Mick McKellar Update -- Day +400

At times, it hardly seems it has been four hundred days since my blood and marrow transplant. At times, it feels like four thousand days...and I remember how I felt every second of every minute of every hour. Yet, I cannot remember the name of the Medco representative who called me less than two hours ago about a refill of my anti-cancer medication...

New Normals

Fatigue, fragility, and forgetfulness: These are concepts still very new to me. I used to sleep only 4 hours per night, now I need more and can easily cop a nap in the afternoon. Wee Georgie must have been a MacKellar, for none would describe any member of my family as fragile. Although I've lost bone mass (4% in one hip and 8% in the other), and I remain above normal for bone density, my health seems fragile and I must be very careful. Finally, my transition from exceptional recall to Swiss-cheese memory has been traumatic -- despite jokes about failing memory being normal for 62-year-olds.

The sudden GVHD rash of nearly a month ago now seems under control, but my numbers are all over the map...some up and some down. Much of this may be due to the ongoing changes in medications to deal with each new curve tossed my way by these red-neck Tennessee T-cells, wearing their miniature denim and flannel and tiny Doc Martins. As a friend told me, they know they are in the right neighborhood but they think they are in the wrong house. Every night, I pray they finally decide they are home and settle down to attacking foreign bodies and give up making renovations in my body.

In the still of the night...

In the peaceful dark of my room, however, I realize that despite all my complaining and kvetching, I am still here. I remain in full remission and my blood is still 100% donor -- the blood of my brother, Kevin.

I am still here, thanks to medical science, the power of prayer, and the Grace of God.

I have not written much and read little of late, because of problems with my eyes. Tonight's entry is short for the same reason.

Thanks to you all for your prayers and good thoughts. God bless you and good night,

Mick

Mick McKellar Update -- Day +379

It has been a few days since I posted more than a simple e-mail to anyone. The unfolding blossom of my journey and our situation is incomplete and difficult to describe.

Our jaunt to Rochester has taken us in directions unintended and down paths unforeseen. When we left on Monday morning (February 27), we intended to complete my tests, deal with the rash and head home on Friday. That changed when my doctor(s) finally examined me on Thursday.

The Package Arrives:

The tests on Tuesday actually painted a pretty nice picture of a fellow experiencing some problems, but well on track. My blood chimerism test shows 100% donor. (The blood in my veins is 100% my brother's blood...as it should be.) There is no indication of the BCR-ABL fusion protein in my system, which (I  believe) indicates I remain in full remission from the leukemia. My hemoglobin, white blood count, and platelets are all in good places. My kidney function appears normal. My pulmonary funtion study shows performance once again equal to when I left back in June, 2011. My bones are as dense as ever. This is all good stuff.

However, my liver function is abnormal and appears to require contination of treatment with prednisone. That's when the doctor finally gets a look at dusty, crusty old Mick.

But, He was Molting...and Looked Revolting...

Leaving was immediately cancelled. Appointments were made with opthamology and dermatology for Friday. Monday, I will see an endocrinologist about potential problems with diabetes (triggered by the prednisone). I will have another set of blood tests, and meet again with my doctor.

Complications

The eye doctor was pleased to report that GVHD did not appear to be directly attacking my eyes, although it was having a field day around them (including the eye lids). However, I now must take Restasis to increase tear production. In fact, I wondered if maybe I simply had no tears left. I add artificial tears several times per day.

His secondary diagnosis, although not earth-shaking, was disquieting: I have an early, dry form of macular degeneration in both eyes. He did agree with my previous decision not to have the cataract in my right eye surgically removed yet.

Then, I drifted on down to dermatology.

I was photographed from head to foot...literally. Posing in a photo studio in my underwear felt ridiculous, but it appears to be a major part of their medical records. There is even one face close up with my tongue hanging out. Oy, vey!

Then, the doctor took three skin biopsies! The red patch on my right foot may be a form of scleroderma caused by GVHD. It will take time before results are known. Yet, the worst was yet to come...

Wrap it up!

The wet wraps are back, the home version. Creams, wet pajamas, wet socks, a wet towel for the head, and a rag over my face -- place it all in a well-protected chair and cover with blankets for an hour twice per day. Oh, well.

I hope to have more (and better) information tomorrow. I wish I could write longer, but my eyes get tired easily, so I will retire for the night.

Thanks for the prayers and good thoughts.

God bless and good night,

Mick

Mick McKellar Update -- Day +374

We're still in Rochester, MN at the Mayo Clinic. I have to see an ophthalmologist about GVHD in my eyes and dermatologists about the awful rash from my scalp to my toes tomorrow, and then endocrinologists on Monday. I may even end up once again in "wet wraps." I swear I hear tiny T-cell voices chanting, "Paarfteeee, paarrteee!" The news said it snowed in the area today, but I know better...I was outside for a few minutes and it was my skin flaking away on the wind...yuck...

I will write more when I know more...maybe tomorrow...

As always prayers and good thoughts welcomed with joy and appreciated with vigor!

God bless and good night,

Mick

Mick McKellar Update -- Day +373

This has to be short because it is getting late and today has been a long and winding road for the intrepid trekker.

Yeah, we got there...

Marian and I left for Rochester yesterday morning, just after the snowplow opened our road...about 9:00 AM. The first hundred and twenty miles were pretty much what we expected on M-26, US 45, M-28, and US 2 through Ironwood -- snow-covered and icy, snow-covered and slushy, or just snow-covered road with a bit of blowing and drifting going on. A brief attempt at some lake-effect snow appeared on the far side of Mass City, but it did not last long. Once past Ironwood, and as we reached Ashland and turned on US 63 South, the roads were only wet and soon were dry. We even had some sun to light our way and arrived in Rochester after 6:00 PM.

Internet Silence

So, why no report? We are at the Founder's House, part of the Gift of Life Transplant House campus -- the original and first space used for GoL. Although wireless networking is available onsite and a password was provided, no instructions were in our handbook regarding configuration for authentication. This means the password was refused and we had no Internet access until late this afternoon, when the IT guy gave me the proper settings. This evening's access was intermittent...probably due to the storm dumping freezing rain on everything down here tonight. Yuck.

Such a day...

My busy day included a bone marrow biopsy, bone mineral density test, blood tests (can they really take that much blood?), and a pulmonary function study (again...). My innoculations were scheduled to begin on this visit -- kind of like graduation day in my eyes -- but they have been postponed because of my lousy sinus infection and low-grade fevers.

My rash continues to make me look worse. It now surrounds my eyes (eye lids and all), covers parts of my mouth (and lips), has reached inside my ears, and is crawling across my scalp. When I woke this morning, my eyelids were cemented shut and had to be gently freed with a damp tissue -- oh, joy.

I've been wondering if some snake DNA was mixed into the stem cells from my brother, and if I am now shedding my skin for the first time. Remember Pigpen from the Peanuts comic strip? Everytime he moved a cloud of dust would rise about him -- imagine that was skin flakes and you get the picture -- gross...

We have a meeting with a transplant coordinator tomorrow and my doctor on Thursday. I guess it takes time for some of these test results to come back and be analyzed. If all goes well, we should head for home on Friday.

Well, my fingers are starting to crack again from being used and I need to get my beauty sleep, so I will call it a night.

Your prayers give us hope. Your good thoughts give us a great sense of support. Thank you, so much!

God bless and good night,

Mick

Mick McKellar Update -- Day +371

I am sitting here this morning, trying desperately to find something about which to smile. We've had weeks and weeks of wonderful travel weather. Tomorrow morning, early, we are supposed to get in our car and make the 400 mile journey to Rochester, MN for a full battery of tests and to begin my inoculations. Guess what?

Of Blizzards and MOASI

If you live here and looked out your window today, you can see our problem, and not much else. Officially, it's severe winter weather. We call it: blizzard. I have been outside, scooping and shoveling...trying to stay ahead of the steady accumulation. I have listened for the far-off sound of snow plow, but only detected a faint, distant laughter on the wind...mocking my picayune effort to prepare and maintain a "breakout" area in front of my driveway.

Snowing today would be inconvenient and leave us with only the worry that no snow plow will come and we would have to chance a breakout (with an old Focus, no less). But no, the storm will taper off this afternoon, and start up again after midnight, into tomorrow and because it will mix with lake-effect snow will worsen then. Lovely.

What else could spoil this idyllic scene? Friday evening, I was in the emergency room at Portage Health again. I could not move my left arm and could barely walk. My face was swollen around (and inside my mouth) so that I could not eat. My gums were so swollen it felt like all my (remaining) teeth were abscessed. My fever spiked to 101.5 degrees F. Oh yes, my rash returned to full bloom after weeks of losing ground to the steroid cream. What happened?

My doctor referred to it as the Mother of All Sinus Infections (MOASI). In the CT scan, it looked like there wasn't an open cranial cavity that was not packed tight. Little wonder I could not even let my teeth touch without sharp stabbing pain. I was in so much pain that my blood pressure soared to 205/92...a new high for me. My rash was literally on fire. When they tried the new temperature sensor, the one they slide over your forehead and by your ear to sense your temperature, it read 105 degrees F! When they double checked it with a sub lingual thermometer, it was a more respectable 98.7. My liver functions were tanking. I was a mess.

The treatment worked...

Tylenol (lots of it), intravenous antibiotics and fluids, oral prednisone, and finally two injections of some blessed, wonderful pain killer brought me down from a fiery flight into a maelstrom of pain...to a level tolerable by hypersensitive old curmudgeons like me. Then, they advised us that we needed to get to Mayo Clinic on Monday...as I need treatment unavailable locally.

Decisions, Decisions...

It is now near 10:00 PM and I had a long talk with the folks at Rochester Methodist. Final decisions on our departure tomorrow have been delayed until tomorrow morning, when I can talk to the physicians in the BMT Unit.

So, tomorrow morning, folks...the saga continues...

God bless and good night,

Mick

Mick McKellar Update -- Day +365

Wow! Tomorrow is the anniversary of my blood and marrow stem cell transplant! I have survived one year from the day I received stem cells and T-cells from my brother, Kevin. As I was planning how to celebrate and commemorate this milestone, my cadre of redneck T-cells decided to mark the event with the quiet fireworks of a skin rash...from face to feet.

Resistance is futile...(I hope)

For just over three weeks, Marian and I have been sharing the joy of massaging triamcinolone (steroid) cream into my skin. For the most part, my skin has responded by clearing up and/or peeling off. So far, just my forearms and the tops of my feet have resisted the soothing and healing effects of the steroid cream. Except for that small area in the middle of my upper back (the one I cannot reach without dislocating my shoulder), the maddening itch has scaled back to a general annoyance. Why is it that the worst itch is always in the one place you cannot scratch?

Despite testing my temperature at least daily, no hint of a fever has been noted. I have noted a slight soreness on the inside of my cheeks and I am keeping an eye on that nasty little occurrence. I even slept until after 9:00 a.m. today, with only one excursion (at 5:30) to the water closet downstairs. Sleeping through the night is a good thing...

Intrepid walker?

I'm not certain how intrepid I can be at this point, but I did manage to walk 2.5 miles today...I just had to enjoy that grand weather. Yesterday, I enjoyed an outing with Marian and our friends (the Kunnaris) from down the street...we took a ride to Eagle River (MI) and watched the deer chomping down on some apples in the park. I took a couple of photos, and I just loved this one deer (probably a young buck, by the look of him) who was busy telling off the other deer...advising them that the apples were his and he did not want to share.

On the road again...soon...

We're hoping for great weather next Monday. If all goes well, by this time next Monday, we will be in Rochester, MN for a lot of tests and my inoculations.

God bless and good night,

Mick

Mick McKellar Update — Day +359

Encounter with Efflorescence

The battle was joined ten itchy days ago, as my visage transformed from prison pallor to pretty pink to ridiculously red. After nearly six months, the RASH was back...and this time, it itched! The radiantly red skin rash spread further than last time, reaching my feet and my face. It was toasty to the touch, tender to the slightest brush of clothing or bed sheets, and it screamed to be scratched -- which hurt like the dickens as it temporarily relieved the prickling tickle.

Medical science rode to the rescue with the same formidable weapon as our last epic battle...triamcinolone cream...a soothing application of steroids to tame the flames and cool the creeping and crawling of my epidermis.

I am pleased to report that the enemy is in full retreat...not retired from the field, but in disarray and fading from view.

Numbers Game
More blood tests were done yesterday, to track the attack -- most likely an outbreak of Graft vs. Host Disease -- and determine if my liver or kidneys were once again being set upon by renegade redneck T-cells. My doctor called this morning to report that all the numbers looked good...hemoglobin at 11.9, white blood count at 6.4, and platelets at 169,000. The liver function and kidney function numbers were all normal. Apparently, our battle was merely with the surface fleet.

Just a week away...
Next Tuesday, February 21, 2012 is the anniversary of my blood and marrow stem cell transplant -- one year since I received the gift of life from my brother, Kevin. I am still working on how to commemorate and celebrate this great gift. One thing is certain...I don't want to celebrate by scratching...;-)

It's late and I gotta rest.
Tomorrow's another day,
To live with passion and zest;
To love, give thanks, and to pray.

God bless and good night,

Mick