I Use To Think

There was a time, not so long ago, that I use to think.

I use to think...

....If I stopped for one minute, in the middle of any given moment, dread would gather around me, like seaweed that catches hold of your ankles on the boggy banks of the ocean, dragging me into the current.

....If I mentioned too much about the disease I love to hate, we would become it.  It would become me.  Somehow, the boundaries of what it could own would be blurred and lines would be crossed and we would become one.

....If I dared to speak anything close to the truth of how it feels to be a caregiver to three chronically ill children, I would be nothing more than a victim.  A sad, pitiful story that grates on the ears of anyone listening.

....If I felt nothing at all, I would still be better off than feeling even a twinge of sorrow, sadness or fear.

....It can't get any worse.

.....I had it all figured out.

But now, I know differently...

....I know that everything catches up, whether I stop in a moment, a memory, a mess or keep running from my life.

....I know that this disease is very much a part of us, more than we care to admit or notice except in a moment when we are forced to look it in the eye.  We can pretend it has no hold on our hearts, but it does and it has changed things for good...and for bad.

....I know that I'm tired of playing make believe and dressing up my truth and things are about to get real here and maybe that is a story more pitiful than the disease itself.

....I know that feeling nothing at all is worse than feeling the moments of sorrow, sadness or fear because there's still joy and bliss and content that happens in the folds of all the grief.  Those are a balm, feelings that need to be felt.

....I know things will get worse and I know I don't have it all figured out.

We've been in Salt Lake this week.  Cardiology for Spencer.  Hematology/Oncology for the three musketeers.

I couldn't make it for Spencer's cardiology appointment mostly because I didn't want to make it.  The Doctor has acted condescending and irritated at the past couple of appointments and I simply didn't have the emotional where with all to feel vulnerable.  I didn't have the guts to watch the disappointment on Spencer's face when they told him again that he needed to get use to passing out on a regular basis.

This time was different...A new Fellow was on board.  He made helpful suggestions and the doctor listened.  Apparently, there is a function on the pacemaker Spencer has, that will detect when he is about to pass out, and it will force his heart to 100 beats per minute and keep it there for a pre-determined length of time.  They also agreed to take out the loop recorder that has been monitoring his heart for just over 3 years.  Spencer is over the moon that he gets a piece of bulky hardware removed.  That simple procedure will be scheduled soon and hopefully, not as traumatic as when it was installed.

From a Hematology stand point, everyone is stable-ish.  Counts are no better but no worse either.  Abnormal and mutated cells that have shown up on the peripheral smears in the past, were not there this time which is awesome.   We are going to forego bone marrow biopsies for another year.  Spencer has been sick for a solid three weeks and with only a week or two between viruses, they are checking his immunoglobulin levels.  He has always teetered right on the edge of normal.  If he is below normal, he too will have to start plasma...we will wait and see.

Today, I had planned to work and get caught up...always trying to catch up.  Instead, I hung out at the doctor with Shelbie and they sent her to the hospital for testing.  Her leg was so swollen, she couldn't walk or bend her ankle.  She had to cancel her photo shoots.  It appeared to be a blood clot in her leg.  She had very poor circulation and a lot of pain behind her knee.  No blood clot, just a bad case of lymphodema.   In two weeks, we go back to Salt Lake to see a vascular specialist who will consider re-routing her lymphatic system...I didn't know that was possible.

That's it for now...We have had some significant developments in life but I will save that story for the next post.


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