Mick McKellar Update — Day +359

Encounter with Efflorescence

The battle was joined ten itchy days ago, as my visage transformed from prison pallor to pretty pink to ridiculously red. After nearly six months, the RASH was back...and this time, it itched! The radiantly red skin rash spread further than last time, reaching my feet and my face. It was toasty to the touch, tender to the slightest brush of clothing or bed sheets, and it screamed to be scratched -- which hurt like the dickens as it temporarily relieved the prickling tickle.

Medical science rode to the rescue with the same formidable weapon as our last epic battle...triamcinolone cream...a soothing application of steroids to tame the flames and cool the creeping and crawling of my epidermis.

I am pleased to report that the enemy is in full retreat...not retired from the field, but in disarray and fading from view.

Numbers Game
More blood tests were done yesterday, to track the attack -- most likely an outbreak of Graft vs. Host Disease -- and determine if my liver or kidneys were once again being set upon by renegade redneck T-cells. My doctor called this morning to report that all the numbers looked good...hemoglobin at 11.9, white blood count at 6.4, and platelets at 169,000. The liver function and kidney function numbers were all normal. Apparently, our battle was merely with the surface fleet.

Just a week away...
Next Tuesday, February 21, 2012 is the anniversary of my blood and marrow stem cell transplant -- one year since I received the gift of life from my brother, Kevin. I am still working on how to commemorate and celebrate this great gift. One thing is certain...I don't want to celebrate by scratching...;-)

It's late and I gotta rest.
Tomorrow's another day,
To live with passion and zest;
To love, give thanks, and to pray.

God bless and good night,

Mick

Mick McKellar Update -- Day +350

For quite awhile, my journal entries have been essays on living with a nearly invisible disease. I talk about my thoughts, and how well I'm doing. Everything negative has been simple complaining...

I guess you could say we've gone from simple complaining to full Red Alert. The kids arrived about 3:00 PM on Saturday (02/04/2012) for an impromptu early birthday party, and upon arrival, my youngest grandson, says: "Grandpa, why is your face so red?" At which point, everyone gasped (in unison) and I ran for the bathroom.

I don't spend a lot of time looking in mirrors because there's always this old guy looking back at me. This time, he appeared to have a really nasty sunburn...not just on his face, but everywhere. It seems only my hands and feet have missed out on the fun. A daily body-check, done that morning, showed no hint of a rash or redness. The doctors at Mayo Clinic warned us that changes happen quickly. Still, even my paranoia didn't see this coming.

Hospital, redux...

Quick as a wink, the party was put on hold and we drove swiftly to Portage Health Emergency Room. They drew blood, not once, but twice. Did a chest x-ray. Did urinalysis. Poked, prodded, and finally called the BMT desk at Mayo Clinic. Looks like my rash is back. There is nothing systemic wrong with me. Liver and kidney screens were normal. They checked my drug list and found nothing to cause this. The assumption is that GVHD may be back and playing with my skin again, but that has not been proven. We're trying steroid creams again, and I have to call Mayo tomorrow -- they may want us back down there, pronto.

There's not a lot of pain and only minor itching. I feel pretty weak, but did not and have not run any kind of fever. I am hoping we can control it here -- with the steroid creams.

Home again, home again, lickety-split...

The doctors prescribed the same steroid cream we used in Rochester, and sent us home. Fortunately, I still have some of that cream. We resumed the party (for my grandson's birthday) with a very subdued (and well greased) lobster-man in place of noisy old grandpa.

Today...

This morning, my rash was less angry-looking than yesterday, but still very warm to the touch, and this time (unlike last time) there are a few places that it itches. I feel rather weak and tired, but not sleepy.

So, here I sit, in the radiant glow of my flat panel monitor, and ponder just how quickly the situation can change. I am also praying that the steroid cream will work its magic overnight, and tomorrow morning I can say, "Pink" instead of "Red." It is definitely a set-back, but we have overcome many such set-backs on our journey of nearly two years with this awful disease.

Well, I have to get more rest than usual, so...

Good night and God bless,

Mick

Mick McKellar Update -- Day +345

It seems that, despite my best efforts, the sinus misery and wracking cough terrorizing my friends and family, has taken up residence in my head and chest. Even my infamous Klingon sneeze has "beamed down" to visit on occasion. There is no fever...my temperature reached a maximum of 98.5 degrees F early this morning, and the cough disappears...sometimes for an hour or two at a time...only to return for no apparent reason.

Fountain of Phlegm...

However, I am duly impressed by how much nasal phlegm I can produce in a day. I am certain I must have emptied my head several times in the last eight hours. Oddly, my breathing is not blocked or restricted, however, like a leaky faucet...the dripping continues.

Marian is fighting it. Amanda is fighting it. Nearly everyone I have called or contacted is fighting some version of this nefarious nasal malady. Some are blaming it on the warm weather, activating molds and mildews that are normally dormant in cold and dry winter weather.

I have consumed a great deal of chicken soup and gallons of black tea, green tea, coffee, and water. Warm liquids seem to help with the cough, but also seem to stimulate the sinuses. Sleeping is difficult and often interrupted. Still, I am hoping to get it under control soon.

Editing again...

For the past week or so, I've been editing my poems into a single collection (or series of collections) to be stored (and backed up) in one location. I have also begun re-editing my first 100 days journal into a single e-book form. It is slow work, because I tire easily, but it feels good to finally organize it.

The biggest job will be my collected poetry. I finished 2005 and started 2004. I wrote and shared 106 poems each year, so there is plenty to review.

I had better get some shut eye, so it's off the bed. Thanks for your prayers and good thoughts. Good night and God bless,

Mick

Mick McKellar Update -- Day +340

Today, I began a task much larger than I expected. I decided it was time to collect my poems into one place and have a good long look at the collection. Because a friend mentioned a poem I wrote in 2005, and I was searching through my 2005 archives, I decided to begin with that year and move backward and forward as time and tide permit.

Celebration preparations...and changed medications...

Tomorrow is Marian's birthday, and despite my natural proclivity toward curmudgeonly behavior, I have to be nice to her...all day. We are hoping for decent weather, permitting at least the opportunity to dine out. We've both been entertaining what I call the "unsightly sniffles" for the last week or so, and pray for good sinus weather.

Despite a few sinus headaches and the occasional Klingon sneeze, my health has been good. I managed to spend nearly three hours clearing out the 16+ inches of snow we received by Tuesday morning with only a shovel and a scoop -- with no apparent negative consequences.

I am waiting on an new prescription for the anti-cancer drug I take...a stronger dosage so that I can begin tapering off some of my other medications. 25 more days will bring me to the end of my first year since the blood and marrow transplant on February 21, 2011. What a miracle!

A light from the past climbs the sky...

Buried in the original poetry from 2005 was a piece Marian and I discovered while foraging in the uncharted wasteland we call: Attic. The mysterious disappearance of poetry I wrote to my mother and the poetry she wrote to me from 1962 to 1990 has never been explained. Very little remains of anything prior to 1990 and the next ten years were fairly dry. Finding the handwritten poem, filed among correspondence and the packaged detritus of those years was a miracle. I include the poem and part of the introduction because it is one of the few examples of a free-verse meditation of the kind I often wrote to my mother. It broke my heart to read it again.

On May 6, 1990, my father and I were in a hospital room at Marquette General, watching my Mom as her breathing slowed and finally stopped. She died of a bacterial infection that swept through her body, putting her into a coma. She had completed more than a year's worth of chemotherapy and radiation treatments that left her unable to defend herself. What follows was my recollection of the thoughts streaming through my head and the pain searing through my heart, as we maintained her Death Watch.

Mick


Death Watch

Are you still there?
A helpless specter,
Adrift about your bedside,
A penitent, kneeling,
I caress your still hands.

Your hands were always cold:
Electric,
Blue ice flame -
Greeting me on my first day,
Silken cool touch on my fevered brow,
Holding my children,
Your touch a whisper.

Are you still there?
The cold seems deeper,
The flame all but gone:
Ice and wax
On a bed of snow.

Your eyes sang green,
To all who could bear
The hazel gaze.
Beacon-bright
Patches of green fire,
Alight among the seams
And lines of your life.

Are you still there?
The light has dimmed,
The flame all but gone,
I cannot see
Your evergreen fire.

Your voice was all I heard.
A sigh - a litany,
A song - a rainbow waterfall,
An ageless oracle.
I never thought
To listen for a breath -
A life sound.

Are you still there?
Each captive gale
Carries my heart
Adrift.
I dread the calm.

I hover above you,
A shadow of life.
My fingers scream to you,
Tracing rivers of fire.
My tears,
A gentle rain,
Calling forth life.

Are you still there?
Silence.
Are you still there?
Stillness.
Are you still there?
Peace and pain.

Warm lips I press
On icy brow.
Goodbye.
Your house is empty.
Adrift
On a bed of snow.

Vacancy.

Are you still here?

Mick McKellar
1993

Mick McKellar Update -- Day +334

As you can see, I enjoyed a good birthday meal and the dubious joy of driving about on icy roads tonight. Twice today I scooped snow, both to clean my driveway and provide a good excuse to indulge in far too many of Marian's good chocolate chip cookies, as well as a huge (and free) meal at The Hut.

Today, I am officially an old fart. I've been on this planet for 62 years...well, there were a couple of times in the sixties that I'm not entirely certain I was fully here...but let's not go there.

More than once in the last couple of years, I nearly crossed the border into another world -- the next one. I am ashamed to say that it took those close calls to teach me the value of being 100% present in this world, and 100% in the present. Although I endeavor to live day-by-day, I still plan for the future and think how wonderful it would be to continue having birthdays for a long while. The future seems like a really interesting place, but I've learned the hard way that I cannot live there, and that it's not wise to invest too heavily in landscaping future real estate. I found the best definition of optimism and the core of a purposeful life in a conversation between two brothers in a pioneer family in Manitoba. Nelson Henderson told his brother (and author, Wes Henderson) on his graduation day: "The true meaning of life, Wesley, is to plant trees under whose shade you do not expect to sit."

Legacy

Slowly, I have begun planting my weald of ideas, my grove of memoirs, my wildwood of poems and essays in the profound hope that one day a great forest of conception, perception, imagination, and faith will shade and shelter the homeland and province of my descendants' world. These are trees under whose shade I will never sit. I want two things: To live on in the hearts of my progeny, be they heirs of my body or kin of spirit; and to leave the world a better place for having lived in it.

I don't seek wisdom, for wisdom is merely a byproduct of embracing humility and applying common sense to daily living. Seeking wisdom, like seeking happiness, is a fool's errand. I write about me and about my life, because when I attempt profundity, I hear only the braying of a pompous ass.

Having time...

I pray I will have time to plant sufficient seeds. My current condition appears to be good. I am no longer taking cyclosporin. As soon as I receive a more powerful anti-cancer drug, I will begin discontinuing some of my daily medications. I hope to receive my inoculations at the end of February or in early March.

Note: God granted me yet another miracle...it is after midnight and this is day 335 after my transplant. I need to sleep so I can scoop more snow in the morning, so...

God bless and good night,

Mick

Mick McKellar Update -- Day +325

"Live in the sunshine, swim the sea, drink the wild air." Ralph Waldo Emerson

Yesterday was a good day for me. I received two calls regarding results from Monday's blood tests, one from my local oncologist's office and one from Mayo Clinic. The numbers look pretty good. My hemoglobin is at 12.6, and although that is still below normal, it is the best number since before my chemotherapy and transplant. Most all other numbers are well within the normal range, and that is very encouraging.

Another one bites the dust...

My doctor in Rochester stopped my Cyclosporin medication, effective today. Cyclosporin is the anti-rejection drug which helps prevent Graft versus Host Disease, but also suppresses my immune system. After a (short, I hope) while, I may be able to discontinue some of the other drugs that help simulate an immune system. The only downside is that the dosage of my anti-leukemia drug will likely increase by a factor of five...the dasatinib that helps block the return of my Chronic Myeloid Leukemia.

Although no specific appointments have been set, I will have to return to Rochester, MN near the end of February to be tested again. Should those results look good, they will begin my inoculations. I wonder if they will give me a lollipop?

Taking the air...

I love the above quote from Emerson, but might have rewritten it for our area: "Look for the sunshine, shovel the snow, chew the icy air." Of course, despite a few storms and some windy, snowy days, our winter has been warmer than usual...so far. Our snow total is barely over 90 inches to date, though I hear up to a foot may be coming in the next 48 hours. Winter here remains, as always, totally unpredictable.

Although I have not yet been able to renew my long-distance walking, I look forward to trekking further from home with each passing week. I remain too unsteady on my feet to play chicken with oncoming traffic on our local highways. In the winter here, there are no sidewalks except, perhaps, downtown near the stores. One must walk on the road (or the shoulder, should the plows ever push the snow off the shoulder) and move off the road when traffic comes...to slog in the slush and sludge piled on the shoulder for pedestrian walking convenience. The side roads are no clearer, but there is less traffic to dodge. A couple of miles of that kind of slogging is more than a mere "stretch of the legs."

Why not "bite the bullet" and pay for a gym membership? Because when the weather is bad enough to require that I remain indoors, I would likely have to walk the mile to the nearest gym. I may as well save the money and endure the walk...

Way out west...

Our son-in-law, Chris, is beginning intensive rehabilitation. We were waiting to hear what the pathologists have to say about the nature and treatment of his glioma. Heather posted the following this afternoon:

"We have final pathology - level 2 - low grade glioma. This is the best of the bad, so that's very good. We haven't spoken to anyone about treatments, yet. That will be later. So - yippee!!!"

Their decisions will determine future treatment and prognosis. We pray constantly for him, and for Heather, Eli, and Rose.

Day by day...

I still treat each new day as a mighty gift from God and I thank Him each morning, when my eyes open and I realize I am alive and kicking for one more day.

An Indian proverb says everyone is a house with four rooms: a physical, an emotional, a mental, and a spiritual. Although most of us live in one room most of the time, unless we go into every room every day, even if only to keep it aired, we are not a complete person. I like to spend as much time as possible, rummaging about in all four rooms. They may not be orderly, but the doors and windows are open, and I try to let as much light in as I can manage.

Thanks for your prayer and good thoughts, God bless.

Mick

Mick McKellar Update -- Day +319

I will have more details (numbers) about my current medical status after blood tests on Monday, January 9. At the moment, tests are scheduled only once per month, in tacit recognition of the stability of my current condition...I guess. Despite the aches and pains that come with the approaching conclusion of my sixty-second year on this planet, I am well.

The Helplessness of the Long Distance Father

For the first time since my own crises blossomed, the helpless shoes of the distant parent are on my own feet. Our son-in-law has come through his second craniotomy in two weeks, to remove the bulk of a brain tumor. We call. We read postings on the medical website and on Facebook. We pray. But, we cannot hug or visit in person. It is hard to simply be supportive...long distance.

Chris has come out of the second surgery in good condition with 80% of the tumor removed. More than that, we do not yet know.

Silent Songs and Subtle Silences

I am writing again, and I linked my second poem written today to this message.

http://mickmckellar.blogspot.com/2012/01/hole-in-bucket.html

Mick