Monday, September 23, 2013
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.
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,
Posted by Mick at 4:25 PM
Tuesday, August 6, 2013
|Dante joined our household this summer.|
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.
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!
Posted by Mick at 10:09 PM
Sunday, May 26, 2013
Friday, May 3, 2013
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.
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...
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,
Posted by Mick at 2:42 PM
Wednesday, May 1, 2013
-- 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.|
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!|
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.
"Whether you think you can or think you can't, you are right."
-- Henry Ford
Posted by Mick at 12:22 AM
Friday, April 12, 2013
To have great poets, there must be great audiences.
-- Walt Whitman, poet (1819-1892)
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."
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...|
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.
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.
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.
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,
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)
Posted by Mick at 3:29 PM
Monday, March 18, 2013
Shut-InThe hardest part this winter has been watching Marian struggling with all the snow. I cannot help much because: 1. The effort gets me out of breath very quickly, and 2. The cold air triggers asthma problems — making it difficult to breathe. The combination is like a one-two punch to the chest. Indoors, I am doing well — I can even climb the stairs to our second floor two times in a row without nearly passing out!
The next hardest thing is missing out on my grandsons' birthday parties (because there will be lots of children — i.e., germ carriers) present at these events, and all the other groups and gatherings that would normally populate our winter schedules. Mostly, I get out for hospital visits for blood testing, and occasional shopping trips for things I must purchase. Otherwise, I hide here, behind the walls of my home, and view the white world beyond the threshold...
Numbers GameMy blood tests were done last Thursday. I called today to ask for the results, and they all look pretty good. Even my blood glucose has been behaving nicely (93) and my platelets have risen to 199,000! I was happy to hear my potassium level is normal, because I found out that those with low potassium and/or magnesium levels may be in some danger if they are taking Azithromycin — an antibiotic I take on Monday, Wednesday, and Friday. The danger involves a peculiar form of arrhythmia and can have the side-effect of sudden death. Makes me want to eat my broccoli...
Getting ReadyWe are preparing for a second attempt at our first trip to Rochester, MN and Mayo Clinic — this time leaving on April 2, 2013 and returning on April 5, 2013. Our first attempt, back in February, was foiled by two rather large, nasty blizzards. This time? Who knows what Mother Nature and Old Man Superior have in store for our journey...
|The roof of our garage, across our deck.|
Prayers and good thoughts are always welcome and certainly helpful. I have hopes that all the testing will demonstrate that things have improved. Barring that outcome, it will be great if they show no further degradation. I'm well past the two year anniversary of my blood and marrow stem cell transplant, and would like to begin making some plans on how to celebrate my third anniversary!
God bless you all,
Posted by Mick at 5:13 PM
Thursday, February 28, 2013
Start the New Year Right!
Well, I was hiding at home to avoid contact with all those nasty germs and viruses out there, when I decided it would be a good idea to attend Mass on Christmas Eve. A week later, on New Years Eve, I was in hospital with a respiratory infection. Three days later I was home, and three more days later, I was off the high-dose antibiotics and Prednisone...back on my usual schedule of medications. But something had changed...my capacity for tolerating cold air was diminished and even light effort had me gasping for air. I was back at square one.
|Marian moves an overnight delivery.|
Another Bad Idea
So, what did I do? Well, on February 1, I decided to have a can of clam chowder for lunch. Guess what? I have discovered a newly acquired allergy...to shellfish (well, clams and calamari anyway)! An ambulance was called to take me to Aspirus Keweenaw hospital (because I could not walk), where I remained until released on February 3. As much as I like clam chowder, it is NOT worth that much pain.
While in hospital, they conducted an overnight oximetry test -- determining the oxygen level in my bloodstream while I sleep. No evidence of sleep apnea or a drop in my O2 levels was found.
|Our back door...adrift...|
The reason for our preempted trip? The second anniversary of my brother's gift, the gift of life, my blood and marrow stem cell transplant on February 21, 2011. We celebrated quietly at home...thankful for two additional years of life. On May 26th, I will reach the third anniversary of my diagnosis with Philadelphia chromosome positive, chronic myelogenous leukemia. God's grace has surely been shining on me!
I still have blood tests every two weeks, and the results have continued to either improve or remain positive. While in hospital the last time, my white count and my absolute neutrophil count both spiked. It appears my immune system may have responded to the crisis.
We will attempt our trip again, this time immediately after Easter, on April 2nd. I have high hopes that the tests will show improvement.
Mostly a Hermit
|Our deck, buried.|
I have not been walking outside because of the very cold air in February...cold air asthma is a painful reality for someone with only 26% lung capacity left.
However, life is good. I thank God every night for the giving me the day, and I ask for the gift of tomorrow. I wake each morning with gratitude in my heart for the great gift of one more day. I have discovered the precious present, and I am grateful for it. I am at peace with uncertainty, though I remain at bit paranoid by preference.
As the weather warms and improves, I hope to spend more time outside, walking when the roads and even some sidewalks reappear.
Thanks to everyone praying for us and sending us good thoughts and positive energy. God bless, and good night,
Posted by Mick at 11:17 PM