprisonment in a smaller, less wondrous mental world. I pray I will get my tools back, all sharpened and organized — and the confidence and wit to use them. I pray that my Muse will return and reopen my ears to the music of poetry, and make fertile once again the barren, dusty, fallow plain in my brain.
I thank all who have read this far. I know it sounds depressing, but it's not as bad as my complaints describe. I am alive. I can think (slowly). I have not lost the will to fight. I have my faith, and God sustains me. And I have all of you, who pray for us and think about us as our journey continues. 523 days so far, and I pray for many more — time enough to crawl out from under the shadow of chemo brain (or whatever it is) and share more of the thoughts and insights that flare suddenly, brilliantly in my mind — and then escape before I can catch them. It is hard to do, wearing mental choppers...
Good day and God bless,