Yesterday was scan day. Not my typical scan but an extra scan. Because why not who doesn’t want to spend the afternoon getting poked and then put in a tiny tube.
This scan was of my lumbar to see if I do in fact have progression. All signs are pointing to cells floating in my spinal fluid but this test is going to give us the answers.
Just to recap-hip/back pain started in January when I started working out (which I have not gone back-thank you/sorry Eric for working with me!), decreased sensation in my feet for the past two months, i had an emg (but don’t have official results back), I had a lumbar puncture which showed atypical cells floating around but the cells couldn’t be confirmed as cancerous (even though we knew they were).
Yesterday I messaged my doctor and asked for a script for some zofran (the nausea has been real since I increased my tagrisso). He messaged back that he would be calling me shortly to go over the results. When it’s 5:00 pm and your doctor is calling you shortly to go over results and next steps you know it isn't good.
Dr piper called and said although they weren’t final the scans showed progression and what we were suspecting. He is happy I am seeing Dr Rotow on Tuesday (egfr guru) and will get her opinion. Dr Piper noted that the scans showed progression we did in January didn’t show anything It could be that the increased tagrisso is doing its job but we don’t have a starting scan so we don’t know.
A part of me knew this day was coming sooner rather than later. But I didn’t want to believe it. I thought increasing my tagrisso would take care of things.
I’ve always known that progression is the way this disease goes. But until you have confirmation from a scan you always hold out hope. I feel like I got sucker punched again. I feel like I am being diagnosed all over again. Ive done a lot of crying this weekend. I’ve talked to Bryan, my mom, my sisters. I’ve come up with a list of questions. And Ive made some preliminary decisions.
I fully trust my doctor and his advice and thoughts on treatment but I am in the best place to get a second opinion. A part of me going into this meeting know my world is about to change. But a part of me is still hoping I’ll leave there with the suggestion to stay on double tagrisso.
I am sorry if you have reached out and I haven’t responded. I am exhausted when I get home from work both physically and emotionally. I am trying my best to keep in touch and keep things normal.
thank you to everyone that has reached out and supported us. This isn’t a journey I would wish on anyone. And there isn’t a day that goes by that I don’t remember k have cancer. we are so appreciative of everyone’s support and love!!!
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