(Un)Prepared for this Moment

I was mentally shaken with the uncontrolled pain Brendan experienced during the middle of the night.  The feeling of desperation after dose after dose of pain medicine failed to make any difference in the level of his discomfort.  Did I say discomfort?  It was outright, writhing, gasping pain.  Pain that he felt he couldn't tolerate for any more minutes.  It was only after an emergency call to Primary's on-call doctor at 4 a.m. that we found the right medicine and the right dose that would make a difference.  Then Brendan slept.  

Brendan slept until it was time for blood draws at 10 a.m.  He was oblivious to the flurry of activity from his oncologist -- and the social worker -- and us -- and the home nursing staff -- as we all tried to figure a way to make sure this scenario didn't play out again tonight -- or ever.  It was determined that we would put Brendan on Hospice care.  Then he would be able to get the 24-hour immediate pain care he might require.  He would also be able to get a pain pump if necessary.

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Since beginning this roller coaster adventure, the shower has always been a safe place to cry --- unheard by others -- wet tears falling without anyone seeing.  In the hospital, it's the only private place you can fall apart and put yourself back together without an audience.  (At the hospital, though, you don't dare take too long in the shower because you know other moms are waiting for their chance at a good cry too.)  Well, the shower works well at home too.  Today, in the solitude, I contemplated the significance of what we were about to do.  

Eighteen years ago, our family of 6 had moved back to Utah from West Virginia. We were planning to build a home, so moved into the basement apartment of my grandparents home for what we thought would be a short interim -- (but we ended up living there for two years.)  Two weeks after moving in, my grandfather was diagnosed with liver cancer.  He chose to forgo treatment and was put on Hospice care.  At that time, I didn't know what Hospice was.  But I soon learned.  And I was so grateful for the knowledgable, attentive, kind nurses, and the measures they took to provide comfort and relief for my grandfather.  I was also amazed at the support they were to my grandmother.  

In the shower today, I realized that that experience years ago helped prepare me for this moment today-- when papers had to be signed and decisions made regarding the future of Brendan's care. 

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Riley came for blood draws.  He brought all the paperwork to be signed with him.  We started.  And my heart began to falter.  Tears stung my eyes and I fought hard to maintain composure.  Another surreal moment of my life came as we had to discuss resuscitation options with Brendan.  (Try explaining that to your 12 year old -- and wait for an answer as to what he would like have happen in such an event.)  Brendan said he would have to think about that one.  Hmmm, me too.  

I didn't take pictures this morning.  It was the first time I didn't want to.  I didn't have words and I didn't want pictures.

Then the moment passed.  

Word came from the nursing service to Riley that our insurance would not cover radiation or blood transfusions while Brendan was on Hospice care.  And they would not cover Palliative care.  Moments later, a call came to me from Brendan's oncologist at Primary's.  They felt his radiation treatment tomorrow at Huntsman should continue, and they felt we should have the option for blood and platelet transfusions for the time being.  So the Hospice documents were shredded and life returned to the "normal" were are used to once again.

Brendan felt better and better as the day went on.  The Norman's came to visit!

 Uncle Shad and his family (and a couple cousins thrown in for good measure) came to visit from Arizona.

 Brendan enjoyed an orange ice cream bar.  (His first food that doesn't start with a "P".)

 Then he ate pizza and pears for dinner.  As the day wore on, Brendan felt better and better.

We leave early for a clinic appointment and radiation therapy in Salt Lake tomorrow.  Hopefully, they can radiate his shoulder so the pain there will subside and give him some relief.  Depending on how many spots they radiate, it may take more than one day.  I didn't get the CBC (complete blood count) results from blood draws, so I'm not sure if he needs blood or platelets tomorrow.   But that's pretty much life as usual.   We know how to "go with the flow."

Having experienced a "trial run" of signing up for Hospice care, I think I will be better prepared for when the time comes for it to happen for real.  I guess I'm getting better at feeling "prepared" and "unprepared" (at the same time) for what is happening in our lives.