Good Morning! It’s been a while since I’ve updated. Truth be told, there really wasn’t much to say. The last two weeks of recovery have been more of an emotional/mental struggle for me and who wants to talk, much less read about that?! Fortunately, I seem to have turned a corner in that department, in large part due to my husband John. He has worked tirelessly to care for me. He’s cooked, he’s cleaned, he’s listened to me cry my eyes out and complain. I realize he is my husband and many expect a spouse to step up and be a good caregiver. But having been a caregiver for a cancer patient myself, I can tell you, it can and often does take its toll. Not everyone is up to the task. He has encouraged me every step of the way. When I have felt most down, he’s reminded me of how far I’ve come and has been my biggest cheer leader! I would not be typing this out today if not for his care and attention.
UPDATES:
1. most important update, final path came back and confirmed low grade (grade2) oligodendroglioma! This is what we were hoping for and best case scenario!
2. The genetic and chromosome study done on the tumor show that it’s a co-deletion pathology. I have copied and pasted the significance of that below. Basically, it’s a good thing and suggests a better prognosis moving forward:
1p/19q co-deletion as a prognostic biomarker in glioma
The presence of 1p/19q co-deletion is a strong independent prognostic biomarker associated with improved survival in both diffuse low-grade and anaplastic tumours 3,7,10,11,12.
Among all diffuse gliomas, patients with 1p/19q-co-deletion have the most favourable prognosis 1
3. I’m. finally off steroids!! the last steroid I took was one week ago. and it shows. I slept 8 hours last night!!
4. I’ve met with Dr. Christopher Schultz my radiation oncologist and will start radiation on 4/26. 5 days a week for 6 to 6.5 weeks. I was terrified of radiation prior to going in, primarily because I know they have to strap your head down while getting the radiation. but thanks to some helpful advice from my friend Amanda, who is also going through her own cancer battle and has already endured head radiation, I was able to get through the radiation mask making process and feel like I will be able to keep my panic and anxiety at bay during the actual radiation process. Once again proof that worrying does absolutely nothing but rob of us the joy we are meant to experience at the present moment. I had built up the fear of the process so much in my mind that I would burst into tears just thinking about it. While normal, it’s not healthy.
5. Physically, I continue to improve daily. My arms now swing when I walk LOL! And tasks that most take for granted, I’m now able to do on my own (Shower on my own, dry my hair, make breakfast or anything for that matter, zip up my coat, put on my shoes). It’s easy to take some things for granted until you can’t do them. My left side is till a little uncoordinated but I can tell it’s improving every day.
6. Finally, for the first time since before surgery, I actually felt happy a couple days ago. I know that sounds sad and a little pathetic. But when I say I have been struggling mentally and emotionally, I’m not kidding! It’s to the point where I reached out to my old counselor and have a tele appointment with him on Monday. I say this because I am a HUGE advocate of addressing mental health issues. I have zero embarrassment or shame admitting that I need help in that department, so I would encourage anyone struggling with that to find a good therapist or counselor!!! I am fortunate to have a good one and also realize I’m dealing with some grief. I’m grieving the life I thought I was going to live and haven’t yet accepted the fact that I’m going to have a much different life than I wanted. For the first time since this all transpired, I’m also angry and a bit resentful that I’m having to go through this. I”m angry that we had to go through this 2 years ago and now we’re dealing with it again. The grief and anger took my by surprise and have at times been pretty overwhelming which is why I’m choosing to address it now. I don’t want to become an angry, resentful cancer survivor. It’s just not a healthy disposition.
That’s about is. I will know which chemo I’ll be taking after Tuesday of this upcoming week when I meet with Dr. Santos.
Thanks to everyrone who’s continued to pray for and reach out to me!! I appreciate it more than you know!!!!
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