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.

Continue reading “A Year Later”

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.

Continue reading “Top Ten Takeaways from the National NET Patient Conference”

A Plan

On Thursday of last week Coleman and I met with our surgical oncologist, Dr. Roses, and his chief resident to discuss our options and make some plans. With all of the tests back, and several other opinions sought, he confirmed some of what we thought we understood and reaffirmed some of what we had discussed before:

– I have Stage IV cancer, which sounds terrifying, but is really just a description of how far it’s spread, not how widely, and in NET cancer is not really indicative of prognosis – many, many people are stage IV when it’s found, and have a (relatively!) good prognosis. I am barely a stage IV, and am in much better shape than many other patients at this stage. Grade, how each tumour is measured, is a better indication of prognosis, and both of my tumours were Grade 1 – the lowest, the best. Continue reading “A Plan”

Liver MRI Results

As Anne mentioned in the last post, we were waiting for one final test result before moving forward with treatment: an MRI to look more closely at a possible liver lesion that had showed up on one of the previous scans. We get results from the MRI yesterday, and it’s good news: there is no evidence of any lesions in Anne’s liver! The MRI was normal, with no signs of advanced cancer, or anything of concern or note anywhere. (It is not especially sensitive and would only pick up large tumours.)

As Anne mentioned in the last post, given the extent of the primary tumor and the fact that it has metastasized, we have to assume that there are still tiny micro-metastases in her body, and for the rest of her life we’ll have to try to stay ahead of them and deal with them as they grow and show up on scans. But it is very good news that there are no visible tumors in the liver!

Our plans are the same as Anne mentioned in the last post: we’ll meet with our surgeon on June 30th, and we expect that at that time we’ll set up a date for a right hemicolectomy, probably for mid-July. Because there does not seem to be any disease in the liver, there’s a possibility that this surgery will significantly improve prognosis, since it could dramatically slow the cancer’s movement toward major organs.

Thanks to everyone for the help and support and prayers – this is a long, slow road, and we are only able to walk it because of the Lord’s help and the unflagging love you’ve shown us.

A Proposal of a Plan

After several tests and consultations, meetings and review of the pathology (I carried slides and pieces of my appendix in my shoulder bag on the airplane, and the team here has been able to look over the work done by the lab in South Africa, as well as make their own slides), the team at Penn has come up with a proposed treatment plan for us. Continue reading “A Proposal of a Plan”

An Unexpected Test Result

Celiac disease is a genetic autoimmune disease that causes the body’s immune system to attack the proteins that make up what we call gluten (found in wheat, barley and rye). This autoimmune attack creates a toxin that destroys the villi of the small intestine, leaving sufferers unable to properly absorb nutrients. Untreated, it can lead to (among other things) nutritional deficiencies, failure-to-thrive, diarrhea, constipation, bloating, anemia, infertility, miscarriage, kidney damage, liver failure and eventually, death. Continue reading “An Unexpected Test Result”