A Year Later

(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.

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A Belated Update

Hard to believe it’s been almost two months since our last update. Rather than try to capture everything in the last few months in detail, here’s the bullet-point version – with pictures!

October 15 – NET Cancer awareness fundraiser at Bryn Athyn Bounty farmer’s market, with proceeds going to the Neuroendocrine Cancer Awareness Network.
bounty-booth

November 8 – A trip to the ER; Anne had intense abdominal cramps and pain, to the point that the pain required narcotics. It passed and Anne was feeling much better by the next day, but she has had consistent, daily, really bad stomach cramps since then. It’s the big mystery at the moment; there doesn’t seem to be a physical blockage, but the cause could be anything from a reaction to the lanreotide, to adhesions from the surgery, to a recurrent ileus (intestinal paralysis), to any number of other things. Anne will skip her upcoming lanreotide injection to see if that makes a difference; the lanreotide has been effective in reducing symptoms like flushing and heart palpitations, but we want to see if it might be responsible for the abdominal pain. If it is, we’ll talk to the doctors about reducing the dose or switching to Sandostatin, another drug that acts very similarly to lanreotide.

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An Announcement and a Plan

As we’ve mentioned in previous posts, Anne’s treatment has not been nearly as straightforward as we’d expected; in fact, our surgeon said that “never in [his] wildest dreams” did he expect this many complications. After a lot of discussion and reflection and prayer, we’ve come to the conclusion that with all the unanswered questions, and the need for constant treatment and monitoring, we won’t be able to move to Canada after all. Instead we will be settling in Bryn Athyn for the foreseeable future.

This wasn’t an easy decision. Anne and I were excited at the idea of living in Toronto, a city we both love, and serving at Olivet, a congregation that feels like family. But from the beginning we’ve known that if things didn’t go smoothly, plans would have to change, and we’re happy to be in a community with friends and family who have welcomed us with open arms. We’re not sure yet what work I will be doing for the church in the 2017-2018 year, but there are several possibilities. My parents have generously offered to let us live with them for as long as we need to, but we are looking for a more permanent home (ideally a one-story, 3+ bedroom house for recovery from future surgeries, etc.; let us know if you hear of anything available!).

So, that’s the announcement side of things. The plan side is this: starting some time with in the next month, Anne will begin monthly lanreotide injections. These injections are intended to deal with symptoms of carcinoid syndrome, and can also slow tumor growth. Anne has a lot of unexplained symptoms that may or may not be caused by the syndrome, e.g. tachycardia and low blood pressure, and we’re hoping that the monthly injections will make a big difference in how she’s feeling. Even if they don’t, it will give us a better idea of what symptoms are carcinoid-related and what still has unknown cause. As I mentioned in our last post, a lot of people notice a fairly dramatic difference with lanreotide, so we’re hopeful this will be the case for Anne.
We’ve been given an unbelievable amount of love and support from people all over the world since Anne was first diagnosed back in April. Words can’t express how grateful we are for the love you’ve all shown us and continue to show us. Thank you!

Top Ten Takeaways from the National NET Patient Conference

Last week, Anne and I attended the National NET Patient Conference in New Orleans, presented by NCAN (the Neuroendocrine Cancer Awareness Network). It was an amazing experience. Here, in no particular order, are our top ten takeaways:

1.) We’re not alone.

Before the conference, we had met only one person with neuroendocrine tumors, back when Anne had her Gallium scan in Pretoria. I can’t put into words how much it meant to talk with people, laugh with people, cry with people who not only know what NETs are (which already puts them ahead of 99% of the population), but who know intimately what it means to live with this disease. It’s not a club that anyone asks to join, but it’s an amazing community full of passionate people who are willing to fight for each other and lift each other up.

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Another Bump in the Road

As Anne mentioned in her last post, we were back at HUP today to find out the source of the abdominal pain and nausea she’s been having since Monday. They did a CT scan and discovered several small abscesses with fluid collections. They followed that up with an ultrasound that showed the collections to be tubo-ovarian abscesses, probably caused by exposure to bacteria from the surgery or from the insertion of the previous drains. This is a fairly rare type of abscess to have after a surgery like Anne’s, and the surgical team is working with the gynecology department to figure out the best way to deal with it. Unlike the last abscess they found, these ones do not seem to be reachable for drainage, so the plan for now is to admit Anne into the hospital and have antibiotics administered by IV here at the hospital for a few days, then re-evaluate based on whether the infections respond to the antibiotics.

It’s frustrating and tiring to have yet another complication; Anne’s surgeon says that he has never had another patient with this many complications after this kind of surgery. We’re learning to take it a day at a time, a moment at a time, but we’re not always great at it. I think we sometimes make it sound like we’ve got it all figured out. We don’t. We get grumpy at each other, annoyed at the odd unhelpful nurse, glum about all the setbacks. But we pray, and we read Scripture, and we turn to our friends, and we try to make each other laugh, and we let the Lord lift us up again. And tonight, we’re doing OK. God is still good, and we know we are loved.

A Hard Recovery

It’s been hard week. On the whole, Anne is moving in the right direction; she’s certainly doing better now than she was a week ago. But in terms of how she’s been feeling, it’s been a case of a few steps forward followed by a few steps back, over and over. The following includes some of the (slightly) gory details, so consider yourself warned if you’re squeamish.

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A Successful Surgery

Anne has come through surgery successfully, and after a few bumps in the road, she seems to be recovering well. The most important news coming out of surgery is that there were no visible tumors in Anne’s peritoneum, ovaries, intestines or anywhere else. We also got some good news from the pathology of the surrounding lymph nodes: only 2 of 39 had cancer. 2 is not as good as none, obviously, but it would have been VERY surprising to have no lymph nodes involved given the extent of the original appendiceal tumor. We haven’t had a chance to talk at length with the doctor about that news, so we don’t know much about the implications, and we’ll share more in a future blog post.

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