Mick McKellar Update -- Day +142

Despite the rumors, the intrepid walkers are still here and still active. I have not written an update since day +136. My medical condition has not changed since that date, and I have been out walking only a few times since then. I met with my local oncologist on Monday, July 11. He did an examination and ordered a few blood tests. I have not heard any of the results from the blood tests.

A nurse called from Mayo Clinic yesterday, and advised me that my next appointment for a checkup will be on August 11. This means we will leave the Copper Country on Wednesday, August 10 to return, hopefully, on August 12. He promised that all of the tests would be done on one day.

The tests done at the clinic are primarily blood tests, looking at my blood counts, liver functions, and kidney functions. They also do a pulmonary function test. The pulmonary function test is not fun -- I have to sit inside a glass cabinet and breathe into a machine -- inhaling and exhaling to my utmost maximum limits. Then they checked my oxygen level while I climb up and down a stair step for 3 minutes. Stairs are my enemies…

An invisible illness

Three or four months ago, one could tell I was quite ill simply by looking at me. I looked like death warmed over. Now, except for when I'm wearing the Darth mask, it's pretty tough to tell that anything is wrong. The rashes gone and the hair has returned -- even my eyebrows, eyelashes, and mustache have all fully returned. In fact, I need a haircut as I am beginning to grow a senior mullet…

However, major problems still persist though they be invisible. I have to wear the mask in public and around children as well as anywhere that construction or renovations are taking place. I also have to wear the mask when we're cleaning or mowing grass, etc. This is because I have no resistance to infection and my immune system is that of a newborn. I have to wait at least a year in after my transplant to begin inoculations for childhood illnesses like measles, mumps, and chicken pox. I am even supposed to avoid going into my own basement, because of potential exposure two molds and mildew.

The tired one

My chief complaint, however, remains the persistent fatigue problem. This is partially due to something called hemolytic anemia. My hemoglobin level continues to decrease and we're not certain why that is happening. The last information I have is that my hemoglobin level remains at 8.8. This is low, but not low enough to require a transfusion yet. Most likely, the reduction in hemoglobin is due to some of the medications I take every day.

In my previous experience, as I work during the day I grow gradually more tired as I work along. In my current situation, I start out pretty much in low gear and continue at approximately the same level until suddenly the batteries are dead. In my conversations with my doctors, and in my research, the general consensus is that fatigue remains an ongoing problem and will persist indefinitely. I guess it's just part of the package. As one person stated on a DVD provided via Mail Clinic, " Get used to the idea of afternoon naps."

Paranoia?

Is it paranoia, it's something really is out to get you? Marian usually does a full body check at least once, if not twice each day. We are constantly on the lookout for any changes that might indicate a rash, infection, or other problem. We question every cough, consider every sneeze, and monitor every bruise because even minor problems become major catastrophes in quick order. It's the nature of the illness, I guess.

Still, we are doing well, following the protocols, and praying for the best. Thank you to all who have been praying for us and sending good thoughts our way.

God bless and good afternoon,

Mick

Mick McKellar Update--Day +136

The intrepid walkers sojourned twice from the Gift of Life Transplant House (south) to the hospital today for tests and consultations. The tests were generally good news. I am no longer taking any prednisone and my dosage for blood pressure medication was cut in half. The ever-present rash seems to have taken a hike (or is barely there), meaning very little use of steroid creams from now on. I am no longer taking insulin, as my blood glucose has stabilized at normal levels (around 100).

In general, I'm in pretty good shape for the shape I'm in...

I still have problems with fatigue...I tire easily and completely. There is no gradual decrease in energy, as I start in low gear and continue until there is suddenly nothing left. My saliva has changed into something evil tasting and it ruins nearly everything I eat. So, we're busy trying to figure out what is causing that and the ongoing hemolysis (death of red blood cells) problems.

We will have to come back to Rochester again in a month for more testing and another checkup. At least it's summer...

We head for home tomorrow morning early, and are praying for another good ride in good weather.

Thanks for the prayers and good thoughts,

God bless and good night,

Mick

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