October 18th: Meghan's stem cells are in the bag.......

Meghan's first shot of neupegen was on Sunday soon after her flight arrived.  She was exhausted so she napped while I worked out at the hotel (yes - you read that correctly.....). She woke up with a bad headache and over the evening had gradual increasing discomfort in her back.

She had additional injections on Monday, Tuesday and Wednesday mornings - following which she felt really tired and slept for a while each day.  Hard to tell how much of this was due to the medication and how much was baseline tiredness coupled with a red-eye and a time zone change.  In the afternoons, we walked the Freedom Trail and explored the city with Meghan's former BYU roommate who now lives in Boston.  On Monday she went to FHE with a singles ward in Boston and encountered a few people she knew from BYU who are here working on Romney's campaign.

Her bone pain has gotten progressively worse daily - a lot of chest pain last night.  This is all due to stimulation and "swelling" of the marrow. 

Every evening as she groans in bed beside me I feel so conflicted as a mother.  Part of me has my fingers crossed that her discomfort means her marrow is churning out lots of lovely little stem cells ready to be adopted by her brother to keep him alive indefinitely.   Part of me wishes I could do something to ease her pain (she refuses pain meds).  All of me is grateful for her willingness to do this.

Yesterday (Wed, Oct 17th), I drove back home to be with the girls while Tim was on his last out of town trip for a while, and to bring Ryan and Sophia back to Boston today.  Both girls slept in my bedroom last night, and the dog whined out in the dark for my attention.  I fell asleep surrounded by kids and a dog who needed attention.  After Kaia got on the bus this morning, we hit the road for Boston yet again.

Ryan and Sophia went to the Boston Temple, then we went to pick up Meghan.  She had a large bore IV in each arm - one in the right antecubital (in the bend of the elbow), the other in the left forearm.  She couldn't bend the right arm all day, making it pretty painful by the end of the day.

The medicine which prevents clots during the process also lowers the body's calcium.  This causes tingling in the fingertips and lips, and muscle cramps.  It was pretty pronounced in Meghan's case.  She didn't tell them about it until it was pretty bad, thinking it just came with the territory.  They slowed down the filtering and gave her calcium in her IV to minimize it, but she was still pretty miserable.  And then there was the necessity of using the bedside commode to urinate.......

We all went out to dinner - Ryan and Sophia took us to a Mexican restaurant - and then to a local cupcake shop (famous for a TV show about it's founders).  Meghan toughed it out, but feels pretty miserable.  I insisted she take some pain meds tonight and she's sleeping while I type this.

Tomorrow she will have another 8-10 hours on the machine collecting stem cells.  And Ryan will have his central lines placed and be admitted for the barrage of chemo and total body radiation over the next week to wipe out his marrow before receiving Meghan's stem cells via IV next Thursday. 

I've grown pretty "hard" over the years.  Empathizing with my patients and caring deeply about them, but keeping up enough of a wall to protect me from the bad stuff.  And this is bad stuff.  Keeping busy helps me protect myself from the pain and keep functioning.  Hanging on to that "to do" list.  It's as if I'm not really experiencing this - like I'm at a distance watching someone else go through it.  Sometimes that distance and tendency to block out the pain makes me wonder about myself and what I have become.  I wonder what it would be like to have a couple days of pitty-party, but fear opening that flood gate.  My style has always been to simply push through the hard things and get to the other side.  For now, I'm simply trying to make the right decisions in the balance between meeting the needs of all my kids and my hubby, and to provide support as best I can to Ryan, Sophia & Meghan.

Tonight as I listen to Meghan's quiet breathing as she sleeps across the hotel room, and picture Ryan as he will inevitably look next week, and remember the girls clinging to me last night, the tears are welling up.  Strangely, it's not just for the pain, but also for the love.

"there must needs be opposition in all things" (-from The Book of Mormon)

---Barb