Kim’s Story

Site created on February 2, 2021

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Newest Update

Journal entry by Erik Bergstrom

Hi everyone, Erik again. I'll get straight to the point since people have been waiting! This is a long one but there's a ton to update on.

First and foremost, Kim is doing well now!! The recovery took longer than expected and got a little scary at points, but every indication shows that the surgery was successful.

The surgery

The pathology on the resected pancreas showed negative margins, which is a HUGE DEAL. Basically, when a tumor gets resected, the surgeon (skillfully!) removes a small amount of normal, non-tumor tissue surrounding it. Not too much (because you kinda still need that stuff!) and not too little--  tumor cells can be sneaky and slippery, and normal looking tissue could still have tumor cells hanging around. Even a few cells left behind can grow into a new tumor so it's critical that the margins are "clear" or "negative".  And they were!

There was one small catch though. Along with the duodenum, gallbladder, and head of the pancreas, the surgeons also removed 22 surrounding lymph nodes. A couple nodes had been looking suspicious on scans for a while but not notably enough to warrant any treatment changes. An excellent description of lymph nodes and cancer can be found here. Essentially, sneaky slippery cancer cells can fall off the main lump and get to other places in the body through either blood or lymph. The lymph nodes are filters for lymph, and filter foreign junk (including cancer cells). They're where a lot of your white blood cells go to hang out. Imagine  If a cancer has mutated a certain way (usually through several steps), it can blend in there and grow on it's own as a new metastatic tumor. So the surgeons decided to pull the surrounding nodes out to stay on the safe side, and out of the 22 removed, 1 did test positive for cancer. But! (and this is not just toxic positivity), it's out now, and 21 other local lymph nodes did not test positive.

So in summary, recall: the 12 rounds of a**-kicking neoadjuvant chemotherapy were to

  1. Shrink/kill the main tumor to make it possible to remove  (check!)
  2. Hold it back from encroaching on other surrounding organs  (check!)
  3. Keep it from slipping into blood and lymphatic vessels  (check! and check minus)
  4. Squash anything that did manage to make it's way out and land anywhere  (as far as anyone can see, check!)

The pathology says that for the most part, it succeeded!!

Hospital recovery

Kim was able to walk around the very next day, and most parts of her digestive system "rebooted" correctly within the first few days. About a week in, there was one complication, called a chyle leak. A chyle (pronounced like "Kyle") leak is normally not serious. Basically, it means that a lymphatic vessel was nicked or damaged during the surgery (because they're actually quite fragile), and is leaking mostly fat (yep! the lymphatic system also helps your body take fat from the small intestine and ships it around your body in little protein packages called chylomicrons) into the space around her other organs. Damage to those vessels is actually more common with this level of involved surgery, especially when the surgery involves complicated vasculature and removing lymph nodes like this did. But the lymph vessel does have to heal, which takes time, medication to help slow that whole system down, and a very low/no-fat diet. She got put on clear liquids and TPN (total parenteral nutrition) which means all the nutrients she needs got delivered by IV (not fun!), and then the plan was to wait in the hospital for the leak to heal and monitor how much liquid was coming from her surgical drain. 

A few days later, my mom developed a fever from an infection where a pocket of this fluid had escaped to where the drain was not reaching, and pressed against her other organs causing a blockage. This turned a small complication into something very serious. The care team was bang on-- they noticed her condition going downhill and caught it fast, moved her to the ICU, and to an emergency interventional radiologist to remove the fluid. She recovered in the ICU for that weekend before getting to go back to non-intensive recovery. This was a really scary time for all of us and we're so thankful that it was caught so fast and was able to be treated.

Going home

And then (a full 3 weeks after surgery!), after recovering from the infection and letting everything heal, she got to go home! In the time since then, she continued the TPN as well as IV antibiotics  at home through a PICC line. Everything got shipped to the door in boxes with instructions and everything laid out, kind of like "Hello Fresh" ...but a giant IV bag. She was dealing with quite a bit of pain but that seems to have subsided. Last Friday, she went back to Hopkins to get everything checked out and debrief with the surgeon.  Kim's surgeon said (literally): "Live like none of this ever happened- do what you want. I have no restrictions for you."  So we'll take that!!

What's next

For the immediate future, it's looking like just more rest and getting her digestive system all the way up and running. We are so, so thankful that this year of care has been so successful (major shout out to Johns Hopkins!!), and we're so, so proud of my mom for facing this all with remarkable strength. Thanks everyone for keeping my mom in your thoughts and keeping the support coming, and we'll be sure to keep updating here!

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