Oncology Update

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 but my body isn't cooperating.  Just the thought of setting up gear, equipment or tools to start a small project is enough to wear me out!  

I've also had problems with swollen painful joints since my first bout with COVID almost three years ago.  Most of the time I feel like this is behind me now but it tends to return whenever I do get a little bit active beyond my daily physical therapy.  I've always experience joint pain along with bone pain with this illness but what is new is the joint swelling.  The bone and joint pain I've had throughout this illness has not subsided at all.  I'm so used to the constant bone pain that the pain oftentimes does not register with my overall awareness and evaluation of my health.  Fatigue is really my primary complaint though.  Oh...  and my breathing hasn't been great either which certainly could be contributing to the overwhelming fatigue, I suppose.

One key sign that I'm experiencing more pain than usual on any given day is that my mood changes.  I become very short with little to no patience for anything.  This significant change in mood is the primary sign that perhaps I'm not feeling as well as I had thought.  It makes me pay more attention to how I'm actually feeling and to reevaluate how I am feeling.  After consciously evaluating my pain, I quickly realize that this is why I'm being so short and have little patience.  It is funny how the brain can adapt to sort of pushing the pain out of my mind even though it is always there.

As I mentioned in a previous blog entry, I had already been notified by my oncologist recently that my white blood cells are elevated and that there is a problem with my red blood cells too.  Also, one of the major markers for my Systemic Mastocytosis has been steadily elevating further and further out of normal over the past few years.  This should be held in check with some of my daily medications but my medications don't seem to be able to keep up anymore.  I'm already beyond maximum dosages for all my medications so there isn't much that can be done in the way of medication at this stage of the illness, unfortunately.  

We need to keep a close eye on my test results because this illness is a life-threatening condition causing sudden idiopathic anaphylaxis and vascular collapse as well as the fact that Systemic Mastocytosis can progress to Mast Cell Leukemia and is also closely related to other aggressive leukemias.  This means that we really need to keep up on continued testing.  On the positive side, my test results aren't close to what would be seen in these leukemias just yet.  My test results are gradually worsening but I am being told they are not in a danger zone yet that meets diagnostic criteria that would classify my illness into a new stage.  That is certainly good news but it doesn't help with my daily management of this illness.  

My clinical daily symptoms as well as my lab results that are elevated are in line with what we might expect from a slight to mild worsening of my mast cell disease.   Since my last hospital visit before Thanksgiving (maybe a month ago at this point?), I had been waiting to hear whether my test results had deteriorated enough to warrant further testing of my bone marrow again.  My oncologist contacted me about a week ago to tell me that she feels I am still considered to be in a stable position so we will hold off on further testing or in making any changes in my daily treatment.  

In the meantime, my oncologist wants me to contact her any time my symptoms take a significant nose dive.  Admittedly, I'm a bit lax on that after struggling with this illness for two decades so consequently often have an attitude of "I'll feel better after some rest and extra medications".  This "extra medications" treatment is about at its limit at this point though so, I suppose, this concerns my oncologist.  Plus, my lab results keep inching closer and closer to that threshold that really is already very close to where I am now which would classify me into a worse stage of the illness.     

Although it is a bit disheartening and deflating to see my test results continue a slow trend more and more out of the normal range, there still is some good news in that these results have not yet reached a new threshold.  Now I can focus on enjoying this Christmas season as best as I can rather than thinking about more hospital visits, more tests, and more medical worries.  I'm happy to put all invasive testing and new treatments on hold for now...  again...  and, instead, focus on Christmas and the few months beyond.  Being considered healthy enough to be capable of focusing on a few months rather than just today is huge and a very good thing.  

Now...  to just keep COVID out of the house this Christmas season too...