Mick McKellar Update — Day +757

I am sitting indoors, waiting for the other shoe to fall — snowshoe, that is! Given our current interest in all things meteorological, climatological, and geological, I am certain someone has a theory regarding our weather quandary. Officially, spring begins day after tomorrow (March 20th) — a comforting thought, though whimsical, given we have received nearly 20 feet of snow this season, and a large portion of that white winter weather phenomenon remains on the ground and we are expecting upwards of 30 more inches tonight through Wednesday. Even veteran Keweenaw residents are beginning to chafe under the burden, and grow weary of searching for places to put snow shoveled, scooped, or blown from driveways, walkways, decks, and roofs.

Shut-In

The hardest part this winter has been watching Marian struggling with all the snow. I cannot help much because: 1. The effort gets me out of breath very quickly, and 2. The cold air triggers asthma problems — making it difficult to breathe. The combination is like a one-two punch to the chest. Indoors, I am doing well — I can even climb the stairs to our second floor two times in a row without nearly passing out!
The next hardest thing is missing out on my grandsons' birthday parties (because there will be lots of children — i.e., germ carriers) present at these events, and all the other groups and gatherings that would normally populate our winter schedules. Mostly, I get out for hospital visits for blood testing, and occasional shopping trips for things I must purchase. Otherwise, I hide here, behind the walls of my home, and view the white world beyond the threshold...

Numbers Game

My blood tests were done last Thursday. I called today to ask for the results, and they all look pretty good. Even my blood glucose has been behaving nicely (93) and my platelets have risen to 199,000! I was happy to hear my potassium level is normal, because I found out that those with low potassium and/or magnesium levels may be in some danger if they are taking Azithromycin — an antibiotic I take on Monday, Wednesday, and Friday. The danger involves a peculiar form of arrhythmia and can have the side-effect of sudden death. Makes me want to eat my broccoli...

Getting Ready

We are preparing for a second attempt at our first trip to Rochester, MN and Mayo Clinic — this time leaving on April 2, 2013 and returning on April 5, 2013. Our first attempt, back in February, was foiled by two rather large, nasty blizzards. This time? Who knows what Mother Nature and Old Man Superior have in store for our journey...

The roof of our garage, across our deck.

Prayers and good thoughts are always welcome and certainly helpful. I have hopes that all the testing will demonstrate that things have improved. Barring that outcome, it will be great if they show no further degradation. I'm well past the two year anniversary of my blood and marrow stem cell transplant, and would like to begin making some plans on how to celebrate my third anniversary!

God bless you all,

Mick

Mick McKellar Update -- Day+738

Wow! It's been a long time since I last posted an update -- 92 days to be exact. During those 92 days, much water has passed below my bridge and much snow has fallen upon my path. I last wrote immediately after Thanksgiving, about the time I began to play with shovel and scoop, tottering about in our driveway and congratulating myself with moving a bit of snow. I called it "brinkmanship" and had great plans to push my limits throughout the winter months.

Start the New Year Right!

Well, I was hiding at home to avoid contact with all those nasty germs and viruses out there, when I decided it would be a good idea to attend Mass on Christmas Eve. A week later, on New Years Eve, I was in hospital with a respiratory infection. Three days later I was home, and three more days later, I was off the high-dose antibiotics and Prednisone...back on my usual schedule of medications. But something had changed...my capacity for tolerating cold air was diminished and even light effort had me gasping for air. I was back at square one.

Marian moves an overnight delivery.

I picked a bad time to become unavailable for snow shoveling and scooping. January was an incredibly snowy month (some reports showing we received 92 inches in our area). Marian had to clear the driveway most every day, and I could only watch from the warm wings...through the front door. Some days, she would be out there for more than two hours.

Another Bad Idea

So, what did I do? Well, on February 1, I decided to have a can of clam chowder for lunch. Guess what? I have discovered a newly acquired allergy...to shellfish (well, clams and calamari anyway)! An ambulance was called to take me to Aspirus Keweenaw hospital (because I could not walk), where I remained until released on February 3. As much as I like clam chowder, it is NOT worth that much pain.

While in hospital, they conducted an overnight oximetry test -- determining the oxygen level in my bloodstream while I sleep. No evidence of sleep apnea or a drop in my O2 levels was found.

Trip Cancelled

Our back door...adrift...

Marian and I were scheduled to leave for Rochester, MN on Tuesday, February 19th, for two days of biopsies, scans, blood tests, and more at Mayo Clinic. We didn't make it. We didn't try to leave. We were not driving 400 miles in blizzard conditions. Even if we had somehow managed to make it to Rochester in our 10-year-old Focus, we were scheduled to drive back on Friday, February 22nd -- when another blizzard rocked Minnesota and Wisconsin...all the way to the Upper Peninsula of Michigan. We made the right choice.

Anniversary

The reason for our preempted trip? The second anniversary of my brother's gift, the gift of life, my blood and marrow stem cell transplant on February 21, 2011. We celebrated quietly at home...thankful for two additional years of life. On May 26th, I will reach the third anniversary of my diagnosis with Philadelphia chromosome positive, chronic myelogenous leukemia. God's grace has surely been shining on me!

I still have blood tests every two weeks, and the results have continued to either improve or remain positive. While in hospital the last time, my white count and my absolute neutrophil count both spiked. It appears my immune system may have responded to the crisis.

We will attempt our trip again, this time immediately after Easter, on April 2nd. I have high hopes that the tests will show improvement.

Mostly a Hermit

Our deck, buried.

For now, I venture out, but only for short periods and under rather controlled circumstances. I avoid large gatherings, groups of children, and shaking hands. I haven't seen a movie in a theater in quite some time. I go to the hospital for tests, but very early, before there are crowds, and always have my mask...in case anyone sneezes or coughs. I have gone out to get medications and items I must obtain, but rarely and at odd hours, if possible. Finally, I do drive, but only when I am relatively certain I won't get stuck, because I could not shovel myself out of a snowbank or master enough oxygen to walk any distance for help.

I have not been walking outside because of the very cold air in February...cold air asthma is a painful reality for someone with only 26% lung capacity left.

However, life is good. I thank God every night for the giving me the day, and I ask for the gift of tomorrow. I wake each morning with gratitude in my heart for the great gift of one more day. I have discovered the precious present, and I am grateful for it. I am at peace with uncertainty, though I remain at bit paranoid by preference.

As the weather warms and improves, I hope to spend more time outside, walking when the roads and even some sidewalks reappear.

Thanks to everyone praying for us and sending us good thoughts and positive energy. God bless, and good night,

Mick

Mick McKellar Update -- Day +646

Just a little intrepid...

It was only about 3 inches of new snow, but by golly, I grabbed the old scoop and cleared all three inches out of my driveway this afternoon! I know I looked ridiculous, all covered up and wearing a mask part of the time, stopping to gasp for breath every five minutes or so, and tottering about like an antique automaton — but when a half hour or so had passed, the snow was moved.

It is such an odd sensation, when small movements carry incredible consequences for my oxygen reserve. A life-long asthmatic, I can sense immediately when my oxygen level decreases even slightly. I know the progression from weakness and tingling in my extremities, to an unexplainable ache in my core, to a loss of focus, and finally the encroaching darkness as I begin to lose consciousness.

So when I work or exercise, I push until I begin to feel the loss, then I pull back, slow down, or stop until the tingling and weakness go away. It is a game of brinksmanship with a huge downside, but it is a necessary game to help retain some muscle tone in my major muscles. It's dancing on the brink of an abyss filled with a vacuum — one misstep and I get to try living without air for awhile — or forever.

Silent Fear / Secret Agony

This is nothing more nor less than the silent fear, the secret agony that shreds through the nerves of every child with severe asthma. I know the pain and fear of being smothered or of drowning (from the inside out), because I have walked that road thousands of times in my life.

A Bit of History...

In the sixth grade, we were outside for calisthenics and exercise. A new teacher started us running the circuit of the school yard. I stopped and told him I was asthmatic and could not run with the others, especially in the fall when my hay fever was bad. In 1961, there were no medications for asthma one could take as a preventative. He didn't believe me and ordered me to run.

So run I did. To my credit, I made three full circuits of the yard before I passed out, plowing face-first into the dirt — scattering dust and gravel all over his highly-polished new shoes. I came to almost immediately — I usually do, because once I pass out, the muscles in the chest relax and the weight of the atmosphere forces air into my lungs.

Now, I work with 27% lung capacity and the remnants left by damage done by bronchial asthma over nearly 58 years of coughing, choking, and gasping for air. Amazing how life comes full circle, and it is the small things you remember.

Other than the lung thingy, I seem to be doing quite well. I remain thankful for your prayers and good thoughts.

God bless and good night,

Mick

Mick McKellar Update — Day +637

I have not written an update for awhile. Part of my reticence can be chalked up to fatigue. Each and every day is a gift, yet each and every day is a battle — fought with an enemy both unseen and inside. There is no tumor to scan, so that I might have an image at which to glare. There actually is no cancer (of which I am aware) to blame, as my Philadelphia chromosome positive, Chronic Myeloid Leukemia is in full remission — the blood tests cannot detect the fusion protein that causes the cancer. However, that does not mean it is gone...the tests may simply not be powerful enough to detect it. Therefore I take medication each day to block its return.

Flashback

My medical problems spring largely from the blood and marrow transplant. The tiny warriors, those red-neck Tennessee T-Cells I received from my brother, Kevin, saved my life by wiping out any stray cancer cells and still police my blood stream for enemies. Unfortunately for me, their enemies list have included: my skin, my liver, my kidneys, and now my lungs. Quick and effective action by the BMT team at Mayo Clinic and Rochester Methodist Hospital saved my skin (it was literally coming off), my liver (renal failure), and my kidneys. All this happened within the first 100 days after transplant.

The lung attacks began without warning or detectable symptoms early in 2012. By April, 2012 my lung capacity was down to about 70%. By June, it was down to 27%. It has remained near that level since. Any infection becomes critical. If I get the flu, I go to the hospital. 

Presently

Right now, I am fighting something that is causing severe coughing jags, but no fevers, etc. All my other numbers, for the white blood count, liver function, kidney function, hemoglobin, platelets, and neutrophils look very good.

My blood pressure appears to be under control (with medications) and my blood sugar usually behaves itself (no insulin needed). The peripheral neuropathy in my feet, legs, and hands appears to have stabilized. The cataract surgery by Dr. Leep on October 23 appears to be a resounding success. My vision is terrific for near and distance, but not up close (as is expected). The right eye healed nicely with no apparent problems. However, everything seems much brighter than before, making me grab for sunglasses much more often.

Chicken

Our trip was better than I expected. We saw only four deer on the trip, however, two of them played chicken with my little Focus...and both were big enough to take out our windshield. Oddly, as I was driving east on M 28, about five miles east of Bruce Crossing, a fellow in a black pickup was tailgating me something awful. I mumbled something to Marian about wishing I could slam on the brakes to teach him a lesson. Five seconds later, a very large doe ran in front of my car -- barely 20 feet ahead -- and I had to slam on my brakes to avoid possible collision. The fellow in back stayed well back for a minute or two until he sped past me in a fog of salt dust, engine smoke, and chagrin.

The remainder of this update continues on my other blog: out of my mind: The Jag

Thank you all for your prayers and good thoughts. 

God bless and good night,

Mick

Mick McKellar Update -- Day +613

A black patch would've been cool...

"Arrrrrh!"

OK, so I did say it plenty of times on Tuesday afternoon — at least, until about 4:00 PM, when the patch came off — by instructions from the doctor and the nurses. I was also instructed to rest for the afternoon and take it easy on Wednesday. Nobody had to remind me, as even cataract surgery appears to be an insult to the body, and mine did not like it much.

I snapped a blurry picture of my eye patch, but I could not tell it was blurry until today, because my vision was rather blurry — even in my good eye. Also, I tried to read some messages on screen and reply to a few, but staring at my monitor hurt my right eye and my vision was pretty bad for Tuesday afternoon and most of Wednesday — probably due to swelling from the surgery. This afternoon, my vision has improved dramatically, though my right eye vision is still a bit blurry. I am hoping it will continue to improve over the next few days. One lesson I learned in the last two years is that I heal much slower than when I was younger and before my CML/GvHD adventure.

Look Ma! Two eyes!

Colder World

My world has become a bit colder, whiter, bluer than before the surgery. One of the two cataracts removed from my right eye was an old fashioned yellow cataract and it added a warm, sepia-tone to my vision when using either just the right eye or both. The tint is gone, and colors are a bit crisper and colder than before.

With Marian's help, I take eye drops (an antibiotic/steroid combination and an NSAID drop) to help prevent infection, reduce swelling, and control pain. These may continue for up to three weeks. I'm just hoping my eyes will be good enough to drive when we have to make our next obligatory visit at Mayo Clinic on November 15. One would think that, with all the available communication technologies (video conferencing, teleconferencing, even Skype), capable physicians here could work with capable physicians there, and save not only the awful expense of moving our bodies 400 miles for tests and consultations that could be done here and via electronic communication, but could also remove the very real dangers of travel in our neck of the woods during the gales of November, the storms of December, and the deep freeze of January/February. However, these options are not offered — and how do you argue with the people who worked so hard to save your life?

My Mysterious Medical Status

Blood was drawn early this morning and tests were run at Portage Health. A nurse called me with the numbers, and they look pretty good. Considering I had surgery day before yesterday and have not done my "morning constitutional" for three days (it was raining too hard this morning), I was quite pleased with them. There is not much new to report, other than a few mysterious purple spots on my forearms, which seem to be responding to steroid creams. I still manage to get out of breath while washing dishes. I find this embarrassing, but have accepted it as part of my "new normal" — a normal that seems to change almost daily.

613

There's nothing special to me about the number 613, other than this is day 613 since my transplant. February 21, 2013 will mark my two year anniversary of the gift of life from my brother Kevin, but that day seems a long way ahead. Although some of my transplant contemporaries (and friends) have passed on in the last few months, it seems I have been touched by God and carried forward in His strong embrace. My emotional roller coaster ride — from sadness and fear to joy and gratitude — has been exciting, tiring, and a bit scary. Physical symptoms come and go so quickly, I hardly have time to notice before they depart, only to be replaced by a new cough, a new mark, or a new pain. One thing is certain: Life with GvHD is never boring.

Thanks to all who pray for us and send us your good thoughts and best wishes.

I will write more as my eyesight improves and I can spend more time staring at a computer monitor. Until then, God bless and good afternoon!

Mick

Mick McKellar Update — Day +595/596

The Eyes Have It

Some may have noticed that my updates and other writings have become sparse and sporadic. The vision in my right eye has degraded rapidly over the last few weeks — most noticeably in the last two weeks. A visit to my eye doctor confirmed my suspicions: It appears that I now have two cataracts in my right eye. The old, yellow, nuclear sclerotic cataract is still there...slowly growing and gently pushing my right-eyed world toward sepia-toned sunsets. However, there is a new player on board. A fast growing friend for Ol' Yeller called (I believe...my hearing isn't too good) a posterior subcapsular cataract — most likely a side-effect of my long and close association with steroid medication — probably Prednisone.

If all goes as planned, I am scheduled for cataract surgery on October 23, 2012. There will be some tests beforehand...to ascertain that I am up to the effort and that my already somewhat abused body will handle the additional insult. An eerily similar situation occurred in 2001, when what we called a "white cataract" appeared with the slow-growing and docile yellow cataract in my left eye. It grew very quickly and caused numerous and dangerous problems with my eyesight. The doctor I saw Friday is the same doctor who removed the cataracts from my left eye eleven years ago. The vision in my left eye is still 20/20 and there have been no discernible problems or complications following that surgery. I am holding onto hope and praying for another success.

But, Can He Drive?

That question haunts me now. Even if the surgery goes well, and no additional treatments are needed, it will likely be at least four weeks before I will have new glasses — hopefully for reading and close work. The zinger in the Zeitgeist is another trip to Rochester, currently scheduled for November 14-16, 2012. Nine-hour drives on some rather lonely roads in potentially hostile weather conditions rides rather low on my list of Tolerable To-Do's. There's always a chance, with a bit of luck and a wink of God's eye, that we will find some decent weather in mid-November, but "the gales of November" are real and those Alberta Clippers sail through all winter long.

I'm also hoping that, with proper paste-ups and mechanicals...and the old snow tires back on the front...our 10-year old Focus will once again handle what mother nature and Lake Superior deign to send our way. It is a long and tiring drive in good weather, with lots of daylight. When the days grow short and Heikki Lunta grows restive, the drive may become reminiscent of an episode of Ice Road Truckers.

One can feel detached from the rest of the world up here, but seldom do I feel as alone as when plowing through blowing and drifting snow in the dark on M-26/US-45/M-28, en route to Ironwood and beyond. For most of that trip, I can't get a single bar on my old Tracfone. At one time, being "out there and out of touch" was a rush, and I really enjoyed testing my driving abilities against winter's worst. Now, tottering about in the white wilderness on those wacky and wonderfully slick winter roads can seem a bit extreme without sufficient cause.

The Numbers Game

My blood test numbers are all stable and look very good. My lung function numbers seem to be at a plateau and do not vary. My blood glucose numbers remain at or below 100, with a rare venture up to 103. My blood pressure, higher since we switched from the medication that caused a persistent dry cough, still remains in a comfort zone.

Still Intrepid, After All...

With few exceptions, I still walk my walk -- .75 miles each morning and more, when possible. A couple of days ago,  however, I was afraid the kids at their bus stop would shove a carrot up my nose and call me Frosty -- so plastered with wet snow from a lake effect squall was I. The early morning walks will grow more interesting as they grow darker and more slippery.

It remains for me to discover how well (and how slowly) I can participate in snow removal. Last winter, I found snow scooping a reliable resource for constant and aerobic exercise. Of course, I am willing to wait a couple of months to do the research...

I started this as an update for day +595 and I am finishing it as an update for day +596. It took four sessions to complete because my eyes get so tired trying to focus on the screen.

Now I need to get some sleep. I have an EKG scheduled for tomorrow. Thanks to you all for your prayers and good thoughts.

God bless and good night,

Mick

Mick McKellar Update -- Day +581

Bouncing

I hit the floor in the kitchen tonight...and I hit it hard. My right foot tangled in the cord from my headset on my computer, and tripped me up on my way into the kitchen. I stumbled forward, carrying a china dish and coffee cup. Somehow, I managed not to break either one, but landed on my left knee and left side — with my elbow tucked in close to help absorb the shock and stop my face from plowing into the vinyl flooring. I think I bounced at least once.

Normally, I would tuck and roll when falling forward, but there is so much breakable stuff in the kitchen and I didn't know where to tuck the coffee mug and plate. Because of the neuropathy in my feet and legs, I toppled like a hopping tree.

It seems, however, that the extraordinary density of my bones saved me once again, despite months of treatments with steroids and medications that tend to weaken them. My left knee works, although it hurts like the dickens. The left side of my chest is sore to the touch and it hurts some when I breathe, but there seems to be no bruising or discoloration. I'm hoping a pair of extra-strength acetaminophen tablets will permit some healing sleep tonight. Perhaps the light of morning will lend insight and help me judge the extent of my injury.

My condition, listed as CML, may now be defined as Clumsy Man (with) Leukemia.

God bless and good night,

Mick