Mick McKellar Update--Day +103

Not the forest primeval, but shady...

The intrepid walkers meandered on down to the world's slowest pharmacy this morning, after a leisurely breakfast. My doctor called in a prescription for fluticasone (flonase) yesterday, and we expected to pick it up. However, it was cancelled by my insurance as having been already filled. Apparently, the set up for mail order meds processed faster than we thought. They offered to let me purchase it for the full cost, but $65 plus is a bit much for a nasal spray. 

I'm hoping I can manage without the flonase for another six days, until I get home and (hopefully) my medications are waiting for me. (Sniff, sniff...)

The weather here is sultry, currently 88 degrees, sunny, and very humid. I cannot spend much time in the sun, so we try to find paths with lots of shade from buildings and trees for our daily walks. I wear plenty of sunscreen, a mask, dark glasses, and a large floppy hat. With my rolling bear gait, even in this town I stand out a bit.

Unusual dreams

Along Cascade Creek

At home, I have walked through the Estevant Pines, an original growth forest, and swear I am being watched and surrounded by whispers just out of my hearing range. The place just feels so alive and ancient at the same time, it never fails to touch my soul.

I wrote a poem about the dream. Green Dream is on my poetry blog: Out of My Mind, brand new and just posted. 

It is very late, twilight has long ago transitioned into night. I want to thank you all for your communications, prayers, and good thoughts. We hope to head for home on June 10, if all goes well.

God bless and good night,

Mick

Mick McKellar Update--Day +102

Intrepid walker, dressed for heat...

The intrepid walkers did manage a trip to and from Rochester Methodist this morning, to visit at the world's slowest pharmacy and try to get a refill on my Flonase. As luck would have it, there was no refill ordered on that medication and my doctor had to call one in for tomorrow. We visited the Mayo Store to get a new dressing for my catheter, which we hope will be the last one. If we are released to go home next Thursday, they will pull the catheter and we won't have to worry about dressings for it anymore.


It rained as we walked back, and stopped as we arrived at the transplant house.


l was covered in sunscreen today. The temperature easily reached the mid-90's today, and I guess the humidity was nearly there as well. It was brutally warm outside -- midsummer weather. Marian was exceeding happy and I was wilting. We sat and rocked on the veranda for nearly an hour, while I tried to identify the make and model of each car passing the house. It's not an easy task anymore, and I am amazed at how many vehicles passed by before a duplicate make and model crossed our path. What a bewildering variety of cars, trucks, vans, minivans, crossovers, etc.! Not the most exciting way to pass an hour, but the breeze was nice and the company even better.


The sun did not seem to cause any problems with my rash, so I assume the sunscreen worked well. We have noted no change for the worse in my condition. I was fatigued after the walk in all that heat, but felt pretty good after rocking in the shade until lunchtime.

Cascade Creek, not Day Dream River

After lunch, I decided I should write my journal entry (or at least get started) and maybe work on a poem or two. So, I clambered into my recliner, put my ancient laptop on a lap-desk in my lap and opened my mind to day dreams, relaxing a bit to let the ideas flow. Almost as though I blinked once, I woke up more than two hours later. My fingers will still on the keyboard of the old Dell and the cursor was still blinking in the upper left corner of my text editor window, patiently waiting for my mind to return to my body. 


The experience is a bit frightening, as I don't remember drifting off to sleep so completely and so quickly. I read in the literature that this kind of thing happens to BMT patients all the time and that afternoon naps are not only common, but recommended. However, the books don't talk about accidentally hitting the off switch or a pause button somewhere. Spooky.


So, I wrote a poem about being caught in a Nap Storm. You will find it on Out of My Mind, my poetry blog.


Our friends took us out to dinner again tonight and we had a great meal and a wonderful time talking about going home. We thank them for their kindness. We also thank you for your communications with us, sending bits and pieces of home in your messages, cards, letters, and calls. Your prayers and good thoughts are powerful medicine and a source of hope. 


God bless and good night,


Mick

Mick McKellar Update--Day +101

The intrepid walkers walked at 5:30 AM, just as it was beginning to rain this morning. So, we scurried to the Dan Abraham Healthy Living Center, about three blocks from the transplant house, and connected with the subway system -- to walk underground all the way to Charleton Lab A. We had umbrellas, but the wind was freshening and we did not wish to arrive late. We returned by the same route.

Intrepid Walker at the Mural

A couple of hours later, our second sojourn to Rochester Methodist was under sunny skies and much warmer temperatures. Although it was supposed to reach 90 degrees today, I don't believe it ever much exceeded 80. We met with our pharmacy coordinator, who is helping us set up mail order deliver of most of my 16 medications. We met with the transplant coordinator and with my doctor. 


Mostly Good News

Intrepid Walker with Flag in Head

The best part of the news is that we will likely be headed home next Friday -- June 10. We have no appointments with any medical personnel or scheduled tests until June 9, when a sort of final check will be done. If all is OK, we can leave.


My hemoglobin has stabilized and even rose from 10.3 to 10.4 without intervention. This is a good sign. They reduced my Prednisone dose to 5 MG per day, my insulin to 20 units per day, and my cyclosporin to 175 MG per day (from 200). My rash is still there, but seems to be getting a little better. Otherwise, I'm in pretty good shape for someone as delicate as I've become.


We tried to listen to instructions carefully, but after the words, "Release you to go home..." were spoken, it was hard to concentrate. I guess they are giving us a week to work it on our own and see if we can screw things up. If we manage not to mess with the important numbers, and I don't develop some new and interesting challege (like growing a second head), we should be ready to rock and roll Friday morning.


Days +0 -- +99


I started working on a special Google site to house all my previous journal entries from Day 0 to Day +99. The site is partially built, but I have a great deal of editing to do, and did not have much time today. (We returned to the transplant house at about 4:00 PM after much ado about refills at the world's slowest pharmacy...). However, once completed the archive will be accessible from my 100 Days Plus blog page. The site is called 99 Days Plus and may be found at: https://sites.google.com/a/mmnetwork.info/99-days-plus/home


Please note that it truly is under construction and revision and editing. 


Hanging on to one day at a time...

The surprise was clearly on my face...

Going home is exciting and wonderful and comforting AND not yet a fact. I've been living one day at a time for months now, and exciting possibilities threaten that attitude as much or more than worrisome ones about tests and outcomes. We may be going home on Friday, June 10, and the natural tendency is to begin living that reality, when it is not a reality, but only a possible future. One can forget to live all the days between now and then, feasting on expectation and fasting on experience. 


We have an entire week with no medical appointments ahead of us, and I intend to live each day of that week, as I have been doing since May 26, 2010, as though it were my last day on Earth. That doesn't mean I won't plan and get ready, but I plan to experience that time interval and enjoy living the journey to June 10. At least, that is my intent and will be the subject of my prayers.


I wrote a poem this afternoon about living one day at a time, called Banquet Without Price. It appears on my poetry blog at: http://mickmckellar.blogspot.com/2011/06/banquet-without-price.html


The sun is gone again and twilight is fading into night. Once again, I thank you all for your prayers and good thoughts. Once again, I thank you for your cards, letters, e-mails, and calls. We hope to come home soon, but love to feast on those pieces of home you send our way.


God bless and good night,


Mick

Mick McKellar Update--Day +100

Intrepid Walker

 The intrepid walkers ventured into the bright sun and warm breezes this afternoon. We intended a short walk downtown and back, Marian in the full sun and old Darth Mick flitting from patch of shade to patch of shade. The plan fell apart when we reached Broadway and decided to walk south. About four blocks down, we crossed to a small plaza and access to a walkway along the Zumbro river.


As we meandered along the river walk, I could hear splashing water ahead. The west wall opened to reveal a mural with a small series of waterfalls. It was a complete surprise to us and a welcome break from the concrete and steel. The rest of the walk was pleasant, even though it was mostly uphill...


Day 100 Status


The first 100 days after a blood and marrow transplant are spent very near Mayo Clinic. It is considered the acute period for possible Graft vs. Host Disease (GVHD) problems, required close monitoring and quick action. However, that does not mean that at Day 100, you get to go home. 

The walk along the Zumbro

We will be here for at least another week, primarily because of my ongoing battle with a GVHD rash and the mysterious murder of my red blood cells (hemolysis). Although my hemoglobin has stabilized, 10.3 is not a great number, and this after two units of  whole blood. The recalcitrant rash refuses to retreat completely and changes on a daily basis -- sometimes better, sometimes worse. 


I also have steroid-induced type II diabetes, and must test blood glucose and inject insulin each day. I'm down to only 10 MG of Prednisone each day and hope to get off both the steroids and the insulin ASAP.


Moving to a blog


I have been using my Midnight Poet mailing list to post these journal entries, both with and without poems. I still plan to post my journal entries, but on a blog site (http://100daysplus.blogspot.com/) called 100 Days Plus -- Life after a blood and marrow transplant. I will send the link to the blog on my mailing list, whether or not I have a new poem to include. It will also make posting to Facebook much easier, with a simple link to click. 


The blog will allow me to include photos and additional references, as well as links to my poetry (http://mickmckellar.blogspot.com). I am also working on including the text from my previous postings in an online archive, accessible from the blog site. 

The waterfalls at the Mural

A nice visit


Friends from home, visiting Mayo Clinic for tests, also visited with us this evening and took us to dinner in celebration of my Day +100. We had a great time catching up on what's been happening at home and enjoying a fine meal.  The restaurants in Rochester recognize immediately that anyone wearing a Darth mask needs relative isolation, and they find a nice corner booth or isolated table so that I can remove the mask long enough to eat. 


It was a nice end to a fine day.