(Picture above is from the first day of spring, enjoying our free Rita’s water ice.) A year ago today (well, a year ago yesterday by the time I’m actually posting this), we were told that Anne had malignant, metastatic neuroendocrine carcinoid tumors. I’ve been looking back over emails and notes from those first few days after we found out, and man, what a whirlwind. I want to talk about some of that, but first, an update on where we are now, since it’s been three and a half months since our last update… sorry!
What’s Been Going On Since December
It’s hard to believe that we’re almost a third of the way through 2017. In February and March, a team of our friends in South Africa worked tirelessly to pack and prepare all of our belongings to be shipped around the world to our new house here. Meanwhile back here in the U.S., construction workers knocked out a wall, ripped up carpets, and replaced flooring in our new house.
On April 1st we had a crew of friends over to move furniture and assemble new pieces to make sure we’d have places to put our stuff once it arrived. As it turns out, the timing was great; we got word on April 3rd that our stuff would be arriving just two days later, earlier than we’d anticipated. We cleaned frantically (again, with help from fantastic friends), and by the end of the day on April 5th, we’d been reunited with all our worldly possessions. We’ve made a vow that everything will be unpacked and have a place before we move in, so the next few weeks will be VERY full of unpacking and sorting.
The next Monday, April 10th, we had Anne’s green card interview. The interviewer couldn’t tell us on the spot that we’d been approved, but he said we would know “very, very soon” – a highly unlikely statement if there had been any problems. Sure enough, we got word that Anne’s green card was mailed two days later on the 12th, and we hope to see it in the mail any day now.
We figured while we were on a settling-down roll, we might as well go all the way, so last week I finally transferred my BC drivers’ license into a Pennsylvania drivers’ license and we bought a car – a beautiful 2013 Honda Odyssey that had all the features we were looking for.
So – car, house, and permanent residence. For the first time since moving here almost year ago, we’re not waiting to find out whether we can really stay. This is where we are, and we can start to focus on what that means – what we need for day-to-day life, and how we can start putting down roots.
If you read our last post from December, you’ll see that Anne had been having ongoing intestinal pain. She tried a few months without lanreotide; the pain abated a bit, but not enough to be worth stopping the injections, so Anne is back on the lanreotide. We still don’t know what’s causing that pain, and it doesn’t look like we’ll get any obvious “aha!” answers; our best guess right now is some kind of ileus or nerve damage. We have found that regular Zofran helps, but it seems like this might be a chronic ongoing pain that Anne has to learn to manage.
Besides that pain, Anne has been having pelvic pain and joint pain, neither of which have known explanations; she’ll see a specialist for the pelvic pain tomorrow, and our primary care doctor plans to order a battery of blood tests for the joint pain. Anne also has back pain, possibly due in part to a spinal hemangioma that was discovered in an abdominal MRI a few months ago.
On the good news side, that MRI showed no evidence of any new neuroendocrine tumors, so even though we know that there is microscopic disease, nothing seems to have been growing very quickly. Anne will get another scan in six months, and we continue to watch and wait.
Reflections on a year since diagnosis
As I said at the beginning of this post, it’s been a year since we were told of Anne’s diagnosis. Looking back at that first week, it’s amazing how quickly things happened. Within a week we had researched in every online journal we could find, contacted doctors in four different countries, weighed our options, and decided that we would need to leave Westville and move back to the U.S.
Do you know what’s strange? The way this cancer ripped us out of that congregation is still one of the things that hurts the most, is still one of the biggest things I grieve. Maybe it’s compounded by the hard farewells from every congregation I’ve served in – never enough time, always heartache from moving on too soon, leaving behind friends who had become family.
What also made this time harder, I think, is that I was completely blindsided by it. As a new pastor, you expect to be moved fairly frequently at first, so as hard as previous moves were, they hadn’t been completely unexpected. But after moving twice in five years of ministry, and after an expensive international move, we were virtually guaranteed to stay in Westville for at least five years more, and quite possibly much longer. We were ready and eager to put down roots, and we had started to do so. Westville was and is such an exciting place to be – people engaged with the church, a thriving school, families with kids’ our age, and dear, dear friends who had already walked with us through some really hard times. And we had just started a number of new programs – Anne leading the Godly Play Sunday School program, me eager to completely take on the role of school chaplain. There was never a chance for closure with any of that. I think maybe it’s starting to heal now – it helps to know that my brother Joel has taken my place there as associate pastor – but it still feels like a gaping wound that’s only just starting to close.
As for everything else – well, we knew it would be hard, and it is hard. A week and a half after the diagnosis, Anne wrote on the blog:
I do much better with a plan, able to face things head on and move forward. I do really well in crisis mode. Major emergency? I’m the girl you want next to you. I function fantastically in the immediate, the short term. The long fight? I guess we’re about to see how I hold up.
Well, I’m learning that she holds up very well. She’s been amazing. And she’s also fallen apart some times, and so have I. That’s OK. We’re not superheroes. As Anne hinted at in that post, in some ways the immediate crisis is easier to deal with than the longterm daily reality of chronic illness. And that’s really what we’re dealing with now.
We had hoped that with surgery and lanreotide Anne would bounce back to near 100% health. That has not been the reality. There’s still a possibility we’ll pinpoint a single culprit for some of her ongoing pain and nausea and fatigue, and her quality of life will drastically improve, but we’re not counting on that. So, for now, this is what our reality looks like. For the foreseeable future, she’ll probably have good days where she can go for long walks, and bad days where we’ll need to take a wheelchair if she wants to go anywhere. She can play and cuddle with the kids, but she can’t take care of them by herself. She has to be careful with how much she tries to do in one day or her body crashes from exhaustion.
I want to be able to step in and fix it and make it better, but I can’t. That’s hard. What we can do is work together to figure out how to make things work. The kids go to a Montessori pre-school from 9 to 3 and have babysitters in the afternoons after that, and my parents help out with mornings and evenings and weekends. Once we move into the new house, we plan to hire an au pair who will take on some of those duties that babysitters and grandparents perform now. We’re starting to figure out out self-care for both of us: seeking holistic health and exercise plans, looking at the possibility of professional counseling for cancer-related stress. We have had incredible support from the community here. The challenge now lies in finding a way to have sustainable support that we can afford and that doesn’t burn anyone out. It’s a challenge, but I think it’s one that can be met.
Where is the Lord in this? Again, in some ways it’s easier to remember the Lord in crisis mode – you know you need Him, you cry out to Him, maybe you yell at Him. In the little daily struggles it’s easier to lose sight of Him. But we’re still praying together, we still have reminders that others around the world are praying for us. We’ve been reading psalms together every night for the last few months, and it’s amazing how clearly He speaks to us there. The Lord is carrying us through. He’s good, and He is faithful.
I don’t want to make it sound like it’s all doom and gloom. We continue to have great times as a family; in the last few months we’ve been to a broadway show, seen a movie with good friends, worked side by side with people who love us and want to help us. We laugh a lot, we have fun with the kids outside, we watch dumb movies on Netflix. Life is good, and a lot of the time life is just life, and that’s good too.
It was good to have lots of friends and family around from both sides to celebrate Easter. Last week had some really hard times, as a lot of weeks do. It was a blessing to be reminded that out of the greatest struggles, far worse than the worst things any of us will have to go through, came the greatest hope and joy. Out of suffering and death came resurrection and life. We needed that reminder this year. When I look forward to what the Lord has in front of us, I see a lot of challenges, but I look forward with more hope than fear. I love Anne, I love our kids, and I like doing life with them. The Lord is with us. We’re going to be OK.