Friday was my big practice round for radiation. I go back and forth between being totally fine and being totally worried. Paul and I had a great lunch in Phinney Ridge and then headed to the proton center. I took my calming medicine as prescribed, but when I got to the center I didn't feel calm at all. They took me right back and put me on the machine bed and brought out my mask. I almost lost it at that point and wanted to walk out but I just kept telling myself that the medicine hadn't kicked in yet. As they clamped me in to position I kept feeling a great desire to get out. I knew that if I raised my hand they would stop and take the mask off. I kept trying to tell myself that it would be over soon and rationalize how long I could make it before begging to get out. I also knew that if I took a break we would just have to start all over again and that would prolong the process. After a few rounds of arguing with myself about what to do I was able to recenter my thoughts and stop fighting with my inner monologue and I reminded myself to ask for help. I channeled my thoughts asking God for peace and strength and protection and endurance. Over and over, just simple prayers.. God, please be with me. God, please give me peace. God, please give me strength.
It was a really long time that I was in there. 30-45 minutes at least. I couldn't swallow.. my mouth was dry and I was really struggling, but I managed to make it through and that alone was a huge victory for me. The therapists told me that it was extra long on Friday because they were trying to make everything line up perfectly so that on Monday it is short and sweet. I hope that is the case. Even if it isn't, I made it through this one so I can make it through another.
After practice was finally over I had an appointment with my radiation oncologist and with my radiation nurse.
The radiation doctor wanted to share with me that his team of pathologists requested slides from UPenn to review my tumor themselves. They took a long look at the tumor and they agreed with the pathologists at Upenn that it is a mixed tumor -- part oligo and part astrocytoma. The astrocytoma part is the more aggressive of the brain tumor matter and the less well behaved part of the tumor. What the UW team found however, was that the astrocytoma part of the tumor was significantly smaller than the oligo part. The reason my tumor is classified as Grade 3 is because of the astrocytoma part. What Dr. Rockhill wanted to share with me is that his path team went back and forth with the Penn path team many times to analyze these slides. The astrocytoma part is such a small percentage of the tumor that IF they could change the Grade to a 2, he would call it a Grade 2. They can't change the grade because there is still astrocytoma tissue there, but it is likely that my tumor will behave more like a Grade 2 oligo tumor and less like a Grade 3 mixed tumor.
Perhaps the calming medicine was just kicking in or perhaps I have been on overload for the past few months but I just sat there, silent. I had no reaction at all. The doctor said that it would be a good time for a deep breath or a smile or something, but I just sat, somewhat confused, somewhat joyful. I asked cautiously, "This is good news, right?" He shared that for a Grade 2 tumor, they don't generally recommend chemotherapy, but instead radiation alone. At this point it was our choice whether to go ahead with the chemo or not.
As I said to my mom later... you think it's like going in for a sinus infection and they give you antibiotics and tell you what to do, but all of these questions and gray areas and possibilities and choices are so insanely difficult and overwhelming. We had been told from the beginning that we would need to do both radiation and chemo and now a few days before chemo is to begin we have the option to say no. Paul and I looked at each other and clearly agreed that if chemo for 6 weeks orally is going to be helpful than it is worth it. Plus, we know that the chemo and radiation boost each other and so they are mutually beneficial. What the doctor said is that if for some reason I have a terrible time with the chemo, which most people don't, I can choose to stop taking it. Even if I stop within the next six weeks and the tumor regrows I can take this same pill again later on.
This entire process from the very beginning has been so surreal and these moments were just added to the list of things that don't seem to make sense.
So, I suppose nothing has really changed and our course is still the same. The one difference is that the doctor said that at the end of the 6 weeks they will do another MRI to check for regrowth. At that point I was supposed to have one month off and then begin a cycle of chemo again. Depending on what my team of doctors thinks at that point they may suggest that I don't need to restart the chemo. We don't quite have our hopes up for that yet, but it is an exciting thought. It's such a weird place to be because no one wants to go through chemo and yet you don't want to risk not treating brain tumor cells and inhibiting them from growing.
In the car on the way home I said to Paul that it would be awesome to know somehow that the clean MRI and the current outcomes were a direct result of prayer. I have no doubt that there was a barrage of prayer on my behalf on Friday and the days prior. Your notes and emails and cards and messages and the flowers on my doorstep when I returned home are constant reminders that I am not alone on earth in this journey, but more importantly that I am part of something so much greater that has nothing to do with what is going on in these wacky cells in my brain.
My bible study on Thursday lifted me up so beautifully in prayer and surrounded me physically and spiritually with joy and prayers for healing, in such a palpable way that I continue to sit in awe at what the body of Christ looks like.
On Thursday we studied the wedding banquet in Matthew 22. The feast had been prepared and all the finest things were ready and the guests were too busy to attend. We all wrestled with the dark imagery in the parable, but I was reminded of how God prepares the best for us and we often settle for so much less.
It came into my thoughts on Friday afternoon in the kitchen somehow about worthiness. I was mulling over that banquet and all of the things that so many people have done for us and I just kept thinking that I want to be worthy of all of this. I want my life somehow to show that I don't take any bit of this generosity for granted. My neighbor offered to make the kids and Paul's lunches for the next few weeks and others offered to watch the kids during radiation and the list of offers goes on and on and in my head I just kept asking God to help me lead a life that is worthy of all of this outpouring. The banquet reminded me that the invitations have already gone out and the BEST things have already been set aside for me and that God is so excited to be with me and there is nothing else that I need to do, but I do constantly want to strive to lead a life that is reflective of how amazing my blessings are and how grateful I am for all that has been bestowed upon me. I truly want to be worthy of my blessings.
It's just one more day before this prolonged process begins and my pill box is ready.
Please continue to pray that the tumor does not regrow. Pray that the first week of chemo and radiation go smoothly. Pray that my side effects are minimal. Pray that my children are full of peace and not a sense of fear. Pray that Paul can find the space to deal with work and holding us all together and to work through his own fears and thoughts, pray that God's name will continue to be glorified in this process and that eternal and unending joy will fill all of our lives with the peace that passes understanding. Pray that we will be worthy of our calling and lead lives that show that we desire what God has already prepared for us.
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