(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.
Continue reading “A Year Later”
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.
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.
Continue reading “A Belated Update”
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!
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.
Continue reading “Top Ten Takeaways from the National NET Patient Conference”
My body is fighting a war, good cells against bad cells. It is being fought on multiple fronts.
There is the cancer. We learned that when I had my second surgery in July (to repair the anastomosis that was bleeding) they removed another microscopic tumor. Too small for the surgeons to see. Too small for the pathologists to see. Only under the microscope, going through cell by cell, did they discover it. This confirms what we and the medical team suspected and assumed: We will be fighting this war for the rest of my life, as tiny tumors sneakily grow. This doesn’t change our management plan; we will still wait and watch, carefully. There is no chemotherapy for my situation. No remission for this kind of cancer. So we will be always at the ready, vigilant and aware, to do what we can to keep it at bay.
Continue reading “The Next Battle”
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.
Continue reading “A Hard Recovery”