Day Twelve - Monday, September 14, 2009

Monday, Sept. 14, 2009

Dearest friends and family,

Truly, we are on the “one day at a time” track here in the Knight Bone Marrow Treatment Unit at Oregon Health Sciences University. I arrived  Saturday morning (while Scott and Pete drove South) with time to spare before the medical team's morning check up - to give Reido a thorough Mama-Once-Over (hugs, kisses, more hugs) and sit down to read through the copious notes that Pete had taken each day of his shift. Each entry recounts new information, medical terms, treatment suggestions for a variety of different “issues” that arise during chemotherapy, and reports of Reid’s interactions, questions and general progress. (For those of you who know how adept Pete is at note-taking, you will appreciate as much as I did, the nth degree to which he took his stenographer’s task.) Since my departure five days previous, I was tremendously heartened to see my boy smiling and laughing with cousins, the color up in his face, and that familiar glow in his eyes indicating attention and acuity that had been sorely missing. It was such a relief to be back in his presence, as I'm sure you all can appreciate.

So, here's some news to share:

One of the biggest issues late last week revolved around clearing the strep throat infection and getting Reid to take in more calories. Not surprisingly, as the throat pain subsided, the willingness to swallow increased, yet the chemo periodically makes him nauseated. For a few days, the docs were considering prescriptively inducing more appetite. Finally, rather than reenact an old Chech and Chong movie, Reid pulled it off on his own (although he’s still not packing it in the way fellow skiers have seen him eat between races). So, he eats - pain free - at last.  I’ll digress a bit here to note - that because his immune system is so fragile, Reid is on a “low bacteria” diet, which crudely translates to: Nothing living. YIKES! It’s a true conundrum. After all these years of feeding him yummy healthy fruits and veggies to keep him big and strong (and fight off nasty dragons like...cancer, not to mention the common cold), we’ve been sitting here for over a week with the LOW-BAC menu from the OHSU cafe selecting canned peaches and sandwiches sans lettuce. As it turns out, we weren’t quite given ALL the options in the food department - as we learned yesterday from Tim, the cool weekend nurse, that if we bring in fruit to the nurses - they’ll peel it for Reid (hence all the potentially harmful stuff will be removed) and allow him to enjoy the season's harvest. Tomorrow I’ll be out selecting magic mangos and apples from the nearest Whole Foods store.

Current challenge number two, the aforementioned nausea, is a fairly common side effect of chemotherapy. It’s an easily treated discomfort, although treatment can have other results - like sleepiness. And so it goes. The very first afternoon we were here (Sept. 4), Reid and I met one of his medical team who said to him, “I’m going to want to see you out walking as much as possible; if you stay in bed, you’ll act sick and be sick, and so I want to see you moving.” Of course at the time Reid was pretty wiped out by the strep and not interested in doing much of anything. As he has progressed through his treatment, the theme of movement has come up again and again. He is encouraged to take walks around the unit (a big loop through the hallways of this floor) at least three times a day. Well, with the throat cleared up, the food on board and plenty of us nagging (oops, I mean - cheering) him on, he’s been great about getting out there and strolling. Turns out though, walking while on chemo causes Reid motion sickness. Once we figured out this cause-effect, the nurses put a small motion sickness patch - ala pressure point therapy - on Reid.  Of greater importance today, as he officially completed the induction chemotherapy as of 4 PM Sunday, is the fact that movement therapy becomes an essential component in Reid’s healing. We’ve learned that as his body begins manufacturing new blood cells (post chemo), one of the things that he can do to stimulate that process is move. Walking, exercises in bed, gentle yoga.....all of these will increase cell production.

Reid is motivated and intentional about what comes next. Post-chemo days may be uncomfortable as his body strives to rebuild everything that has been wiped away. His physical body may feel very different, right down to food tasting unusual as even his taste buds are changing. This will be tough work for  him, no doubt about it. I wrote last week about my vision of Reid “laying down new cells” much like he would lay tracks down a powdery slope of fresh deep snow on his skis - making the run down the mountain look easy and effortless with only the practiced skill that a true alpine racer exhibits. This next couple of weeks is that time. As you all hold him in your hearts, I would ask that you particularly send him infusions of strength and grace as he creates new pathways of health in his body.

As for the rest of the family, Pete and Scott and I, respectively, are stretching to pin down alternative definitions of “normal” as we each figure out details such as: the back and forth travel across the great state of Oregon, manage family and community communications, maintain our various life/work commitments and try to keep this rocking boat steady for two younger sisters. We are getting tons of help, and we are very very grateful. If the start of the soccer season was an indicator of the Sarah and Ginny’s wellbeing, then we’re on track so far: Virginia went out to the pitch on Saturday and celebrated life with three soundly delivered goals (known as a hat trick) in the match’s first half, and Sarah thumped one of her own in the net later that afternoon in a game for AHS. The solid foundation of unconditional support that you, our families and friends, are offering and continue to bless us with is immeasurable. It’s uncanny how the gifts and acts of kindness that emerge are always the exact perfect thing - filling the need or open niche - at the exact perfect moment. At a time when I most would like to sit knee to knee with God to ask some very direct questions, I cannot deny the presence of the Divine in all of the love that surrounds Reid and our family. I thank you, truly.

I’ll try to keep checking in. It’s lovely to hear from you all via email, and I read many of them to Reid when we’re together.
~ All will be well. Love, Martha


P.S. Chronology of a situation like this is tricky - especially when the writer would like to include a few random things. I hope it comes as no surprise to learn that yes, even in the face of what feels like a supremely unfair "shit happens" situation - there have been moments of humor and profound joy. That said, here are a few random things about these past ten days: 1. Entering a large hospital far from home on the Friday before Labor Day weekend is not advised. 2. Watching a movie entitled “Pooty-Tang” really is as ridiculous as it sounds; watching it twice takes the cake! (Thanks Clay) 3. Reid’s room can house two cousins, a second cousin, two second-cousins-once removed, an uncle, a stepdad and a dad - and it sounds like a cocktail party. 4. The Mercy Flights crews are outstanding - and that business about turning your cell phones off inflight is an absolute myth. 6. Beautiful artwork and windows everywhere offer solace. 5. Dee Christlieb, who has been our family general practitioner since Reid was a toddler, is the doc who caught this. If you see him, give him a hug - or four. 6. “Family” is not defined by blood, names, history or legal documents. 7. Laughter, dancing, tears, naps, and warm food actually do make a difference.