We had our appointments yesterday at UW. But first, Paul and I headed to a little dive called the Northlake Tavern and had some monster pizza thing that was super good. It's close to the hospital and I think I might lose Paul to this place! Our appointment was at 2:30 but we weren't seen until about 4pm. Thank goodness people were covering the kids and taking care of our evening activities.
The first doctor was the neuro-oncologist. He confirmed what we heard at Penn that I need radiation followed by chemo. I have a lot of things in my favor. Apparently there are two genetic markers that are in my favor. Paul remembered this, but I don't remember hearing that -- I only recall the one I shared about last week, but hey it's good news! We talked with him quite a while and were able to ask questions, but I feel like I don't even really know what questions to be asking.
We were given many options. We have several choices for the type of radiation and several choices for the type of chemotherapy. All of the choices have pluses and minuses that we have to weigh very carefully and obviously none of them come with a guarantee. Different treatments have different side effects that range from virtually none, to severe side effects for the duration of treatment. Some of the treatments have been tested in clinical trials and some haven't. The tricky part about the trials is that it takes 17 years to do a trial. This means getting enough people who have the requirements for the trial to agree to rigorous monitoring for 17 years. Most people are diagnosed with brain tumors in their 40s or 50s so if they begin a trial at that age the results won't be in for 17 years after that. It takes a lot of money to do the trials and a lot of time and study. So in the time they are doing the trial several new drugs and treatments arise that will then need to be studied. It is impossible for the doctors to know the outcomes of the new drugs and treatments until they have been through the studies which takes a long time. It's a lot to process. With good reason, the FDA can't approve the new drugs until they are proven effective and the doctors rely heavily on studies from other countries where the introduction of new drugs isn't as heavily regulated.
One of the radiation treatments is currently in a trial and one of the chemo treatments is currently in a trial, so there are not concrete results for two of my options. All that the doctors can say is how they see patients responding during treatment and go with instincts and intuition. We do have completed studies for one radiation treatment and one chemo treatment.
I thought we would go into the appointment and hear the doctor's recommendation for what the best plan for me is. In fact there is no "best" plan. We have to choose what plan we would like to follow and which course we would like to take.
The options for the chemo treatments vary from 9 months to 2 years.
After the nuero-oncologistwas finished, a radiation oncologist resident came in and talked to us about radiation treatment options. I will have to do radiation for 6 weeks and that will start relatively soon, perhaps even next week. I'll be fitted with a helmet that will be molded around my head so that the radiation goes in the same exact spot each time. Many people react well to radiation and don't show many side effects. Others do feel sick. Some lose their hair, others don't. Most people lose their hair at the site where the radiation goes in and because the radiation will go in my head, I will likely lose hair at the very least in a circular area of my skull. I'm thinking bald man might be a good look for me:) Again, it also depends on the type of radiation we choose and how my body responds to it.
We have about a week to decide on which treatments we want, which questions we still have to ask, and to study the trial outcomes to see statistics and results.
The kids have a long weekend for President's Day and so we decided to take this opportunity to get away and relax. We're headed over the border to a house on the water in Sooke, CA, right on the Pacific Ocean. Paul is trying to convince the kids to swim in the ocean (it's going to be freezing!). We will all welcome a few days away of peace and quiet, nature and each other and we'll practice our best Canadian accents.
So I guess in some ways it feels like we can't even see the road, that everything is unclear. I could use some new wiper blades, some fog lights... perhaps an ice scraper because I really can't see what I should do or what is next. But, we will make decisions and we will move forward and we will figure this out too! We've come this far by faith for sure.
Today I ask special prayers for my new friend Bill who has his brain surgery this morning here in Seattle. I am thanking God for a new friend as well who I've been able to communicate with who has been through two brain surgeries. (A friend from church camp was a mutual friend and introduced us). She has an 8 year old and 5 year old as well. I am grateful for people who I can ask about the decisions they made and how their lives have changed. And of course I am soo soo soo grateful for all of you. I appreciate that you read and share because it gives me great comfort to know I am in your thoughts and prayers. I thank God for all of your help with meals and with the kids. I'm aware that we are at the beginning of the journey and so as I learn to ask for help I am grateful to know there are people around me who are willing to do whatever they can. Today I also ask for prayers for the kids. They have been such troopers through all of this so far, but I know that it isn't easy for them either. They are showing great care for me, they are trying to give me space when I need to rest and of course I can see a little bit of uncertainty in their eyes.
Without my direction they have both been immersed in their Bibles. Maeve has a new Bible she can read on her own and she carries it everywhere. She took it to school and was reading it to the other kids at free time (I couldn't help but laugh a little...) She was reading about Moses and Pharaoh and the Bible said "all of Moses' people... she looked at me and said "Mom, they are NOT Moses' people. All the people are God's people, aren't they?" I smiled and enjoyed her disagreeing with the text. She's feisty like me in so many ways! Noah asked last night if I would find him the story of the man who lost his strength when he lost his hair. I had his comic book Bible open to the story of Samson this morning and he was reading intently. I tried to gently coax out of him why he wanted to read that story and he said" It's just a cool story."
So keep us all in prayer this weekend... that we can laugh and play and snuggle and bake and celebrate love. Our love for each other and God's love for us.
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