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”
As Anne mentioned in her last post, we were back at HUP today to find out the source of the abdominal pain and nausea she’s been having since Monday. They did a CT scan and discovered several small abscesses with fluid collections. They followed that up with an ultrasound that showed the collections to be tubo-ovarian abscesses, probably caused by exposure to bacteria from the surgery or from the insertion of the previous drains. This is a fairly rare type of abscess to have after a surgery like Anne’s, and the surgical team is working with the gynecology department to figure out the best way to deal with it. Unlike the last abscess they found, these ones do not seem to be reachable for drainage, so the plan for now is to admit Anne into the hospital and have antibiotics administered by IV here at the hospital for a few days, then re-evaluate based on whether the infections respond to the antibiotics.
It’s frustrating and tiring to have yet another complication; Anne’s surgeon says that he has never had another patient with this many complications after this kind of surgery. We’re learning to take it a day at a time, a moment at a time, but we’re not always great at it. I think we sometimes make it sound like we’ve got it all figured out. We don’t. We get grumpy at each other, annoyed at the odd unhelpful nurse, glum about all the setbacks. But we pray, and we read Scripture, and we turn to our friends, and we try to make each other laugh, and we let the Lord lift us up again. And tonight, we’re doing OK. God is still good, and we know we are loved.
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.
There are days when this is really hard.
Pretty much everyday there is at least one moment when this is really hard.
Cancer sucks. Incurable, chronic, stage IV, ultimately terminal cancer…it’s hardly fathomable sometimes, so hard to wrap our heads around. It steals my energy and my strength, my independence and my abilities. It’s an ugly, awful hard. Continue reading “Sitting in the hard”
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.