Saturday, September 17, 2016

Grace and Time

In July and August, I had my first round of high-dose chemo, and it was probably the hardest thing I've done in my life. The particular regimen killed all kinds of fast-growing cells: it screwed up my skin, gave me serious sores in my mouth and all through my GI tract, and wiped out my immune system completely, giving space for the bacteria that normally live in me in balance to go haywire. They had harvested bone marrow stem cells from me in advance to rebuild the marrow, but the period between when they put them in and when they started producing was really awful.

About a week after my immune system started to recover, I was eating enough to be off of intravenous nutrition and felt good enough to go off the "pain pump" of on demand pain medication: progress enough to get me out of the hospital.

After the chemo, I had two weeks of outpatient follow-up. At the end of that time, they'd decide whether I was ready to go back in for my next and final round of chemo or go back home to Utah for a while to recover first. Being a "just get it done" sort of person, I was hoping to be healthy enough to just go straight into the second round so I could back to my normal life more quickly. But though other systems had recovered well, my platelet count was still at transfusion-level, so I got sent back for more recovery instead.

It was a little weird, at first, to be home. I was happy to be back, but couldn't get my mind away from the struggle of active treatment. I wondered if that was like what soldiers feel if they get leave home between tours: not knowing quite where you belong or what mode your body should be in.

It was also really good to be home, though, and not just for the comfort of being with my own space--however odd it sometimes felt--and with the people I love most. By coming back when I did, I got to be part of the family rhythm at an important time. Just after I got back, Elijah started school, Kira started Junior High, and Leif started a twice-a-week preschool. Though I was still definitely in recovery, I could sit and work on homework with them, listen to them talk about their days, get their paperwork done and permission slips signed, and generally help them settle in to their new worlds. It meant a lot to me to be able to do that. 

My time home also happened to coincide with a concert at BYU by Leslie Odom Jr. (who had just moved on from the role Burr in the obsession-inducing musical Hamilton). Nicole had bought two tickets--for herself and a friend she had hoped might turn out to be me. I got out of pajamas and into regular clothes for the occasion. His vocal performance was both impressive and fun--and it was really cool to hear a performer I respected share some of his thoughts on art and faith between songs. Over the course of the concert, Nicole and I each happened to start a cheer that spread through the crowd. That was a nice feeling. And after it was done, we got to drive home together and breathe the same air and hold hands and I felt very good about being in the same state. 

Even at home, my platelets stayed quite low for a while and my return to treatment in Texas ended up getting delayed a week. At one point, that would have frustrated me. But that last week was when I got to see Mark and Julie Magleby, who I'd been aching to see since getting home but had delayed contacting for a while because I couldn't imagine doing anything when I saw them but crying. And having the extra week also meant that the day before I left, I got to go to the wedding reception of Rachael Anderson, who'd helped me process my initial cancer diagnosis eight years ago and helped me through the recovery then.

We hadn't seen each other much since, so it was Rachael's first time meeting all my kids. And being with friends who had known me when the cancer started, I thought again about another timing that had worked out: the initial treatment didn't affect fertility and I'd these beautiful children, then Nicole and I had decided after some difficult pregnancies that our family was complete--just before the cancer came back and needed treatment that almost certainly would affect my ability to have more children.

In most cases, life has a certain rhythm and sickness feels like an interruption. I certainly have felt that way at some points in my treatment--like I'm in exile from my regular life. But this last trip home, and especially that moment at the wedding reception, were reminders that there has also been a certain grace to my life between treatments. God gave me a window to have my children. God gave me time to help them start school, and extended that time long enough that I could see and be strengthened by visits with old friends. I even felt well enough at one point to do several days of work from home for my job--and I finished all of the high-priority projects for my talent set a day before my energy levels dropped again and forced me to focus on my body instead.

I'm back in treatment now and trying to trust. Trying to trust that whatever happens: however long treatment and risk extend, or even if treatment and subsequent chance aren't enough to fulfill my three-year-old son Leif's recent prayer that "daddy can not die until he's a great-grandpa," I'm trying to trust. That there is a grace to time, that God will give me all the time I need--sometimes by making it flow in a different way than I first think I want.


  1. trust... such a beautiful/difficult life lesson. I was just thinking about you yesterday. xox

  2. Beautiful. Learning to trust is so hard sometimes. Sending prayers your way..



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