September 8, 2016

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Maintenance Day 518: And The World Still Turns

For the past four or five weeks, Scarlett has been complaining of abdominal pain. We didn’t know whether or not to believe her at first because it often came up when she was told to clean or it was time for bed. Nothing that we tried, including reading “The Boy Who Cried Wolf”, seemed to make the pain go away.

After the “poop appointment”, Scarlett’s issue improved. The next week we decreased her methotrexate back down but the pain never went away. As soon as we increased her methotrexate again, the diarrhea came back. “My belly hurts” was heard a lot. At her regular appointment we discussed a tiered course of action. Increase her Pepcid to a full tablet twice a day. If that didn’t work, give a half tablet of Tums. If that didn’t work, give 1 mg of morphine and keep increasing up to 3 mg. we got to 2 mg before she was knocked out. And when she woke up: “my belly hurts”.

Last night, Scarlett took her puke bucket to bed with her. When I gave her her meds, the bucket was next to her head. She awoke in the middle of the night crying and slept with us. This morning, we had trouble waking her and our breakfast eater wouldn’t eat. So back to clinic she went.

It is our guess that the diarrhea has killed both the good and bad bacteria in her gut. We will change her Pepcid to a stronger medication for stomach acid and give yogurt twice a day. We will also eliminate dairy for the next two weeks. It’s going to be a long two weeks for our cereal, cheese and milk junkie.

Our other problem today was with her blood draw. After being accessed, the nurse couldn’t get a blood flow. Her port is failing. This is the third time in less than six months that she has had to have CathFlo to open her port. The port has reached its life expectancy and is puttering along for the last few months. We are going to push that thing right to the end of treatment. Scarlett wants to keep it after they remove it!

Even as we deal with problems with school, the world still turns. Life does not stop and we aren’t limited to one problem at a time. Life doesn’t stop for cancer.

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