(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”
Hard to believe it’s been almost two months since our last update. Rather than try to capture everything in the last few months in detail, here’s the bullet-point version – with pictures!
October 15 – NET Cancer awareness fundraiser at Bryn Athyn Bounty farmer’s market, with proceeds going to the Neuroendocrine Cancer Awareness Network.
November 8 – A trip to the ER; Anne had intense abdominal cramps and pain, to the point that the pain required narcotics. It passed and Anne was feeling much better by the next day, but she has had consistent, daily, really bad stomach cramps since then. It’s the big mystery at the moment; there doesn’t seem to be a physical blockage, but the cause could be anything from a reaction to the lanreotide, to adhesions from the surgery, to a recurrent ileus (intestinal paralysis), to any number of other things. Anne will skip her upcoming lanreotide injection to see if that makes a difference; the lanreotide has been effective in reducing symptoms like flushing and heart palpitations, but we want to see if it might be responsible for the abdominal pain. If it is, we’ll talk to the doctors about reducing the dose or switching to Sandostatin, another drug that acts very similarly to lanreotide.
Continue reading “A Belated Update”
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”
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.