Mick McKellar Update--Day +202

I hardly noticed as I passed day 200 since my transplant. After my recent bout with my recalcitrant gall bladder, my numbers have rebounded slowly to where they were before the attack. We are praying for further improvement. I will, of course, have more information after we visit with the doctors at Mayo Clinic on September 29th.

Turn on the heat...oops!

Wednesday morning was very chilly and I (reluctantly) gave the old thermostat a twist and turned on the heat. About a half hour later, I turned the heat off again. However, the blower on the furnace continued to run and run and run. Finally, because it was still running on Friday morning, we called for service. Jokingly, I told Marian I was going to grab my rubber mallet and "adjust" the furnace. When the repair person arrived, he opened the front panel and rapped the switch with his screwdriver. The blower stopped. Unfortunately, it would not start again...even after a good cleaning. So...we had the switch replaced. Ouch!

I suppose I should not complain too much, as we had the furnace installed in 1985 or 1986 and it was not required servicing (except cleaning) since. Still, the repair cost was a blow -- especially after replacing our television less than a week earlier. (The old set, only 15 years old, died a quick and unexpected death last week.)

Remembering

Today's services and radio/television coverage has focused on the events of 9/11/2001. As with most of my friends, I remembered watching the disaster unfold on television. I was working for Michigan Technological University then (before they terminated my position in 2004), in the Information Technology department. Later that night, I was moved to write two poems. One addresses the spirits of the lost, the other the depth of insecurity I felt as a result of the attacks.

To honor the memory of the lost and commemorate the day, here are my poems from September 11, 2001.

God bless and good evening,

Mick

Warm Rain - Broken Dreams

We hear you walking on our massive grave.
We feel the warm rain falling from your eyes.
We hear the steady beat of hearts so brave -
A counterpoint, to hundred million cries
Of horror, disbelief, and anger dark,
Rising from the depth where vengeance lies.
A prayer of sorrow sung to music stark,
A scream of terror rising to the skies,
Our broken bodies sing, of spirits fled
Away, among the clouds where eagle flies.
And as our names are numbered with the dead,
And as we fly where courage never dies,
The warm and loving rain of hope still streams,
Upon the broken soil of shattered dreams.

Mick McKellar
September 2001

Death of Sleep

It seems to me an age ago I slept.
I closed my eyes, and snuggled warm and free
Of worry, or of eyes that often wept
For heroes, now entombed in dark debris.
At times, I feel I live a world away
From twisted metal, powdered stone, and pain.
But, then the ghastly images take sway -
Review the awful memories again.
The vast and placid lands that are my home,
Once offered all the safety I could need;
But now, I know the enemy can come
To steal away that peace with lightning speed!
And as we ponder war in our great pain,
Sometimes, I think I'll never sleep again.

Mick McKellar
September 2001

Mick McKellar Update--Day +194

I did better this time, it has only been nine days since my last posting.

Mayo Clinic set my next appointment for a follow up visit: September 29, 2011. Once again we will leave on a Wednesday (the 28th) and hope to return on the following Friday (the 30th). The doctors at Mayo Clinic seemed pleased with the numbers generated by my weekly blood tests, even though my last hemoglobin count was down again...to 8.7 g/dL (normal for men is: 13.8 to 18.0 g/dL). My other numbers are generally good, some even near normal.

There appear to be no lingering effects from my latest hospital adventure: The Old Man and the Gall Stone. I will see a surgeon in Rochester regarding recommendations on removing a recalcitrant gall bladder when I visit next. At least, I managed to stay five days in a hospital and not bring home any infections or diseases I didn't bring in with me.

Folks ask me how I am doing...

In general, I feel quite well, although my energy level depletes quickly and there appears to be no reserve. I find that afternoon naps, when I can arrange to get them, are quite helpful. I am having no pain other than that which comes from using muscles too long on hiatus. Three times in the last week, I raked apples from under our trees -- I raked them and Marian collected them with a snow shovel and a little red wagon (Radio Flyer) for dumping in a special composting area. The pain in my shoulders and upper back reminded me of how long it had been since I did any raking.

I mowed it all myself...

I managed to mow the entire yard yesterday, and took some photographs to commemorate the occasion. It was cloudy and cool in the morning...perfect weather for a person suffering from medication-induced photophobia. Unlike the latest edition vampires, I do not sparkle in the sun...I just turn red and feel really rotten for hours after exposure. At least three of my medications warn against prolonged exposure to any sunlight, natural or artificial. There are no tanning booths in my near future. Maybe I will join the Pale Force.

The intrepid walker also managed two days of two-mile walks (accomplished in the late evening, just before the sun goes down and there are plenty of shadows in which to hide). Unless there is construction or grass mowing or other dust-producing activity, I can even walk without the benefit of the Darth mask.

Good news and bad news...

First the molasses: After all my complaining, BCBSM may have discovered errors in billing and payment, as well as miscommunication between BCBS of Minnesota and BCBS of Michigan causing these extraordinary additional billings from Mayo Clinic. We may not owe as much as we were told. Our last payment nearly broke the bank...

Now the sulphur: Two times the technology troubles in a single week. First, we sent our Nikon Coolpix camera in to Nikon for repair only to be told that the view screen was somehow cracked and bleeding...and the damage is not covered under warranty. They want more than $105 to repair a camera that cost me about $85 to purchase. Not going to happen. I found a nice Kodak Easy Share at Wal~Mart for around $70. Nice price, but it still hurts.

I still have not determined how the view screen cracked itself while sitting quietly on my desktop between uses. Odd, that...

Second, our ancient (about 15 years old), 27-inch, combination space heater and television quietly expired -- right in the middle of Marian's favorite soap opera. We bit the bloody bullet and bought a 26" LED LCD HDTV from Vizio at Wal~Mart (last one in stock). It is the largest flat screen that will fit in our old entertainment center, but certainly big enough for our tiny living room. Another ouchy just hit our account. I am hoping it will partially pay for itself in energy savings and reduced eyestrain.

Writing the great American memoir...

Several folks have indicated that I should publish my journal as a book, and share my experiences along the leukemia/blood and marrow transplant journey. I think it is a grand idea, and will work on it as my chemo-brain allows. Editing and formatting a book requires energy and concentration at levels I cannot yet maintain for long. However, I feel I am getting stronger and will keep everyone posted on my progress.

Of course, I still have to find a publisher willing to take a chance on an "unpublished" author. If you know anyone interested in publishing the story of my 100 days plus, the journey of a leukemia survivor and his transplant experience, please let me know. It would be a real motivator to know that a publisher was interested.

Well, it's getting on toward time for my next barrage of pills and a quick supper. Thanks you all for the prayers and good thoughts.

God bless and good evening,

Mick

Mick McKellar Update--Day + 185

It has been ten days since my last update. The gall bladder situation seems to have resolved itself with the aid of antibiotics and five days of medical care at Portage Health. The course of oral antibiotics has ended, along with the ongoing stomach upset and other less agreeable side effects of those additional medications. My weekly blood tests show that my condition has once again stabilized and my hemoglobin, although still low at 9.0 is much improved from the low of 7.9 when I left the hospital.

Sticker shock...

As expected, the medical bills continue to flow in from Mayo Clinic and elsewhere, as BCBS of MI and my medical providers sort through more than six months of activity and identify services not covered by my insurance. Of course, I must review the material and have calls in to both BCBS and Mayo Clinic to clarify and perhaps even appeal some of their coverage decisions.

In all my years as a writer and editor, I handled entire manuscripts that came no where close to the sheer size and density of the paperwork surrounding my blood and marrow transplant. The BCBS statements alone already fill a 3 inch ring binder. In case you were wondering, the total bill for the transplant (so far) has topped the $125,000.00 mark and is still rising. I may not be the six million dollar man, but I have made a great down payment on achieving that status.

Al fresco...oh, no!

Two evenings ago, Marian and I decided to dine al fresco...on our deck. There was a warm evening breeze and the temperature was moderate (about 75 degrees). I opened the umbrella on our deck table and arranged my dinner in the shade. I have to avoid direct sunlight exposure for more than a few minutes a day, or provide some sort of protection (clothing, hat, sunscreen, etc.) because several of my ongoing medications prohibit exposure.

Marian, as usual, sat in the open, absorbing as many rays as possible, as I huddled under the umbrella near the outside wall of our home. There was only a small slot open to the sky over my head and slightly behind me. I donned my sunglasses and double-checked my sunscreen. I settled down to enjoy my rapidly cooling dinner. I had barely managed one mouthful of my food, when the idyllic scene was disrupted by the pin-point bombing skill of a high-flying starling. The sudden appearance of a bird poop bomb on my left arm and left hand signaled a rapidly deteriorating evening of dining pleasure.

I rushed inside to clean up and returned to my now cold dinner, encouraged by the localized effect of the bombing and lack of collateral damage...i.e., no poop in the food. However, as I set to once again, another visitor dropped by share my meal. A rather large and nasty looking wasp landed on the table and proceeded to crawl onto my plate, making a beeline for the meat sauce on my pasta.

Naturally, I tried to shoo him away, but he was not having any of it. The irascible bug hunkered down between my pasta and my steamed yellow beans, and I swear he glared at me. Grasping the tines on my fork, I flicked him off my plate with the fork handle and waited for him to either come at me or fly away. Instead, he stalked across the glass surface of our deck table and crawled right back on my plate. Nonplussed, I repeated the wasp flicking exercise twice more, and each time my stubborn, winged dinner guest shambled back onto my plate and dared me to do it again. Finally, I flicked him away a fourth time, grabbed my plate of food and returned to the seclusion of our dinner table indoors. When I looked back, the wasp was still there, as though waiting to be served.

Marian said he bothered her a bit. She told him to go away and he did. Go figure.

Hurry up and wait...

I checked my online account with Mayo Clinic today, and I still do not have an appointment scheduled for my next follow up visit. Indications are that they plan to schedule my visit at the end of September. This works well for me, because my younger son, Michael, is coming home from Washington (near Seattle) for a visit in mid-September. Marian is going to Seattle for a visit with Heather and her family during the first two weeks of October.

Meanwhile, I shuffle from one day to the next, enjoying life one day at a time. It is now more than six months since my transplant, and despite the prescriptions, the protocols, and the paranoia, I thank God for the gift of each and every new day. I also thank you all for your visits, letters, cards, e-mails, and communications.

God bless and good afternoon,

Mick

Mick McKellar Update--Day +175

The intrepid walker has plans to walk, somewhere, today. I was released from Portage Health hospital on Saturday, and spent yesterday not accomplishing much. I have already been back to Portage Health for follow up blood tests this morning and I am awaiting results. I hope they remember to call me...

When released on Saturday, my hemoglobin level was at 7.9. I believe that is a new low for me, but is apparently not scary low or they would not have let me go. My bilirubin, which sprung to a high of 5.5 on Thursday, was at 2.0 -- high, but not out of my range. I had no fever to report for the last three days of my stay. So, as I understand the situation -- my liver appears to be going back to normal, my pancreas is well-rested and functioning normally, and my gall bladder is healing quickly. In fact, they were a bit surprised at how quickly I responded to treatment.

That was nice to hear.

I am still taking some strong antibiotics (Cipro and Flagyl) to provide ongoing, broad spectrum treatment -- for six days. After that, I will be back on my normal "dirty dozen" of medications and supplements each day.

It appears that the crisis is over.

Tell it to the surgeon...

However that does not mean that my gall bladder should not be afraid...very afraid. They don't recommend taking it out now, but feel it should come out in the not-to-distant future. As long as old GB behaves, they want to let him hang around while I continue my journey toward a functional immune system. In this case, time truly is on my side. Also, if this is done when my gall bladder is not inflamed, it can likely be done as microsurgery, or what the surgeon called "four Band Aid" surgery. Cool...

Time passes...

I can hardly believe it. 175 days have passed since my stem cell transplant from my brother, Kevin. His T-cells are still making their presence known from time to time, and we are still constantly on the watch for signs of their handiwork. So far, however, the chronic GVHD (Graft vs. Host Disease) period has been rather uneventful.

The whole gall badder episode had nothing at all to do with GVHD or my transplant or my leukemia. According to several doctors over the past week, it was just rotten luck that my gall bladder cast a stone into the biliary duct (or biliary tree, see image) and it stuck, apparently plugging up the system for awhile -- inflaming the liver, causing pancreatitis, and a secondary infection in the gall bladder. An MRI showed nothing, so it must have dislodged, passing from memory and from my system.

Why no new photos?

Would you believe my new Nikon CoolPix camera is on the fritz? The viewing screen shows, not the image (or menus, etc.), but something resembling modern art -- blocks of color or black and some small fragments of images. So, no pictures until I send it to Nikon for repair (under warranty, I hope).

Thank you all for your prayers and good thoughts, both while I was in hospital and ongoing as I endeavor to heal.

God bless and good afternoon,

Mick

Mick McKellar Update--Day +170

I have not been posting messages for a few days because I am back in hospital again. Marian drove me to the emergency room at Portage Health on Monday. I woke at 3:00 AM with a slight stomach ache. At 8:00 AM I took some of my medications with water and a few sips of green tea. At 10:00 AM I threw it all up. However, my temperature was 97.2 degrees, and my medications have caused nausea before. By early afternoon, my temperature spiked to 102.3 degrees and we called my oncologist who ordered: "Get thee to the emergency room, pronto!"

A couple of hours and several blood tests later, it was clear that I had a major infection in my gall bladder, an inflamed liver, and pancreatitis. Apparently, I passed a gall stone that temporarily blocked the shared duct for the organs, which would inflame both the liver and the pancreas. An MRI done yesterday did not show any obstructions. This was good news.

As of this morning, my liver is getting mixed reviews (high bilirubin but other numbers are good), my pancreatic enzymes are much lower (indicating it is not as inflamed), and they are considering not taking out my gall bladder -- at least not for now. I continue to receive intravenous antibiotics as my own immune system is incapable of fighting off major infections and needs all the help it can get. The pain in the are of my stomach has finally eased, and my stomach is mostly complaining about taking all those medications without any food as a buffer.

I may be allowed to eat something today. I have not eaten since Sunday evening or even been allowed more than an occasional sip of water since Monday morning. I am looking forward to putting something besides medications in my stomach.

As far as they can tell, none of this has any relation to my transplant or GVHD, although my fledgling immune system makes recovery slower and that nasty old Graft vs.Host Disease boogeyman haunts every decision. I will likely be in hospital at least until tomorrow, maybe longer as they bring down the infection and watch for improvement in my already abused liver. Back in April, GVHD attacked my liver and did a lot of damage. Prior to this problem it was doing quite well and all numbers were normal. Now, old yellow eyes is back.

Anyway, things are stable for the moment and I plan to report any changes. I thank you all for your prayers and good thoughts. They are a true blessing for me.

God bless and good afternoon,

Mick

Mick McKellar Update -- Day +163

I'm just preparing for tomorrow's blood tests by fasting tonight, and delaying my cyclosporin capsules until 8:00 PM so the test will be approximately 12 hours after I take the dose. This gives a credible treatment level in the blood tomorrow. Generally, today was one of the good days, with only a small amount of stomach upset from the medications.

Oddly, I don't really get hungry during the day, but my stomach will start to hurt and I will feel a bit weak...this is my sign that I need to eat something. Just another way that life is different after a blood and marrow transplant. Soon it will be six months since my brother Kevin granted me a new lease on life with his stem cells, and a new set of "red-neck" T-cells to patrol my blood stream looking for fast growing cells to attack. I am praying that they will soon find themselves at home. I take anti-rejection drugs like cyclosporin because unlike other transplants, my body does not reject the transplant...the transplant rejects my body.  The doctors tell me that the T-cells will eventually accept their adopted home. Sooner would be better than later. Their activities are what cause Graft versus Host Disease (GVHD), but also create the Graft versus Leukemia effect, because they also attack any remaining cancer cells.

On the subject of brothers, I have another brother named Tim. Although he and my sister both volunteered and were tested, neither was a match for my transplant. About a hundred and fifty years ago, Tim, my wife Marian, and I were members of a rock band named Titus. At the time I played bass guitar, while Tim played rhythm and lead as well as sharing the singing duties with Marian. Well, Tim recently sent me some links to YouTube videos of the Rhythm City Dogs a band for which he plays bass guitar. The videos are of their band playing at a benefit for St. Jude's hospital. Tim is the guy in the red shirt. Links are below, please take a look.

I wish we had videos of our band...

Hurt So Good
http://www.youtube.com/watch?v=fJ5xarci-dI&feature=related
Break Down 
http://www.youtube.com/watch?v=T6J4HD8abkI&feature=related
Jenny, Jenny
http://www.youtube.com/watch?v=XzKJmDvB3zI&feature=related
Roadhouse Blues
http://www.youtube.com/watch?v=sDhFaITBOhg&feature=related

Well, that's my report for today (and my short trip down memory lane). Hope you enjoy the videos. Thanks for the prayers and good thoughts.

God bless and good night,

Mick

Mick McKellar Update -- Day +162

Last trip to Mayo Clinic...

I hardly know where to begin...it has been awhile since I last posted an update. Folks have been calling, wondering if I am still alive. Yup. I'm still here, and doing quite well. I did not write many updates because my condition has been very stable for the last few weeks.

The intrepid walker has ventured out a few times, but the heat and unrelenting sunshine in the last few weeks have kept me largely indoors. Three of my current medications warn against any prolonged exposure to sunlight (natural or artificial). I also have to be careful about exertion in very hot weather. The loss of hydration by both respiration and perspiration can cause kidney problems unless I constantly replenish the lost liquid.

However, I no longer seem to have any problem with the skin rash and I can venture outside for short periods without my Darth mask, as long as no one is mowing grass, doing construction or renovation, or otherwise stirring up a dust nearby. I also need the mask in large crowds...especially in close quarters (like the grocery store or at church).

Captain Bloodloss...

I am still dealing with hemolytic anemia, the still inexplicable loss of red blood cells. For three weeks, my hemoglobin stayed at 8.8 (low, but not scary low). Week before last, it dropped to 8.4 (scary low, but no panic). Last week's test showed a hemoglobin level of 8.6 -- an increase all on my own, no change in medications or treatments. We are hoping for another increase this week.


My other numbers have been good. All indicators of liver function have returned to normal levels. Even my creatinen dropped to 1.4 last week...a sign that all the liquids I have been pouring down my throat may be doing something other than sending me to the water closet far too often.

I no longer take prednisone. Consequently, my blood glucose levels returned to normal and not only do I not have to give myself insulin injections, I don't have to test my blood sugar -- things appear to have gone back to normal on that front.

My remaining problems are more like aggravations, really. I get pedal edema (swelling of the feet and ankles) probably due to medications. My saliva tastes awful. This is a very effective prevention against overeating. Whenever I taste something delicious (some few things do taste good to me), my mouth waters and the saliva makes it taste not so good anymore. Eventually, it overwhelms the taste of the food. Yuck!

Legacies...

There remain two long-term legacies from my experience: fatigue and chemo-brain. The fatigue will be with me for a very long time. I remember when I worked, I would gradually grow more tired until I needed rest. Now, I start at a lower level than before and stay at that level until suddenly, the energy is all gone. I go right from semi-energetic to total depletion in seconds. I even take an afternoon nap when possible. I managed to mow my entire yard a few days ago, but I had to take frequent breaks and when I was done, I felt like I needed to sleep for a year.

Describing "chemo-brain" is difficult. Imagine you are the custodian of a massive records center (i.e., the brain) with miles and miles of rows of filing cabinets, filled with millions of files -- all indexed and cross-referenced. Now imagine that someone suddenly reshuffled many of  those files in random order, scattering them among the remaining files. You can find many things, but there are holes, lost files, and any search and retrieval takes much longer. Also, filing new information takes longer, with uncertain results. That is "chemo-brain" and I read recently that the damage may be permanent.

Delicate

In general, I am doing very well. Folks keep telling me that I look good...a new experience for me. My hair has grown back...still mostly silver, but now it is very fine and rather wavy. It used to be rather coarse and straight as a poker. I once again have eyebrows and eye lashes. Even my mustache grew back. However, I also have hair on my knuckles and knees (and other inconvenient places), probably another legacy of the steroids.

Beyond the medical condition

Everything looks normal, but I am constantly reminded by doctors, a dozen medications, and daily protocols that the state of my recovery remains delicate and easily shattered by silly little mistakes or errors. Far too often I leave the house without my mask and have to return for it. I have lost count of the number of times I have grabbed something far too heavy for me now or attempted a task beyond my strength and endurance because I remember doing it before. I am not even supposed to go down into my own basement for fear of contact with mold or mildew that might be crouching in the dark down there, ready to spring out and attack my fledgling immune system. Perhaps the worst is not being able to maintain physical contact with my grandchildren or to be in their presence for long without my Darth mask. If I forget and shake hands with an old friend, I have to reach for hand sanitizer as soon as possible.

I am still living life one day at a time. I still thank God every night for the gift of the day and I ask for the grace of another day tomorrow. I also ask for strength to endure the isolation forced upon me by ongoing paranoia about germs and infection, and by the protocols of self-defense (the mask, no touching).

I will endeavor to post more often and keep everyone up to speed on my progress. I still live with the knowledge that my condition can change in a matter of a few hours, due to chronic GVHD (Graft-versus-Host Disease). However, I hope to have many boring reports of minor improvements in the future.

We head back to Rochester MN on August 10, for a day of tests and consultations on August 11, and then a return trip on August 12. After that visit, I hope to have good news to report.

Thank you all for your continued prayers and good thoughts. God bless and good night.

Mick