Saturday, December 31, 2011

Mick McKellar Update -- Day +314


I was trying to find a word to describe 2011. This was my top ten list: grievous, mean,  difficult, demanding, burdensome, nasty, hard, onerous, trying, and wicked. These were tough words for a tough year. Yet, as I thought about all the changes and challenges, all the pain and prayers, all the angst and anxiety, all the fright and fight; it came to me that the appropriate word is illuminating.

Shine a Light

2011 was a year of hard lessons and hard-won victories. I learned more about my self, my strengths and my limitations, than I ever thought to comprehend. I stared death in the face, and he blinked. I came to understand the pure power of prayer and the warmth of friendship and love. I learned humility from the selfless generosity of our friends and the anonymous kindness of strangers. Perhaps most importantly, I learned to live in the precious present, one day at a time, and to appreciate the wondrous gift of life.

One of the toughest lessons to absorb teaches that it can be infinitely more difficult to be the caregiver than to be the patient. I was raised to be stolidly and obstinately independent. Experiencing others' ministrations, even though totally unable to manage it on my own, was difficult. Watching the patience and care given both by Marian and by professional nurses taught me the meaning of "awesome."

Finally, I learned that each bad break or set-back carries the seeds of victory within. I learned that life is all about change and that I should not lament when change becomes challenge, but seek the seeds of victory and tend that garden until it flourishes.

Like Bob Cratchit in the vision of the death of Tiny Tim...despite the illness, the pain, the uncertainty, and the cost, I am a happy man...I am alive.

More Challenges

My son-in-law Chris Davis, was hospitalized on the day after Christmas. Surgery yesterday revealed that he has a glioma. We do not yet know the prognosis, but we are once again raising voices to Heaven in prayer for him and his family. I sent Chris a quote from Mother Teresa which has helped me keep perspective all year: "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."

Please pray for Chris and for his family.

My Situation

Presently, I am doing well. Blood tests are monthly only and I hope soon to be off the Cyclosporin (anti-rejection medication). My hemoglobin, although not yet normal, is much higher than before. My surgical scars have healed, and I hope to remain out of hospital for a while.

If all goes well, we will travel back to Rochester at the end of February or beginning of March to begin my inoculations...just like those given to newborns...as my immune system hopefully begins to establish itself.

God bless all of you who prayed for us and sent us your good thoughts.
Happy New Year!

Mick

Sunday, December 18, 2011

Mick McKellar Update -- Day +301


Our 2003 Focus has developed CVWD (Car Versus Wallet Disease). The transmission seal is leaking. The thumping we heard last week is malfunctioning rear shock absorbers. Tonight, as we drove to the restaurant to celebrate our 40th anniversary...the brake pedal plunged to the floorboard...no brakes. The ride home was tense. No joy in Florida Location tonight...however a strained voice may be heard faintly singing in the darkness near my home:

Ho, ho, ho...nowhere to go;
Ho, ho, ho...got no transpo;
Out in the driveway, click, click, click -- 
A broken Focus makes me sick...

We were in the parking lot when the brakes nearly failed. So, we had a nice dinner (courtesy of our younger daughter, Amanda who shared both victuals and terror with us), and with the intestinal fortitude provided by large portions of comfort food, we crept home slowly -- by a route with almost no stops and with one hand on the emergency brake.

Tomorrow morning, I will arrange towing to the repair shop. This must be similar to what Marian felt as my caregiver for all those months...always something new failing and always a new expense. Like pushing a rope up a hill: I move forward, but it seems nothing gets accomplished but the generation of frustration. At least the car doesn't complain and doesn't snore.

On a positive note: We are safely home. The Focus is in our driveway, ready to be towed. We had a nice (if nervous) meal -- better than last year's anniversary, spent in hospital and sick from chemotherapy.

Thanks for your prayers and good thoughts. Please pray the repairs will be minor (and inexpensive).

Good night and God bless,

Mick

Saturday, December 17, 2011

Mick McKellar Update -- Day +300!


Wow! It's December 17th, and it's now 300 days since I received the gift of life from my brother Kevin. The first 100 days crept by, awash in discomfort and uncertainty, yet so challenging I had time for little else but fighting to survive. The second 100 days thundered along, a swift summer storm clearing a path through my old life and paving the way with gifts of each new day. The third 100 days, a sudden semester blazed past in heat and light, bringing new lessons on limitations and yet re-opening doors I thought closed forever.

Reflection is difficult. 

A retrospective of the last year paints a complex portrait and a frightening map, documenting each twist and turn of our journey, so many of which might have gone awry on paths not taken, whether by choice or chance. I am intrigued and discomfited by so many places along that path where guided by the Lord's hand or led by luck, a misstep was avoided. I am more certain than ever that the prayers and good thoughts of our friends powered us past pitfalls and proffered the strength and the optimism to fight on.

New Lessons -- New Teachers

I have been learning (slowly) that humility is not thinking less of yourself, but thinking of yourself less. I also learned that hubris is no defense against human frailty. We all carry within us the seeds of our own downfall. When leukemia first came knocking on my front door, I hid in the den, hoping it was just the wind or a bothersome soul soon to go away and darken my doorstep no more. Yet, insistent as a cold Keweenaw breeze, it found its path into my leaky old house, swept away the dust of my assumptions, and scattered the pages of the script I had so carefully written for my life. It was time to learn how to improvise and ad lib. The movie of my life was now a daily serial, and the script was no longer mine to dictate.

In the last 300 days, my focus has been primarily on me: A private morality play with a paranoid twist. However, while I was busy declaiming my lines and discerning my blocking, the audience crept up on the stage with me. The dark comedy, which started as a monologue, grew into a duet, and now has an ensemble cast. I am becoming merely one player on a very crowded stage, and I am thankful there is still room for me to tread the boards a little longer.

I am learning that pancreatitis hurts worse than chemotherapy. I am learning that I am not the only one in pain. I am learning to be a character actor in my own production.

A Milestone Tomorrow

December 18, 1971, Mick and Marian became man and wife. Tomorrow is our 40th wedding anniversary -- traditionally the Ruby Anniversary. For obvious reasons, rubies are a little beyond our budget, but I am certain I can find something red to wear -- especially at Christmas. Our last two anniversaries were disappointing. In 2009, I was already sick, unemployed, and hanging around the house. In 2010, I was in the hospital, undergoing my third round of chemotherapy...we celebrated with muffins (provided by the hospital staff). I could not eat mine. We held hands in the hospital room and prayed for better days and better health for our 40th.

Well, I am doing very well at the moment. My numbers are good and my ongoing blood tests have been reduced to once per month. If all goes well, they will begin my inoculations by March 2012 (just like a newborn) and I hope to be off my anti-rejection medication in January.

A Merry Christmas

I put up more than half of our cache of decorations, accumulated over 40 years of marriage. I want this Christmas to be special because I have learned not to put off such things, depending on next year. Because I have been looking back at past Christmases, I want to share a poem I wrote in 2007. Little did I know it would offer solace and reassurance for me in Christmas 2011.

Christmas Silence

We sing of peace on Earth and goodwill to all people at Christmastime. We think of a silent night, when all is peaceful and bright with love and caring and joy. Yet, if we could but see and hear everything on that wondrous night, would it be a boon or a bane? Perhaps the peace and joy of Christmas is not around us, but within us. Maybe the happiness of that blessed night is our gift to ourselves, a wonder and a peace we bring with us, and if we are lucky, we can share it with another.

Mick

Christmas Silence

Long, long ago, in a land far away,
An angel rested upon a high hill.
He'd chosen a comfortable place to stay
On Christmas Eve, and he grew very still.
He listened with all his angel power,
Straining to hear happiness in the air.
A statue on an impromptu tower,
The angel stood still for hours up there.
He heard a few jet planes, as they flew by,
And the clouds, as they drifted through the night.
He heard the stars dancing above the sky,
And the moon banish shadows with its light.
He heard babies crying in homes below,
And mothers crooning to silence their tears.
He heard those leaving, with no place to go
But back to a lonely night, full of fears.
He heard the soft silence of children's dreams,
An old man who snored like a backed up drain,
And couldn't help hearing those anguished screams -
A victim, abused and battered again.
There were voices raised in anger and grief,
And howls of laughter from a local bar.
He heard the footsteps of a teenage thief,
In his first attempt at stealing a car.
Disgusted, distressed, and ready to cry,
The angel stood up and prepared to leave.
He spread his wings and was ready to fly,
When a tiny hand tugged on his right sleeve.
Startled, he looked down into a small face,
With the largest, darkest, most tearful eyes
He had ever seen in all time and space -
Blue-gray, like the stormiest winter skies.
Clad in pajamas, bare feet in the snow,
The tiny waif whispered in pleading voice,
"Please, Mr. Angel, oh, please do not go!"
And pausing a moment, he made his choice.
The angel knelt down in front of the child,
And opened his arms in welcome embrace.
He stroked the child's hair, with hands soft and mild,
And he prayed for peace and for Christmas Grace.
He stayed long hours through the now silent night,
Till parents, searching in early dawn's glow,
Were met with a wondrous and blessed sight -
Their small child, asleep on a bed of snow.
As the child leapt awake at their loud cry,
A joyous sweet sound set their ears ringing -
Far overhead, in the early morn sky,
A joyous Christmas Angel was singing.

Mick McKellar
December 2007

Thursday, December 8, 2011

Mick McKellar Update -- Day +291


Welcome to my adventure of 36 (and a half) hours!

10:30 PM Tuesday (December 6): Marian rushes me to Portage Health emergency room after two and a half hours of "pouring forth" from nearly every orifice. Sweats, shakes, spiking fever all coordinated in a symphony of misery. Amanda had to call Marian home from league bowling to bring me to the hospital. On the scale of 0-10, the pain was a clear 9+.

It took a couple of hours for the staff at Portage Health to get the pain, nausea, and especially the shakes under control. After many tests, it has been decided that I had an attack of pancreatitis. The cause of the attack remains unknown, however suspicion is centered on a can of clam chowder (not expired) I had for supper -- about an hour before my attack began.

At 11:00 AM Today (December 8): Marian picked me up at Portage Health. All tests show normal values, and though quite sore (from the "pouring forth"), I am back to normal -- although a bit weary and frazzled by the experience. I received high dose antibiotics while hospitalized, but none are prescribed beyond my normal cadre of medications.

Incommunicado

The sudden trip, to what is rapidly becoming my second home, was so abrupt and unforeseen there was no time to pack up my ancient -- yet trustworthy -- laptop. Hence, I was out of touch and "off the air" for the 36-plus hours of my little adventure. Nearly as frightening as my medical adventure was the realization of how dependent I have become on my Internet connection. I felt isolated and "cut off" from the world.

Relying on broadcast television for information meant some of that information was hours old before I received it.

Somewhere in the night, it dawned on me how ridiculous that sounds. Growing up, I had radio, newspapers, magazines, books, and the occasional TV show. Hearing or reading news that was only hours or a day old was amazing...it felt like being there. Later, television brought images and news either minutes old or even live -- but that was only on certain stories. Only newspapers brought details and a wider variety of coverage.

Then came the Internet. Originally an ocean of information...one inch deep...it became my source of choice for instant coverage of news and events anywhere in the world. It also provided an open door for me to publish my own thoughts and my own news to folks who wanted to know.

And there I was, on hiatus from my information immersion experience, frustrated beyond reason at a golden chance to rest and recover from a painful and terrifying attack. I laughed about it this morning, but I booted my computer as soon as I walked in the door at home. Guess I am hooked.

In any case, I am home and we are all once again well. I will likely be spending the next few days around the house as much as possible. Maybe I will even turn off the computer for a few hours and watch daytime TV...nah!

God bless and thank you for your prayers and good thoughts.

Mick

Sunday, December 4, 2011

Mick McKellar Update -- Day +286


"As we must account for every idle word, so must we account for every idle silence."
-- Benjamin Franklin

Many of my friends have inquired: Why have I stopped writing? I confess that, at first, I had no answer to that question...it simply happened. While planning what to write in this update, I found a quote from Philip Pullman that opened a door to understanding for me. He said: "For that reason you can't write with music playing, and anyone who says he can is either writing badly, or not listening to the music, or lying. You need to hear what you're writing, and for that you need silence."

I stopped writing to quiet my own voice and all the associated noise. I sought silence to once again hear what I was writing, to listen to my own words, and to perceive the integrity of my message. For the tales of my journey have grown taller with the telling. I have taken time to reflect, and apply the guiding principle of Arthur Conan Doyle's famous sleuth: "When you have eliminated the impossible, whatever remains, however improbable, must be the truth"

Lookin' Good

Folks tell me that I look good. Watch for the quick smile before I brush it off...because I love hearing it. I am doing improbably well, and have beaten so many odds that I feel like I am living on borrowed time. Each new day is a gift, and I have received more than 286 wonderful gifts since February 21, 2011. The best way I can describe my current condition is a full remission, supported by a core group of powerful medications and a healthy dose of personal paranoia.

Checkin' Up on Me

Marian and I returned last night (Friday, December 2, 2011) from Rochester, MN; after two days of testing, poking, prodding, and consultations. The pulmonary function studies showed no further decrease in my lung capacity. The CT scan showed no perceptible lung problems, but did show some pericardial effusion (fluid build up around my heart). An echo cardiogram demonstrated that, although there is some pericardial effusion, it is a small amount and only bears watching.

My other numbers and counts continue to alternately impress and disturb my physicians.

I have (by all measures) recovered very well from my laparoscopic cholecystectomy (removal of my gall bladder).

My liver seems to have recovered completely and the medication for treating my liver has been discontinued.

My anti-rejection drug (cyclosporin) has been reduced to only 25mg per day and may soon be stopped completely. However, my anti-cancer drug (imatinib) will continue and may increase -- to prevent a recurrence of the leukemia for as long a possible.

If all remains well, I will go back in late February or early March 2012 to begin the inoculations each newborn must face...

What does it mean?

For me, each new day is another chance to "get it right." Like all traditional human bunglers, I never seem up to the task, yet I appreciate each new opportunity and try to make the most of it. It means I can shovel some snow. It means I can give my grand-kids a hug. It means that, despite the aches, pains, shortness of breath, frustrations, and fatigue, I get to keep breathing...to keep living.

Earth-shattering, profane, or profound insights remain in short supply, but I get to spend time examining my conscience and scrutinizing my soul in the soft, golden light of the precious present. If the conduct of my life and the content of my love has been lacking when measured against my capacity or intent -- I seek forgiveness and another chance to do better. I find I have little time for either recriminations or regrets.

It no longer frightens me to need a nap. I go shopping and don't want to buy anything. I understand flannel.

Your friendship, prayers, and good thoughts mean more to me each day.

Now, I must sleep. God bless and good night,

Mick

Thursday, November 10, 2011

Mick McKellar Update -- Day +263


As you can see from the photo, I am doing physical therapy, Keweenaw style. Yesterday, the yard was shades of brown and dark green, with scattered accents of faded reds, golds, and grays. About 3:00 PM, yesterday, the air suddenly turned white. By this morning, more than a foot of that white had fallen, with about 10 inches of the heavy, wet snow to be moved from our driveway.

Because I had surgery (laparoscopic cholecystectomy) on Halloween day, I can't really wrestle with our ancient snowblower (an 11 HP John Deere), so I had to settle for scooping the heavy snow. Shoveling is simply not recommended, so naturally I do it, but slowly and carefully. I don't take pain killers, so I know immediately if I do anything I should not.

Healing Well

The incisions have healed well, and the angry red entry wounds are not so angry and only a little red. Even the opening left by removal of my Jackson-Pratt drain has healed and looks benign. I still get twinges and uncomfortable sensations when I move certain ways or pick up more than I should. Still, I would call the surgery successful.

Good Numbers

Blood tests from Wednesday morning revealed some really good numbers. I am still anemic, but not dangerously so. My bilirubin is in the normal range, indicating that my liver is behaving normally, even after the gall bladder surgery.

Car Sick

Just in time to prepare for our next jaunt to Rochester, MN (on 11/29/2011) our dependable little '93 Focus may be in need of medical care. I'll be taking it to the car doctor tomorrow for a diagnosis of probable wheel-bearing-itis, this coming only a week or so after we sold our old minivan. Both vehicles are/were suffering from last winter's nearly total inactivity.

My visit to Rochester will be part check-up and part testing to determine why my pulmonary function has decreased since July. We are praying it is not fibrosis.

Thanks for your ongoing prayers and good thoughts.

Gotta get some rest. God bless and good night.

Mick

Tuesday, November 1, 2011

Mick McKellar Update -- Day +253


I am home! The surgery went very well, although there was (I guess) an unusual twist, and I am wearing a suction device to draw blood and other stuff from the surgical area. I cannot lift over 10 pounds and must not stretch, twist, or bend more than a small amount...no problem because it hurts to do those things.

There is some pain and breathing can be difficult at times. The worst is using the "Airelife" volumetric incentive spirometer every hour. Performing and monitoring my own postsurgical breathing exercises is a cool idea, but (to put it bluntly) it hurts. I have pain medication, but have managed to avoid taking it until about a half hour ago...just before turning in for the night.

Of course, I am taking antibiotics to prevent infection. Kudos to Portage Health medical staff for great, friendly, and professional care. I was particularly taken with the new disposable surgical robe system. It was made of paper. It covered my posterior. And get this...when I said I was chilly, the nurse connected it to an air pump device that circulated heated air into the robe, keeping me nice and toasty while waiting for my surgical adventure.

Best of all, I was home for Halloween and was able to see my grandsons, Daren and Raine, in costume tonight. Both were constumed as Batman (Batmen?). Their family dog was dressed up in a cape and went trick-or-treating as a Vampire Pomeranian.

Thank you all for your prayers and good thoughts. I am certain they powered a successful surgery and allowed me to go "under the knife" with more confidence and comfort than ever before.

God bless and good night,

Mick

(rapidly becoming a hollow man on Halloween)

Sunday, October 30, 2011

Mick McKellar Update -- Day +252


The intrepid walker has not been walking very far for the past few weeks. It seems some of my medications have combined forces to produce prodigious pedal edema. Swollen legs, ankles, and feet make walking unsteady and very uncomfortable. One of the suspected culprits, Norvasc (a calcium channel blocker), will soon be replaced with Lopressor (a beta blocker). I have the new medication, but was advised not to switch because of tomorrow's grand adventure.

Tomorrrow morning (October 31...yeah, Halloween) at 6:00 AM, I will check into Portage Health for surgery to remove my gall bladder. I am scheduled for laparoscopic surgery (i.e., four bandaid surgery), which would normally be handled on a outpatient basis, but may require that I remain at least overnight to monitor the response of my compromised immune system. Recovery from laparoscopic cholecystectomy normally requires about two weeks. In my case, they said from at least two to likely four weeks.

The rush to get this done is based on my upcoming appointment at Mayo Clinic on Nov. 30 and Dec. 1, 2011. I need to be healed to drive for nine hours to Rochester, MN...in the winter. They need two days testing this time, because of concerns over a decrease in my lung function, from 84% in June, to 68% in September. Suspicious of pulmonary fibrosis, I will need a CAT scan and more pulmonary function studies to make the diagnosis.

Lots of fun, eh?

Thanks for all your prayers and good thoughts. God bless and good night,

Mick

Monday, October 10, 2011

Mick McKellar Update -- Day +231


I wrote a poem today, and I have not been writing much lately. Considering how much joy it gives me to put my virtual quill to electronic paper, I had to search for a reason. In that search, I discovered to my chagrin, that I may well have been hiding from the blunt and solid reality of living with my infirmity, my inability to make the final leap from terminally ill to terribly uncertain. Sometimes, I feel like the ancient oak: stolid and solid on the outside, yet silently rotting within. Little wonder, I guess, that I would seek to hide in plain sight, and become just A Face in the Crowd -- the name of my poem.

The poem is a departure for me, a free-verse, free-wheeling run through the autumn leaves blowing about in my mind. It has been 231 days since my brother's gift brought me back from the brink of oblivion and started me down a new path. Obviously, the path has been (and remains) strewn with plenty of large, sharp stones and pervasive potholes. For each step forward, there has been a price, but a small price for living on, well beyond the six to eight month term limit predicted by my doctors prior to the stem cell transplant. Days like today make it seem the transplant was a lifetime ago. Each day of the 231 feels like a lifetime in microcosm, a full generation trapped in amber to be put on my shelf and re-visited...or at least dusted occasionally to keep the warm golden gleam kindled deep within as brilliant and mellow as possible.

How does one measure such treasure? How does one communicate the joy of pain, when pain is the proof of life, the immutable substance of existence, and the loving link to life among family and friends? Only poetry holds the promise and potential to paint, to sculpt, to visualize the full measure of the treasure.

Intrepid walker surveys Brockway Mtn.
The tree has a new ring

Summer is past and autumn announces the threat and promise of white winter. I have lived and grown since last we spoke, though in silence, in a solitary retreat from my habit of stridently announcing my current medical status to any and all who would stop and take notice. My younger son, Michael, came for a visit. Marian is currently in Federal Way, WA -- visiting with my daughter and two of our grandchildren. I did not travel, both to avoid two long entombments inside sealed tubes of aircraft aluminum, with concomitant exposure to viruses and bacteria, and to free Marian to enjoy time with grandchildren who would be hampered by rules not to touch grandpa -- the fellow in the Darth mask -- for nearly two weeks.

While the cat is away...

...there is no time to play! My days have been busy since Marian departed for Washington. I had my eyes checked and discovered that my far-sightedness in my right eye has degraded by a factor or four since my last check up (in 2008, oops). Apparently my sole remaining cataract, a yellow one, has decided to misbehave. Surgery is indicated, but I opted for a new lens in my glasses for the moment, as my doctors already want to me have my gall bladder removed in the next couple of weeks. Soon, I could give to meaning to the term: "Hollow Man."

I cleaned out my garage and actually managed to park our small car in there. It took nearly a full day of drudgery in a Darth mask, but it IS done. I raked both piles of leaves and bushels of apples from my yard...talk about a renewable resource...yikes! Today, I even managed to wash my own laundry and hang it outside to dry. I feel positively domestic.

Of course, all my activities (the above and much more) have been limited by my anemia and quickly-depleted batteries. At least, I have been sleeping well. All in all I am doing quite well, considering.

Thanks for all your ongoing prayers and good thoughts. Good afternoon, and God bless.

Mick

Wednesday, September 28, 2011

Mick McKellar Update--Day 219


We made it! I drove the full 400 miles to Gift of Life Transplant House in Rochester, MN today. My legs were screaming at me a bit at the end of the nine-hour car ride, but it was a nice day (after the thick fog burned off). We had patchy, dense fog from home until after we were well past Ashland, WI. Once the sun came out, the fog was history, and what started as a cool and damp morning ended as a sunny and warm afternoon.

I have a check up at Mayo Clinic tomorrow: blood tests, pulmonary function tests, and consultations with a pharmacy technician, my BMT coordinator, my doctor, and a surgeon (about the gall bladder episode). It will be a very full day...after which we hope to rest a few hours and head home early Friday morning.

Medically, I seem to be doing well. Despite an ongoing problem with pedal edema (involving my lower legs as well) and the ever-present fatigue thing, I feel I am doing very well indeed. My last set of blood tests (at Portage Health) were not reported to me by my local doctor or his staff, so I  hope to find out the results here tomorrow.

Marian and I walked down to Canadian Honker for dinner and found the senior portions, not only adequate, but more than enough. My only regret for the evening is that I must refrain from eating anything after 7:00 PM until after my blood tests tomorrow morning. I am allowed some water, coffee, tea, or diet soda tonight...but that's it. After midnight, I am allowed only sips of water (to take pills, etc.).

GOL North (in February)
Oh yes, this time, we are at the Gift of Life Transplant House North --705 Second St. SW -- right across the street from the South house (where we stayed the last two times). This is the original house and we have one of the original rooms (room B). It is older and a bit smaller than our room at the south house, but it is very comfortable and it has a charm only an older home can provide.

Well, I just wanted to let everyone know where we are. I hope to have more details and information about my condition and ongoing recovery tomorrow evening. God willing and the creek don't rise, I shall have time to post a bit more information and perhaps a photo or two from this trip. We didn't take photos of all the color this morning, as it was shrouded in dense, white fog. There were a few enticing, fog-shrouded shots along the way, but I was too focused on getting here to stop and record the images. We saw live deer on the road only once, a small group (about five of them) just past Twin Lakes.

I am hoping my doctor will prescribe something for my swollen and painful legs, ankles, and feet. I have not been walking as much as I need to -- and when I do walk, I must look like a drunken man, weaving down the sidewalk. One older fellow tonight (as we were walking back from dinner), said to me: "Looks like it's time for a cane!" I grimaced as pleasantly as I could and lumbered on at Marian's side...concentrating on putting one swollen, heavy leg in front of the other, propelling my carcass down the sidewalk. I feels like I'm walking on tingling water balloons instead of feet. What a concept!

Enough for now. Twilight arrives earlier than expected these days, especially in the central daylight time zone. Thanks for all your prayers and good thoughts.

God bless and good evening,

Mick

Sunday, September 11, 2011

Mick McKellar Update--Day +202


I hardly noticed as I passed day 200 since my transplant. After my recent bout with my recalcitrant gall bladder, my numbers have rebounded slowly to where they were before the attack. We are praying for further improvement. I will, of course, have more information after we visit with the doctors at Mayo Clinic on September 29th.

Turn on the heat...oops!

Wednesday morning was very chilly and I (reluctantly) gave the old thermostat a twist and turned on the heat. About a half hour later, I turned the heat off again. However, the blower on the furnace continued to run and run and run. Finally, because it was still running on Friday morning, we called for service. Jokingly, I told Marian I was going to grab my rubber mallet and "adjust" the furnace. When the repair person arrived, he opened the front panel and rapped the switch with his screwdriver. The blower stopped. Unfortunately, it would not start again...even after a good cleaning. So...we had the switch replaced. Ouch!

I suppose I should not complain too much, as we had the furnace installed in 1985 or 1986 and it was not required servicing (except cleaning) since. Still, the repair cost was a blow -- especially after replacing our television less than a week earlier. (The old set, only 15 years old, died a quick and unexpected death last week.)

Remembering

Today's services and radio/television coverage has focused on the events of 9/11/2001. As with most of my friends, I remembered watching the disaster unfold on television. I was working for Michigan Technological University then (before they terminated my position in 2004), in the Information Technology department. Later that night, I was moved to write two poems. One addresses the spirits of the lost, the other the depth of insecurity I felt as a result of the attacks.

To honor the memory of the lost and commemorate the day, here are my poems from September 11, 2001.

God bless and good evening,

Mick

Warm Rain - Broken Dreams

We hear you walking on our massive grave.
We feel the warm rain falling from your eyes.
We hear the steady beat of hearts so brave -
A counterpoint, to hundred million cries
Of horror, disbelief, and anger dark,
Rising from the depth where vengeance lies.
A prayer of sorrow sung to music stark,
A scream of terror rising to the skies,
Our broken bodies sing, of spirits fled
Away, among the clouds where eagle flies.
And as our names are numbered with the dead,
And as we fly where courage never dies,
The warm and loving rain of hope still streams,
Upon the broken soil of shattered dreams.

Mick McKellar
September 2001

Death of Sleep

It seems to me an age ago I slept.
I closed my eyes, and snuggled warm and free
Of worry, or of eyes that often wept
For heroes, now entombed in dark debris.
At times, I feel I live a world away
From twisted metal, powdered stone, and pain.
But, then the ghastly images take sway -
Review the awful memories again.
The vast and placid lands that are my home,
Once offered all the safety I could need;
But now, I know the enemy can come
To steal away that peace with lightning speed!
And as we ponder war in our great pain,
Sometimes, I think I'll never sleep again.

Mick McKellar
September 2001

Saturday, September 3, 2011

Mick McKellar Update--Day +194


I did better this time, it has only been nine days since my last posting.

Mayo Clinic set my next appointment for a follow up visit: September 29, 2011. Once again we will leave on a Wednesday (the 28th) and hope to return on the following Friday (the 30th). The doctors at Mayo Clinic seemed pleased with the numbers generated by my weekly blood tests, even though my last hemoglobin count was down again...to 8.7 g/dL (normal for men is: 13.8 to 18.0 g/dL). My other numbers are generally good, some even near normal.

There appear to be no lingering effects from my latest hospital adventure: The Old Man and the Gall Stone. I will see a surgeon in Rochester regarding recommendations on removing a recalcitrant gall bladder when I visit next. At least, I managed to stay five days in a hospital and not bring home any infections or diseases I didn't bring in with me.

Folks ask me how I am doing...

In general, I feel quite well, although my energy level depletes quickly and there appears to be no reserve. I find that afternoon naps, when I can arrange to get them, are quite helpful. I am having no pain other than that which comes from using muscles too long on hiatus. Three times in the last week, I raked apples from under our trees -- I raked them and Marian collected them with a snow shovel and a little red wagon (Radio Flyer) for dumping in a special composting area. The pain in my shoulders and upper back reminded me of how long it had been since I did any raking.

I mowed it all myself...
I managed to mow the entire yard yesterday, and took some photographs to commemorate the occasion. It was cloudy and cool in the morning...perfect weather for a person suffering from medication-induced photophobia. Unlike the latest edition vampires, I do not sparkle in the sun...I just turn red and feel really rotten for hours after exposure. At least three of my medications warn against prolonged exposure to any sunlight, natural or artificial. There are no tanning booths in my near future. Maybe I will join the Pale Force.

The intrepid walker also managed two days of two-mile walks (accomplished in the late evening, just before the sun goes down and there are plenty of shadows in which to hide). Unless there is construction or grass mowing or other dust-producing activity, I can even walk without the benefit of the Darth mask.

Good news and bad news...

First the molasses: After all my complaining, BCBSM may have discovered errors in billing and payment, as well as miscommunication between BCBS of Minnesota and BCBS of Michigan causing these extraordinary additional billings from Mayo Clinic. We may not owe as much as we were told. Our last payment nearly broke the bank...

Now the sulphur: Two times the technology troubles in a single week. First, we sent our Nikon Coolpix camera in to Nikon for repair only to be told that the view screen was somehow cracked and bleeding...and the damage is not covered under warranty. They want more than $105 to repair a camera that cost me about $85 to purchase. Not going to happen. I found a nice Kodak Easy Share at Wal~Mart for around $70. Nice price, but it still hurts.

I still have not determined how the view screen cracked itself while sitting quietly on my desktop between uses. Odd, that...

Second, our ancient (about 15 years old), 27-inch, combination space heater and television quietly expired -- right in the middle of Marian's favorite soap opera. We bit the bloody bullet and bought a 26" LED LCD HDTV from Vizio at Wal~Mart (last one in stock). It is the largest flat screen that will fit in our old entertainment center, but certainly big enough for our tiny living room. Another ouchy just hit our account. I am hoping it will partially pay for itself in energy savings and reduced eyestrain.

Writing the great American memoir...

Several folks have indicated that I should publish my journal as a book, and share my experiences along the leukemia/blood and marrow transplant journey. I think it is a grand idea, and will work on it as my chemo-brain allows. Editing and formatting a book requires energy and concentration at levels I cannot yet maintain for long. However, I feel I am getting stronger and will keep everyone posted on my progress.

Of course, I still have to find a publisher willing to take a chance on an "unpublished" author. If you know anyone interested in publishing the story of my 100 days plus, the journey of a leukemia survivor and his transplant experience, please let me know. It would be a real motivator to know that a publisher was interested.

Well, it's getting on toward time for my next barrage of pills and a quick supper. Thanks you all for the prayers and good thoughts.

God bless and good evening,

Mick

Thursday, August 25, 2011

Mick McKellar Update--Day + 185


It has been ten days since my last update. The gall bladder situation seems to have resolved itself with the aid of antibiotics and five days of medical care at Portage Health. The course of oral antibiotics has ended, along with the ongoing stomach upset and other less agreeable side effects of those additional medications. My weekly blood tests show that my condition has once again stabilized and my hemoglobin, although still low at 9.0 is much improved from the low of 7.9 when I left the hospital.

Sticker shock...

As expected, the medical bills continue to flow in from Mayo Clinic and elsewhere, as BCBS of MI and my medical providers sort through more than six months of activity and identify services not covered by my insurance. Of course, I must review the material and have calls in to both BCBS and Mayo Clinic to clarify and perhaps even appeal some of their coverage decisions.

In all my years as a writer and editor, I handled entire manuscripts that came no where close to the sheer size and density of the paperwork surrounding my blood and marrow transplant. The BCBS statements alone already fill a 3 inch ring binder. In case you were wondering, the total bill for the transplant (so far) has topped the $125,000.00 mark and is still rising. I may not be the six million dollar man, but I have made a great down payment on achieving that status.

Al fresco...oh, no!

Two evenings ago, Marian and I decided to dine al fresco...on our deck. There was a warm evening breeze and the temperature was moderate (about 75 degrees). I opened the umbrella on our deck table and arranged my dinner in the shade. I have to avoid direct sunlight exposure for more than a few minutes a day, or provide some sort of protection (clothing, hat, sunscreen, etc.) because several of my ongoing medications prohibit exposure.

Marian, as usual, sat in the open, absorbing as many rays as possible, as I huddled under the umbrella near the outside wall of our home. There was only a small slot open to the sky over my head and slightly behind me. I donned my sunglasses and double-checked my sunscreen. I settled down to enjoy my rapidly cooling dinner. I had barely managed one mouthful of my food, when the idyllic scene was disrupted by the pin-point bombing skill of a high-flying starling. The sudden appearance of a bird poop bomb on my left arm and left hand signaled a rapidly deteriorating evening of dining pleasure.

I rushed inside to clean up and returned to my now cold dinner, encouraged by the localized effect of the bombing and lack of collateral damage...i.e., no poop in the food. However, as I set to once again, another visitor dropped by share my meal. A rather large and nasty looking wasp landed on the table and proceeded to crawl onto my plate, making a beeline for the meat sauce on my pasta.

Naturally, I tried to shoo him away, but he was not having any of it. The irascible bug hunkered down between my pasta and my steamed yellow beans, and I swear he glared at me. Grasping the tines on my fork, I flicked him off my plate with the fork handle and waited for him to either come at me or fly away. Instead, he stalked across the glass surface of our deck table and crawled right back on my plate. Nonplussed, I repeated the wasp flicking exercise twice more, and each time my stubborn, winged dinner guest shambled back onto my plate and dared me to do it again. Finally, I flicked him away a fourth time, grabbed my plate of food and returned to the seclusion of our dinner table indoors. When I looked back, the wasp was still there, as though waiting to be served.

Marian said he bothered her a bit. She told him to go away and he did. Go figure.

Hurry up and wait...

I checked my online account with Mayo Clinic today, and I still do not have an appointment scheduled for my next follow up visit. Indications are that they plan to schedule my visit at the end of September. This works well for me, because my younger son, Michael, is coming home from Washington (near Seattle) for a visit in mid-September. Marian is going to Seattle for a visit with Heather and her family during the first two weeks of October.

Meanwhile, I shuffle from one day to the next, enjoying life one day at a time. It is now more than six months since my transplant, and despite the prescriptions, the protocols, and the paranoia, I thank God for the gift of each and every new day. I also thank you all for your visits, letters, cards, e-mails, and communications.

God bless and good afternoon,

Mick

Monday, August 15, 2011

Mick McKellar Update--Day +175


The intrepid walker has plans to walk, somewhere, today. I was released from Portage Health hospital on Saturday, and spent yesterday not accomplishing much. I have already been back to Portage Health for follow up blood tests this morning and I am awaiting results. I hope they remember to call me...

When released on Saturday, my hemoglobin level was at 7.9. I believe that is a new low for me, but is apparently not scary low or they would not have let me go. My bilirubin, which sprung to a high of 5.5 on Thursday, was at 2.0 -- high, but not out of my range. I had no fever to report for the last three days of my stay. So, as I understand the situation -- my liver appears to be going back to normal, my pancreas is well-rested and functioning normally, and my gall bladder is healing quickly. In fact, they were a bit surprised at how quickly I responded to treatment.

That was nice to hear.

I am still taking some strong antibiotics (Cipro and Flagyl) to provide ongoing, broad spectrum treatment -- for six days. After that, I will be back on my normal "dirty dozen" of medications and supplements each day.

It appears that the crisis is over.

Tell it to the surgeon...

However that does not mean that my gall bladder should not be afraid...very afraid. They don't recommend taking it out now, but feel it should come out in the not-to-distant future. As long as old GB behaves, they want to let him hang around while I continue my journey toward a functional immune system. In this case, time truly is on my side. Also, if this is done when my gall bladder is not inflamed, it can likely be done as microsurgery, or what the surgeon called "four Band Aid" surgery. Cool...

Time passes...

I can hardly believe it. 175 days have passed since my stem cell transplant from my brother, Kevin. His T-cells are still making their presence known from time to time, and we are still constantly on the watch for signs of their handiwork. So far, however, the chronic GVHD (Graft vs. Host Disease) period has been rather uneventful.

The whole gall badder episode had nothing at all to do with GVHD or my transplant or my leukemia. According to several doctors over the past week, it was just rotten luck that my gall bladder cast a stone into the biliary duct (or biliary tree, see image) and it stuck, apparently plugging up the system for awhile -- inflaming the liver, causing pancreatitis, and a secondary infection in the gall bladder. An MRI showed nothing, so it must have dislodged, passing from memory and from my system.

Why no new photos?

Would you believe my new Nikon CoolPix camera is on the fritz? The viewing screen shows, not the image (or menus, etc.), but something resembling modern art -- blocks of color or black and some small fragments of images. So, no pictures until I send it to Nikon for repair (under warranty, I hope).

Thank you all for your prayers and good thoughts, both while I was in hospital and ongoing as I endeavor to heal.

God bless and good afternoon,

Mick

Wednesday, August 10, 2011

Mick McKellar Update--Day +170


I have not been posting messages for a few days because I am back in hospital again. Marian drove me to the emergency room at Portage Health on Monday. I woke at 3:00 AM with a slight stomach ache. At 8:00 AM I took some of my medications with water and a few sips of green tea. At 10:00 AM I threw it all up. However, my temperature was 97.2 degrees, and my medications have caused nausea before. By early afternoon, my temperature spiked to 102.3 degrees and we called my oncologist who ordered: "Get thee to the emergency room, pronto!"

A couple of hours and several blood tests later, it was clear that I had a major infection in my gall bladder, an inflamed liver, and pancreatitis. Apparently, I passed a gall stone that temporarily blocked the shared duct for the organs, which would inflame both the liver and the pancreas. An MRI done yesterday did not show any obstructions. This was good news.

As of this morning, my liver is getting mixed reviews (high bilirubin but other numbers are good), my pancreatic enzymes are much lower (indicating it is not as inflamed), and they are considering not taking out my gall bladder -- at least not for now. I continue to receive intravenous antibiotics as my own immune system is incapable of fighting off major infections and needs all the help it can get. The pain in the are of my stomach has finally eased, and my stomach is mostly complaining about taking all those medications without any food as a buffer.

I may be allowed to eat something today. I have not eaten since Sunday evening or even been allowed more than an occasional sip of water since Monday morning. I am looking forward to putting something besides medications in my stomach.

As far as they can tell, none of this has any relation to my transplant or GVHD, although my fledgling immune system makes recovery slower and that nasty old Graft vs.Host Disease boogeyman haunts every decision. I will likely be in hospital at least until tomorrow, maybe longer as they bring down the infection and watch for improvement in my already abused liver. Back in April, GVHD attacked my liver and did a lot of damage. Prior to this problem it was doing quite well and all numbers were normal. Now, old yellow eyes is back.

Anyway, things are stable for the moment and I plan to report any changes. I thank you all for your prayers and good thoughts. They are a true blessing for me.

God bless and good afternoon,

Mick

Wednesday, August 3, 2011

Mick McKellar Update -- Day +163

I'm just preparing for tomorrow's blood tests by fasting tonight, and delaying my cyclosporin capsules until 8:00 PM so the test will be approximately 12 hours after I take the dose. This gives a credible treatment level in the blood tomorrow. Generally, today was one of the good days, with only a small amount of stomach upset from the medications.

Oddly, I don't really get hungry during the day, but my stomach will start to hurt and I will feel a bit weak...this is my sign that I need to eat something. Just another way that life is different after a blood and marrow transplant. Soon it will be six months since my brother Kevin granted me a new lease on life with his stem cells, and a new set of "red-neck" T-cells to patrol my blood stream looking for fast growing cells to attack. I am praying that they will soon find themselves at home. I take anti-rejection drugs like cyclosporin because unlike other transplants, my body does not reject the transplant...the transplant rejects my body.  The doctors tell me that the T-cells will eventually accept their adopted home. Sooner would be better than later. Their activities are what cause Graft versus Host Disease (GVHD), but also create the Graft versus Leukemia effect, because they also attack any remaining cancer cells.

On the subject of brothers, I have another brother named Tim. Although he and my sister both volunteered and were tested, neither was a match for my transplant. About a hundred and fifty years ago, Tim, my wife Marian, and I were members of a rock band named Titus. At the time I played bass guitar, while Tim played rhythm and lead as well as sharing the singing duties with Marian. Well, Tim recently sent me some links to YouTube videos of the Rhythm City Dogs a band for which he plays bass guitar. The videos are of their band playing at a benefit for St. Jude's hospital. Tim is the guy in the red shirt. Links are below, please take a look.

I wish we had videos of our band...

Hurt So Good
http://www.youtube.com/watch?v=fJ5xarci-dI&feature=related
Break Down 
http://www.youtube.com/watch?v=T6J4HD8abkI&feature=related
Jenny, Jenny
http://www.youtube.com/watch?v=XzKJmDvB3zI&feature=related
Roadhouse Blues
http://www.youtube.com/watch?v=sDhFaITBOhg&feature=related

Well, that's my report for today (and my short trip down memory lane). Hope you enjoy the videos. Thanks for the prayers and good thoughts.

God bless and good night,

Mick

Tuesday, August 2, 2011

Mick McKellar Update -- Day +162

Last trip to Mayo Clinic...

I hardly know where to begin...it has been awhile since I last posted an update. Folks have been calling, wondering if I am still alive. Yup. I'm still here, and doing quite well. I did not write many updates because my condition has been very stable for the last few weeks.

The intrepid walker has ventured out a few times, but the heat and unrelenting sunshine in the last few weeks have kept me largely indoors. Three of my current medications warn against any prolonged exposure to sunlight (natural or artificial). I also have to be careful about exertion in very hot weather. The loss of hydration by both respiration and perspiration can cause kidney problems unless I constantly replenish the lost liquid.

However, I no longer seem to have any problem with the skin rash and I can venture outside for short periods without my Darth mask, as long as no one is mowing grass, doing construction or renovation, or otherwise stirring up a dust nearby. I also need the mask in large crowds...especially in close quarters (like the grocery store or at church).

Captain Bloodloss...

I am still dealing with hemolytic anemia, the still inexplicable loss of red blood cells. For three weeks, my hemoglobin stayed at 8.8 (low, but not scary low). Week before last, it dropped to 8.4 (scary low, but no panic). Last week's test showed a hemoglobin level of 8.6 -- an increase all on my own, no change in medications or treatments. We are hoping for another increase this week.


My other numbers have been good. All indicators of liver function have returned to normal levels. Even my creatinen dropped to 1.4 last week...a sign that all the liquids I have been pouring down my throat may be doing something other than sending me to the water closet far too often.

I no longer take prednisone. Consequently, my blood glucose levels returned to normal and not only do I not have to give myself insulin injections, I don't have to test my blood sugar -- things appear to have gone back to normal on that front.

My remaining problems are more like aggravations, really. I get pedal edema (swelling of the feet and ankles) probably due to medications. My saliva tastes awful. This is a very effective prevention against overeating. Whenever I taste something delicious (some few things do taste good to me), my mouth waters and the saliva makes it taste not so good anymore. Eventually, it overwhelms the taste of the food. Yuck!

Legacies...

There remain two long-term legacies from my experience: fatigue and chemo-brain. The fatigue will be with me for a very long time. I remember when I worked, I would gradually grow more tired until I needed rest. Now, I start at a lower level than before and stay at that level until suddenly, the energy is all gone. I go right from semi-energetic to total depletion in seconds. I even take an afternoon nap when possible. I managed to mow my entire yard a few days ago, but I had to take frequent breaks and when I was done, I felt like I needed to sleep for a year.

Describing "chemo-brain" is difficult. Imagine you are the custodian of a massive records center (i.e., the brain) with miles and miles of rows of filing cabinets, filled with millions of files -- all indexed and cross-referenced. Now imagine that someone suddenly reshuffled many of  those files in random order, scattering them among the remaining files. You can find many things, but there are holes, lost files, and any search and retrieval takes much longer. Also, filing new information takes longer, with uncertain results. That is "chemo-brain" and I read recently that the damage may be permanent.

Delicate

In general, I am doing very well. Folks keep telling me that I look good...a new experience for me. My hair has grown back...still mostly silver, but now it is very fine and rather wavy. It used to be rather coarse and straight as a poker. I once again have eyebrows and eye lashes. Even my mustache grew back. However, I also have hair on my knuckles and knees (and other inconvenient places), probably another legacy of the steroids.

Beyond the medical condition

Everything looks normal, but I am constantly reminded by doctors, a dozen medications, and daily protocols that the state of my recovery remains delicate and easily shattered by silly little mistakes or errors. Far too often I leave the house without my mask and have to return for it. I have lost count of the number of times I have grabbed something far too heavy for me now or attempted a task beyond my strength and endurance because I remember doing it before. I am not even supposed to go down into my own basement for fear of contact with mold or mildew that might be crouching in the dark down there, ready to spring out and attack my fledgling immune system. Perhaps the worst is not being able to maintain physical contact with my grandchildren or to be in their presence for long without my Darth mask. If I forget and shake hands with an old friend, I have to reach for hand sanitizer as soon as possible.

I am still living life one day at a time. I still thank God every night for the gift of the day and I ask for the grace of another day tomorrow. I also ask for strength to endure the isolation forced upon me by ongoing paranoia about germs and infection, and by the protocols of self-defense (the mask, no touching).

I will endeavor to post more often and keep everyone up to speed on my progress. I still live with the knowledge that my condition can change in a matter of a few hours, due to chronic GVHD (Graft-versus-Host Disease). However, I hope to have many boring reports of minor improvements in the future.

We head back to Rochester MN on August 10, for a day of tests and consultations on August 11, and then a return trip on August 12. After that visit, I hope to have good news to report.

Thank you all for your continued prayers and good thoughts. God bless and good night.

Mick

Wednesday, July 13, 2011

Mick McKellar Update -- Day +142

Despite the rumors, the intrepid walkers are still here and still active. I have not written an update since day +136. My medical condition has not changed since that date, and I have been out walking only a few times since then. I met with my local oncologist on Monday, July 11. He did an examination and ordered a few blood tests. I have not heard any of the results from the blood tests.

A nurse called from Mayo Clinic yesterday, and advised me that my next appointment for a checkup will be on August 11. This means we will leave the Copper Country on Wednesday, August 10 to return, hopefully, on August 12. He promised that all of the tests would be done on one day.

The tests done at the clinic are primarily blood tests, looking at my blood counts, liver functions, and kidney functions. They also do a pulmonary function test. The pulmonary function test is not fun -- I have to sit inside a glass cabinet and breathe into a machine -- inhaling and exhaling to my utmost maximum limits. Then they checked my oxygen level while I climb up and down a stair step for 3 minutes. Stairs are my enemies…

An invisible illness

Three or four months ago, one could tell I was quite ill simply by looking at me. I looked like death warmed over. Now, except for when I'm wearing the Darth mask, it's pretty tough to tell that anything is wrong. The rashes gone and the hair has returned -- even my eyebrows, eyelashes, and mustache have all fully returned. In fact, I need a haircut as I am beginning to grow a senior mullet…

However, major problems still persist though they be invisible. I have to wear the mask in public and around children as well as anywhere that construction or renovations are taking place. I also have to wear the mask when we're cleaning or mowing grass, etc. This is because I have no resistance to infection and my immune system is that of a newborn. I have to wait at least a year in after my transplant to begin inoculations for childhood illnesses like measles, mumps, and chicken pox. I am even supposed to avoid going into my own basement, because of potential exposure two molds and mildew.

The tired one

My chief complaint, however, remains the persistent fatigue problem. This is partially due to something called hemolytic anemia. My hemoglobin level continues to decrease and we're not certain why that is happening. The last information I have is that my hemoglobin level remains at 8.8. This is low, but not low enough to require a transfusion yet. Most likely, the reduction in hemoglobin is due to some of the medications I take every day.

In my previous experience, as I work during the day I grow gradually more tired as I work along. In my current situation, I start out pretty much in low gear and continue at approximately the same level until suddenly the batteries are dead. In my conversations with my doctors, and in my research, the general consensus is that fatigue remains an ongoing problem and will persist indefinitely. I guess it's just part of the package. As one person stated on a DVD provided via Mail Clinic, " Get used to the idea of afternoon naps."

Paranoia?

Is it paranoia, it's something really is out to get you? Marian usually does a full body check at least once, if not twice each day. We are constantly on the lookout for any changes that might indicate a rash, infection, or other problem. We question every cough, consider every sneeze, and monitor every bruise because even minor problems become major catastrophes in quick order. It's the nature of the illness, I guess.

Still, we are doing well, following the protocols, and praying for the best. Thank you to all who have been praying for us and sending good thoughts our way.

God bless and good afternoon,

Mick

Thursday, July 7, 2011

Mick McKellar Update--Day +136

The intrepid walkers sojourned twice from the Gift of Life Transplant House (south) to the hospital today for tests and consultations. The tests were generally good news. I am no longer taking any prednisone and my dosage for blood pressure medication was cut in half. The ever-present rash seems to have taken a hike (or is barely there), meaning very little use of steroid creams from now on. I am no longer taking insulin, as my blood glucose has stabilized at normal levels (around 100).

In general, I'm in pretty good shape for the shape I'm in...

I still have problems with fatigue...I tire easily and completely. There is no gradual decrease in energy, as I start in low gear and continue until there is suddenly nothing left. My saliva has changed into something evil tasting and it ruins nearly everything I eat. So, we're busy trying to figure out what is causing that and the ongoing hemolysis (death of red blood cells) problems.

We will have to come back to Rochester again in a month for more testing and another checkup. At least it's summer...

We head for home tomorrow morning early, and are praying for another good ride in good weather.

Thanks for the prayers and good thoughts,

God bless and good night,

Mick

Tuesday, June 28, 2011

Mick McKellar Update--Day +127

The intrepid walker has been hanging around the house lately...there is so much to be done here. Yesterday, I had to replace the battery in our minivan. Five months of inattention and 4 1/2 months of winter weather killed the old one. I had forgotten how heavy car batteries can be, especially when your arms are as strong as noodles. I had also forgotten how much a new battery costs -- ouch!  

Then I thought I would try my hand at raking up some grass. The result was pretty much what I expected, I did well for the first 15 minutes or so, and then my batteries went dead fairly quickly. Marian finished up the raking, and I went off to find other things to do.

Defense

The other things I found to do yesterday involved working with some poisons, which means I had to be extremely careful. I sprayed my basement and foundation with a maximum strength bug spray, and then I seeded the ground around the house with a solid dose of Sevin Garden Tech (lawn insect granules). Each spring and each fall, I do this to create a defensive perimeter around the house. Our Michigan basement is created from poor rock, like so many other foundations in our area, and is not very well sealed. To keep the bugs out, I have to set up a killing field around the house.

Most years, is not that big a deal. This year, because of my illness, I had to take special care when handling the poisons and provide sufficient ventilation for their application. Actually, I'm not even supposed to be in my basement. There is too much opportunity for me to run into dampness and mildew/mold. So I dressed up with an old shirt, my Darth mask, hat and gloves. I looked around, but I just couldn't find my hazmat suit anywhere…

Numbers

Later in the afternoon, a nurse from Mayo Clinic called to advise me that the numbers looked good from both the local testing last week, and the results from the tests done on samples shipped to the clinic. This was very reassuring. So far, the experiment with skipping insulin injections is going along very well. All of my readings have been at or below the normal range (for someone still taking corticosteroids like prednisone). I am hoping that a good report tomorrow will allow me to continue to avoid an insulin injection each morning.

Today

We drove the minivan down to Houghton this morning, to do a little shopping for necessaries. The old monster behaved itself, although I wouldn't trust it for very long trips. Among the necessaries was a small bottle of fuel system cleaner. I put some of this into our old lawnmower, and after many, many pulls on the starter cord, the little beastie roared to life and kept running. I was able to mow a small section of the front lawn with no stalling or sputtering or dying of the engine. I hope this means we have resolved the issue of our non-starting lawnmower.

However, I had no such luck with the weed whacker. It's a small two cycle engine, and the gas and oil mixture has been sitting in there since last fall. I emptied out its little tank, and refilled it with fresh gas and oil mixture. Then I cranked, and cranked, and cranked to no avail. I am letting it sit until tomorrow, perhaps to allow the gas and oil mixture to loosen up any sludge, but mostly because my right arm is about to fall off my shoulder…

Getting back to normal

Friends and family often ask me: " How are you doing?" The answer is, I'm doing just fine. Although I kvetch a lot, the fact is, it's great to be alive! All of the protocols, the details, the medications, and the paranoia are frustrating, but they are a small price to pay when one considers the alternative. How could it be otherwise?

Each day is a gift from God. I remind myself of that fact every night when I go to bed, and I thank Him for that day, and ask for another one. So with all of this going on, is it possible to get back to "normal?" The short answer is: It depends. By that, I mean that normal has been redefined and modified on a daily basis. There are so many things I used to do that I cannot do any more. There are so many things I do now, that I didn't do before. Change has become the norm, so by that definition perhaps I have gotten back to normal…normal being different everyday.

Well, it's not dark yet, but the shadows are getting long and my attention span is growing short. As twilight rapidly approaches, and my batteries are quickly ebbing, it's time to say good night.

And so, thank you all for your messages, e-mails, and phone calls. Thank you all for your prayers and that thoughts.

God bless and good night,

Mick

Sunday, June 26, 2011

Mick McKellar Update--Day +125

Today is recovery day. I tried mowing the yard yesterday. Had to borrow a mower, because although my dependable old Eager-1 will start, it won't keep running. More maintenance is needed. I managed to mow about one-half of the yard before collapsing. My batteries went completely dead. I don't think I have been so profoundly fatigued since the early days of my transplant/chemotherapy treatments.

This morning, muscles that have remained unused for months are complaining bitterly about being used yesterday. I expected as much, especially for the shoulders and upper arms. My legs did not mind the exercise as much and are OK for the nonce.

Marian (and some friends) finished the major mowing of our fledgling hayfield. With all the rain and sunshine, the grass has been growing quickly. Now, I have to get the weed-wacker started. Like my poor old mower, it did not get proper winterization last fall (I was kinda busy at the time), and will need rehabilitation this summer. Just one of many projects created by more than five months of inattention by the owner...

The grand experiment

I'm hoping for the best, and so far my blood glucose readings have been at or well below the average range...without the aid of insulin injections. If this continues until Wednesday, I am hoping I can stop injections and put the issue of steroid-induced type II diabetes behind me. How long and now often I would be required to test my blood glucose is unknown.

A matter of taste

The devil is in the details, and the flavor of food is one of those details. My taste buds, which went on leave while I was undergoing initial chemotherapy last year, have failed to return or have come back altered. In general, food does not taste very good. If one could create this condition without having to take toxic chemicals or suffer a debilitating disease, it would be one of the most effective diets on record. It is truly difficult to have an appetite when nothing tastes good, and some things that tasted really good, taste really awful.

Although the lack of taste is a frustration for me, it can be worse for Marian. Imagine doing your best to cook a meal, seasoning it to taste, and serving it up, only to have your husband refuse to eat it because it doesn't taste good to him. That's more than frustration. So, we have kept our experiments small, and the portions even smaller. I hate wasting a meal, and have on more than one occasion eaten food that didn't taste right -- so it would not be wasted.

One of the hardest things for me to imagine, was any day during which I would have to force myself to eat. There are people who eat to live; and there are people who live to eat. For most of my life, I fit into the second category. Since the beginning of chemotherapy, I have fit into the first category. As I said, the devil is in the details…

However, missing out on  a few favorite foods, whether or not the condition is temporary, is a small price to pay, when the alternative, the downside, is the long sleep. There remains a very good possibility that one or more of my medications is causing, and reinforcing the problem with my taste buds and the thick, nasty tasting saliva in my mouth. Should I be gifted with enough days to reach the point where most medications can be discontinued, I may yet enjoy my favorite foods again.

In the meantime, taking things day-by-day means making the most of what I can retain and remember and finding a way to override and overlay the lack of taste with memories of flavors past.

Our front curtain is drawn as the flavor of twilight moves on into the dark taste of night. Thank you for your prayers and good thoughts, your messages and phone calls.

God bless and good night,

Mick