Scattered Thoughts . . .

L ukey's hockey team, the Black Bears, had a game against Stowe this past Sunday.  The game was at the Waterbury ice rink so we made the very short drive to the rink to watch Lukey and visit with the rest of the family who attended the game.   Lukey has been playing the goaltender position for the past few years and he is getting good at it!  He has a lot of saves each game and this game was no different.   Even though this Stowe team was a tier above Lukey's Black Bears team, it was a one-sided game in favor of the Black Bears.  This is a pretty solidly balanced team.  Their offensive line is good with some fast skaters and pretty good stick-handlers.  Their defensive line does a good job.  And, Lukey's goaltending has proven to be difficult to penetrate by most teams his age.   I don't often shoot video at his games but I attempted a few clips this time.  Shooting video is tough at these games for a few reasons.  First, the rinks are tight which means you are close to

I 'm lagging behind in keeping this blog updated which, for some reason, seems to be the norm for the past year or so.  Perhaps it is due to overwhelming fatigue.  Whatever the reason, here is an update to my recent oncology care blog entries I wrote in the past month or so. My overall health over the past year or two has been gradually worsening.  This rather lousy overall health has become my new normal so I'm kind of used to it now.  Plus, it changed so slowly that it was difficult to see.  Since I'm used to it now, I have been having difficulty in recognizing it as an everyday thing and a new normal.   The biggest concern and perhaps the most debilitating concern has been overwhelming fatigue.  On far too many days, I'm ready to head back to bed long before lunchtime and sometimes right after leaving the bathroom getting ready to start my day.  On these days, I have difficulty keeping my eyes open and I have no energy.  My brain wants to do things that interest me b

We had a very quiet and peaceful Thanksgiving this year.  The food was pretty good for it being a pretty vile bird, the drinks were cold and refreshing, and the decorations were festive.   Unfortunately, Liza's kids were sick so they stayed at home which made for a very quiet day for us with a lot more food than we really needed.  Whitney and Ellie visited with us for a while though which was really nice.   We usually decorate for Christmas through the long Thanksgiving weekend but, this year, we finished all our Christmas decorating by the day before Thanksgiving Day so it looks like Christmas in our house.   As many already know, I truly despise  Thanksgiving so having the house completely decorated for Christmas helped my mood and attitude significantly since Christmas is my favorite time of year.  Maybe we should do this every year...  Thanksgiving Day as Day 1 of Christmas.  Hey, if some guy in a big goofy hat with symbolic pseudo-power at The Vatican can move Christmas to sui

I started our Thanksgiving prep today by making some homemade cranberry sauce.  I had that completed by 9am which was nice!  I was up at around 4am this morning because I was having great difficulty breathing.  I was actually having a very involved dream about being unable to breath and when I awoke I instantly knew why.  I really  was having difficulty breathing.  I had to get up to use my inhaler and take some other medications.  I was able to fall back asleep for a bit but I really did not get nearly enough sleep last night and what little sleep I got was while not getting enough oxygen.  Instead of sleeping later this morning, I chose to get up early and start some Thanksgiving prep work in the kitchen.  I ended up having difficulty breathing on and off all day long.  I'm hoping tonight will be better than last night so I can get some much needed rest.  Of course, it is good to breath easily too!  Breathing difficulties are a far too common problem with my illness.  Fortunatel

W e've had a number of Leviton smart switches in our home for quite a long time and, until the past year, they worked flawlessly.  However, one by one, they started failing or burning out about a year ago.  This wouldn't be so bad if we were still able to use them manually but that wasn't the case for us.   The switches failed completely. Having smart switches has always been a major first-world convenience for us especially when we travel.  No matter where we are located, we can still control our lights.  Actually, our thermostat and cameras are also able to be controlled no matter where we might be visiting.  This is a tremendous plus as far as we're concerned and especially when we travel in the winter when we must be sure our furnace is keeping the house above freezing. So, a significant number of our Leviton smart switches were broken and this morning I decided to replace four of these smart switches.  It should have been a very simple little project but it turned

A fter checking the weather forecast for the next 10 days, we decided that today would be the best day to be outside putting up our outside Christmas lights.   We started by trimming a couple of trees around the house.  Some of the branches were touching our roof after our last snowfall a few days ago so these needed to be cut back.  On the positive side, these branches were now available to be used to make a big wreath for our front door.  We make a large wreath every year out of the branches that need to be trimmed off the trees.  So, the first thing we did today was to cut some branches and make a wreath.  This is the most back-breaking work so I wanted to start with this and get it out of the way first.  My spinal injuries have been screaming since moving some snow the other day.  It's been keeping me up at night and I cannot get comfortable.  Well...  not even close to comfortable...  at rest, the pain is around a seven on the 10 point pain scale.   We don't use the front

Our youngest grandchild spent some time with us this past weekend and we had a good time with him! He is beginning to talk now.  Whenever he wanted something to eat, his word for that was "mom" which is very much in line with what my first psychology professor had taught me many decades ago...  mom = refrigerator.  When he wanted another Graham cracker, "mom"...  when he wanted more Chex mix, "mom"...   Although he is still not talking much, he had no problems calling out my name but, then again, "papa" is a pretty simple word to repeat for a toddler.   On and off for very short periods of time, he played with some cars, trucks, airplanes and some typical toddler developmental toys.  We had pizza and then he had some bathtime with a few bath toys.  He would occasionally sit next to Gee or me on the couch but, just like with playing with his toys, that never lasted long before he was up and trying to get into something else that he should not be i

I t looks like we missed our surprisingly long window of unseasonably warm weather in the 70s everyday so we chose to decorate inside the house for Christmas today rather than the cold damp outdoors through this weekend.  Decorating outdoors was our plan but, honestly, I have no desire to be out there when the temperature gets down to around 40 degrees.    I was thinking that the unseasonably warm weather we've had for months would continue through Thanksgiving.  Why would I think the temperature would drop suddenly to early winter temperatures?   We've had weather consistently in the 70s for months so I was expecting the everyday highs to slowly and steadily drop to the 60s for a bit...  then the 50s...  then the 40s.  I thought I had all sorts of time before needing to decorate outside.  Instead, we went from the 70s everyday to the possibility of snow for the foreseeable future.  I think our outdoor Christmas decorating may be minimal this year.  Certainly the weather plays

I was imaging the photosphere of the sun one morning and noticed that a sunspot eerily resembled some skin cancer that I had around that time.   The sunspot was approximately twice the length of the diameter of Earth.  My skin cancer was only about 8mm in length.  Additionally, I was seeing a shocking similarity between granules on the surface of the sun's photosphere  (each approximately 1000 miles across)  and the speckled UV damage of my skin (approximately 1-2mm each)! I've always noticed that, in many ways, the astronomical world of vast and infinite space resembles the microscopic world.  Shapes, networks and structure are comparable.  Both are equally vast but the scale is mind-bogglingly different.  When I see how vast space really is, it has always made me a little queasy and gives me the heebie-jeebies!  This incredibly vast difference in scale between space and humans is stuff I've actually had nightmares about since very early childhood.  Actually, my earliest

I was notified this evening that another test result was posted in my medical chart.  Compared to how bad it could be (and what I have seen in other patients), this test result isn't horrendous but it is indeed bad with a very bad trend.   For the past five years, this particular number has elevated farther and farther out of normal range.  This particular number is directly related to my mast cells which are the cells that aren't behaving normally due to my illness so this test result is a primary marker for my rare myeloproliferative disease.  My current treatment drugs are supposed to be keeping this number as close as possible to the normal range and keeping my mast cells as stable as possible so this number  should be trending in the other direction.  Instead it is elevating farther and farther from normal. This test result, by itself, is likely enough to be a concern but when we also look at the other test results that I wrote about previously showing one problem with my