Breathing
Hello, friends. It’s been a week over here and it’s one month from the beginning of this whole journey.
On Monday we met with our Neuro Oncologist to discuss treatment plans and get set up with our care teams. It was one of those moments that completely knocks the wind out of you. While our Neurosurgeon did get all the tumor he could, we learned that there was never any possibility of getting it all and there is tumor showing on the left side hemisphere from the center where it touched the right side tumor. We were always going to have to do chemo and radiation but this was one of many new pieces of information.
The bigger change is in the diagnosis; we learned that it is not the low-grade tumor like they originally told us. It is a Glioblastoma which automatically ranks it as grade 4. Do not google Glioblastomas, the Google has nothing but deep dark bleakness around this diagnosis. We very much were not expecting this and it took the breath from us for the last few days.
You read about these inspiring stories where people go through these kinds of diagnosis and are the most positive people you’ll meet; always treating every day like a gift and not letting the little things get them down. Those people, like us, have to go through this phase. Grief is the same process and always starts in the same way for everyone. Right now we’re navigating the shock best we can but we are not ok. We will get through this phase but it’s awful right now.
Small light in the tunnel is that the tumor shows characteristics of an Ogliodendroglioma which means it’s got defined edges and particular characteristics. It will help our Neuro Oncologist track treatment and see if there would be any clinical trials down the road we may qualify for.
Right now we are breathing through each excruciating moment. One day at a time is too long so we take it moment by moment. We’re finding that planning for short term dates and goals helps; like wedding planning for our ceremony and party next weekend.
Every patient is different and we will wait to see how Paul responds to chemo and radiation which starts the week of 9/26. He’s got 6 weeks of both and then chemo again after. We will meet with the Neuro Oncologist through the process and she will review results of the treatment to see next steps.
Thank you to everyone walking with us on this tough journey; we love you all. Thanks you for staying close to us even when it hurts to feel what we’re feeling. We get it and we appreciate your love and support.