Patti’s Story

Site created on November 14, 2021

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Journal entry by Emma Defreitas

The last month has been a tough one to say the least. Chemo finished on 12/27 and then radiation on 1/4. We had thought we’d managed the pain and things would be progressively getting better after that. Boy were we wrong. 

The pain from radiation ended up resolving once we found a good pain regiment. But then began the nausea and associated fatigue. She had plenty of antiemetics to try to combat the nausea, but nothing seemed to work. She was unable to eat or drink much of anything. On a good day, she may have taken in about 1/2 cup of broth or ginger ale. And those good days were maybe once or twice a week.

This went on for about three weeks. The doctors kept saying it was okay that she didn’t eat as long as she was getting enough fluids (which she had been receiving iv). Every couple of days we were checking in with her team, telling them that nothing was changing and they would tell us that she’ll turn the corner soon. She tried pushing through and tried to eat or drink anything she could possibly think of that would go down well, hoping that would help the nausea. Nope. We tried three different antiemetics with no relief. We tried literally everything we possibly could. No luck. 

So the nausea was one thing, then accompanying that was increasing fatigue. It got to the point where she could barely hold her head up while sitting. For the whole month of January, Mom had to have someone by her side at all times just to help her survive. I have never seen her that sick in my entire life. 

We ended up going to the oncology urgent care at Hopkins 3 times in one week, each time she was given iv nausea medication, steroids, Pepcid, and fluids. She would get to a good point after the meds where she could drink something without feeling nauseous.  Each time we were told she should be able to get on top of it now that she got a boost of iv meds. Each time we went home and she felt better for *maybe* a few hours. Then the nausea and fatigue would creep back in and we were right back where we started, if not worse. 

The third time we went, she had progressed to the point where she was had been vomiting the whole night before. We woke up with every intention of getting her to Hopkins and not leaving until we had answers. We were firm in the fact that something more needed to be done. We went through the motions once again with the iv meds and clear liquids. When it came time for them to make a decision whether to admit her or send her home, we told them… we’re not leaving. Something more is going on that we can’t manage at home. Her body shouldn’t be this weak three weeks out from treatment and we needed more help. 

They reluctantly admitted her on a Saturday morning. The dietician determined she met the criteria for moderate malnutrition. They began IV fluids, PPN (IV nutrition), and antiemetics around the clock. They repleted her electrolytes as her hungry cells sucked them up from her blood stream like they hadn’t seen any electrolytes in years. After the first 24 hours of treatment, she looked like a flower that had just been watered. The nausea had subsided, she was still fatigued but could actually hold her head up and type on her phone. The little things we take for granted each day. She was finally turning the corner. 

She stayed inpatient at Hopkins through the weekend and came home on Tuesday afternoon. While there, they did an endoscopy and found some narrowing of her esophagus (expected) but nothing else that was suspected to have contributed to the nausea and vomiting. We truly believe it was from becoming so malnourished. She was starving to death. 

We were so grateful for her improvement, yet hesitant to celebrate just yet. We’ve had this excitement before, and then each time the nausea came back. I’m happy to say, she’s been home for over a week and each day continues to get better. She’s still fatigued, and we expect that will take some time to resolve as she gets her strength back. But she is able to eat several small meals a day (mostly liquid or puréed) and drink without any nausea! Knock on wood….

I do have to say, there have been so many tears of frustration yet an equal amount of tears of gratitude for all the above and beyond help from our village. It wasn’t always pretty and it definitely wasn’t easy, but everyone rose to the occasion and there were multiple people volunteering to do what needed to be done to ensure Mom was cared for in the most vulnerable time of her life. Adam, Mom, and I can’t even explain how grateful we are. Now we continue to move forward with hope!


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