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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Hormones, Hair Loss and Halloween

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It’s been nearly a month since my first Lanreotide injection. I’ve had some good results – small reductions in symptoms and just enough more energy and steadiness to make life feel more manageable. I’m up and about, have gone out a couple of times without my wheelchair, and even on a couple of excursions without Coleman – to yoga with a friend, to the hair salon.

Hair. My hair is falling out. It was falling out before I started the treatment, most likely due to hormone issues (it’s been falling out for over a year!) but the rate has distinctly increased, a side-effect we knew was a possibility. So, I’m planning on shaving my head. Since I’m going to shave it anyway, I decided, why not have a little fun for Halloween?

Coleman and I attended a masquerade ball with a ‘fire and ice’ theme, and I decided to go ‘ice’. White hair is fun, still a bit of a shock when I look in the mirror, but fun! Stay tuned for buzz cuts, coming next week!

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On Halloween night we dressed up with the kids and took them to the girl’s dormitory at the high school where they were given puzzles pieces and cards (thanks for accommodating our food allergies!) and got to see all the fun costumes and decorations the girls put together. We especially enjoyed Hogwarts, and Around the World!

The Farmer, the Dancer and the Dinosaurs

The bad news is I have a partial bowel obstruction. It’s been an on and off thing for the last month and has worsened in the last few days. We’re in touch with my team, trying medication and diet to help improve things. I’m managing fine at home, but will go in to the hospital if necessary. The worst part is the pain, which seems to be worse in the evening and at night than during the day – while being up and moving seems to help at the time, increased activity brings increased pain when I stop moving. We’re hoping things improve and continue to heal and that I get closer to ‘normal’, but this is likely going to be a condition I live with for the rest of my life, with better moments and worse moments.

Other medical updates: this month we do more testing to try to narrow down my bleeding disorder, visit maternal-fetal medicine for follow up OB/GYN care and see a dietician who will hopefully help us understand what I need in the way of supplements and how best to eat now that my digestive system has been rearranged. I also have my next injection of Lanreotide tomorrow, and we hope it will continue to help me stabilize.

November is NET cancer awareness month and Nov 10 is NET cancer day. Watch for more blog posts with updates on what we’re doing in the NET cancer community and what your support means to us. Thanks for journeying with us!

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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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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Surgery Tomorrow

Tomorrow is my surgery at the University Hospital of Pennsylvania. I’m scheduled for 1:35pm, so our best guess is that I’ll be in the operating theatre around 2 and that the surgery will be about 3 hours, maybe more. We will leave for the hospital around 10:30 in the morning.

Coleman will be at the hospital during the surgery, and probably overnight with me. My parents (Scott and Beth) will be with Coleman at the hospital and will leave after the surgery. Coleman’s parents (Michael and Hilary) will be at home with our children, Samuel and Eleanor.

We have talked through lots of possibilities and contingencies, and we feel confident that this is the right decision for us. We are confident in the medical team’s skill, judgement and care. We trust the Lord for our strength. We have a great deal of peace.

Thank you for your prayers, for your love. We feel them keenly and are so encouraged by them. It is amazing to be carried by your love.