Jul 22, 2016 3:15pm (Sara)
Well…this has definitely become “delayed” intensification. I got a call (while at work of course…thank you for the hug Jessica), and it turns out that Oakland is “booked” till Wednesday. So we have an appointment Wednesday checking in at 8:45am for a 10:10am lumbar puncture. Then the chemo infusions. Then the overnight stay to monitor organ function and urine output (hoping for just one night). Then home.
Wednesday will be 12 days after she was supposed to start part two. 12 days. 1.7 weeks. Doesn’t seem like that long but it is feeling like forever. Why can’t 12 day vacations feel this long? When I was on the phone with the nurse, I didn’t cry. I held it together for the 5 minutes it took for her to tell me the plan – or that there is a plan in the works. I some how kept from expressing my frustration (more likely fear) with the feeling of being treated as if we are guests checking into the Circus Circus Hotel/Casino in Reno. Booked? Like a hotel? What? How does that happen? And what does this really mean for Maya? I understand that she needs to make counts and blood recovery can take time. But a 12 day delay due to logistics? Well that just sort of pisses me off.
It is most certainly not the nurse’s fault and she was kind to put me on hold and go ask (for the 4th time) what this might mean for Maya’s ultimate prognosis and chance of relapse. She returned with “in the grand scheme of things, this delay really shouldn’t make any difference”. There’s that word again “shouldn’t”. I really wish they would just say “well, we really don’t know…” because they probably don’t know. They see relapse. They don’t know why it happens. But with a protocol so rigid and scripted, it makes my stomach tighten with fear thinking that we aren’t following this well researched road map exactly. I am aware that is probably the perfectionist in me but…I can’t change it. I can just deal with it.
The 12 day delay is stressful but I am trying to move past the anger and “make lemonade”. We made it up to the lake yesterday. It was wonderful and the weather was PERFECT. I think we found the only few hours of stillness among this summer of wind. Maya and Lincoln got to play with their buddy, Liam. Scott and I got to hang with our buddy, Megan. We all got to hang on a beautiful beach with perfection in the air. Since we don’t live on my favorite piece of Earth out in the sea, my isle of Kauai’i, I’m blessed to have Tahoe in our back yard. 24 minutes from our home to the parking lot at Sand Harbor…hard to stay angry when we are able to enjoy that.
Our appointment is Wednesday but we’ll get Maya’s labs checked at the clinic on Monday. Unless she is fighting some sort of virus, her counts should be golden. I suppose I won’t hold my breath for that though; expectations tend to disappoint.
Maya the dragon is strong and calm. She was ready for a battle…we were all ready to fight beside her…but the enemy didn’t show. Now she is sitting, mindfully perched up on the battlements of her castle glancing out at her lands. She is looking to the future and the looming attack but we know that with extra rest and preparation, she will collide with her enemies with a heat stronger and hotter than the sun. She will be triumphant.
Love is life.