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

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

Mick McKellar Update--Day +123

Intrepid walker in downtown Laurium

The intrepid walker has not been doing very much walking of late. The weather simply has not been cooperative, and I really don't want to take any chances in cold and rainy weather. However, the rain stopped this afternoon and it warmed up a bit, so Marian and I walked to the Laurium Post Office and back...to mail a letter, of course. It felt good to be "out and about" again. The walk went well (nearly two miles around) and I only had to stop and rest once.

As always, I hope to be out there regularly, wandering around on the sidewalk (where there are sidewalks) and down the side of the road.

Mostly good numbers

Yesterday was blood test day, and I went to Portage Health to visit the lab. It was interesting to discover that my weekly blood tests had not been ordered. The nurse, however, was aware of my situation and they did the blood tests anyway. I'm supposed to do these tests every week and I bring in a kit to send blood samples to Mayo Clinic. I also find it very interesting to have blood tests done by poking holes in my arm again. During the months in which I had the Hickman catheter, they simply linked up to the end of my catheter, and drew the blood from there. Now, they have to find a vein -- and have been doing a very good job of it.

The test results were generally good, although my hemoglobin level decreased from 9.9 to 9.1. It appears the hemolysis continues. The other numbers were all up or down, and some were even in the normal range. Perhaps most important, my bilirubin was at 1.0 and my creatinen was at 1.4. Those are very good numbers. They have not yet determined what is causing my anemia.

The best numbers

When they reduced my insulin injections to 10 units per day, the expectation was that my blood glucose would soar -- or at least rise. It did not. In fact, my evening reading (just before our evening meal) came it at 79...too low. Even before that extremely low reading, my diabetes coordinator at Mayo Clinic decided we would try the weekend without insulin injections, and see what happens. Hope is renewed that this episode of steroid-induced diabetes is over (or will be over soon).

"Only change is certain..."

Socrates was right. Nothing in my life has remained unchanged by my illness. Even the way things taste and smell are different. My hearing and my eyesight have worsened. My eyes were affected by the leukemia, but I don't know why my hearing has diminished. My energy level fluctuates, sometimes minute-by-minute. I won't go into all the details, but I can safely say that my body simply doesn't operate the way it did before and the changes continue.

The way I relate to others and the way they relate to me has changed. Some changes are subtle and others are not. For example, we were walking down Isle Royale Street this afternoon (on our journey to the post office) and we passed a yard with five children...all very blond and apparently ranging from about age three to age five...playing outside. They all stopped dead in their tracks at the same moment -- when they caught sight of ol' Darth Mick (mask, dark glasses. floppy hat) walking by. For what must have been more than a minute they just stopped and stared, no movement, no noise, and frozen like little statues.

Finally, one little girl called out to Marian: "Why does he wear a mask?" It's one of the reasons I love watching kids. They unabashedly focus on what interests them and then they ask the obvious questions. Adults seem to peek out of the corner of their eyes or look away when I look at them. Too embarrassed to ask, or too frightened to inquire, they walk away wondering, "Why is that guy wearing a mask?"

I will be wearing the mask for a long time -- at least until my immune system is functional and I am once again immunized. No, I don't wear it at home, unless we're vacuuming or dusting or if we have visitors who might be ill. The worst is that I have to wear the mask when my grandkids are around. They are wonderful little guys, but they are also germ machines.

Another change happens when I meet friends and family. They want to shake my hand and I generally withdraw to avoid touching others. I find it less embarrassing than taking out my bottle of hand sanitizer after shaking hands. Most folks are just confused about what to do. I try to diffuse the situation with a knuckle bump, but that doesn't always work. Social situations can get complicated when you wear a surgical mask...

The sun hasn't set yet, but the shadows are growing longer and twilight approaches. I thank you all for your communications, prayers, and good thoughts.

God bless and good night,

Mick

Mick McKellar Update--Day +121

We just returned from the fourth and final night of a four-day "mission" at Sacred Heart Church. Called The Healing Presence of the Holy Spirit Mission, it included a "hands-on" healing session on the last two nights. Of course, I took advantage of the opportunity. I'm willing to open as many gates, doors, and windows as possible to let God's healing power into my life. It was a rewarding and comforting experience. It also kept me from a couple of my usual writing sessions, hence the sporadic journal updates this week.

Ah, Thursday...

Tomorrow morning is blood test morning again. I go to Portage Health and have blood samples drawn in the lab. Some go to Mayo Clinic in a "kit" I received from the clinic and other tests are done on-site. Last week, my numbers looked good. I'm hoping that this week, they look even better. I continue with my protocols and safety procedures, medications and supplements, glucose testing and insulin shots.

My blood sugar has been consistently low for the past week or two, so they reduced my insulin injection to 10 units in the morning. Today's readings were still below 100, and remains a bit low. I think it might be because my doctor reduced my prednisone dosage from 5MG daily to 2.5MG daily.

Splitting

I have only 5MG prednisone tablets, so I have use a pill splitter to cut the pills in half. They are so tiny already that it is not working out so well. I end up with a half a tablet and some shattered fragments. Today, I took the shattered fragments. Tomorrow I take the half a tablet. I'm hoping it will work out.

Non-walker?

This rain has kept me indoors as much as the very sunny days kept me inside. I actually like walking in the rain, but not when the temperatures are at 50 degrees and the winds are gusting to 15-20 MPH. An umbrella does no good at all, unless simulated para-sailing is what you have in mind. I cannot risk catching a chill.

However, I have kept up some exercise. Ours in a old house, and although all the bedrooms are on the second floor, the bathroom is on the first floor. This means I must walk down and up the stairs with each nature call in the wee hours of the morning. So, I still get some stair climbing exercise each day. I also walked a mile yesterday...home from dropping off our car to get some new tires put on it. We must go back to Rochester on July 6, and I do not want to travel with snow tires on the front wheels and bald all-weather radials on the back.

The intrepid walkers will be back on the street (or sidewalks, where they exist) for regular walks very soon. We have begun to settle back in to our lives here at home, and it feels wonderful. Even better is finally remembering where things go and where I put them.

As always, I thank you all for the wonderful "welcome back" greetings and messages. Your prayers and good thoughts for us are strength and hope in the dark hours, when frustration and uncertainty threaten. Thank you all.

God bless and good night,

Mick

Mick McKellar Update--Day +119

The wasp in the shoe and other tragedies of married life...

Marian slipped on one of her shoes this morning and discovered that it was occupied, by a bad-tempered and aggressive wasp. How it got there is uncertain. Why it stayed there is even more confusing (usually, they bang around the windows, trying to fly outside). It stung her on the side of her foot and then apparently crawled away to die under the sofa on our front porch. At least that is where the corpse of the little monster was later discovered.

Needless to say, I have been checking out my shoes and slippers, to discover any unwanted residents and evict them with less chance of a personal attack. The problem: I don't know how I would respond to a sting. I have been swarmed several times by wasps and received multiple stings, which made me a trifle sick at the time. Now that my immune system is compromised at best, who knows what a little wasp venom might do? I have no desire to find out.

Fade to Black (another poem)

Dark hours / dark days

Responding to life's little (and some not so little) challenges is an uneven task. There are good days and some darker, not so good days...days when the weight of the challenges mass heavier on my shoulders than others, and when the shadows eclipse my heart. Living a day at a time helps, but does not guarantee sweetness and light. I joked with Marian several times about my left leg being depressed (because she discovered a slight depression in the skin once). However, there is a kernel of truth in this pile of corn.

Many years ago, a sudden change -- stopping a selective serotonin re-uptake inhibitor, cold turkey -- triggered a bout of clinical depression of chemical origin. I know what it feels like to be depressed, to crawl about in the darkest shadows at the bottom of the deepest abyss. I know what it feels like to live the Prozac dream, when living is like swimming in Jello -- you go nowhere, and you don't really care. It took me six months to crawl out of that pit, and I swore I would never fall in there again.

These intermittent dark hours and dark days are nothing like that experience. The sadness and sense of loss may be more intense, but there is always hope -- it might be treading water in the dark blue pools and splashing through dark puddles of ennui -- but hope is there, to banish the despair and drive the gloom away.

3 F's to the rescue

I depend on the three F's to activate hope and pull me out of those puddles and pools. Friends form a network and their prayers are powerful, their communications are wonderful, and their support invaluable. Family is the foundation for my life and provides not only support, but a reason to fight on. Faith is the bedrock on which it all rests. God grants me the gift of each new day and illuminates the dark places where I must walk.

Wasp on the Ceiling

When I tried to explain the effects of these dark hours and days on my life, it reminded me of the wasp that stung Marian and now I used to hate having a wasp crawling about on the ceiling. I could not take my eyes off the little creature until it was outside or flattened by a swatter. So, I wrote a poem about the dark days called Wasp on the Ceiling and posted it to my poetry blog: Out of my Mind.

Thanks to everyone for their wonderful responses to my earlier postings and the continued support, prayers, good thoughts, and communications that light my dark days.

God bless and good night,

Mick

Mick McKellar Update--Day +118

Me (back), my brother and donor,
Kevin, and my dad, just before he died.

Yesterday was one of those days when things just sort of get away from you. By the time I could get around to writing a journal entry, it was just too late and I was too tired to do it. I spent part of yesterday digging around in my digital photo files, looking for images of my father. As seems to always happen when digging around in old albums, I lost track of time. One could normally forgive this, except the same thing happened to me the day before.

Father's day

It's Father's Day, so naturally it is 50 degrees and raining outside. Not that I would be out sunning myself, but I had to turn on the heat again. All those days in southern Minnesota, running air conditioning to counter the 80-99 degree heat, and I forgot how chilly Copper Country springs can be. Chilly never used to be a problem for me, as I seemed impervious to cold weather. Since the transplant, my tolerance of cold weather has been significantly reduced.

I'm wishing a happy Father's Day to all the fathers I know. My children have all contacted me to wish me happy Father's Day, and that truly does make me happy. I think what fathers most want on Father's Day, is to be remembered and appreciated by their family. I was thinking back to days with my dad, and how he would "officially" brush off Father's Day as though it did not matter. However, he would mope around until all the kids had called to wish him a happy day.

Grumpy

He was an M.P.

We rarely called him dad or grandpa, he was nearly always known as "Grumpy." This, of course, was not without cause. He was the prototypical stern and stoic, "auld Scotsman" of literature and media. I remember him telling me (on more than one occasion): "There are three ways to do something -- the right way, the wrong way, and my way. In my house, you do it my way." When I was eighteen, having reached the age when I already knew everything, I did the only thing I could do...I moved out.

Prior to moving out, my dad and I often had "discussions." These discussions usually involved voices locked into a constant crescendo and opposing points of view on most issues. More than a few of these epic debates would run for hours, from early evening until the wee hours of the morning, when my mother would threaten us both with excommunication from the family, if we did not quit for the night.

My mom, me, and my dad.

An odd thing happened though: As I grew older, my dad grew smarter. His advice made more sense when I had children of my own to raise. There was mutual respect between us, but we were never "buddies." I remember him rough-housing with my younger brothers, but I have no memories of physical contact with him, other than the times I was disciplined. Our relationship was different than his relationship with my brothers and my sister -- less physical, yet more confrontational.

Six years after his death, I still miss him. I miss his gruff manor, his rough sense of humor, even his always ready opinions on just about everything. He taught me the values of reliability and veracity, independence and hard work, and the responsibility to provide for my own family. He taught me how to stand my ground and fight for what I believe is right, that endurance is more important than endearment, and to always maintain a certain level of indifference to authority. At his knee, I learned not to be intimidated and never accept being patronized.

We all miss you, Grumpy...

Although I was busy missing the old bear today, I was also enjoying some time with my older son, his wife, and two of my grandsons -- at a safe distance of course, and wearing my surgical mask. All in all, I had a very nice Father's Day.

I've added some images of my dad to this blog, in his honor. I wish all dads reading this a happy Father's Day and thank you all for your kind communications.

God bless and good night,

Mick

Mick McKellar Update--Day +116

Intrepid walker, at home...

The intrepid walkers actually walked today. Marian had a meeting, so I walked with her to Sacred Heart Church (one mile) and then I returned by way of the Laurium Post Office (between 1.25 and 1.5 miles). We used to walk that far when we were in Rochester, but it's the first time I've walked any distance since we returned home. Of course, there are no shade trees for most of the route, so I had to depend on sunscreen to protect my arms and my neck.

The temperature was in the low seventies, and only the constant barrage of sunlight made it rather warm for walking. By the time I returned home, my batteries were pretty much on low, but it felt great to put a couple of miles under my belt. The walk was a great experience, despite the fact that I had two breathe through a pillow -- i.e., a surgical mask, for the entire round trip. I might not have had to wear the mask all of the time, but it seemed everybody was doing construction, mowing their lawns, or some other dusty kind of work in their yards.

Repeat

This evening, we walked to a friend's house down the block, and then on the way home we walked around the block -- just a nice stretch of the legs before turning in for the evening. The weather could not be more cooperative, so naturally that will have to change in the next day or two.

Mind numbing…

Today's major task involved going through paperwork from the last four months, looking for any unpaid bills or unanswered information requests. We were trying to handle the medical billing by remote, that is having my daughter send the important bills to us in Rochester and collect other mail until we returned home. Now I'm plowing through 4 1/2 months of old mail, junk mail, and magazines -- looking for anything important. With my foreshortened attention span, and lack of focus, this is going to take a while…

My dad, a long time ago...

Obviously, I could only stay at it for awhile, so I took a break to review some of my old digital photographs, primarily looking for photographs of my late father. With Father's Day coming, I want some photos to accompany my blog posting. As usually happens, I got involved in looking at photographs and the time just flew by. It's just like digging out an old photo album. You get involved in looking at the old pictures and you start thinking about the old days. Stories come to mind, and the next thing you know you're on a long walk down memory lane.

Our memory lane includes communications from all of you, including the cards, letters, e-mails, phone calls, and other messages received while we were in Rochester and since we have been home. I've collected all of them, and we'll be putting them in a memory book, so we can take time to reflect on how much they helped us during our sojourn at Mayo Clinic.

Thank you all for your communications. Thank you all for your prayers and good thoughts.

God bless and good night,

Mick

Mick McKellar Update--Day +115

Today started early. I drove my daughter to work and then down to Portage Health for lab tests. I go early for several reasons. First, I fast from about 7:00 PM the night before. Second, I cannot do my blood glucose reading and insulin injection until after the blood draws (which also means no breakfast, etc. until after that). Third, they draw blood to determine the therapeutic level of cyclosporin in my system. That means the test must be done about 12 hours after the last dose and before the current morning dose.  I also learned that you do testing early, if you want to hear from the doctors that day.

Some of the testing is local, but two vials travel to Rochester MN for CMV testing and cyclosporin level testing. I bring a "kit" with me, a box and packaging, vials, etc. sent by Mayo Clinic to me, with instructions for the lab. They send it back to Mayo Clinic.

Good numbers so far...

Nurses from both my local doctor's office and from the transplant center in Rochester called to tell me that the numbers look good. My hemoglobin actually went up, not to normal, but better than last week. My platelets are at 171,000, well into the normal range. My bilirubin is 1.2 (better than last week), and my creatinen is 1.7 (not good, but better than last week). Good Copper Country water may be helping there. This is all positive. However, the report card will come from my doctor in Rochester, and I'll have to wait for that until after the kit is received and further testing done. I'm hoping the numbers are good enough to reduce even further the amount of prednisone I must take each day. Once off the steroids, I'm hoping to get off the insulin injections.

Archiving

I finished copying the last of the journal entries Day 0 through Day +99 to the archive site. As soon as I have the lead-in text and details done, I will link it to the blog as I did with my poetry site. The archive site is organized by day number and is searchable. If you would like to look around before it is finished, the URL is: https://sites.google.com/a/mmnetwork.info/99-days-plus/home

I have enjoyed the marvelous tedium of working on the archive site, because it makes me feel useful,  and gives me a sense of accomplishment outside the realm of simply surviving from day to day.

Simply surviving...

The struggle with leukemia and with the side effects of the transplant tax my energy and sap my strength. Fighting with Graft vs. Host Disease (GVHD) is an ongoing fact of my life, demanding attention to details and constant watchfulness. Is it paranoia if something really is out to get you? It would be perilous to ignore the protocols, and just plain dumb to break the rules. They keep me alive. The medications I complain about also help keep me alive. God's will grants each new day and allows me to fight along with these tools and the aid of the medical professionals who guide and prescribe.

Although I understand the necessary focus on fighting to survive, I cannot help feeling selfish and self-absorbed. Writers generally maintain a healthy dose of arrogance. You need confidence in yourself and your work to willingly share it with others. However, this goes way beyond that level of self-involvement, drawing on the energy, good will, and resources of both family and friends in ways, and to levels I never thought possible. I have never felt so vulnerable. I have never felt so needy and greedy at the same time.

I have also never felt so loved and cared for. It is humbling and exhilarating at the same time, to have so many praying for my welfare and continued existence. I have never felt so welcome at home. Thank you all.

God bless and good night,

Mick

Mick McKellar Update--Day +114

Well, I planned to get some early exercise pushing my lawn mower about the yard, after we (my son and grandson were helping) spent some time last weekend getting it to run. However, the dependable little mower that has started every year for more than 30 years (usually on the first pull) won't start again. I wore out my energy reserves just yanking on the starter cord. Time for a bit more maintenance...

Testing starts...finally...

I was finally able to make arrangements to begin my blood testing locally, with results sent to my doctor at Mayo Clinic. The tests will be done tomorrow morning. I just feel more comfortable with recent and accurate test results in the hands of my doctors, so they can direct my use of medications and let me know if there are unseen (and usually un-felt) problems.

So far, no new major medical problems have occurred. We search for anything new and interesting on my skin, usually twice each day. Nothing has shown up, except for additional hair, often in places I never had hair before. It is a direct result of taking steroids and rubbing steroid cream on my skin. My hands have taken on a definite simian quality...long black hair on the knuckles, etc. I was happy to see the hair back on my head, but this is ridiculous.

There, and back again...

We will be headed back to Rochester, MN for a check up and more tests. The appointments are for July 7, so we will likely be leaving on July 6 and hope to be headed back on July 8. That, at least, is the plan.

Retired

Next week is car upgrade week. I have to put a couple of new all season radials on the old Focus and get the air conditioning fixed before we head back down south in July. The back tires on the little car were so worn, we were hydroplaning on the highway coming home last Friday. The snow tires currently on the front are not all that good for summer driving (we originally went to Rochester in January), and they are noisy on dry roads.

The meds are coming...

Finally, my necessary medications are arriving from the mail order pharmacy. I hope the refill process for those limited to 30 days will not be as onerous as getting started. Still, it is a pleasant thought that at least some of the medications arrived as 90-day supplies. Now, if I can just remember when to order refills...

Extra-ordinary

Despite my kvetching, I am thoroughly enjoying the comfortably mundane, ordinary days at home. Each little problem, no matter how immediately frustrating, is a normal-sized challenge for any homeowner, and solutions are reasonable, if not inexpensive. For example, I spent several hours today, working on the companion site for 100 Days Plus, and will be an archive of the earlier journal entries. The archive site will be called 99 Days Plus. I am moving the existing text files into the framework and I am currently up to Day +36. My pace is still that of a tree sloth on Ambien, but it feels good to be creating something out on the Internet again.

The day has gone gray and twilight is on its way. The cards, letters, and messages we continue to receive are a blessing for us and brighten each day. Neighbors and friends have been extraordinarily kind and thoughtful. Thank you all for your prayers and good thoughts. I know prayer is the power behind any progress I have made.

God bless and good night,

Mick

Mick McKellar Update--Day +113

They also serve who only stand and wait...

My Milton may be a bit rusty, especially his sonnets, but I remember that line. I am amazed at how well it applies to this week. I am waiting for the medical professionals to get things organized, so I know when I can be tested. I am waiting for my medications to arrive, either by mail or by UPS. I am waiting for a cloudy day, so I can go outside, and maybe go for a walk or mow some grass.

No voyage, just discovery...

Last night, I discovered a broken window in my basement that had to be patched. Lord only knows how long that hole was open. So far, I haven't found any critters in the house. I also found out that the network card in one of my computers was fried by the same thunderstorm that destroyed our router. Layer by layer, we're discovering where is the wear and tear from the last four and a half months.

About me...
I'm feeling OK and the rash is just there, though we both think it is less than before. That may be wishful thinking. Once the blood tests get set up, I'll find out if the rest of me is holding together. Of course, now that the Hickman catheter has been removed, they'll have to poke holes in my arm to get blood again. Meanwhile, I'm dutifully taking my medications and observing protocols. My blood glucose has decreased again, so I am only taking 16 units of insulin each morning. I hope that will continue down to zero in the near future.

We're still unpacking and organizing. Problem: I've been away long enough to forget where I put things and have to search my memory or search my house to find them. Simple things, like putting away the knives or finding a particular book take extra thought and a bit more time. Finding space for all the new paperwork, expense receipts, and medical records remains problematic. As usual, the devil is in the details.

However, despite all the frustrations, hassles, and tedium of it all, it is great to be alive and to be home.

Thanks to all who continue to send prayers and good thoughts.
Thanks to all who have sent welcome messages and phone calls.Thanks to all who are just happy to see us...makes me feel great!

God bless and good night,

Mick

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