Best not to do the math.

This week by the numbers:

Days with medical/medical related appointments: 4

Hours (including drive time) spent at the hospital: 32

Miles drove: 376

Bags of platelets: 4

Units of blood: 3

House sold: 1

The anxious, tearful wait for the bone marrow biopsy.

Friday late afternoon as we drove the 100 miles towards Charles City, towards four cats and four recliners to choose from, I could only stare out the window and cry. It was one of those cries without thought attached to it, without just one reason - a soft, gentle, sweet release. Of the many shifts within me since the relapse, my need for asking why has evaporated. Easily, things can be. Where there was once a wall between my voice, my desires, and my action there is now the thinnest of veils. She (my body, my spirit) needs to cry, so She does. No questions asked. I can crave cream of wheat without checking the ingredients and nap without apologizing to my company. We move together as one and we do it in itty bitty increments. To run the numbers on a Monday that added up to those stats above would disrupt my spirit, would rebuild the wall. So we remain together in a conversation of what we need all day, little actions, little yeses that are really little acts of love.

I marvel at how this way of moving through the world has opened up a series of miraculous help. Head shaking “can you believe our luck?” help from all around us. There is the miracle of the urgency we felt to move to Iowa. The timely call I made to the University of Iowa to set up remission care that usually schedules three weeks out but “there is an opening tomorrow for Dr. Mou”, the lymphoma specialist and who is the most present, connected, emotionally wise, and wonderful humans/doctors we’ve met. We met and established care with him five days before the relapse. There were the miracles of the offers that fell through on the house that led to an offer from two wonderful people excited to love our house in Oregon as we did. The miracle of how our friends connected to pack our things when we were in the thick of our darkest days. Those connections led us to a stranger who is now a lifelong friend driving our life in a UHaul truck across the country, helping us unpack and move into the storage unit when arriving in Cedar Rapids this week. The miracle of CAR-T, a potential transplant that gives me a 50/50 shot at permanent remission, will be approved for coverage by my insurance as of April 1st, 2022 - almost to the day that I need it.

Then there is the miracle that when I had a bone marrow biopsy three weeks ago 75% of my cells showed lymphoma and as of the bone marrow biopsy on Thursday only 1.2% of my cells show lymphoma. The doctors are floored; it shouldn’t be working and certainly not this fast. This miracle opens me up for new options for a transplant including stem cells using my own cells. Thursday afternoon we met with Jim, the nurse liaison responsible for sharing the nitty-gritty details of each transplant option including the side effects. He handed us the brochures and covered the basics of what lies ahead. Regardless of the transplant, we will be in-patient at UI for an average of 20-25 days. Each week I’m there will be purposeful. The first week I’m stripped down to nothing, the second I’m given the transplant, the third I’m watched carefully until I’m strong enough to be released to the world for another eight weeks of needing a full-time babysitter, unable to drive, and my symptoms needing a careful eye.

When Jim left, different but equally gentle tears fell. I’m really, really scared. Not of the existential stuff or the will it work or not stuff. I’ve made peace with all of that. For the pain. For my dear, sweet body and for all I’m asking from Her - for all she has already been through. For all that I’m asking from Evan, from Mom, from my in-laws - for their pain, their fear. For the helplessness, all of us, including you, will feel. Evan held me, he reminded me what good hands we are in, how strong will just keep looking different, how strong we are, that I am not alone. I heard him and held him too.

Two cute lil baldies working on our Malcolm Gladwell 10,000 hours of mastery in how to wait in a waiting room.

Back to the hospital on Friday joined by Mom in the infusion center. This relapse has brought the mystical, the miracles, the grace, the beauty, the connectedness, AND a lot of anger and annoyance. After years of trying to block anger or think I’m failing as a person for feeling it, it’s a relief I am easily able to let it flow through me just the same as the tears and love and intuition. At this point, we’d spent the whole week at the hospital, gotten all kinds of blood product - hours in infusion and waiting rooms. This was supposed to be a routine Friday blood test, a quick trip. In our hopefulness, we made plans, I know, a risky move in this era. The carrot on the end of the stick for this week was a hot stone massage. This battered body needed some physical tenderness.

We waited for the short 15-minutes for the blood test to come back and, there it was, I was at critical levels. Hemoglobin: 7. Platelets: 20. Neutrophils: .9. Okay, okay, it’s 9:30 AM and we’ll need an infusion - SURELY we can make the 2:30 PM hot stones. Ninety minutes we waited for the one person to talk to another person and add me to the infusion schedule. We waited for the thirty minutes to be called back to infusion. We waited for the thirty minutes for the platelets to arrive. Platelets take an hour, one unit of blood takes two hours. We ain’t gonna make it. Immediate tears, these of anger and disappointment. So much waiting, so much out of my control. Can I not make any plans? Can the person not call the other person sooner? AHHHH!!!

I burn hot and fast. The minute I’m shown the bag of platelets, I snap out of it. The generosity, the love, the miracle that is receiving the blood given freely of others. I’m transported to prayer, to thanks, and always to more tears - back to the same soft, graceful, gentle ones from the car. I like to send bright white light to whoever’s blood this was, that they feel some peace, that their wishes and prayers and answered. I like to imagine that all the good in them is transferred to me and that the best in each of us are connected forever. Mom and I took naps together and chatted and did an in-depth review of our granola bar. We had a lovely time. I rescheduled the massage.

Now we have a weekend of cats, sweatpants, naps, college basketball, and omnipresent candy bowls always stocked to the brim. We are spending zero time doing the math for next week. The only math that matters, the only number that matters, is ONE. This is the number Evan and I say out loud in bed every morning when we turn over and smile at each other. We get one more day. We want more, there will never be enough. But for now, one will do.

We get another one (from my point of view - featuring GB)