Stories and a new week

Nov 29

The Monday after Thanksgiving always feels like an abrupt jolt.  We had a wonderful holiday with lots of family coming into town to celebrate.  Our family rocks. Greta came bounding into my room this morning dressed in a sleeveless spring dress, asking me to button her up and tie the bow.  To her credit, she also had on white sweater tights.  I told her she looked beautiful, but that she would need to wear a cardigan on her arms so she had both arms and legs covered.  She brightened with this news (I thought it might have gone the other way); I think she was excited about adding another accessory.  I also told her she was going to have to wear gym shoes with her outfit because it’s gym day.  In response to this condition, she grinned, clicked her tongue, winked, and shot me her finger guns.  Then she whirled out of my room to the bathroom to begin working on her hair.  This girl is something else. As I walked out the door with Greta out to the bus stop this morning, she was dressed like it was Easter Sunday.  She took ten steps out the door, turned around with a horrified look on her face, and said, “I’m freezing!”  She immediately marched back inside and said, “Mom!  I need pants and warm things!  Is it okay if you have to drive me to school if I miss the bus while I change?” From the wink/guns to the indignation, I love watching this girl move through the world.  She does it with flair. Last Tuesday, twenty minutes before school let out for Thanksgiving break, Maren had a run in with the gymnasium wall.  It was significant enough that I got a call from the school nurse who outlined the concussion symptoms for which I should be on alert.  She came home with a big (big) goose egg on her eyebrow, and we have been watching it turn from blue to purple to yellow to green to black as the holiday progressed.  We nick-named it “the be-donk-a-bonk” because an injury of this magnitude warrants a personality to match its appearance.  Maren currently alternates between whining and giggling about it.  She’s so nine about...

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The best beams

Nov 21

Today was chemo day, so I spent the bulk of the day in the chemo chair.  Blessedly, in my office the walls have floor-to-ceiling windows behind where the patient recliners are lined up, so the sunshine streams in over my shoulder as I sit and the drugs drip in.  Winter sunlight where the beams cut the crisp air is brilliant and it seems to me to be just the right lighting for the hallowed ground of the oncology suite. The IV poles beep, the nurses bounces from the computer screens, to the carts of needles, gauze, and medical paraphernalia, to the pharmacy room.  They answer questions from everyone: the caregivers, the patients, the doctors.  The patients talk — sometimes hugging, sometimes high-fiving, sometimes joking, always hoping.  The room is still agog with the news of my regression report from two weeks ago; the nurses wink at me with a knowing peace as they step into my sunbeam to reach my IV tubing. I am so entrenched in the story God is writing in my life; when I take time to step back and see it all I am breathless with weight of my burdensome blessing. Each week I see the doctor for a thorough exam, and then I move to the infusion chair.  A nurse accesses my blood and does a blood draw to run a CBC (a baseline bloodwork analysis that gives a decent picture of how my body is functioning.)  For the past year, my blood counts have been in turmoil and declining because of the continuous chemotherapy assault.  This week my bloodwork showed I am severely immunocompromised; another trough in the line of blood chemistry 2016.  In response to the particularly low counts, Dr. Wonderful both tweaked my dosage down, and started me on a prophylactic antibiotic.  I am at high risk for infection and have strict orders to call the nurse during business hours and Dr. Wonderful’s home phone after hours at the first sign of an infection.  My team really is on my case 24/7. Tonight, I’m in the middle of what I call “the slide;”  increasing achiness, a dull headache, shortness of breath (anemic), weakness, shivers/shakes, and ever-lower energy.  I’m fine though: I just had an...

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Squirrel

Nov 15

I feel a little bit like a squirrel.  Like, I just do whatever is immediately in front of me right now. Children want to eat.  Must feed them. No clothes (that I like to wear).  Must do laundry. Fever.  Must sleep. Child crying.  Must hug her. Children want to eat.  Must feed them. Meeting/appointment.  Must get dressed, drive there, be present. Exhausted.  Must rest and try to sleep. Alarm goes off.  Must do whatever I set alarm for: carpool, bus stop pick up, wake up. Children want to eat.  Must feed them. As you can see, these are the non-negotiables… the things that actually have to get done.  And, to be clear, I continue to open my door to reduce the list of Musts: friends are helping with meals, cleaning, and laundry.  Everyone who gifts or serves us is making my role in our home feel far more whole–the value of which is really hard to articulate, but so very important to me.  They also give me the much-needed freedom to engage with things other than the dust in my house.  I can have a coffee with a friend and really enjoy it thanks to the combined effort of my prioritizing my needs and my village supporting my Musts.  My corner of the world is brilliant and beautiful, folks.  Thank you. In between all the things that command my attention, I am continuing to be behind on All the Things.  Texts, emails and phone calls are back-logged and getting forgotten, so please hit me repeatedly if you think I should be responding.  I mean to, but my capacity is just really small some days.  Repeated messages to me do not register as “you’re annoying”; they register as “you really care”, so I mean it when I say try me again.  (And, sorry.  I wish I were more, but this is where I’m at today.) I am working on other nonessential things around the house: a big clean out and organize of our memorabilia bins, cleaning out the guest rooms in preparation for Thanksgiving, sneakily de-cluttering the girls’ overstuffed bedrooms, hand-written correspondence (which I have been generally terrible with for most of the year; ::sigh::), writing projects, and a few other things.  As I...

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How do I celebrate…

Nov 08

How do I celebrate…

As I share my news of yesterday, people keep saying to me, “Congratulations,” which is kind of odd to me because I didn’t do anything.  The day I married Brad would be a good day to congratulate me because I made a brilliant decision and I said I do— a good decision is an understatement!  On the flip side, nothing about my medical status is chosen; this blessing of regression is unearned and unmerited.  Whether you believe it is science and chemo at work, or God’s anointed blessing over my cells (or both), I didn’t do anything.  Dr. Wonderful cringes when people tell him, “Good job,” or “Congratulations,” because it implies that his work is conditional upon the patient response.  His standard of care does not change; when a patient progresses or dies, it is certainly not due to failure on his part.  There is no rhyme or reason why some patients with the same pathology and cancer biology respond to a treatment and others don’t.  This week, after a string of (mostly) unsuccessful treatments, I am inexplicably responsive to this treatment.  Medically, it is statistically unlikely.  I, personally, view it as a blessing from God. Friends keep asking… what am I doing to celebrate?  The truth is… I haven’t done anything different to celebrate yesterday’s good report.  (Well, aside from a tears-of-joy hug for Brad, a happy dance in the kitchen with Maren, and a lot of smiley-faced texting emojis.)  That’s not because I’m not pleased with the results or because it’s not a big deal; I am and it is.  The no-change-in-behavior is more because I. Celebrate. Every. Single. Day.  The condition of my situation — or whatever you want to call it — is that I have very clear perspective on cherishing normal, being present, and focusing on what matters.  As I have navigated the last twenty-four hours and the jolt of regression has sunk in, I simply move with greater ease.  The hard emotions are things I deal with mostly subliminally and unconsciously because, I think, I have so much practice with hard emotions: it’s just me, always quietly squashing the bad thoughts and seeking the good ones as I move throughout my day.  Regression is a breath of...

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Oh, so grateful!

Nov 07

A good day.  A good, good day. I’m on a high after a weekend away with Brad in Asheville, NC.  (I highly recommend Asheville if you into antiques, history, the outdoors and art.)  A bonus for me is that it was well-timed as it was my “good” weekend — the end of the week that follows my break from chemo.  And, I love my husband. Today was PET scan day, so it was an abrupt return to my normal.  All things went smoothly with the scan.  The report was fresh off the presses when Brad and I walked into Dr. Wonderful’s office.  He skim-read the report in front of us: “Decreasing tumor count, decreasing tumor sizes, less metabolic activity, and no new spots.” All the good things, people.  All the good things. I fist-pumped halfway through as Dr. Wonderful was reading, and Brad and I high-fived at the end.  This is great news.  In case you don’t know cancer-speak, here’s a general picture of what I could have heard today: -Riddled with cancer -Progression – increase in tumor count / larger tumors / advancing cancer -Stable – holding steady -Regression – decrease in tumor count / shrinking tumors / smaller cancer -NED/NEAD – No evidence of (active) disease Regression is wonderful; this means I get more time — a most wonderful gift. I’ll be staying on my current chemo regimen because it’s working.  So, as I am navigating the symptoms and challenges this chemotherapy brings, I’ll be doing it with a bounce in my heart.  I am grateful it’s working, and I’m up for the gritty challenge of enduring it.  It’s a relief to go home tonight knowing that I have less cancer in my body than I did three months ago.  Oh, so grateful!  I am praising the Lord for this wonderful news and praying that my body will thrive through this season....

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