Where to begin. . . most nights at the dinner table, our family goes around the table and shares the highs and lows. It's one of my favorite moments in the day and it helps our family to both reflect on the day as well as keep each other involved. [Shout out for adding a new element: high, low, buffalo--to share something random!] It's been a while since my last update, so I have a lot of highs and lows to share, but I think it's important as both a personal reflection on the last few weeks as well as a helpful way to keep you all up to date. 

First, thank you all for the prayers and well wishes after my chemo debacle. My first experience with chemo was pretty traumatic. The chemo treatment for acinar cell carcinoma requires chemo every two weeks indefinitely--there is no cure. I received my first chemo infusion at City of Hope for about 4 hours and then they attached a chemo pump that was to stay connected for 2 additional days. I felt good when I went home that night, but things started to get weird around midnight. I felt a burning pain in my chest and, assuming it was heartburn, I took some meds for that. It didn't work. I woke Jeff around 2 am and all I could say was that something was wrong. I was dizzy, pale, in a cold sweat, and my chest hurt really bad (the worst pain in my life, actually). I lay on the floor of the bathroom just praying that I wouldn't die before the ambulance arrived and my kids wouldn't have to see their mothers dead body. My heart rate had dipped really low, but they were able to get it to a better place before I was put in the ambulance. I smiled at Kylie and told her I was going to be okay; Lydia slept through it all. Thank God Kathy, my mother-in-law, had come for a visit!

The hospital stay lasted about 3 days and no one seemed to know exactly what happened... one doctor thought it was pancreatitis, another thought it was an esophageal spasm, and a third doctor thought it might be a vasospasm (a rare reaction to the chemo I was on). I spent three days on an all liquid diet getting weaker and the rest of the week sobbing because I didn't ever want to do that again. . . but what choice did I have? Chemo and emergency hospital visit every 2 weeks or die? It seemed impossible. 

The next week, I had 2 major appointments: one with my OB surgical oncologist and the other for an updated PET scan. The OB surgeon was amazing and very reassuring about chemo and she also said words that I had never expected to hear -- technically speaking, I'm in remission [for clarity, remission doesn't mean NO cancer, it means significantly reduced]. The tumors are gone and the cancer markers they watch for in my blood work are all within normal range. That day Jeff and I were floating on a cloud of hope; we celebrated with a date night and talked about our future for the first time in a long time. It felt great. We had time to figure out chemo because it was about eliminating, or at least managing, what was left. 

Then we met with the medical oncologist. . . he explained that acinar cells will never go away and that the chemo I had received was the best known chemo for this particular cancer (there aren't many treatment options for pancreatic cancer). Figuring out treatment was going to be very difficult moving forward and it was unavoidable. So, our hope bubble popped, I tried to shift my thinking--surgery had bought me time and I wanted to do my best to enjoy it, no matter how much or how little time I was given. 

The next week was eventful in all the right ways. Kylie turned 13 and we celebrated the heck out of our newly minted teenager (thanks to Mae, her bestie from NY, who surprised her by showing up at her birthday party). We also met with my second surgeon who went over the results of my PET scan. While I still have some lymph nodes that are reacting to the chemical agent that indicates NETs, the surgeons have removed 95-97% of the cancer from my body [what?!?!?] and what is left will be an excellent marker to help determine how my body is responding to medical treatment. The low tumor burden combined with my blood work are EXCELLENT news, but the acinar cells. . .

Which brings me to the next, possibly, BEST news of all. Having NETs with acinar cells is incredibly rare (literally, there have only EVER been 50 cases worldwide). My medical oncologist, on the sly, suggested that while he absolutely trusts the CoH pathology department, he wouldn't blame me if I sent them out for a second opinion because of the rarity of my case. So, I sent my tumor slides to MD Anderson (the #1 cancer research facility in the world) and asked for a second opinion. MD Anderson's report finally came back and they do NOT think there are acinar cells in my tumors, just 2 different "grades" of NETs (one slow growing, one moderate). The implications are huge. If this is all NETs, I will have to do chemo, but I have more options and it will not be indefinite. There are more treatment options as well so, with any luck, I'll be able to find a chemo that doesn't send me to the hospital for 3 days at a time. Woot! 

So, next steps. . . my CoH doctor recommended that we send the slides out to a third hospital to confirm the diagnosis (a tie breaker of sorts), so the slides are being sent to Sloan Kettering in NYC. Meanwhile, they are running tests to try to figure out why I had such a bad reaction to the first chemo treatment and make adjustments moving forward. Currently, I'm still taking the octreotide shot once a month (for NETs), but they have paused the chemo until we have a clear diagnosis.

And me? I'm trying to remember to make the most of every day. I go for walks with Jeff, help to cook (I have been doing a lot of plant-based, anti-cancer eating), and I just started gardening again (grandma would be proud). I am also trying to get my life back: seeing friends, going on shopping trips, and taking the girls on mommy-daughter days. Yet at night I still struggle and sleep doesn't come easy. I have learned that faith is not the opposite of doubt, but a response we hold on to. One does not drown out the other--like a strange harmony where both voices are present and real, blending and straining. The laments in the Psalms are like that--switching between fear and trust, faith and doubt, anger and joy. . . our prayers to God are equally mingled, a duet of sorts, and God extends his hesed (loving-kindness) to both.