Trials and tribulations

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Photo by Amy Louisa Schaefer

The mysteriousness of this illness is perhaps its most frustrating, yet compelling feature. If you were to look at Wolfgang here at home, only the trained eye—someone who knows him well or has worked in the medical field—might realize that he is gravely ill. He rides his bike. He still cooks, writes every day and takes pictures. He answers e-mails. He pays bills. He shoveled snow last week at six o’clock in the morning.

Of course he has a bald head. But in this day and age, it’s hip, not a dead giveaway.

It’s when you look more closely at our everyday routines that you realize just how deeply this illness can slice through your life. For instance, I often have to repeat my sentences for him to be able to catch them. This has nothing to do with deafness caused by years of living together as a married couple. The medication during first-line chemo damaged his fine nerve endings, causing both hearing loss and numbness in his fingers and toes.

Likewise, I cannot understand him when he speaks while rinsing a dish off in the sink. The primary tumor in his lung has damaged a nerve leading up to his vocal chords, making him hoarse and unable to speak above a whisper since September. This means he no longer reads to the kids before they go to sleep. It means that when he raises his voice at the kids, nothing more than a croak comes out. Needless to say, his authority is undermined—in a pinch, the kids don’t take him quite as seriously anymore.

The hearing loss and hoarseness make it nearly impossible for him to talk on the phone.

Due to a slowness of reactions and the risk of epileptic seizures, he has not driven the car since February.

When we tried to whittle down the trunk of the Christmas tree in December, he had to turn the handsaw over to me because he was so short of breath. Utter frustration.

Perhaps most mysterious of all is that despite the metastases throughout his body, some of them large, he is—thankfully—not in any pain.

Yet it’s the unpredictability of cancer and its ills that make it so nerve-wracking. Had Wolfgang has a stroke, say, the damage would already be there. We would know that if we tried this or that, there might be improvement. That every regained ability could be permanent. But with progressive cancer, it’s the other way around: you never know what’s around the corner.

In life, on a good day, that might be fun. With cancer, it’s treacherous—every step of the way.

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A dramatic turn of events

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Photos by Wolfgang Jorzik

December 2014

What to do when the home you envisioned for yourself becomes shattered by a dramatic stroke of fate? I honestly don’t know.

Our idea, our goal, was to give our children the opportunity to grow up in a house where they—and we—had room to spread out. Where they could run out into the backyard and swing, without having to worry about the traffic of the inner city. Where they could grab their bicycles, hop on, and ride down the street, without our having to watch them every minute. In a word, for them to feel “free.”

It was also a decision to try to meld some of city life with the greenery of the suburbs. We do have a tramline that runs here, even if it feels like we live way out.

And we did achieve part of our goal: after an unbelievable amount of work—by others, but especially by us—we turned the ruins of an old house into something beautiful. Everyone who comes to visit says so, and that makes us feel good. It is spacious yet homey, and people have complimented us on our inventive design ideas. And it’s so big, the kids can play hide-and-seek in it, as they are just now, as I write this.

But just months after moving into our new home, Wolfgang fell terminally ill—with lung cancer and metastases throughout his body, including his brain. After 12 radiation treatments on his head, and six rounds of chemotherapy, his cancer came to a standstill for a brief period. In August and September, life returned halfway to normal. We seemed and felt like an ordinary family again, loving and enjoying one another. And the twins, Ella and Nick, started first grade.

At the end of September, we learned that Wolfgang had had a relapse. And now we’ve learned that the second-line chemotherapy he’s been doing since then isn’t working. He has new metastases in his brain—12 small ones that are threatening to explode. The radiologist said as much today: he felt they would soon start to grow exponentially.

Third-line chemo is not recommended because the side effects are too great, and there’s no guarantee it will work. The only option is additional radiotherapy on his brain, as well as on the primary tumor in his lung: if only to help him get his voice back. But there’s no promise of that, either. He has been hoarse for the past three months—can barely speak over a whisper—as the lung tumor is pressing on a nerve that leads to his vocal chords.

The radiologist has only done second-line radiation on the brain of two patients—it’s that rare. And the outcome wasn’t that great.

Still, we have no choice. We can only hope that Wolfgang’s otherwise good constitution and his “superbrain” can withstand being zapped again 10 times. He’s worried about losing his consciousness—in a philosophical sense, as in: thinking his thoughts, dreaming his dreams, enjoying life, taking photographs, writing texts, being with us, “being here.”

Meanwhile, we have tried to “build our home in Germany” as best we can this year. It’s the title of this blog, and it’s the only shelter we’ve been able to find as we try to work through the cruel algorithms of cancer, only to discover that it’s all just a random mess.

Digging in the dirt

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June 2, 2013/August 5, 2013

Yes, I admit it: months have gone by before I could get back to this blog.
For now, what keeps going through my head is Peter Gabriel’s song “Digging in the Dirt.” Actually, what has gone through my mind for several months now is both some of the images from the song — and my own feelings of what someone recently called “Entwurzelung”—“uprooting.” I think that is such an apt term of what I’m experiencing. The woman spoke of just moving one or two neighborhoods away within Cologne. Now, with our move, it is a 30-minute jaunt from one end of town to the other. I think the term “uprooting” is so fitting because it truly takes several years before one finds one’s footing/friends/one’s way. Perhaps one is lucky beforehand—I’ve not sure.

Surprisingly, and thankfully, I found this link just by Googling “Entwurzelung.” Incredibly apt, I must say. Those who have never moved countries may not understand this. Those who have, will likely say: “Right on!”

http://www.news.de/gesundheit/855028622/entwurzelte-seelen/1/

Milestones

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Photo by Wolfgang Jorzik

Someone said to me today: “You don’t write very often on your blog.” And it’s true – with all the zest with which I started this blog, I’ve gotten bogged down with mundane things like deciding on windows and heating systems and proper sub-construction systems for flooring, as well as more creative things like selecting tiles for bath and kitchen and the most energy-efficient stove (gas or induction?), all the while working as a journalist, and raising and enjoying twins who just turned five last week. Did I mention there was a birthday party of 16 5-year-olds to organize? Not in our urban dwelling, of course, but a rented gym where we could conduct children’s Olympics? Fun, yet harrowing – but it was an absolute hit! Still, who really has time for ripping out a ceiling in our new house – which is the next project? (My husband, of course! Work starts tomorrow!)

Nonetheless, it is a major feeling of accomplishment to have gotten twins – a girl and a boy – to this half-decade mark. Much more so than with birthdays’ past. Perhaps because I am getting older myself, the accomplishment seems all the greater.

Here, little “heart” flowers from our new garden, to commemorate the kids’ fifth birthday. Long live Ella and Nick!

Writing it in stone

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One of the perks of owning your own home is that you get to do with it what you will. Of course, it has its upsides—like, my husband and I decided just the other day that we would knock out a little rectangle in a hall wall just for the view to the garden. We grabbed a hammer and chisel and it was down in twenty minutes. Gorgeous decision.

Home-ownership, naturally, has its downsides. Like, you can pay many thousands of euros to replace a mini-section of the sewer line that goes out to the main street sewer line, even if it only has a miniscule hole. Personally, I would try to patch it like a flat tire. But since when has the city asked of my opinion?

But, there are many upsides of home-ownership…like being able to build a raised bed construction at will—built from the wooden planks of a 1970s sauna we chucked out from the basement back in March. Of course, we have meanwhile scanned the Internet about the proper choreography of planting vegetables from one year to the next…Soil depletion, enrichment, etc. It’s all a science. It’s all an art. It’s wonderful.

And, of course, we get to plant absolutely any flowers, plants, trees, vegetables we want—for better or for worse. But we try, as with kids, to get them to jibe with one another.

Here are some of the hopefuls in our garden—and me, “writing” the names of cultivated plants on to stones, a gorgeous idea from my friend Marion T. I love it.

Ripping apart

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All photos by Wolfgang Jorzik

Much of this house has been about tearing things down—envisioning something new, but pulling down the old, the worn-down, the Überholtes, the not-very-nice stuff. I find that the German/American differences in mentality clash here: Americans: want to change everything; Germans: either want to keep everything the same, or, if they are prepared to change things, want to do it so thoroughly, that it is truly hard to get anything done. Thankfully, at this stage, my husband is prepared to tear down walls, and do it blissfully, while I take care of the kids. Here, we decided to take out a wall or two just to make more space and lighten things up. If life could be so easy.