Monday, September 24, 2012

Mick McKellar Update -- Day +581


I hit the floor in the kitchen tonight...and I hit it hard. My right foot tangled in the cord from my headset on my computer, and tripped me up on my way into the kitchen. I stumbled forward, carrying a china dish and coffee cup. Somehow, I managed not to break either one, but landed on my left knee and left side — with my elbow tucked in close to help absorb the shock and stop my face from plowing into the vinyl flooring. I think I bounced at least once.

Normally, I would tuck and roll when falling forward, but there is so much breakable stuff in the kitchen and I didn't know where to tuck the coffee mug and plate. Because of the neuropathy in my feet and legs, I toppled like a hopping tree.

It seems, however, that the extraordinary density of my bones saved me once again, despite months of treatments with steroids and medications that tend to weaken them. My left knee works, although it hurts like the dickens. The left side of my chest is sore to the touch and it hurts some when I breathe, but there seems to be no bruising or discoloration. I'm hoping a pair of extra-strength acetaminophen tablets will permit some healing sleep tonight. Perhaps the light of morning will lend insight and help me judge the extent of my injury.

My condition, listed as CML, may now be defined as Clumsy Man (with) Leukemia.

God bless and good night,


Saturday, September 22, 2012

Mick McKellar Update — Day +580

Home Safely

Marian and I arrived home yesterday afternoon, a bit frazzled, but otherwise in good order. We met a few sprinkles along the way and the usual "hurry up and fix it" late season road repairs and construction projects, but the roads were good and the weather cooperative. I drove from Rochester, MN to Ashland, WI, when sudden neuritis pain in my right foot and ankle reminded me to share the chore. Marian drove the rest of the way. It was a pleasant return trip. We searched the radio for "oldies" stations and played CDs. Marian sang along. I tried (who wouldn't?) and spent a good deal of the time coughing. Bombastic Elwin has become Whispering Mick...


We're not yet certain when I must go back to Rochester. We would very much like to put off another trip until February. I have to return in late February or early March of 2013 to celebrate the second anniversary of my blood and marrow transplant with a bevy of tests, evaluations, and consultations. However, the doctors at Mayo Clinic are a conservative group and may require yet another visit before the end of 2012. That decision will be forthcoming.

What's So Special About 27%?

Back in June, they discovered that I had ~27% lung capacity remaining. During my emergency visit (first week of August), a pulmonary function study showed a slight decrease to between 27% and 25%. The PFS done on September 19 showed my lung capacity had increased a little...back to the 27% of the June test — but no better. The working diagnosis now is bronchiolitis obliterans, probably as a result of chronic Graft versus Host Disease (cGvHD). The rapid loss of lung function that happened between February 2012 (67%, I believe) and June (the 27% figure), seems to have stopped. That's the good news. The bad news is that, most likely, what I have lost is gone. However, as my doctor pointed out, there have been cases where a few patients have regained some measure of lung function through exercise and perhaps, through pure stubbornness.

The stubbornness part, I have down to a science.

While I am busy working for, and praying for, yet another miracle — my focus must remain on NOT permitting another insult to my lungs — the very kind of thing that might reactivate those renegade T-cells, starting another round of lost lung function. I can still function, in a limited fashion, at 27%. Below that, supplemental oxygen may become necessary, and chances to get out and walk become scarce. Normally, winter is one of my prime times for road-walking. At this point, I don't yet know how very cold air will affect my new normal. I may be looking for a used (or very inexpensive) treadmill this winter. Time, and lower temps will tell.

Intrepid — Again Today

The cool air this morning was welcome as I restarted my daily constitutionals — walking my .75 mile track (a six-block rectangle) in about 30 minutes. I know that sounds incredibly slow, but from my perspective, I was ready to shout, "Meep! Meep!" Brandishing an adjustable aluminum cane, I cut quite a dapper swath...toddling about the neighborhood.

5 — 6 — 7 — 8: Inoculate, Inoculate!

One last minute decision was a really positive result of this last visit to Mayo Clinic: I received round one of my vaccinations, post stem-cell transplant. I received five (count 'em five!) shots in my arms (three in the left, two in the right) for: Tetanus-Diptheria-Pertussis, Haemophilus influenza type B (Hib), Hepatitis B, Pneumococcal vaccine, and Inactivated polio. They recommended I wait on the Influenza (flu) shot until about mid-October, so that its limited effectiveness could span the worst of the "flu season." No live viruses are permitted, so the shingles vaccination is forbidden.

Will I get the full benefit of these vaccinations? Not likely, because my immune system is so compromised. However, they judged that that benefit was worth the risk.

A few changes have been made in my medications, mainly to help get me off the prednisone (slowly) and stop a cough which was likely triggered by one of my blood pressure medications. My numbers: the results of my blood tests, etc., all look very good. My blood pressure has been well within target range, and my blood glucose has been good — despite my continuance with prednisone.


I am a bit slow sending out this update — we came home last night. Prior to this visit, I read all the literature provided to all BMT recipients by Mayo Clinic, and more, about BMT, the process and the prognoses. I know the numbers...we all know the numbers. This last visit, however, put some familiar faces and fond memories on those numbers. One of those faces...a very good friend...died in August after two failed transplants and a valiant fight. I guess I have been dealing with that, as well as the other changes leading me to my new normal.

Thank you all for your prayers and good thoughts. I cannot tell you how much they mean to us.

God bless and good night,


Monday, September 10, 2012

Mick McKellar Update -- Day +568

Riddle of the Sphinx

What walks on 4 legs in the morning 2 legs in the noon and 3 legs at night? In Greek Mythology, the Sphinx at Thebes posed this question to travelers. If they answered incorrectly -- they were killed. If they answered correctly, the Sphinx would kill herself. Watch out comes old Oedipus (and me).

The answer is: a human. He or she crawls on all fours at the beginning of life (morning), walks on two legs in the prime of life (noon), and uses a walking stick or cane at the end of life (evening).

I was pondering this old riddle as I finished my morning constitution. You see, I now carry a cane as I march along through the morning mists -- a very slow march, but ready, steady, go(ing) forward at my own pace. I have become a bit unsteady on my feet (because of the peripheral neuropathy problem in my feet, legs, and hands) -- so, I use the cane as an out-rigger -- to prevent tipping. I also lean on it when I stop momentarily to catch my breath. Most days, like today, I walk a six-block square -- about .75 miles. Yesterday, I must have been feeling my oats, so I walked from home to Hecla Street in Laurium and back -- about 1.5 miles.

I felt like I had run a marathon.

I may try it again, but not for a week or two. It's all part of learning to live within my new normal.

Batteries Included

I completed a battery of blood tests last Thursday. My doctor at Mayo Clinic told me the tests were good/stable. I hope to learn more details when I see my local oncologist on Thursday (after more blood tests, of course). It is not that I understand completely all the ramifications of the hard numbers, but they do help me make judgment calls about going outdoors and attending events where I may be exposed to infectious agents, etc. For now, I guess I remain both good and stable.

We are watching a new anomaly: When I get ready to retire, I have noticed on several occasions that my lower left leg and foot are pale and cold, and the right lower leg and foot are pink and warm. By morning, all is pink and warm again. I bumbled my way downstairs three nights ago and asked Marian (still up, watching the tube) to feel my left foot. After the initial quizzical stare, she obliged and was astounded at how cold my left foot was compared to my right. It's just one more thing I must check out.

Pins, Needles, and Numbness

Both of my feet, my ankles, patches of my legs up to my knees, and to some extent my hands consistently have that "pins and needles" sensation one gets when a limb "falls asleep." I wonder if little elf dentists sneak into my bedroom and practice injecting elf Novocaine into my extremities while I slumber. Navigating our stairway in the early morning dark takes a lot of focus and care. (My bedroom is upstairs, the bathroom is downstairs...)

Outside Influences

I don't need my medical problems to make each day eventful. For example, Saturday's post included eleven (yeah, 11!) envelopes from Blue Cross/Blue Shield, full of Explanation of Benefit statements, along with two new itemized charges lists from Mayo Clinic. Something fun to read arrives nearly every day. Joy!


Perhaps the most stressful has been our phone bill. Until this last bill, our AT&T phone bills have been free of problems, because we seldom use long distance on our land line, using our cell phone, Skype, or Google Voice to reach out and touch someone far away. Imagine my chagrin to find, on the latest bill, a series of long distance service charges from a company called American Phone Services, billing through another company listed as USBI. As if we would not notice a sudden $8.72 increase in our phone bill...

They were also billing for two calls I made using Google Voice -- a service which has been and remains free.

I contacted USBI via Internet and they responded almost immediately (next day). Their response was predictable...they are only the billing company, so they passed the buck to American Phone Services.

Today, I called American Phone Services. Their representative, obviously a native of India with a thick accent, insisted on three things: First, that our AT&T phone account is in Marian's name; second, that Marian requested their services on March 27, 2002; and third,  that we have been billed regularly and should not be surprised. She refused to cancel any services because she said Marian ordered them. So, I put Marian on the line. After some heated words, and a request to talk to her supervisor, they hung up on us.

There are three things VERY wrong with her statements: Our AT&T account, established more than 40 years ago, has always been in my name only; Marian never requested long distance services from any company; and such charges have never before appeared on our statements from AT&T. I verified this by calling AT&T customer service and talking to a representative, who checked back on previous bills for me. We will be paying our phone bill, but NOT the additional charges.

I don't know if we will get a correction from American Phone Services soon, however, I will be filing a complaint with the FCC. From what I read on their website, this problem is worsening because of all the things folks can charge to their phone bills.

The moral of the story is this (especially if you have a wire line phone): Read your phone bill carefully!

Maybe on my next update, I can complain about all the phone calls we receive for political surveys, political ads, and credit card scams. Maybe not...

Once more unto the breach, dear friends, once more...

With apologies to Henry, the game is afoot once more as we journey to Rochester on September 18, for two more days of testing and consultations. I have appointments on the 19th and 20th. We hope to come home again on September 21. That is that plan. Perhaps my neighbors will hear a thready, wheezing voice calling to his redoubtable old Focus on that early morning: "Follow your spirit, and upon this charge; Cry 'God for Harry, England, and Saint George!' Perhaps not...

As always, we are thankful for your prayers and good thoughts. God bless you, and good night!