Wednesday, February 29, 2012
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.
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,
Posted by Mick at 12:47 AM
Sunday, February 26, 2012
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?
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?
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.
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,
Posted by Mick at 10:37 PM
Monday, February 20, 2012
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...
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,
Posted by Mick at 8:36 PM
Wednesday, February 15, 2012
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.
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,
Posted by Mick at 12:52 AM
Sunday, February 5, 2012
I guess you could say we've gone from simple complaining to full Red Alert. The kids arrived about 3:00 PM on Saturday (02/04/2012) for an impromptu early birthday party, and upon arrival, my youngest grandson, says: "Grandpa, why is your face so red?" At which point, everyone gasped (in unison) and I ran for the bathroom.
Quick as a wink, the party was put on hold and we drove swiftly to Portage Health Emergency Room. They drew blood, not once, but twice. Did a chest x-ray. Did urinalysis. Poked, prodded, and finally called the BMT desk at Mayo Clinic. Looks like my rash is back. There is nothing systemic wrong with me. Liver and kidney screens were normal. They checked my drug list and found nothing to cause this. The assumption is that GVHD may be back and playing with my skin again, but that has not been proven. We're trying steroid creams again, and I have to call Mayo tomorrow -- they may want us back down there, pronto.
There's not a lot of pain and only minor itching. I feel pretty weak, but did not and have not run any kind of fever. I am hoping we can control it here -- with the steroid creams.
Home again, home again, lickety-split...
The doctors prescribed the same steroid cream we used in Rochester, and sent us home. Fortunately, I still have some of that cream. We resumed the party (for my grandson's birthday) with a very subdued (and well greased) lobster-man in place of noisy old grandpa.
This morning, my rash was less angry-looking than yesterday, but still very warm to the touch, and this time (unlike last time) there are a few places that it itches. I feel rather weak and tired, but not sleepy.
Well, I have to get more rest than usual, so...
Good night and God bless,
Posted by Mick at 8:55 PM
Wednesday, February 1, 2012
Fountain of Phlegm...
However, I am duly impressed by how much nasal phlegm I can produce in a day. I am certain I must have emptied my head several times in the last eight hours. Oddly, my breathing is not blocked or restricted, however, like a leaky faucet...the dripping continues.
Marian is fighting it. Amanda is fighting it. Nearly everyone I have called or contacted is fighting some version of this nefarious nasal malady. Some are blaming it on the warm weather, activating molds and mildews that are normally dormant in cold and dry winter weather.
I have consumed a great deal of chicken soup and gallons of black tea, green tea, coffee, and water. Warm liquids seem to help with the cough, but also seem to stimulate the sinuses. Sleeping is difficult and often interrupted. Still, I am hoping to get it under control soon.
For the past week or so, I've been editing my poems into a single collection (or series of collections) to be stored (and backed up) in one location. I have also begun re-editing my first 100 days journal into a single e-book form. It is slow work, because I tire easily, but it feels good to finally organize it.
The biggest job will be my collected poetry. I finished 2005 and started 2004. I wrote and shared 106 poems each year, so there is plenty to review.
I had better get some shut eye, so it's off the bed. Thanks for your prayers and good thoughts. Good night and God bless,
Posted by Mick at 12:21 AM