This is indeed sobering news to read. I myself have not long ago. Let's say a few weeks... Have been told that my astrocytoma had an unexpected growth. It turned out to be a stage 4 cancer growth. So I am dealing or you know what not dealing with it really. What is acceptance? I don't know anymore. I feel almost despondent in itself. I have a counsellor from before I got diagnosed with the cancer. When I got told about the stage 4 aggressive growth and I told her it was devastating for us both. I didn't think at the ripe age of 35 I'd have a maximum time limit to do stuff. What does it mean? What happens with all my belongings? So many questions and so little time...but thank you
Again your writing touches me at a profound level. I started following you when my husband was diagnosed with glioblastoma 6 years ago and succumbed to the disease just 4 months later. While he did not survive, I have endured. Following you and your wife’s story has been inspirational. As a recovering alcoholic, I understand the power of acceptance of my disease and more importantly the power of persistence in a day at a time reprieve; the same persistence I read in your writing. Please accept my thanks, gratitude and admiration.
About a year ago, I had a friend that really changed my thinking. Didn't have brain cancer, but uterine cancer. By all rights she should've been dead years earlier. I asked her if she had any thoughts as to why beyond some dumb luck on her side. She told me that she never thought too much in advance and if some things just never got finished, that was ok. It was only important to keep trying. There was no rush to finish everything. Only to keep moving forward.It might seem lackluster, but she raised hundreds of thousands of dollars for research and contributed to several research papers. My take away was to keep doing something, but you don't need to everything. It is awkward at times, but also easier not to beat myself up over not getting every wild dream accomplished.
Except the rock opera. That'll get done. I'm 90% there.
This passage. I sometimes wish I could print it out on a card with ribbon and send it for the friends and family who sometimes seem to refuse to hear anything other than rosy-colored glasses. “Rather than a call for support, this post declares that we can call a thing what it is and don’t have to be nonstop psyched. Anyone who wants you to be strong all the time has never tried to carry this thing.”
Adam I have been following your journey since 2016 when I was diagnosed with a LGG which is inoperable due to it being in an eloquent area. I love reading your blog and your social media posts. So many times you have written what I have been thinking - so many times its freaky actually! When I think about writing about the process of MRI's or anxiety I always tell myself - no-one will be interested. Then you write on that exact same topic (with much eloquence than I could ever do admittedly) and I think dammit I should have written something! I am fascinated that you are being offered TMZ for your recurrence. In Australia, I am on a trial because my LGG progressed to a grade 3 and having finished SOC treatments - including TMZ (x2) in the early days, radiation etc. Are there no trials in the USA? Have your heard of Richard Scolyer - you should look him up. Here he is in a one person trial for his wild type GBM - trialling I believe 2 types of immunotherapy and a vaccine. Pls reach out if you want more details. Diane
I’m mostly at peace with my destination but I have the occasional day where I regret the decisions I have made in the past and and regret the travails in my future and what will happen to my family in the hereafter. I have decisions to make too and I don’t know yet how I will make them. I wish us both peace.
This is indeed sobering news to read. I myself have not long ago. Let's say a few weeks... Have been told that my astrocytoma had an unexpected growth. It turned out to be a stage 4 cancer growth. So I am dealing or you know what not dealing with it really. What is acceptance? I don't know anymore. I feel almost despondent in itself. I have a counsellor from before I got diagnosed with the cancer. When I got told about the stage 4 aggressive growth and I told her it was devastating for us both. I didn't think at the ripe age of 35 I'd have a maximum time limit to do stuff. What does it mean? What happens with all my belongings? So many questions and so little time...but thank you
Belongings. I look at all my books and wonder what happens to them when I am gone.
Such real times. Your honesty about acceptance gives me peace.
Again your writing touches me at a profound level. I started following you when my husband was diagnosed with glioblastoma 6 years ago and succumbed to the disease just 4 months later. While he did not survive, I have endured. Following you and your wife’s story has been inspirational. As a recovering alcoholic, I understand the power of acceptance of my disease and more importantly the power of persistence in a day at a time reprieve; the same persistence I read in your writing. Please accept my thanks, gratitude and admiration.
About a year ago, I had a friend that really changed my thinking. Didn't have brain cancer, but uterine cancer. By all rights she should've been dead years earlier. I asked her if she had any thoughts as to why beyond some dumb luck on her side. She told me that she never thought too much in advance and if some things just never got finished, that was ok. It was only important to keep trying. There was no rush to finish everything. Only to keep moving forward.It might seem lackluster, but she raised hundreds of thousands of dollars for research and contributed to several research papers. My take away was to keep doing something, but you don't need to everything. It is awkward at times, but also easier not to beat myself up over not getting every wild dream accomplished.
Except the rock opera. That'll get done. I'm 90% there.
This passage. I sometimes wish I could print it out on a card with ribbon and send it for the friends and family who sometimes seem to refuse to hear anything other than rosy-colored glasses. “Rather than a call for support, this post declares that we can call a thing what it is and don’t have to be nonstop psyched. Anyone who wants you to be strong all the time has never tried to carry this thing.”
Thank you for being so real, Adam.
Adam I have been following your journey since 2016 when I was diagnosed with a LGG which is inoperable due to it being in an eloquent area. I love reading your blog and your social media posts. So many times you have written what I have been thinking - so many times its freaky actually! When I think about writing about the process of MRI's or anxiety I always tell myself - no-one will be interested. Then you write on that exact same topic (with much eloquence than I could ever do admittedly) and I think dammit I should have written something! I am fascinated that you are being offered TMZ for your recurrence. In Australia, I am on a trial because my LGG progressed to a grade 3 and having finished SOC treatments - including TMZ (x2) in the early days, radiation etc. Are there no trials in the USA? Have your heard of Richard Scolyer - you should look him up. Here he is in a one person trial for his wild type GBM - trialling I believe 2 types of immunotherapy and a vaccine. Pls reach out if you want more details. Diane
I’m mostly at peace with my destination but I have the occasional day where I regret the decisions I have made in the past and and regret the travails in my future and what will happen to my family in the hereafter. I have decisions to make too and I don’t know yet how I will make them. I wish us both peace.