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”
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.
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”
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”
I’ve just finished reading Just Show Up, by Kara Tippetts and Jill Lynn Buteyn. It’s a book, a beautiful book written by two friends: one dying of cancer, the other who showed up – to love her, to support her, to walk with her, to dance with her, to live with her. It’s their story, and it’s the story of their community. It’s also my story, a story I’m living.
I write for New Christian Woman, and my latest post for them will be published in a few weeks. It’s about community. This book is about community. I’m living in and experiencing incredible, blessed, grace-filled community. A community that has shown up. Continue reading “Just Show Up”
We’ve had the good fortune to know a lot of excellent South African doctors. Samuel was delivered in Dawson Creek, BC by Dr. Brussow – a South African doctor. Anne’s cancer was discovered at Crompton Hospital in Pinetown, South Africa by Dr. Garrib – a South African doctor. And now we’ve travelled halfway around the world to see an expert in neuroendocrine tumors at Penn Medicine in Philadelphia, Dr. David Metz – a South African doctor. (He scolded us for never making it out to the berg or up to Hluhluwe in the two years we lived in Durban – we’ll have to make sure it happens whenever we visit South Africa next!).
We had our first visit with Dr. Metz at the Perelman Center for Advanced Medicine yesterday. It went well. We had good conversations with the nurses and research assistants as well as Dr. Metz, and we feel reassured that we’ve made the right choice to come here; as hard as it was to leave South Africa, it’s very good to be at a center where everyone is thoroughly familiar with the ins and outs of NET cancer. We didn’t expect to learn much new information at this visit, and we didn’t get it – but we did get a plan for how we’ll get that information that we need to move forward.
That plan involves testing – lots of testing. They took nine vials of blood for testing yesterday; fortunately we had some time to sit and eat something afterward before we had to catch the train. (We took advantage of the chance to have lunch with our friend Annika, who happens to work on an upper floor of the Perelman Center dissecting fruit fly brains to study circadian rhythms.) They’ve scheduled an endoscopy and colonoscopy for June 6th, which among other things should help differentiate between symptoms caused by the cancer and symptoms caused by other factors (e.g. endometriosis, ovarian cysts, celiac disease, IBS, etc.). They’ll also review all the digital images from the scans Anne has already had and do their own tests on the physical tissue blocks and slides from the tumors that were removed during the original surgery.
We continue to be in awe of the love and support we’re getting from people here and around the globe. Amidst the hardness and the exhaustion and the frustration, there are constant reminders that the Lord is here, and that He is good.
Our kids are sharing a room with each other for the first time, and this morning Eleanor woke early and disturbed Samuel. Coleman got up with her and took her downstairs, but a few minutes later I heard their bedroom door open slowly. I called Samuel’s name, and a sleepy “Yes, Mama?” answered. I invited him to come climb into bed with me, which he did, and we cuddled in the dark. He asked to nurse, and I reminded him gently that we can’t nurse anymore.
Continue reading “Talking With My Two Year Old About Cancer”
Home is a funny word for TCKs, expats, those of us who move around a lot. I have ‘homes’ scattered around the world, in places I’ve lived, and in places I haven’t, but where loved ones live, and I know I would be ‘at home’.
Continue reading “Home Sweet Home”
One month ago today, Anne’s gynaecologist Dr. Garrib called us into his office and told us the bad news – a carcinoid tumour had been found in Anne’s appendix, with a metastasis in the pelvic wall. Over the next week, as we researched neuroendocrine tumours, it became clear that we would need to seek specialised treatment overseas, and we’d have to leave South Africa. We gave ourselves a month to wrap things up here – and today is the day we pack up and leave for the U.S.!
It is amazing the way the timing has turned out. We picked today as our departure date several weeks ago, before we even had all of our tests scheduled. As it turns out, we were able to have our last test on Thursday of last week, got results this Monday, submitted paperwork to Penn Global Medicine the same day, and have just today made payment and been accepted for diagnostics and treatment at the Hospital of the University of Pennsylvania.
Oh, and the results of that last test? They’re very encouraging. We’re still only cautiously optimistic – Anne has on-going symptoms that we still need to dig into – but the gallium scan did not reveal any tumours at all. Even her liver, where a previous scan had showed a “suspicious lesion,” appears to be clear. Whatever the explanation – false positives on a previous test, a false negative on the more accurate one, or a miraculous healing – we are so grateful to God for the news. It leaves open questions, but it’s the best news we could have hoped for.
And so we go with confidence that we’ve made the right decision and confidence that Anne will get the best care possible. But we’re leaving with heavy hearts. Every goodbye is a reminder of the dreams we’re letting go of – the just-blossoming friendships, the kids who would grow up with Samuel and Eleanor, the team that would lead the school into its next chapter, and on and on. It’s hard. It hurts. We just keep praying and trusting that the Lord is in charge and that He leads to what is best. But it still hurts.
Today that sadness is mostly a background throb, though – front and centre is the fact that we have only a few hours left to finish packing 14 pieces of luggage and 7 carry-on bags, and then to schlep all that and 5 adults and 2 toddlers to the airport! (Our dog Winston has already been sent to a kennel for a few days; he’ll fly next week and we’ll collect him in the U.S.) Please pray for grace and peace as we make the final push to go. We’re so blessed to have had an army of people willing and ready to help us here over these last few weeks and days, and to have an army of people in the U.S. ready to help as soon as we land, and an army around the world lifting us up in love and prayer. We don’t always get a chance to respond to all the messages we get, but we deeply appreciate each and every one of them. Thank you!
The last three weeks have been filled with doctor’s appointments, trips to the lab and test after test after test as we and our medical team try to understand what we are dealing with.
There are a number of tests used to build a picture of this kind of cancer, and that’s really what I’ve learned they do – together, they are pieces of a puzzle. Each one in isolation tells us something, but on its own is usually not very useful for understanding the whole thing. This is sometimes frustrating – I want answers! Now! What is going on inside my body? What do we do about it? It is hard to be patient. It has become important to me to remember that each result we get, whether ‘good’ news or ‘bad’ news is really just one piece, best understood in the context of the whole, which we are slowly but steadily forming. Continue reading “Questions, Answers and More Tests”