The wilderness

The hair

Cut your hair into a pixie, they said. You’ll be so glad it’s short when it starts to fall out.

I was told to expect to shave my head by week 2. Not one to deprive the kids of the opportunity to have two bald parents, I was ready.

Friends, my hair is glued to my head. It is falling out less than ever before. It is also growing — into a Wayne’s World style mullet. I am wondering if I am going to be the first person ever to keep their hair on this regimen, at which point I will be doing two of the hardest things in the world at the same time: undergoing chemotherapy, and growing out a pixie.

I had an appointment this week with my oncologist here in San Diego, and she assured me that my hair would fall out. I realize I am probably the only person to ever wish for this to happen, but this haircut was part of that plan. Time will tell.

And to add insult to injury, I was reading that the steroids in the regimen cause some side effects too. While I have not developed an incredible amount of muscle mass, it has caused my skin to break out. Mullet + glasses + acne — I know you’re all jealous.

Mi madre

My mom is still in the hospital. We thought she’d be out by Monday, but it looks like the lung isn’t inflating fast enough — and that there might be some air bubbles that still need to be worked out. It’s been a full week now and she’s eager to go home — and really eager to wash her hair. So fingers crossed that she recovers quickly and gets to head home soon.

Luckily, some friends happen to work at the hospital where she’s staying — including the wife of a childhood friend / sometime bully (I seem to recall games during family gatherings that involved excessive consumption of Sprite followed by blocked bathroom doors) — so she has a nice room, and has had visits from doctor friends. That’s made a huge difference in her spirits and her experience. Still, I’m sad that I’m not able to be there to be an advocate on site. Hoping for a speedy recovery.

The chemo

This week I was less tired, so put in some long walks and did some light cardio. I also drove short distances a couple of times. One night, to get me out of the house, Sacha took me on a late night excursion to Target. They told us if you need to do stuff, like go to the grocery store, to go late at night when the stores are empty. I bought everything I didn’t need at Target, and it was glorious.

This past weekend I started to have some back pain and pressure on my right side, which made me fearful — is it working? Is the tumor growing? Overall, I’ve managed to stay positive — and I think for the most part I still am — but every once in a while these things cross my mind. The response rate for this drug — our best first shot — is about 30%. And I really want to be part of that 30%.

Then I get anxious about all the things I haven’t taught the kids, like how to properly optimize a dishwasher and care for an end-grain cutting board, and then things get crazy. I’d like to say that all I’m doing is hugging the kids all the time, but I’m not. In fact, I get agitated and probably overly critical because I want them to know how to do things the right way. And I realize all this is ludicrous and all I should be focused on is love and encouragement and happiness, but I’m on a lot of drugs right now so cut me some slack.

The God part

The relationship between faith and hardship is a funny one. Do I think that faith saves you from hardship? No — anyone who’s read the book of Job can attest to that. Does it guarantee you what you want, like a magic genie? No — though I must confess that if there were a magic genie type of faith that worked I would most probably sign up.

On Easter Sunday, Sacha and the kids went to church, but I stayed home, and found one of the sermons from John Buchanan, the very gifted pastor of the church I went to in Chicago. It was about the forty days that Jesus spent in the wilderness, alone. It’s about the wilderness of Moses after he surprisingly succeeds in liberating his people from Egypt. It’s about hardship, and loneliness.

“That’s the kind of thing that happens in the wilderness,” Buchanan writes. “You may not volunteer to go there. You may not like it there at all. But the strong biblical suggestion is that in the wilderness it is highly likely that God will come to you and things will change and you will never be quite the same again.”

I think that’s just it — for sure, I’ll never be quite the same again after this. That’s probably a good thing. But the other thing with faith — that God will come to you — is that you are not alone. Even at the darkest hours of the night, there is someone to turn to. A friend gave me a book called Help Thanks Wow: The Three Essential Prayers — and though I haven’t finished it, the title is right on point. Those are the prayers I pray.

Another friend shared Everything Happens for a Reason, and Other Lies I’ve Loved, written by a Kate Bowler, professor at Duke Divinity School who at age 35 was diagnosed with Stage 4 cancer. I read the first few pages, and wasn’t ready then to absorb Kate’s sadness — but again, I think the title of the book alone speaks to me. The important thing in suffering is not to feel alone. That’s what community, friends, family and faith gives me, and it has made all the difference.

 

The bright side

  • I’ve made it through my first cycle of chemo! Ready for the next one next week.
  • The dumb chemo brain days aren’t every day — just some days.
  • We continue to be very well fed — thank you, friends!
  • My hairdresser gave me a complimentary trim to get rid of the mullet-ness of my hair.
  • Every night I can see the sunset from my house.

I love the prayer that Rev. Buchanan quotes in his sermon (it’s worth reading, linked again here, if you have a moment):

This is another day, O Lord.
I know not what it will bring forth,
but make me ready, Lord, for whatever it may be.
If I am to stand up, help me to stand bravely.
If I am to sit still, help me to sit quietly.
If I am to lie low, help me to do it patiently.
And if I am to do nothing, let me do it gallantly.
Make these words more than words,
and give me the Spirit of Jesus. Amen.

Kathleen Norris
Acedia and Me