The Best Advice I Recieved
I’m laying in bed right now thinking back on the time I was most desperate for community during this journey. I ran to the brain cancer Reddit page and through tears managed to write “Struggling with wrapping my mind around my diagnosis and prognosis: Earlier last week I got diagnosed with a diffuse hemispheric glioma h3g34 mutation grade 4. I’m devastated. I’m 33. My prognosis is 18-22 months. I’ve seen some posts and studies where people have lived with my specific situation for 5+ years. I am feeling really low and struggling with how to process such a limited life span as well as the grief I feel for all the plans I had for my life. I feel so alone even though I have a good support system and good health care team. I just don’t know how to even begin processing everything. I’m trying to just feel my emotions as they hit me and trying to find moments of normalcy throughout each day, but it’s so hard. I’m so angry that this is happening. This is such a shitty reality and I’m very much in disbelief most days. Any advice on how to tackle such an unimaginable reality?”
And I received this reply from user pathomnemonic:
“I truly feel for the loss of your future plans and dreams. My wife also has a grade 4 brain cancer. It's a different type than yours but the prognosis is equally disheartening. We have learned that there is still a life after diagnosis. But, it's not the life we had before. It took a long time to learn to appreciate this new life. All meaning of our prior pursuits was lost. The new meaning had to come from long discussions, time, and coping with the situation.
I'm also a pathologist. I mention this for two reasons. First, I am very familiar with your diagnosis and the prognosis. But, remember, those timelines are based on the sum of all peoples with your diagnosis regardless of all their other comorbid diseases (heart disease, other cancers, COPD, diabetes, etc) and their age. You are young and this will heavily lean in your favor. Additionally, you are alive in 2024. Many of the people that helped provide an understanding of that prognosis lived in a world where treatments we have now did not exist. It will take work, but keep up on the treatment options and be aggressive. Your post history looks like you are in PDX. OHSU is a great hospital. But, I highly suggest getting a consult with UCSF. They define the criteria for these diagnoses and they have tons of clinical trials.
The second reason I mention my job is that my particular specialty is centered around performing autopsies. It's not much comfort but I have found some realization in knowing that everyday that I go to work, I see people who had plans for that day but instead are now dead and on my exam table. These people often are young and die suddenly from a hidden disease or an accident. I've seen countless young people, parents, children, and families killed in car accidents. That particular demise hangs over all our heads and can come any time we are on the road. Unlike brain cancer, none of those people got to see their loved ones after they received their injury. None of them had a chance to wake up to a new world with lost meaning and new meaning. Their friends and family will never say 'I love you' or 'I'm sorry'.
For all the ways we may meet our fate, my only silver lining in this horrible disease is that we get some time together.“
This reply gave me perspective that I’ve held onto throughout the past six months. I think it’s worth saying this reply is why I treasure my time with my people so much and why I try to live with intention now. Every opportunity I’m sharing with people, I try to maintain being intentional and to allow myself and the people I’m sharing a moment with my respect for their time and a safe space. It’s a great honor to be a part of the lives of my people. I cherish whatever time we have together always.
I don’t have any idea how to cite this quote, but if you are curious about the thread: https://www.reddit.com/r/braincancer/comments/1bseino/struggling_with_wrapping_my_mind_around_my/