Scattered Thoughts . . .

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

I'm having difficulty finding words and thinking clearly this morning so I'll keep this blog entry relatively short.   Back a few weeks ago, Sheila and I headed down to Northfield to meet with some good friends who now live in another state.  They were in town for a family event and, fortunately, had a couple of hours to squeeze in a lunch with us.  Naturally, we wished we had far more time with them but we understand how hectic a family visit can be.  We don't see them nearly often enough so it was great to connect with them for lunch. No matter where we go, I always take at least one camera with me.  The weather was beautiful on this autumn day so I shot a few photos from the passenger side of our car while Sheila drove.  I haven't had the energy to wander around solely for the purpose of landscape photography so this is my mode of operation for this type of thing lately...  no tripod, handheld camera, in a fast moving car (or train).   The telltale sign of being in a

I 've really fallen very far behind in writing blog entries and sharing photos lately due to really lousy health for much of this year.  Well, actually, I've fallen behind due to lousy health through much of the pandemic!  I've honestly lost track of how many times I've had the virus at this point.   Frustratingly inaccurate COVID tests have also clouded my memory of how many times I've actually been very sick.  You need to test about six times before you get a positive result which pretty much renders the tests useless.  While people are testing negative (IF they even have enough of a moral compass to test at all), they are going to work and socializing and spreading the virus even more.  This pandemic has become a bit of a blur of illness, death and nothingness so I honestly can no longer remember how and when I've been sick.  This period from January 2020 to today has been a blur of nothingness.  What I do know for sure is that I've been down far more mon

A s I mentioned in a previous blog entry, I had another appointment with my oncologist the other day.  This morning we took a trip up to the hospital to run some tests. The other day, my oncologist and I discussed my current health, obviously, as well as some new treatments that have very recently been FDA approved for my rare illness.  These are the first two approved treatments specifically for my rare illness.  I spent some time over the past two days researching these treatments and discussing them with Sheila. First, let me start by saying that I'm fairly confident that my health is not  at a point where I think either of these drugs should be necessary.  My oncologist is simply trying to help improve my daily life.  She also wants to ensure that we aren't putting my health on the back burner instead of quickly jumping on treating something that is treatable but could quickly become life-threatening if left untreated.   One of the newly approved drugs to treat my rare illn

I had an appointment with my oncologist this afternoon.  The appointment itself was rather uneventful which was nice but a few things were discussed that concern my doctor.   I've always struggled with overwhelming fatigue with this rare illness but the past few weeks have been significantly worse and consistently worse.  I've also had some of my usual symptoms come and go during this period.  The fatigue has been the most noteworthy though and seemed to concern my oncologist more than anything else today. I would get up in the morning and head to the bathroom, as usual.  By the time I would leave the bathroom after washing and brushing my teeth, I needed to lay down again.  I would nap but when I would awaken a few hours later, I still felt like I hadn't slept at all.  The few hours a day that I would manage to be on my feet were spent bouncing from one thing to another, unable to stay focused on any one thing.  So, not only have I been struggling with overwhelming fatigue

Sheila did too much lifting and playing with a toddler on Saturday and has had serious back problems since then.  Actually, her back has gotten worse with each passing day since Saturday.  This morning was the worst it has ever been. I came out of the bedroom at 6:30 this morning to find Sheila lying on the living room floor in the dark.  If she hadn't spoken up in the dark to warn me that she was on the floor, I would have tripped over her, landed on her, and likely made her condition even worse.  That certainly wouldn't have helped either one of us! Apparently, she had previously made it to the bathroom, in pain, but trying to sit on the toilet put her back into an intensely painful spasm.  She managed to slowly, over the course of the next half hour, crawl her way back to the living room where I found her. At this point, Sheila couldn't get to the bathroom nor anywhere else.  When I helped her to carefully and excruciatingly make her way back to the bathroom, just sittin