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