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!
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.
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.
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.
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”→
We are writing to you with an update on my (Anne’s) health. On April 18 I was diagnosed with an advanced form of a rare kind of cancer, called Neuroendocrine Tumour (NET) cancer (sometimes also called carcinoid cancer). Continue reading “Anne has cancer”→
We haven’t been very active on this blog in the last couple months, and there’s a reason for that – we’re pregnant! So Anne havsn’t been feeling all that great, but more, everything we’ve wanted to write about has been coloured by the fact that we’re having a baby – and we hadn’t announced that yet. Continue reading “We’re having a baby!”→