Mick McKellar Update--Day +112

Coming home is great. Getting things organized after a four and a half month absence is not so great. I spent much of today on the phone with the folks at Mayo Clinic and with the mail order prescription company, as they worked out getting my necessary medications to me before my dwindling supply runs out. This was not an easy task, but I think they worked it out.

I also dropped off my medical records and treatment plan at my local doctor's office, so they can set up blood testing, etc. They were surprised and happy to see me again. It feels good to be recognized and remembered by folks who smile when they see you. It feels like home.

Going green, personally...

Learning to live with restrictions and limitations in my old environment takes considerable energy and concentration. Occasionally, I make mistakes because I revert to the old way, usually the wrong way, of doing something. Carelessness and lack of concentration can lead to a protracted hospital stay or worse. Climbing stairs is no longer a simple aggravation, it is real work and takes considerable starch out of my sails. So, now I must plan my trips to the second floor to preserve and conserve my energy.

One of the more difficult restrictions involves limits on sun exposure. The Keweenaw is not known for its many sunny days each year, and I have a tendency to go outside to enjoy the sunshine. Both my rash and my medications put a severe limit on sun exposure. Sunscreen helps but the recommendation is simply to avoid both natural and artificial sunlight. Images of living in a cave come to mind; so much so that I wrote a poem about avoiding the sun and maybe becoming so pale I just disappear...

The poem, Etiolated, appears on my poetry blog, Out of My Mind, and takes a light-hearted look at fading away, away from the sun.

It has finally gone dark outside and my brain is telling me that I should go find my bed and sleep in it. I am inclined to agree. Thanks to you all for your welcome home messages and greetings both in person and on the phone. The intrepid travelers are glad to be back and still have much to do, to get back into our lives at home. I may even get some time to walk this week!

God bless and good night,

Mick

Mick McKellar Update--Day--111

I spent a great part of today being welcomed home by members of our community. I cannot easily describe the feeling. After such a long and potentially permanent absence, coming home is the warm touch of summer sun on winter's heart.

"You look good..."

I may even come to believe it. It is a welcome sound to a soul still on a journey from darkness to light, one day at a time.

Leukemia hides inside and steals away the unmistakable glow of my life. It weathers away the lightning in my bottle and steals the thunder in my soul. Passions, desires, even hungers whither away, leaving only the taste of ashes. Chemical cocktails capable of eating a hole through the floor of my hospital room burn through my veins, destined to destroy part of me, scorched earth to slow my secret enemy, my invisible demon of death. It is a hidden battle, a secret war, whose devastation only slowly leaves its mark on my crumbling countenance. Eventually, my vessel is so damaged, I consider abandoning ship. It would be so easy just to fall asleep...

Love of life, love of family, loving prayers and the good will of friends, fanned the embers of my will and warmed the smallest kernel of faith -- light and heat to make it grow, to make it glow and give lie to the descending darkness. Through the gift of life from a loving brother and God's gift of each day's dawn, a willingness to fight on is born. Through the art and science of medicine, the ravages of that war are controlled, and healing begins. Through the long hours of self-doubt and silent fear, the loving presence of my caregiver is both anchor and redoubt.

The hard scrabble climb from the precipice to each plateau taxes my body and tires my spirit. Chemical crutches support my wounded body until my spirit heals, and the glow from within is visible again, and my friends and family say, "You look good."

I know it was hard to see, behind my mask, but each time I heard it, I smiled. Despite the drudgery of protocols, the paranoia implicit in each and every restriction, and the incredible mixture of medicines, it is good to be alive and even better to be alive at home.

I am a thankful man. I am a lucky man. And yes, I look good, thank you.

Thank you for your prayers and good thoughts, your welcome home, and your patient presence on my journey.

God bless and good night,

Mick

Mick McKellar Update -- Day +110

The intrepid walkers have spent most of the day walking up and down stairs and back and forth, unpacking the huge amount of materials we brought back from Rochester Minnesota. It is amazing how much you can accumulate in five short months. It is great to be home, despite the cool weather, and the occasional raindrops.

Friends have been calling and wishing us well, letting us know that they're glad we're home. I have a lot of work to do, mostly setting up connections between my local oncologist and the specialists at Mayo Clinic, so that the proper blood tests are done here and the information shared back there. I've also been struggling with getting my prescriptions set up through a mail order company. They're holding up some of my more important medications, because their systems indicate potential drug interactions -- all of which my doctors have approved, despite the potential interactions.

The problem isn't that they checked it out, but that they are holding up delivering the prescriptions until after I will probably run out of my local supply. I cannot get more locally, because the order has already been processed by the mail order company. Life's little complexities can be a bother.

Our trip home was prayerful and nervous. The day before we left, I discovered two tires, one rear summer tire and one front snow tire, were nearly flat. I limped the car over to a service center and put air in both tires. They (and we) made it home without incident. The car was packed to the roof. We definetly need to learn to travel lighter.

The day was a bit drippy from time to time, but largely we had dry roads, light traffic, and over-cast skies...good driving weather. I drove to Ashland, WI and Marian drove the rest of the way home.

The stress of the trip (and dealing with insurance and mail order pharmacy hassles) has not caused any detrimental effects on my condition. Being home is just too great a feeling I guess. I hope to have more time to write after we settle back into both the house and my routines/protocols to stay healthy and uninfected.

Thanks for all the prayers, good thoughts, e-mails, and calls. It is great to be home again.

God bless and good night.

Mick

Mick McKellar Update--Day +107

The intrepid packers spent most of the day pre-packing for Friday's journey home. Of course, we won't know for certain that we can leave on Friday until tomorrow afternoon, but there are too many papers, files, odds and ends, etc. to organize in one night. The only walking I did today was back and forth in our room, and up and down the stairs.

The weather here was more seasonal today, and only reached 90 degrees. Tomorrow's high is predicted to be 67 degrees. Cool.

My medical symptoms are stable and nothing untoward has occurred, so I am praying that tomorrow's numbers will free us to head back to Laurium on Friday morning. I plan to get some rest tonight and go to bed early, so we can get up a 5:00 AM to walk to Charlton Lab A when it opens at 6:00 AM, and so the results will be available to my doctors at consultation time.

The shadows are already long at my window, and I have more to pre-pack for the trip. I looked over the wonderful collection of cards, letters, photos, and postcards from all of you over the last five months. It was hard to just pack them for the crossing. I was tempted to re-read each one. Thank you all for your communications. Thank you for your prayers and good thoughts.

God bless and good night,

Mick 

Mick McKellar Update--Day +106

Intrepid Walker (in the shade)

The intrepid walkers did venture out into the glass and steel canyons of the city -- early in the day, before the temperature topped 90 degrees. I sat in a small shaded alcove downtown, complete with fountain, trees, flowers, and a very comfortable bench, while Marian took care of some business. Even so, by the time we walked back, the heat was approaching brutal levels in the direct sunlight. The high today in Rochester was 99 degrees. At 7:21 PM, it is still 94 degrees. This is not good weather for a Copper Country conditioned Yooper.

Walking off a gut ache

I insisted on going along for the walk today, because apparently my morning medications decided to have a war with whatever was still in my stomach. About 20 minutes after taking the first round of meds, my stomach began to ache as though I had taken a sucker-punch to the abdomen. Copious amounts of ice water seemed to help, but my experience has shown that a little stretch of the legs can help "move things along" in the digestive tract. The walk helped a great deal, but my stomach has remained a bit sensitive all day long. Just to be sure, I had to resort to tomato soup for supper, the primary comfort food from my youth.

We are both praying that a good night's sleep will reboot my digestion. If I wake up tomorrow and the medications re-enact today's morality play with my innards, I will have to report to the hospital. That would not be a good thing for those who wish to leave on Friday. All we need is another mystery to solve.

Steel and Glass Canyon

Mail order, shmail order...

We converted 10 of my medications to be delivered from a mail order pharmacy that BCBSM likes. I called today because their online system would not accept my identifying information (I was checking the progress on my prescriptions). Five will ship June 9, barely in time to replace diminishing supplies. Five are being held up because of a systems generated warning about a drug interaction. They want my doctor to call and explain. Meanwhile, I may run out of some very important maintenance drugs before they can ship replacements. I cannot get insurance to cover refills at the local pharmacy, because the mail order pharmacy has filled them...it is just holding on to them. Ah, the price of convenience can be high.

Sad to say, I did not write a poem today.

Assuming my stomach is back online, tomorrow starts stage one packing for the trip home. Sorting, boxing, washing, bagging, and organizing as much as possible. Thursday will be an entire day of tests and procedures, so we'll be just about able to finish that night, and leave Friday. We have been residents in this space since January 27 and there is a lot to organize. It is amazing how many nooks and crannies must be emptied and decisions made about what to take and what to leave behind. And the Focus remains a small car...a very small car.

I hope I shall have time to draft journal entries tomorrow and Thursday, but time pressures may prevent it. Friday, if we are traveling will be journal-less for certain.

Thanks for your prayers and good thoughts.

God bless and good night

Mick

Mick McKellar Update--Day +105

After breakfast, the intrepid walkers braved morning temperatures already in the mid eighties. Our destination, as is so often the case, was the world's slowest pharmacy. My relentless use of the steroid cream for my rash necessitated a refill. The sun beats brutally on glass, metal, and concrete, a desert of surfaces reflecting its bright heat on those passing through the canyons of Rochester. We paused at several of the oases created and maintained by the city or one of the foundations associated with Mayo Clinic. Patches of grass and trees provide relief from the heat by providing shade, grass, and flowering plants. Fountains spray water into the air, creating small bubbles of cooler humidity.

I found the shade most helpful, as the sunlight sought to defeat my sunscreen by simply melting it off my arms and legs. As I write, the outside temperature is at 95 degrees with a heat index of 101 degrees. Little wonder I am indoors and enjoying some air conditioning at the moment. At Badger Ridge, just outside Rochester, they are reporting a temperature of 109.2 degrees F, with a heat index of 120! US Weather service has issued a Heat Advisory for our area. Ya think? And it's 7:00 PM! As a well-seasoned and conditioned Yooper, I am not prepared for this kind of heat. 

Our little walk through the oven did not seem to aggravate my rash at all, so I guess the sunscreen did its job. There have not been any new or unusual symptoms so far this week, so we're hoping for good test numbers on Thursday and a release to head home on Friday. One thing is for certain, I have no difficulty drinking many glasses of ice water on days like this one. 

Preparing for more change

Going home is exciting and I can't wait to get back, yet I feel more than a twinge of sadness at leaving our temporary residence at Gift of Life Transplant House. When we first arrived here, and all was new and mixed up with hospital visits, chemotherapy, and daily infusions of various chemicals, the house was only a place to rest and cope with all the massive changes taking place inside my body. I barely noticed the surroundings much of the time, as my body was busy trying to recover from an insult greater than that caused by open-heart surgery. So much was damaged. So much was changed. So much to do. Little wonder I was barely along for the ride.

After the side effects of the chemotherapy passed, and the sudden setback with the GVHD attacks, life settled down to learning to cope with a changed me, and sharing those changes with other residents of the transplant house. New friendships have been born with folks who understand the challenges, because they have experienced them, are experiencing them, or soon will experience them. At 105 days out, new BMT patients ask me a lot of tough questions and I do my best to share my experience, but always with the caveat that each BMT is unique in its own way. The transition from frightened newbie to seasoned veteran was swift and a bit terrifying. Kind of like raising children -- they always ask the one question you feel least qualified to answer. 

Gift of Life has become a second home, and to be honest there are many things I will miss. But there truly is no place like home. Writing this journal and receiving your cards, letters, e-mails, and calls has kept home alive in my mind and assuaged my homesickness. 


Going home requires a massive re-thinking of how we function. I must continue my protocols and still have to avoid so many things I enjoy. For example, I cannot garden because I am not supposed to interact with soil. House plants are forbidden. Pets are out of the question. No swimming in pools or lakes for at least a year. The list goes on and on -- all designed to protect me from accidental infection or exposure to toxins that a normal person shrugs off every day. For me they can be fatal. 

I will still be taking nearly 16 different medications and supplements each day and going for blood tests at least once a week. In a month, we have to come back to Mayo Clinic for the first of many check ups. Life has become complex and confusing, not to mention expensive. So much so, that I have spent hours (usually when I should be sleeping) mulling over whether or not my continued existence is worth it all. I think every patient of long-term, expensive, and disruptive care has chewed on that old bone. God and I have talked about it extensively...well, I do most of the talking and He just keeps on giving me the gift of more days. I figure that, as long as He is willing to provide the days and means, I should be willing to endure and even grow a bit. 

Ruins of a life?

There is life in these old ruins. In many places where ancient buildings have collapsed because of ravages of time or devastation of war, folks have taken the bits and pieces, blocks and bricks and built new buildings from them. I guess I fit into that category, at least peripherally. What I am is not what I was, and there is new life in these old ruins. 

I wrote a poem today about the endurance of ancient structures and the Gray Majesty of their ruins. I posted it to my poetry blog: Out of My Mind.

Well, long shadows are tracing patterns on my wall and the sun is about done baking us for today. Twilight will soon bring some relief from the heat and the cool night will soon follow. I thank you all for your prayers and good thoughts, the source of hope for us and the true power behind my recovery. We hope to see many of you in person soon (or at least, write these journal entries on a full size keyboard). 

God bless and good night,

Mick  

Mick McKellar Update--Day +104

Intrepid Walker

The intrepid walkers shuffled off to HyVee this morning for to gather some necessaries. It was very warm this morning, and by early afternoon, temperatures ranged around 85 degrees. The sky was cloudless, with a hint of humidity haze near the horizons. Small breezes stirred the air, but that's about all.

At the rate I've been using sunscreen, I think we should have bought the large, economy size...just kidding...it's Vanicream Sunscreen and there is no economy size. Thank heavens it is a few pennies cheaper at WalMart.

I plan on living forever...so far, so good!

My medical condition seems stable, as far as we can tell. Tests will not be done until Thursday morning, so we watch the rash, wash the rash, wipe creams on the rash, and watch it some more. Because my blood glucose readings have been below 100 for two days, we are reducing my insulin injections from 20 units to 18 units, once per day. The change is most likely due to the doctor's reduction of my prednisone from10mg to 5mg daily.

Because of the heat, I decided to stay indoors and spend my afternoon writing. As I drifted near the point where I might just doze off as I did before, it dawned on me to talk about my dreams. But what dreams should I share?

Without the hammer...

I was thinking back a month or two this afternoon, to the time I was receiving higher doses of steroids and had to take what I called "the hammer" to get to sleep at night. Benadryl, lorazepam, and Ambien were the three parts of the hammer that let me finally fall asleep. The most interesting part of those nights were the dreams. It appears that Ambien (at least for me) brought the most outlandish, strange, and vivid dreams I have ever experienced. They were in Technicolor and surround sound. Of course, they were in 3-D...without the paper glasses.

Several were epic dreams...stories wherein I was the hero and won the day over enormous odds, usually by the use of secret knowledge and by tapping great power. One such dream was so vivid and memorable, I was able to tell it in a poem, called Epic Dream, which I have posted to my poetry blog, Out of My Mind.

I pray the dark shadowy hounds of my dream never visit your dreams. I thank you for your communications, your prayers, and your good thoughts. I wish you sweet dreams all the nights of your life.

God bless and good night,

Mick