Hard is good. Good is hard.

Nov 10

Yesterday (note: not actually yesterday, this just took me a few days to write), I had a bit of a tough day.  And I pushed through writing about it because it’s important to record the hard things too.  The warm stories make me smile, but I’m not whole without the hard too.  The best life lessons come the hard way, right? I’m physically feeling better.  This is fantastic for me, as I’m used to not feeling well.  The best short explanation I’ve found of living with chronic illness for those of you who really want to know what it is like is from Christine Miserandino’s The Spoon Theory (link).  It’s well worth the read, and I keep meaning to get a poster both for myself and some to donate to my oncology office and the girls’ schools.  In this season, I have more ‘spoons’ in my bank, and it is translating to a higher quality of life.  Yay!  (Read the story!  You’ll be glad you did!)  It’s so helpful to have the people around you understand what you are feeling. To have a bit of a reprieve from the ick brought on by my chemotherapy is like the first warm sunshine of spring.  It’s that wonderful. As one does when feeling well and whole, I decided to exercise, and was ready to do all the exercise things.  At least, my mind was ready.  When it’s cold, I work out at home in the basement with not much more than a balance ball, hand weights, and bands.  As I descended the steps my soul was applauding with praise that I have had no vertigo or nausea for a few weeks now.  Such freedom!  As I went from lift to lift and movement to movement, I transitioned from frustration to disappointing shock at my weakened physicality.  It’s not surprising, per se, but I was overwhelmed with sadness at my weakness relative to ‘before’.  I’ve always used words like powerful, fierce, and strong to describe myself, and yesterday I felt none of those things.  I seemed to grieve each muscle group in turn from biceps to hamstrings, from grip strength to overhead presses.  I was short of breath, and in pain, and...

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A happy heart and a great day

Nov 03

A happy heart and a great day

In the past few weeks, I’ve found these two notes around the house.  The first was written by Maren when she was having a tough moment: ‘Working on a happy heart!’.  She needed space and time, but her self-proclaimed goal was clear.  And I will sit outside the door and pray for that process — the ability to dig out of the hard space and into the light — all day long.  I love that she ended her beginning with an exclamation point: it says, ‘I got this!’  She declares her victory in the process, and so very often the process is the victory.  Proud Mama moment doesn’t even begin to describe how I feel when I see her emerge, transformed by her own slogging hard work to get to a good place in her heart. The second note is Greta’s.  She wrote down her goals (jobs) for the day: piano practice, homework night, dinner (yum).  In the box off to the side, the wrote, ‘Ready for a great day tomorrow.’  Even at six, Greta is clearing a path for good things for herself.  For a girl who loves control, she loves identifying what she can do and revels in her independence. In this note I see her learning to take responsibility for her own great days.  No one can give you a great day: it is a gift you give yourself.  Greta is a maximum kid: she does everything big, and I love that she sets — and raises — her own bar often.  That’s power, and pray over her all the time: Lord let her use her power for good. I wish upon you a happy heart and a great day today. ____________________________________________________________ Medical update: As you know, on Monday I was told I couldn’t start Ibrance on Tuesday as scheduled because my white blood cell count was too low.  (It was 0.8, and needed to be 1.0).  The team suggested I come in on Thursday for a re-check, and I told them would come in on Wednesday because delays in treatment are not my style.  My team goes along with my antics when they can and acquiesced to my bumping up the schedule.  And I asked...

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Cold and memories, old and new

Oct 30

There was much high-fiving on my behalf in the chemo room today.  It is a relief to be on the the treatment my doctor recommends, and — even as I type that — surreal that such a thing could even be in question.  I/We are continuing to work on making contacts and getting advice about what next steps should look like for me. At the same time, there are always emotions running high: one friend was having a tough day and that is always real and hard, one new friend was there and she’s only twenty-seven years old, and one friend I’ve known since my beginning is nearing eleven years stable.  And then there was also my buddy who always falls asleep and snores loudly — haha! We found out that my white blood cell count was low, and I need to delay the start of my next round of Ibrance (oral pills) by a day or a few days so that my counts can rebound.  Please pray that my counts rebound by Wednesday when I go in for a CBC check!  While I was in the office today I got my infusion of Herceptin through my port, and my Faslodex shots in my derriere.  I continue to feel relatively good on this combo, so there is much to be grateful for.  With my low white blood cell count, I’m immuno-compromised, so I need to be laying low and limiting exposure to crowds and sick people.  And — of course — I have a sick kid home today, so good luck to me on avoiding the germs. Halloween is tomorrow, and in true Ohio fashion, the weather is looking less than ideal (COLD, for you non-locals).  I need to write a letter to Ohio about the merit of sixty-degrees-and-sunny weather.  It’s called autumn, Ohio!  I think we’re in our fifth consecutive year of miserable Halloween weather. Maren is trying out for volleyball teams this week: the January to June season is decided this last week in October/first week in November.  She is driving what she wants to do, so I feel good that she’s goal-setting and chasing on her own.  Tryouts, I have confirmed, stink!  It’s hard to be told you’re not...

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Phew!

Oct 23

Late this afternoon, I got a call from one of my favorite oncology nurses.  She has spent at least as many hours as I have (if not more) trying to find some avenue to get me Ibrance over the past few weeks.  “Jen Anderson,” she said.  “Do you know you have good news?” “No,” I said, as I stood in my bedroom, mid-laundry-folding enterprise, and raised a celebratory fist in the air, not yet sure what I am celebrating.  “I do NOT know I have good news.  Tell me, tell me, tell me!” “Pfizer has approved your case; you are being granted the use of Ibrance at least until the end of the year, and maybe part of next year as well!” I did a little jig in my bedroom.  This is such great news.  I, as a part-time stay-at-home-mom and part-time cancer patient, feel like I just got a $120,000/year raise.  It is such a relief that I don’t have to burden our household with a $10,000/month cost for a drug.  Pause for a moment and imagine that yourself: you’re asked to absorb a $10,000/month bill into your household.  Then imagine the relief that comes with the not. Do you want to sink to the floor and cry with relief?  Because I do. I called my little sister first because she’s off in the Caribbean, working on a cruise ship, and about to be out of cell phone range.  She burst into tears, the happy kind.  In my circumstances, I have to make terrible phone calls a lot (cancer progression), so it is exceptionally wonderful to get to make a phone call that causes someone to cry happy tears.  Thank you, Baby Sister.  And, thank you Pfizer. Let’s talk about Pfizer for a moment, because they are the hero of the day.  Years ago, this mega-corporation invested resources in coming up with a new cancer drug for my population (the metastatic population — the ones who are technically not curable), which is a wonderful thing all by itself.  Now, they have also granted me free compassionate use of Ibrance: it’s not FDA approved for my exact type of cancer, but it is Dr. Wonderful’s best recommendation for what I should...

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My loves

Oct 20

On Monday morning when I started my car and drove to my oncology appointment, I saw that my gas tank was full.  I smiled to myself: Brad and I had switched cars for the weekend.  I was off with my sister for hiking and recharging, and he was SuperDad and house project guy at home.  I stopped at the gas station at nine-thirty at night on my way home so that his car would be full when he began his Monday commute.  He, at some point on Sunday, filled up my car for me.  The little kindnesses, the eyes that smile when he looks at me, the tenderness of his touch, the ease, the grace, the little things: these are the things our marriage thrives on.  I swoon.   This morning Greta, wearing her one-piece fleece pajamas with the unicorn hood, climbed into bed with me. “I don’t feel good,” she said in a croaky voice.  ::Fake sniff:: “Oh really?” I said, as I reached my hand to feel her cool, not-even-remotely-feverish forehead. ::Fake cough.:: “Yes, I just don’t think I can go to school,” she bats her eyes at me in a pitiful way and makes a sad face. “Hmmmm.  That would be too bad.  Your friends and your teacher will miss you,” I said. “If you are that sick, we better tuck you back into your bed so you can rest and sleep and get better.” “Is that all I can do?” she says with more coughing and sniffling.  “I don’t think being in bed will make me feel better.” “Yep.  You can sip ice water, and read books quietly if you can’t sleep,” I told her solemnly.  “If your body is sick, we need to let it heal.” “What about if I go down to the basement and watch a movie?” she said hopefully. “Nopity nope,” I said.  “Bed.” She popped up, “Wait–I think I’m healthy enough for school!  I feel better!” “Wow!  A miracle healing!  This is your lucky day Greta!” “Yeah!  I’m going to go get dressed now Mom!” she bursts up out of bed and I hear her closet doors fling open. “Okay G!” I laughed as I got up and went to...

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