Mick McKellar Update—Day + 1096

Mick McKellar Update—Day + 1096

"Life does not consist mainly — or even largely — of facts and happenings. It consists mainly of the storm of thoughts that is forever blowing through one's head."
—Mark Twain's Autobiography

I haven't written one of these for awhile — the last one was on September 23, 2013 (day +945). I wrote about 60° F weather, light breezes, and enjoying time on the deck (in the shade, of course).

Today, I cannot even find my deck...it is one with a huge snow bank against the west side of my house. The snow continues to fall. The best measure (accurate for Laurium) is the Keweenaw County total, which yesterday reached 260 inches this season. Check it yourself. However, it snowed last night: According to Karl Bohnak (meteorologist at TV 6) they received a notice Laurium (that us) received 4 inches in 90 minutes. It did not continue at that rate all night, but as Marian could tell you, there was plenty to scoop in the driveway after the plow came by this morning.

The Philadelphia chromosome
as seen by metaphase FISH.|

Special Day
I originally planned an excursion for late this afternoon. Today is the third anniversary of the Gift of Life I received from my brother, Kevin. Early in the morning on February 21, 2011, at Rochester Methodist Hospital, doctors and nurses of the Mayo Clinic BMT unit attached a couple of bags to my Hickman Catheter. The bags contained stem cells and T-cells harvested from my brother. They had two jobs: The stem cells were to find my blasted bone marrow (blasted by several days of methotrexate and other drugs) to engraft and restart my bone marrow AND the T-cells were to hunt down and destroy any remaining non-functional while blood cells (i.e., leukemia). It was a disappointingly simple and low-key procedure, and it scared the hell out of me, because there was no going back from this change.

Obviously, the procedure worked. I engrafted quickly as my bone marrow bounded back and began producing a good variety of cells, and the T-cells really cleaned up on the bad guys in town. However, that was when all the fun started, because although the T-cells knew they were in the right neighborhood, they also knew they were in the wrong house. In about a month, they decided to attack my liver and my skin, and I learned what Graft versus Host Disease is all about. I have remained in full remission of the Philadelphia chromosome positive, chronic myelogenous leukemia ever since, and my most recent molecular testing still reveals I remain 100% donor in my blood stream. Than means although my skin and tissue contain my good old regular DNA sequence, my blood is 100% my brother's DNA. This really brings siblings close, you know?

Tremendous gratitude prompts me to celebrate, and I planned to have dinner at a local eatery. However, the blizzard has short-circuited those plans. Better to rail and cry at the unfair weather, than to suffer the consequences of driving about in supremely inclement weather. My prime concern today is whether or not UPS or FedEx will be able to deliver my anti-cancer drug — the one I take to keep my CML in remission.* When I tell the online pharmacy where to deliver and under what conditions, they tend to whistle and not want to believe. You see the drug is very sensitive to temperature extremes and is horribly expensive. Local pharmacies and most hospitals do not stock it, because of the expense and because CML is relatively rare in the U.P. Ah! The joys of living 14 miles past the End of the Earth. It's ~12 miles from Houghton, MI to where we live in Laurium, MI. (See photo above.)

How Am I Doing?
Most of my friends and acquaintances ask that question whenever we make contact by phone, by e-mail, on Facebook, or face-to-face. It's a fair question and I'm never certain how to answer. Usually, I smile and say, "Great...I'm still here!" That may be the best answer of all. Detailed information about my daily experience would both frighten folks and bore them to tears. Large parts of my day are routine. I take medications four times each day, because some drugs cannot be taken within an hour of other drugs, and some cannot be taken with food, while others need food, both to work properly and not cause incredible distress. Azithromycin, I take only three days a week (MWF) and I don't look forward to those days as much, because the side effects are, shall we say, troubling and embarrassing.

I have a quick response kit: High dose antibiotics and prednisone, which I will take at the first sign of a cold or fever — even before the necessary trip to a hospital emergency room. They might be overkill, but could prevent another air ambulance flight to Rochester.

My lung capacity, when last tested, remains at about 25-27%, so I get out-of-breath easily and very cold air causes my lungs to almost seize (sometimes) making it painful to breathe. This hampers helping with the snow removal and even limits walking Dante. I try to take my turn with Dante, both because it feels right and I rather enjoy my time with my fuzzy friend. I look forward to warmer days, when we can walk (slowly, very slowly) about the area and get much needed exercise (while avoiding that treacherously inviting sunlight).

Recluse
Most have noticed that I seldom appear outside the house. I visit Portage Health once a month for blood tests (and sometimes an EKG
to see if one of my meds is messing with my heartbeat), and I sometimes go to Walmart — shooting for non-busy times and quick trips. Mostly, I stay home and avoid near contact with anyone who might have a sniffle. Although I had a flu shot and pneumonia vaccination, my ability to fight off these nasty bugs is minimal at best. I think I miss going to church the most. However, sitting for an hour in close proximity to so many folks who just might have a bug or two to share is frightening.

One cannot argue with success. On February 5, I passed one full year with no hospitalization for illness or injury.

Not Lonely
Of course, I am not always alone. Marian and Amanda are here and have learned to deal with my "storms of thoughts," and "poetry spasms." I spend a lot of time alone, both to think, read, watch movies, etc. and to give them time away from the grumpy, needy, curmudgeonly old head of household. Winter makes it even more important to maintain some personal space. It helps that I have my own room now. I had to take over the guest room (Michael's old bedroom) because it does not have carpeting and it does have air conditioning (for those rare simmering, sultry summer days when breathing is difficult). I keep the heat very low, and the blankets piled very high, all to assist with breathing. This also makes it less likely I will disturb Marian on those nights I cough myself to sleep.

So, although I spend a great deal of time alone, I am not lonely.

So, Then, How Am I Doing?
I am happy to be alive. I am blessed to have additional time with my family and friends. I am overjoyed that my muse has not deserted me, though some of my readers may wish she would take a vacation. I still try to live one day-at-a-time, with necessary consideration for the future, but no need to dwell on it. I spend my thoughts on fond memories of the past, with little need for regrets or recriminations. I read, I write, and I think crazy thoughts. I dream and I try desperately to remember those dreams, so I can share them. I have friends, and that has been the greatest balm for all my wounds. From early childhood, I had few friends, most of whom died, so I avoided making lasting friendships. Now, I have many and treasure them all.

How am I doing? I'm doing great! --
* BTW, UPS made it. They brought it from Marquette!

Mick

Mick McKellar Update — Day +945

It's a beautiful fall day in the Keweenaw — sunshine, temps near 60 degrees F, and a light breeze from the southwest make for one of those days you just want to go for a walk in the woods. So, naturally, I remain indoors, hiding from excessive sunlight because several of my medications require I avoid exposure to the sun. My doctors have also warned against visiting with old Sol because of his tendency to cause various and sundry forms of skin cancer — a very real possibility because of my compromised immune system.

If I can drag my carcass out of bed, I take my walks (with Dante) early in the morning, when the shadows are still long and there is plenty of shade from the mean old sun. If I don't take him out between my first set of medications (taken on an empty stomach) and my second set of morning meds (taken with food), Dante will bark at me — like Lassie telling everyone that Timmy fell in a well — and run to the front door. At the front door, he stares at me, then at his leash, and then at the door. If I don't respond, he will repeat the process, getting more frantic each time.

For the moment, we walk about a mile each morning. There are days I cannot make the walk, and he is disgruntled with me for the rest of the day. On those days, Dante will walk to the door, sit down, stare wistfully at the door, and then stare balefully at me. Amanda's dog is trying to send me on a guilt trip — go figure.

A Tooth, Forsooth...
On September 11th, I traveled to Marquette for a root canal by an endodontist (a dentist that specializes in root canals), because a regular dentist won't try a root canal on me — I'm too much of a package, I guess. I had to choose between having the tooth removed by a dental surgeon, or having the root canal. Although it is a tooth I don't use (no other tooth meshes with it), I chose the root canal because it is less invasive and the risk of infection is much lower. The root canal was an apparent success, with most of the pain centered much lower on my body.

The endodontist does not participate with my insurance (Delta Dental), so I had to pay the whole bill up front and wait for reimbursement, which the dental assistant said is usually about 70%. I got the check...for 50%. When on a fixed income, this kind of unplanned for expense wreaks havoc with one's bottom line. Ah, well, another bump in the road...

Testing, Testing, 1 - 2 - 3...
My monthly blood tests, done on September 17th, show readings consistent with those for the last two years — no indications of problems — which I find reassuring. A new test, requested in this last batch, determines the fluoride level in my system. I've had some bone pain, mostly phantom stuff (ouch! and gone...ouch! and gone, etc) and the doctors at Mayo Clinic ordered the test because certain medications can result in higher fluoride levels — which can cause such pains. There's always something.

Loving Life
It's easy to complain about small stuff, like pain in a bone (or in the wallet), but only because it is just so wonderful that I wake up each morning — still alive and functional. I have not stayed in a hospital since last February — a great pleasure for me, and a grand relief for Marian, who spent so many hours in waiting rooms and on uncomfortable chairs in hospital rooms. My perception about what is important in life has changed dramatically after avoiding three close calls with leaving it. I am learning to live with my new limitations and not get angry and frustrated when I have to stop because of my minimal lung capacity. It's like getting angry because the hair on my head is more decorative than protective these days — pointless. I just put on a hat and a smile...and walk (slowly) out the door.

Good day and God bless,

Mick

Mick McKellar Update -- Day +897

Dante joined our household this summer.

Wow! Friday, August 9, 2013, will be day 900 since my blood and marrow stem cell transplant! I still cannot fathom how lucky and blessed I am to have made it this far, despite a few missteps and a couple of "Duh!" moments (like eating clam chowder a few months ago...). I'll admit the road is rough in patches, more potholes than pavement, with chasms yawning to each side and a precarious footpath to follow. Yet, I am happy to continue my journey of discovery.

We're Baaaack!

Marian and I journeyed to Mayo Clinic in Rochester, MN on Sunday, so I could spend all day yesterday (yeah, we rose at 5:00 AM to walk to the clinic) for blood tests and pulmonary studies. I had both an oxygen titration test (on a treadmill) and the usual pulmonary function tests. I met with a lung specialist and my BMT doctor. Apparently, I am doing exceptionally well, because once again there has been no decrease in lung function. I have been holding at my present values (with minor fluctuations) since this problem (bronchiolitis obliterans) took away most of my lung capacity. I still have between 25 and 27% capacity. To give you some idea of the loss, when I first arrived at Mayo Clinic (in 2010), my lung capacity was about 3.0 liters (fairly normal for an overweight 60-year-old). Beginning approximately February of 2012, my capacity has been between .9 and 1.0 liters.

So what's the problem?

Well, it seems any nastiness in my lungs -- irritations, viruses, infections, etc. -- can trigger reactions that tend to invite investigation and response from my renegade T-cells, and could cause further devastation and loss of lung function. Many of the medications I take (and a new one I will be starting) help to prevent the reactions that draw interest and allow those renegades to look elsewhere for opportunities to create havoc or just chill indefinitely.

Rapid Response Kit

The lung specialist also prescribed some medications for me to keep handy as a rapid response kit. Basically, we're talking a powerful antibiotic and prednisone. It is a simple idea...if I get a sniffle or think I might have picked up a bug, I take the pills immediately...THEN I call the doctor. Any sneaky germ or viral visitor that might give you a sniffle and a sneeze and dim your lights...well, let's just say it could put out my lights for good. If I didn't need the medications, well there is no real harm done (other than the side effects) and we taper off and stop the meds once again. Sounds like a plan to me.

With two grandsons, who just
left the area. Gonna miss them.

Looking Forward

I still take each day as it comes, each one a gift and and a joy. Yet, I cannot help looking forward to visiting with my grandchildren and children I haven't seen for quite some time. It seems that, maybe, I will have the chance to do that.

A Good Trip

Our trip was relatively uneventful. There were multitudes of deer scampering across the rural highways we drove -- especially on both M-26 in the UP, and US 63 in northern Wisconsin. Our car, a recent reverse legacy from our son, Andrew, performed perfectly. That 2009 Ford Focus achieved 40.5 MPG on the trip to Rochester and nearly 39 MPG on the return leg.

Marian drove about half the trip down and I drove the entire trip home. I think I was energized by the test results and the good news about no further deterioration. We are home safely and appreciate all the good will, good wishes, and great prayers that spirited us on our way.

Thanks to you all, God bless and good night!

Mick

Mick McKellar Update -- Day +825

Winding down from a special day. I was diagnosed with leukemia on May 26, 2010. Today I became a three-year survivor! Woohoo!

Mick McKellar Update -- Day +802

A Pleasant Surprise

Internet surprises are rarely welcome and seldom a cause for rejoicing. Although I rarely open unsolicited e-mail from unfamiliar sources, one message caught my eye. Before opening it, I searched for the originating site and found it...a consulting firm. Intrigued, I opened the message and (for the first time in a while) smiled my "pleased as punch" smile.

A person (or, most likely, an algorithm) found a résumé I posted nearly ten years ago (about the time Michigan Tech involuntarily retired me), and a member of their staff wanted to interview me about a job opening in Appleton, WI. If that was not a good fit, they had another opening that seemed to fit my qualifications.

Cattle Call

Now, I am all but certain this was part of a cattle call, a résumé roundup to fulfill a quota for a client, but (expletive deleted!) it just felt good to be asked again! The job opening was for a Union benefits specialist, starting salary $50,000 per year. If one is going to dream, why not dream above the poverty level?

After I calmed down, and quit grinning at my reflection in an inactive computer monitor screen, I set about writing a worthy response to this unexpected boost to my flagging self-confidence. Here is the message I sent to the firm, with names removed, of course:

Dear (Name Withheld), 

Ah, you have given my poor old heart a satisfying and much appreciated lift. I am writing in response to your e-mail of May 2, 2013, requesting an interview regarding a job opening (or two!).  

In the nearly ten years since I posted that résumé, a dark torrent has passed beneath my bridge. I am 63 years young and 802 days out from the blood and marrow stem cell transplant that saved my life -- and altered it forever. On May 26, 2010 (at 9:00 AM, actually) I received a call telling me to report to the hospital. I was diagnosed with Philadelphia chromosome positive chronic myeloid leukemia. Three times I knocked on death's door and three times I fought back before he could answer.  

I am now in full remission; subsisting on a small pension and Social Security disability benefits, taking 20 + medications each day, and learning to cope with only 27% remaining lung capacity. (Sometimes, the treatment can be more painful than the disease...) 

I have been feeling particularly useless of late -- not much for snow shoveling and all that -- and your kind message reminded me of the value of a mind, which despite the chains on the body, remains free and able to "slip the surly bonds of Earth." (With thanks to John Gillespie Magee, Jr.) 

If you wish to talk, please call. I am home most of the time, except when weather permits me to totter about in the wilds of Laurium, MI. It seems however, that I may not meet the physical qualifications for said employment. 

Pleased as punch, I remain, 

Elwin N. McKellar, Jr.

Other Good News

I received a call from my local oncologist/hematologist office with the results from yesterday's bloodletting. The numbers, although far from sterling, are well within limits for one well past his expiration date:

• Hemoglobin: 12.6 (a bit anemic, but don't tell anyone)
• White blood count: 5.0 -- in normal range
• ANC: 2.8 -- in normal range
• Platelets: 186,000 -- well within normal range
• Total Bilirubin: 0.6 -- normal
• Creatinen: 1.1 -- within normal limits
• Magnesium: 2.0 -- normal as can be...

My walking has been curtailed by the sudden onset of winter's white and ice -- too slippery for old numb-foot to be tottering about on the snowy, slushy, frozen roads (no, we don't have sidewalks in Florida Location...).

Thanks to everyone who prays for us and sends us supportive thoughts. Thanks to God for granting me the gift of yet another day (even with the snow...).

God bless and good afternoon,

Mick

Mick McKellar Update -- Day +800

"Freedom is not worth having if it does not connote freedom to err. It passes my comprehension how human beings, be they ever so experienced and able, can delight in depriving other human beings of that precious right."
                                                                          -- Mohandas K. Gandhi




My Life Was a Lie...

Imagine my chagrin when I discovered that I missed a day as I counted forward from Day 0! Right around day 242, I skipped a day, moving day 243 a day ahead. Marian (and others...) were chiding me, insisting I was counting day zero (00) as day one (01); and I kept insisting that I did start the count correctly. Well, I was right...and I screwed up the count anyway. The only thing I can say in my own defense is that it was probably the drugs (Yeah, right...).

... Still, I Reached Day 800 Today -- Wednesday, May 1, 2013!

Spring finally comes to Laurium.

Yesterday was supposed to be day 800 after my blood and marrow stem cell transplant, but I stand corrected, and penitent -- celebrating today instead. A journey of 800 days has brought me to a world of less oxygen (wheeze, cough, gasp!) and more light. I still start each day with from 10 to 12 medications (Prednisone is 5 mg every other day, and Azithromycin on M, W, F).  The afternoon finds me taking 7 medications. There's a pill at 9:00 pm, and 5 more at bedtime. It's always an adventure to discover which side effects will dominate any particular part of my day.

I will go for blood tests on Thursday morning. It's only once a month now, because my CBC numbers have been so stable, at or near what should be normal for me. I still pray for a miracle to heal my lungs and let me breathe again. Oh, I know the science is against it -- what bronchiolitis obliterans and GVHD have taken away, no one shall return -- but, when did I ever blindly follow expert advice on anything?

• When I was injured at 18 months old, they said I would never walk properly without prosthetics...but I did.
• When I developed bronchial asthma at age 5, they said I would never be an athlete...but I was on the varsity swimming and tennis teams in high school, and junior varsity tennis at MTU.
• When I tried out for the high school choir, they said my ears were made of tin and a bucket would not help. However, once I figured out the math for the scale and could arrange anchors (notes I could match) in a song, I was able to sing in choirs, chorales, operas, and stage musicals. 

Becoming Intrepid Again

Now I am learning (and training) to make the most of what I have left (about 27% lung capacity). I can dream, can't I?

At least, I now can see over the banks!

By the way, I walked a half-mile outside Monday, and I just finished another half-mile yesterday afternoon. (Ta Da!) Now that the ice is gone and the temperature is not so cold as to trigger cold air-induced asthma, I can meander a bit -- tottering from shadow to shadow to avoid direct sunlight as much as possible.

Soon, the critical danger of colds and flu should pass, and I can once again emerge from my winter cocoon to attend Mass and visit with friends. I look forward to the freedom. In a few days, it will be three months since I was last in a hospital. Yeah!

To all who continue to pray for us and send us positive thoughts and energy -- Thank You! I'm in uncharted territory here...I did not expect to live this long. I remain surprised and grateful each time I see the sun rise...or at least a bright spot in the overcast.

Mick

"Whether you think you can or think you can't, you are right."
                                                                                            -- Henry Ford

Mick McKellar Update -- Day +783

To have great poets, there must be great audiences.
-- Walt Whitman, poet (1819-1892) 

Imperfect Reflections

I am an antique mirror. Old mirrors do not reflect crisp images -- they have a hazy, golden shade and suffer splotchy areas that manifest darker than the rest. Although my frame feels frail, weakened by the ravages of toxins and time, I still hang around, reflecting on events and scattering what light I can. I wait to discern whether I will be judged trash or treasure...

Reverie and Revelation

On Wednesday, a Facebook friend posted an evening meditation from Set Your Heart Free:The Practical Spirituality of Francis de Sales which suggested adopting an attitude of gratitude and offering as thanks "the silence of this night."

As I reflected on this, in my ancient and imperfect way, it dawned on me that I haven't known silence in all my memories, as far back as I can remember. When my tinnitus isn't hissing or whistling in my ears, I can hear my heart beat, the bones in my neck move, the sound of air rushing through my nasal cavities, even my eyes moving in their sockets. It is never silent in my head. I wonder what silence sounds like?

It was only recently that I discovered that other folks don't live with the raucous clangor of grinding joints and digestive processes, punctuated by the "thump, thump, thump" of their own heartbeat. I thought I was hard of hearing, but it's just too noisy inside my head.

Journey of Sun and Shadows

Our drive to Rochester, MN and Mayo Clinic on Tuesday, April 2 was both pleasant and exciting. Pleasant because the sun shone all day. Exciting because deer were on the move, seeking better forage...which apparently is nearly always on the other side of a highway. We had a perfect score...no hits, all misses.

Image from warmer days...

Wednesday, April 3 was the Day of Tests. Blood and urine samples were taken just after 6:00 AM. At 7:00 AM was my bone marrow biopsy, followed by a Bone Mineral Density Test, a Pulmonary Function Test, a CT scan of my chest, and removal of some really ugly toe nails by a nurse practioner in the podiatry offices. Besides having holes poked in me, my chief complaint was scheduling a pulmonary function exam (which required 3 minutes of stepping up and down on a stair) within two hours of the biopsy. All that movement made the biopsy site ache like the dickens.

Thursday, April 4 was the Day of Consultations. My medications and my current condition was reviewed and examined. I met with my oncologist/hematologist and with a pair of lung specialists. Not all test results were back yet, and what they had was a mixed bag.

Friday, April 5 was the Day of Escape to Home. Our journey was once again sunny and pleasant. Traffic was a bit heavier than before, but the roads were good and it seems the deer were mostly resting and playing chicken with other drivers.

Results

My doctor called Thursday this week with final results from the bone marrow biopsy. My "bone marrow biopsy shows normocellular marrow with normal trilineage hematopoesis. No morphological features of CML or dysplasia were noted. Chimerism studies show 100% donor DNA." This means my marrow was clear of any indication of leukemia and full remission continues. My blood DNA is still 100% my brother Kevin's DNA, and therein lies the dark side of my deal with the disease. Most BMT recipients trade one set of problems for another and hope that the new set is manageable and (at least for a time) non-fatal.

My blood work and tests showed marked improvement and stability. Blood counts are great, most are even within normal limits. My skin rash has disappeared (except for the recalcitrant scleroderma rash on my feet) and even the peripheral neuropathy problem with my hand, legs, and feet seems to have receded a bit.

My lungs, however, are another story. Officially, my "CT scan shows evidence of subtle mosaicism compatible with chronic infectious or inflammatory disorder. PFTs show close to 500 cc of drop in [his] total lung capacity and also a compatible and mild drop in [his] spirometry. [His] diffusing capacity has also decreased slightly." In other words, my lungs are incrementally worse than four months ago, and the scan shows the damage the progressive fibrosis is doing to my lungs. As I am not a candidate for a lung (or any other organ) transplant, this is of concern to me.

Plan of Attack

I remain on immune suppressant medications, with all the restrictions that implies, although my prednisone is now only 5mg every other day. We have to return to Mayo Clinic in four months for follow up testing and possible oxygen titration tests (these involve a treadmill and sound awful). I continue to take three medications to help with my lungs, but refuse additional inhaled steroids for the nonce, as the current damage occurred while already on steroids (prednisone) and they seem to do little to stop progression.

Supplemental oxygen would make breathing easier, but I prefer to work on an increased regimen of progressive exercise, to try to improve my ability to use what capacity I retain. Because I am able to maintain an O2 saturation at or above 88%, even when on walk-about, my insurance will not cover portable oxygen. My O2 levels drop quickly when I move, but they also recover quickly when I rest. Problem is: At 88%, things get a bit weird and fuzzy, and I need to rest immediately. Going beyond that limit is a lesson in pain I do not wish to learn over and over again.

Anniversaries

February 21, 2013 was the two year anniversary of my blood and marrow stem cell transplant, which we celebrated quietly, looking through our frosted window panes at the blowing and drifting snow. May 26, 2013 will be the three year anniversary of my diagnosis: Philadelphia chromosome positive, chronic myeloid leukemia (CML). I will be a three-year survivor of my third brush with the big C. There will not be a cake and candles...I don't think I could blow out the candles anymore.

However, candles or not, this ancient mirror will shine on that anniversary, with a light born of love, prayers, and God's grace. I thank you all for your prayers and good thoughts that blossom with a radiance to dispel the dark shadows that haunt my days and dance on the edges of my dreams.

Good day and God bless,

Mick

If words are to enter men's minds and bear fruit, they must be the right words shaped cunningly to pass men's defenses and explode silently and effectually within their minds.
-- J.B. Phillips, writer and clergyman (1906-1982)