Scattered Thoughts . . .

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