Since it is well past time that I posted some updates, I figured I should take advantage of this long weekend and get to it.

Rachel had the surgery to remove her port on November 29, as scheduled. Everything went smoothly; she was only in the operating room for about 45 minutes. In the pre-op area one of the nurses gave her a stuffed bear, complete with a surgical cap. In post-op, another nurse brought her a “Freedom Cake” to celebrate having her port removed. ❤

About a week before Thanksgiving, Rachel started having more pain in her back again (it never completely went away after surgery, but started to get worse.) On December 3 she noticed a fairly large squishy lump on her back, at the bottom of her scar. She saw her oncologist here in Portland on December 5, who indicated that it felt like fluid, which is what we had thought, and that it was probably related to the same fluid buildup that showed on her last scans. He suggested an X-Ray of her spine and an ultrasound of the area and said that he would inform her doctors in Boston. We heard from her surgeon’s office (in Boston) the next day, saying that he wanted to see her in Boston and have an MRI down there, which was scheduled for December 14. A few days later we got a call from her radiation oncologist, who wanted to rule out the fluid being in her lungs, so she ordered a chest X-Ray for when we went to Boston.

The chest X-Ray was clear and the MRI showed the same fluid build-up from right after surgery. Both the surgeon and the oncologist thought that the fluid amount appeared to have increased. The surgeon said that it was likely that she was leaking spinal fluid, but since her symptoms (occasional headaches and the back) didn’t indicate an emergency situation and wanted to take a wait-and-see approach. It was possible to do another surgery to repair the tear in the dura around the spinal cord, but that in itself would come with the risk of another tear. Plus it would again require a plastic surgeon to make sure the area was covered well, just like the last surgery. He said that the fluid would likely continue to leak until it filled the space and then it would be stable. Draining the fluid would only serve to clear out the space so that it would leak more, causing more headaches and other symptoms. He wasn’t sure what exactly was causing the increased pain, since it seemed to be below the area where they removed portions of her spine and all. The official MRI results were ready the next day (after we went home) and the radiologist seemed to think the fluid was only slightly increased (the report said “no interval increase” or something like that.) There was no evidence of disease (NED)/no cancer recurrence on the MRI.

On December 28 Rachel had a routine “post-treatment” CT scan of her chest, ordered by her oncologist here in Portland. Scan was clear – no cancer evident.

Rachel reports that for the past week her back has seemed to feel slightly better, so hopefully she is finally on the mend.

And now for fun stuff: since my last blog post, we have celebrated Christmas, Rachel’s 19th birthday (not in the hospital this year!) and New Year’s, and visited Garden’s Aglow at the Coastal Maine Botanical Gardens.