June 18, 2022 Update - DAY 46

 Energy, Momentum, and What Not

Have you ever been stuck in the snow?  You got your foot on the gas but you ain't goin' anywhere.  Tons of energy being used but you are just spinning your wheels.  Despite the excessive expenditure of energy (and really expensive gas), you have no forward momentum.  You stop a few times to reassess the situation, maybe change up your approach a bit, you know, rock your vehicle back and forth, stick something under your wheels.  Even though you may advance a bit, it feels like you've gone nowhere.  You may even back up a bit to get a run, but you get stuck again right where you started.  Yeah, I think we have all been there both literally and figuratively.

It's been over a week since we provided an update as I really wasn't sure where to start and for that matter finish this post, but here we go.  

Get in, fasten your seatbelts, and hold on for dear life.  

Now that I have you scratching your heads and wondering what the heck I am talking about, let me start by saying Jackie is feeling good and we have been able to "break her out" for a few hours her and there to get some fresh air.

She has had good forward momentum in some areas and has spun her wheels in other areas.  Her haematologist is quite happy with her cell counts as they are demonstrating that Jackie's new system is working how it's supposed to. But unfortunately, she continues to have issues with her stomach and intestines.  She seems to gain traction for a few days and makes some progress, then it is like she backs up to get some momentum but then gets stuck at square one again.  Actually she disagrees, she said she's only going back to square two.  I'll let her have that (pick your battles fellas).

The long and short of it is, her gut has been through a lot and it is going to be a slow process for her to get it back where it needs to be.  This isn't anything new for her as it is somewhat similar to a severe Crohn's attack.  Just like being stuck in the snow, you need to let off on the gas sometimes and just inch forward very slowly, if you are over zealous, you will spin your wheels, waste gas and get nowhere.

So for now, Jackie is back on some IV medications and just started IV nutrition again.  She has had to reinstate the JPS, but doesn't need it too often (please refer to the last post if you do not know what JPS is).

Right now, we are trying hard to find that fine line between optimism and complacency (I use this term because allowing optimism to cloud your perception and not changing what is actually in your control,  may lead to complacency).  We are doing everything we can to ensure she does not spin her wheels, as is her team. Although we were really hoping to have her discharged last week, she is where she needs to be and we will stay the course.

Thanks for reading

Mike