Thursday, November 24, 2011

A Shrinking Circle

A couple of months ago, I posted a piece to my personal blog in which I explained how I've experienced growing and expanding circles of people since Chloe's diagnosis.

I'm feeling like it's time to shrink my circle again, but also feel like we need to share with you, our much larger circle, what's going on.  Last week I came to the difficult decision that I need to take a short leave of absence from my teaching position.

Christa and I have sort of struggled with how much of our personal journeys to put in this place that has become, more or less, "Chloe's Care Pages."  We've made a lot of our family journey quite public, but now that we're struggling with some things personally, we're questioning how much to put out here.  Yet, in the end, the health of each of us individually contributes to the health of our family collectively.

For the past couple of months, probably since Chloe was inpatient at DeVos the first weekend in October, Christa and I have been running with a deficit - sleep, energy, patience, and the like.  Since Christa works half time she doesn't have the opportunity to take a family medical leave, so I knew if one of us was going to take extended time off from work it was going to be me.  Many different people from different parts of my life have encouraged me to take the time off, but my standard refrain has been "I just need to make it through parent-teacher conferences, then it will be okay." 

About two weeks ago I woke up with a tightening in my chest and a slight cough. I thought I was getting a cold as it continued through the week until I ended up with a minor panic attack while driving to work on Friday morning.  That confirmed what I had been thinking in the back of my mind, too much stress.  The thought of rescheduling my 26 parent-teacher conferences that were held last Monday and Tuesday was too much, so I just pushed through.  The tightening in my chest disappeared for the weekend, but returned about an hour before conferences began last Monday.

Tuesday morning I realized that I had almost made it through conferences, my goal for the past months, but that it wasn't going to be enough.  When I finally admitted to myself that I can't keep this up, the tears began to flow and wouldn't stop.  I held it together through the evening of talking with my students' parents and found some time to talk with my principal after my last conference.  As I expected, she was very understanding and encouraged me to take the time.

I'm finding there is a great deal of guilt that goes along with needing to say that I just can't do this -- keep up with family+cancer and work together.  Yet, in the end, I know that this is what I need to do.  I need to be able to feel that I can spend time with one of the kids when they request it, instead of putting their requests off while looking for available time, which doesn't come.  I need to know that I can give Christa and our relationship the time she/it needs right now as this seems to be "mile 20 of the marathon" and we've hit the wall.

A couple of decades ago, my great aunt Ebba (from whom Chloe gets her middle name) said to me:
"Where would we be without prayer?"
On that note, please pray for...
  • Chloe, that she continues to heal from the effects of the chemotherapy that she received last week.  This dose hit her pretty hard and she's been tired and hasn't wanted to eat.  Pray also for her to mentally be able to keep this up for a couple more months.  The trips to GR have lost their appeal to her and she and I will be there by 8:30 AM again tomorrow morning...
  • Henri as he continues to heal from his mono and seems to be needing a lot more of our attention than usual. 
  • Martha as she deals with feelings of jealousy and has told us "I wish I had cancer so that I could..." more than once in the last few weeks (and patience for us so we can just listen and not get upset when she says that).  
  • Christa as she works to deal with feelings that have been locked away over the past five months and comes to grips with the fact that we have two more months of this marathon.
  • Me as I shift gears and "work" to support our family in a myriad of ways.  Specifically, I need to slow my brain down (hopefully that will allow me to sleep, which I haven't been doing), focus on one thing at a time, and get out for a run more than once a week in an effort to reduce the abundance of stress that I've been carrying the past few months. 

Sunday, November 20, 2011

not quite there

after a 3-week break,
chloe had
another round of chemo
on monday.

i was hoping to get a picture of
what is left.

we believed that
monday's treatment
was the

then what?
how does this all
get wrapped up?

many comment on how exciting it must be,
a great christmas present.
i feel uncomfortable
contradicting that sentiment,
as if i am somehow
wallowing in my own hard times.
but it does not feel like a gift,
it makes me cry every time i think about it.

i am trying to find words to explain it.
those words are fleeting,
mostly just feelings that i grasp for a moment.

this has been our life
for the last 6 months
(as someone pointed out,
one-eighth of chloe's very existence).

while i certainly do not want it to continue,
it is a bit scary,
thinking of what we will do
when it is over.

how will we define our new schedule?
what will i do on my days off?
what did i used to do for fun?
do i remember how to cook?

but even more daunting,
who will watch over my kid?
who will make all the decisions
and make sure she is really okay?

i know that
it is not up to me.
i know that
God is greater than
all of this.
i need to trust
and believe.

yet it is still
a major shift
to consider
moving out of
the protective circle
the very tight structure
created for us by
the doctors and nurses.

i got the answer to my question,
2 more treatments left.
the end that we thought
would come at christmas
is closer to february.

what a disappointment,
and what ambivalence.
i struggle with the end
yet i do want it to come.

for unknown reasons,
this has been
the hardest time
for kip and for me.

we are tired,
weary and stressed.
we see how
the illness and the treatment
affect chloe
every day.

chloe has lost most of her hair now.
she is experiencing neuropathy
(the nerves in her extremities
are slowed by the chemo).
she walks a bit more slowly,
her steps are heavier
and she trips more.

with 3 weeks
between treatments,
we see her start to
get some energy back.
it feels cruel
to allow another
round of chemo.

monday's particular cocktail
was hard on chloe.
she felt sick and very tired.
on wednesday 
she napped for 3 hours
and asked to go to bed
after being up for a short time.

we know february
will come.
we are thankful that
the side effects
are temporary.
we're just not quite there.

Thursday, November 10, 2011

The Reality

It's been a few weeks since we've posted here about Chloe's health. Partly it's been due to a lack of time, partly a lack of words.  Most of our updates have come in the form of short updates on Facebook (CHA & KHA, in case we're not "friends" :>) ).

Basically, we've been doing a good job of distracting ourselves from the reality. Since we last posted:
  • Chloe got a pair of guinea pigs, Pokey & Pumpernickel
  • Henri was star of the week and had fun sharing his interests 
  • Martha has been rehearsing for last weekend's Come On Over! Live Show as well as a role as a munchkin in Holland High School's Wizard of Oz production.
  • We participated in Sibs Night at the Clinic where Martha & Henri had a chance to see what Chloe does when she goes to clinic
  • Everyone enjoyed trick or treating
Christa and I do a good job of showing up to work or church and putting on a good face, talking about these distractions, but the reality is that we're exhausted: physically, emotionally, and spiritually.

Although Chloe's chemo appointments have moved to every three weeks, we've continued to find ourselves in Grand Rapids to check counts or other tests each week.  While Christa's work schedule finds her teaching two or three days a week, we're still finding it quite a challenge to fit these appointments into our family's schedule.

Plus our family has been plagued with multiple trips to the ER, Prime Care, or family pediatrician since Chloe's weekend stay at DeVos the first weekend in October.  Following doctor's orders, our family has been getting flu shots for the first time.  My shot landed me in the ER with an allergic reaction one Friday night.  Henri was diagnosed with mono on the 30th of October.  Martha went in to the doctor earlier in the week after two days of a fever (mono and strep tests were negative, thankfully!).  We were on the phone tonight with the on-call oncologist as Chloe has complained of a headache, stomach ache, and has been running a low fever today.  They aren't concerned as the fever is low, but it is one more thing for us to try to figure out.  Not to mention that Christa has had parent-teacher conferences three days this week and I'm feeling pretty stressed trying to get ready for mine in a week and a half.  I have so much on my plate that I can't even figure out what is a priority and what can be put off.

As Christa has said, "when do we get to say ENOUGH!"

Despite all of this craziness, we continue to be blessed with support from near and far: meals, house cleaning, cards, emails.  I think my parents have helped out with the kids every day during the past week as Henri has missed seven days out of the past two weeks and Chloe has been home from preschool or daycare many of those days due to a cold.  Christa's mom came over during the week to pick up the house to get it ready for cleaning. 

So, that's our reality.  Thanks for reading.

Sunday, November 06, 2011

COO! and Jars of Clay

I remember back fifteen years ago... Christa and I were living in our first apartment on Rockwell Avenue in Chicago.  My brother, Jed, had taken the train over from North Park to join us for dinner and brought along a CD by a band he had recently discovered, Jars of Clay.  That music on that CD quickly became some of my favorite.  Yesterday, Martha had the members of the band autograph that same CD after the Come On Over! Live Show.  Isn't it amazing how life works!

Martha did a great job in her role in the show and we all had a great time enjoying the COO! live show and getting to hear a few songs by Jars of Clay.  It was quite the exciting morning for all of us!

Jars of Clay, Joel, and the H-As

Martha especially had a great time rocking out with Jars of Clay on her triangle...