Well, we’re doing what we do most: waiting.
Waiting on doctors and test results and emails and dates. Supposedly this refines patience. Huh…
We wish we had a plan and knew exactly how this cancer surgery business is going to unfold in San Diego, but we don’t. People ask for updates. I have none. People want answers from me that I can’t give them. Funny feeling. I have these doubts from people I know and love and respect that gave input that my mama shouldn’t even have this surgery. Funny feeling. The struggle is real.
Small intestine cancer is so very rare and aggressive that most people with this cancer type never make it five and now ten years as my mama has. The cancer is so fatal and rare and quick that there isn’t significant worldwide data on how to treat this cancer. The patients themselves are not around long enough, nor are there enough of them, to collaborate a study! I found ONE! One study in the Netherlands that had 17 patients who reached the point my mom has – the point of trying this rigorous procedure—cytoreductive surgery to debulk and remove tumors followed by a warm chemotherapy bath poured directly in the belly.
These seventeen patients have made it an average of 31 months, but here is the thing – the data is so new and fresh, that this study is not complete! There are still patients living, changing this average lifespan. Changing the data.
The process to choose patients for this dramatic procedure has improved over the years. In former days, surgical oncologists would try anything at the request of the patient’s vie for survival. This left a very bad post-operative patient. To be qualified for this invasive treatment, the criteria have been refined and the door is narrower and choosing candidates who will have a favorable outcome is crucial.
To select patients, one guideline is the “peritoneal cancer index” or PCI. This PCI splits the abdomen into a tic tac toe grid. Each square is then scored. A rough sample of the scoring is that you get points by having tumors and whether or not they are invading other organs. The small bowel is also portioned into four quarters and each quarter is scored. They add up all of these points to come to a numerical reference. This number is very closely indicated to how well you will do after the procedure, the lower the score, the more likely the surgery will benefit you. If I am correct, the highest number they take is 13. My mom’s score, roughly, it was just after surgery and I was hashing out quick details with our surgeon at UCSD, my mom’s score is a 6 to an 8.
This factor, alone, makes me feel confident that she would not be a hacked up, chemically filled filet of Susan after the operation. This score helped me to see just where she was in “real life” in her abdomen.
While this PCI helps medical staff rate and grade her potential success to this cancer treatment, I smile because it doesn’t include her tenacity, spirit, courage, fight, and spunk. It doesn’t reflect how much Jesus is fighting for her. It doesn’t show all the prayers going up and the blessings and protection coming down.
When it comes to this stage of fighting cancer, there are a lot of difficult decisions and scary steps that one must go through. Our hope is that as mom’s story unfolds, other people with small intestine or rare cancer will find a source of strength and renewed hope. God’s plan is that we should all be in heaven, in personal communion with Him someday. We have hope and security in that. We are not ready to ship mom off eternity. What a glorious day that will be! However, her data set is just not complete, yet. As long as the doors of this earthly life keep opening for her, I will choose to support, encourage, and advocate for her. We thank you for your continued blessings and prayers. Amen.
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