Pivot

A lot has changed in a few short weeks. Since my last post, there’s been an increase of acute pain in Juliana’s back, side and hips plus she has been experiencing an increase in itchiness all over her body. She feels bloated and full after eating the smallest amount of food, making eating a generally unpleasant experience. She met with a nurse practitioner, a urologist, palliative care and has had multiple blood draws and scans to help her team figure out the cause and potential solutions to manage her pain and discomfort. 

On Tuesday of this week we met again with palliative care to discuss pain management and then met with her doctor. He was alarmed at the changes she has experienced in the few weeks since they last met; he has been receiving all the notes from her appointments as well as the results of the various tests and scans. He noticed immediately upon entering the room that she has lost weight and is slightly yellow. This confirmed for him what he was seeing in her test results - her liver is not functioning well. Liver dysfunction explains the severe itchiness she has been experiencing (a level 55 on a scale of 1-10) as we had previously assumed it was a side effect from the pain medication. It is also assumed the liver is pushing up against her stomach, explaining the discomfort created from eating. As such, he strongly recommended she restart chemotherapy immediately; a different chemo than she had previously but this regimen would also include Avastin, the drug planned to be administered in his original treatment plan. Although not completely surprised by this change in recommendation, Juliana was understandably disappointed and not excited about starting chemotherapy again. However, she agreed to start treatment for now. In this plan, chemo will be administered every two weeks for 3 or 4 rounds, then new scans to check to see how the cancer is responding.

The care team at Fred Hutch is incredible. They immediately took action and were able to schedule her for treatment for Thursday. She woke up Thursday morning with a new, acute pain in her side and the team fully evaluated her and conferred with her doctor before proceeding, making sure her pain was managed. The level of genuine care, professionalism, kindness, responsiveness and quick communication at this institution is worlds beyond what she has experienced in the past and creates such a different experience. Juliana tolerated the treatment with no immediate reactions. Today she is home and resting, following the protocols outlined by her team. We never know how her body will respond to treatment, so we are around and monitoring her, ready to help with whatever she needs.

Please continue to send her your love and support. She is so grateful for the blanket of love that has been created around her, knowing she will find a soft landing no matter the sharp and sudden turns on this unpredictable road.