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