Latest Hospital Visit

I'm adding an update at the top of this blog entry since I was notified of most of the laboratory test results shortly after writing this blog entry.  There are no big surprises so far in these test results so that is good.  We're still waiting on the results of the newest type of test that is mentioned below.  Honestly, I really don't expect any life-changing revelations to come from that test either though.  The severity and frequency of anaphylaxis that my body is enduring is a bit of a problem though.

We had to head up to Burlington a few days ago for what we thought would be a quick and uneventful visit to Oncology for me.  This is an every-six-months visit (well...  it is supposed to be every six months but the Oncology department is so busy that they are scheduling about nine months out at this point...  the soonest they could get me in for my next appointment isn't until June, 2025).  Since we're at oncology approximately three to six times a year due to regular visits, extra visits, emergencies and additional tests, we were fairly confident that this would be a fast in-and-out appointment.  

Even though I've had some secondary health problems since my last Oncology visit (COVID again, lingering long-COVID problems, a tick bite and illness, passing a small kidney stone with urinary tract bleeding), I didn't really have any new news to report or discuss about my primary illness so we figured we would be in and out of the hospital in less than an hour.  I was quite wrong in this time estimate though.  We arrived at lunchtime but didn't leave the hospital until the end of the business day.

Also, just because I didn't have any new news to report about my symptoms, difficulties and everyday problems, doesn't mean things have improved.  If anything, the combination of me getting up there in years, developing secondary illnesses so often and this chronic, incurable illness has made it quite difficult to accomplish much.  That being said, I'm definitely not ready to just sit back and wait for the grim reaper to tap me on the shoulder.  I'm continuing to live my life as fully as possible.

During this hospital visit last week, my oncologist let me know that she had conferred with a doctor at NIH (National Institute of Health) specifically about my case.  A few things came from that.  First, she learned of a newly approved drug that might possibly help me if my labwork indicates I qualify for this treatment.  Another thing that they discussed was seeing a specialist in Boston again, if/when necessary.  I expressed my concerns about traveling to Boston...  quite simply, I do not travel well in a car.  My health does not do well in a car whenever I need to travel longer than about 45 minutes to an hour but the trip to and from Boston I have always found to be particularly grueling, frustrating, painful and, quite honestly, a pretty pointless waste of what little energy I have.  I'll travel if I have to but I'd definitely prefer to avoid it.

We discussed some new testing.  Then we discussed new drugs to address possible positive results we might find in this new test.  Once again, we're looking at a prescription cost of $20,000+ per month...   yes...  each month.  Fun.  And, probably criminal.  

This sort of exponential markup in retail cost isn't Capitalism nor is it even about basic supply and demand...  it is criminal corporate greed.  

My oncologist seems confident that she could get my insurance company to cover this cost though so that is good if it is time to head down this road.  I definitely do not agree with the cost of this medication but if I can get it covered by my insurance, we'll have to give them the money they likely do not deserve.  

Before heading to the lab for bloodwork testing, we did this new test in the examining room.  I also had to fill out some paperwork and pay for the test in advance since it is not covered by insurance.  So, we did what needed to be done in the examining room before we even left for the lab for the remainder of tests. 

We briefly discussed some potential side effects of this new drug.  As bad as that potential is, the drugs we discussed in my previous visit were far worse.  We'll deal with side effects if and when we get there.  

I didn't have any problems discussing any of this with my oncologist,  What did begin to concern me (which is highly unusual since I've been dealing with this for more than two decades) was that my oncologist expressed serious concern about the frequency and severity of my episodes of anaphylaxis.  

She reminded me that each episode of anaphylaxis is very punishing, demanding and stressful on my body and that there is only so much of this my body can handle.  This clearly worries her and, quite honestly, her concern was sort of a stark slap in the face waking me from my daily normalization of all aspects of this incurable illness.  I've always known that my body can only handle so much of this...  stuff...  but this is yet another thing that I have normalized over time.  Honestly, my oncologist's concern during this visit did worry me a bit so I stated, "Well... now I'm a bit worried".  

What could help with this is to get back into my daily physical therapy to build up my strength.  Being infected with COVID for the fifth time has really caused my physical condition to deteriorate significantly through this pandemic.  I have no doubts that I'm currently in a period of being in the consistently worst shape of my life and that is compounded by the fact that I'm fighting to survive a debilitating illness.  The stronger I am, the longer I should be able to survive these episodes with anaphylaxis.  Of course, exercise and raising my body temperature also triggers anaphylaxis in me so there is a fine line between building up my strength through exercise and knowing when to call it a day and rest.  

Now I await for the test results.