Health Update

Last night I received a short note from my Oncologist about one of my most recent test results from tests done a month ago.  It is a relatively new test and so had to go to a separate lab.  

I didn't see this note from my oncologist until we were heading to bed so this new information kept us up for another hour or so while we talked about it and what this possibly means for our immediate future as well as for the bigger, longer-term picture.  

To be honest, I really wasn't expecting anything other than negative results from this new test so I have to admit I was a bit surprised to see that this time the results were positive.  

This is a relatively new test that I had to pay in advance fully because no insurance companies are covering it just yet.  Although a relatively new test, it is a test result that can explain critically and chronically poor health like I am experiencing.  Naturally, this test also provides us with not only an additional diagnosis but with a significant clue as to which direction to go with additional testing.  All my current regularly scheduled testing will remain the same but we'll need to add more tests due to this latest test result.

I've had this illness for more than two decades now and I often forget that other patients struggling with this same illness haven't been as fortunate as I.  I've known far too many other patients over the decades, particularly in the beginning, to have succumbed to this painful, dangerous and difficult illness.  Some passed suddenly, some passed after struggling in the hospital for a period of time, others have passed trying new trial treatments.  

Back in the beginning when my illness first developed, very little was known about it other than a few sentences taken from old medical textbooks.  In fact, it took a team of doctors about five years to finally accurately diagnose me.  Now there are far more tests and far more reliable research and information available for managing this illness but the big picture is still quite dim.  It is still quite debilitating and dangerous but it can usually be managed well enough to stay alive. 

The thing that is concerning is that I am on more medications today than all of those other patients I've known to have died from this illness.  Of course, maybe this more aggressive treatment is what is keeping me going everyday.  Every year, we have more research under our belts, more information available and better testing.  Oh...  and, there are more treatment options today than ever before so that is a bit of good news.  

My oncologist indicated that there will be no immediate changes in my current treatment but this new information garnered from this new test result will warrant additional testing as it fits into our schedule.  The additional testing may provide the diagnostic basis for justifying a new treatment direction.  The good news is that a new treatment option targeting this one small piece of test result might help us stabilize my health a bit and that would be quite nice since I have really been struggling in recent years.  (I really should write more about how poor my health has been in recent years.)

Over the past year and a half (since my last bone marrow biopsy), we've seen little clues in this test result and that test result that hint at more serious secondary diagnoses and possibly a worsening of my primary illness but this latest test result will likely change my life for at least a short while.  All the old diagnoses and treatments still apply to my daily life but we're beginning to see other things which might be making my daily life even worse in recent years.  I still do have the incurable chronic and debilitating primary illness but my overall health and daily life seems to be worsening hence this extra new test.  Well, my health does not "seem" to be worsening but is definitely worsening over time.  

First we saw one small almost meaningless change in one test result...  then we saw another little change in something different that didn't mean much in the big scheme of things...  then a few relatively menial findings in my bone marrow...  and now this new information due to this latest test which could explain my worsening poor health as well as all the little changes in my regular testing.  

One of the places we're seeing worrisome problems is in my DNA.  This could be hereditary or it could be due environmental exposures (ie, chemicals, carcinogens, etc).

So, there is a high probability that my treatment may change drastically in the coming months.  I say "drastically" because of a ridiculous prescription cost as well as the time that may be needed at the hospital for these on-going periodic treatments.  Also, this new information may also pick up the tempo on my bone marrow biopsy schedule.  

However, this new test result does provide some explanation for my consistently poor health so I suppose that is good.  

More bone marrow biopsies on a more frequent schedule does not thrill me all that much (that last one was long and brutal and I still have occasional pain at the site of that biopsy).  An additional and more aggressive treatment doesn't thrill me all that much either.  What this is indicating for sure is that our schedule for the next few months is going to be very heavy in hospital visits.  

At this point with the information we have currently, it's looking like this does not change my prognosis much, if at all...  certainly not a better prognosis but not necessarily a worse prognosis..  so that is good.  Then again, as my health worsens, that does not bode well for my prognosis.

My oncologist is already quite nervous about my health, I think, because we seem to be in uncharted waters.  My daily treatment is already more aggressive (higher doses, more frequently) than almost all other patients in an attempt to keep my body stable.  As my strength decreases as I age, she is also nervous about my body being able to find the strength to rebound from dips in my health.  She has expressed this concern more than once but definitely expressed this again when we were at the hospital last month.  

I'll continue doing what I've been doing...  stick to my medication schedule, adapt dosage as necessary, continue physical therapy, and continue accomplishing whatever I can whenever I can.

UPDATE:  September 13, 2024 - My oncology nurse wrote me this morning to send me a courtesy update.  

We've been waiting on my insurance company to give approval for...  hmmm...  I'm not even sure what we're waiting on them to approve.  It could be pre-approval for tests.  It could be pre-approval for treatment.  Either way, my next step will be testing.  Hmmm...  maybe there is a specific expensive test that needs pre-approval.  I really don't remember though.  I could go back to my notes and previous correspondence with my oncologist but, to be honest, I don't particularly care.  When a decision is made, then it is time for me to act.

I wrote her back letting her know that, unfortunately, I'd be shocked if my insurance company makes a decision in less than two weeks.  So, I expect them to respond sometime later next week at the earliest.

It is nice that my oncologist's office is keeping me updated though.