How do you not let a brain tumor take over your life?

Hello! New to the forum and grateful to find a place to learn, share and meet others in the community. Lately, I have been asking myself "where do I find deepest nourishment in the Watch & Wait protocol/lifestyle?" For me, it is reading, writing and connecting with others who get it (and aren't tired or bored with talking about it, lol!) . Thank you for being here!

Susan, welcome! I'm grateful that you re-animated this discussion where @lorena1963 asked such an important question "How do you not let a brain tumor take over your life?" - a question one asks at the time of diagnosis, through treatment and with watch and wait.

I'd also like to invite old and new members living with brain timor like @bobhills @hinklda @bjh369 @nancye3 @jkenser @amkaloha @saylor479 @pleu @mepowers @mgreen616 @gilliland1102 @kristin1990 to join the conversation.

While we wait for others to join in, Susan, can you tell me a bit more about you? What type of brain tumor did you have? What treatments? Are you a journaler (is that a word)?

I honestly don’t know yet. I work, but apparently I can still do that and think about it. I can also think about it at the gym.

We are new to the tumor journey. My wife Marylou was diagnosed with a grade 1 meningioma in July 2021, surgery in August by 2 follow up it had grow 1 cm from 5 to 6 cm. November 30 she had her 2nd surgery and new diagnosis of grade 2, then a month in the hospital and rehab, now home rehab. Blinded by the tumor, we are in the process of applying for disability and Home Care Provider. 1/7/22 we see radiation and oncology. My blood pressure has got so high I had to go on meds. God has been our rock has sustained us and will continue to do so. Visits though few and far between have been a great comfort. Relax as best you can and learn to rest on God our strength. Laugh and love, God gave you this to test your faith to make you stronger and not to destroy you. It is easy to forget our mortality but it is a blessing because our God is immortal and will sustain us into eternity.

Thank you! I discovered how much I love to write quite by accident. I was emailing family and friends to share all of the wild ride details and emotions I was experiencing after my initial diagnosis in 2019. A pineal tumor (name: Pinena) was blocking the flow of cerebral spinal fluid, causing obstructive hydrocephalus.

Brilliant surgeons performed a miracle surgery called an endoscopic 3rd ventriculostomy at Mayo in Phoenix. They gave me back my life, but the path to the tumor was too deep and dangerous to reach during that life saving surgery. Now, the docs Watch it with MRI's and I Wait it with gratitude, writing (journaler for sure!), patience, anxiety and every emotion and feeling in between!

Pleu, you are very early in the discovery phase of your brain tumor (meningioma) journey. I think it is completely normal that this new diagnosis seeps into your thoughts unbeckoned while at work, at the gym, upon waking, etc. The next phase of learning about treatments and starting treatment is also intense.

I think @tlosborne @susanaz and @hamillc2 can relate and hopefully will share their experiences of getting through the diagnosis and treatment stages.

Pleu, what helps keep you focused?

@pleu, I certainly relate to being preoccupied with the diagnosis. I am in my third year of working out how to accept the situation without constantly worrying about the future. One practice I use - when I notice thoughts arising about the future (what if...?) , I ask myself this question: "Other than your (my) thoughts about future or past, what exactly is the problem, in this very moment?". Then I look around wherever I happen to be and just start to name things I am grateful for, i.e. my dog, the couch, a book. It definitely is a practice and takes a lot of practice! Hope this is helpful. 🌻

TBH, solving problems has always been my focus. Creating paths to an end, mapping out the route and bringing on the tracking metrics and charts. I can’t get my hands around those things for this. What keeps me focused on that is finding the solution and knowing there is one. I am really the wrong personality type for this! Couldn’t have picked a worse set of traits if I had to choose. I am actually that weirdo at work who enjoys those things and would have an hour long meeting on the historical importance of data tracking and metrics. (Lucky for everyone else, this has never been approved!)

I have trouble with that. Between the migraines, the constant outbreaks of hives, and the IBS-C, I don’t want to know what my other problems are! I have gotten really good at not asking that, but diving headfirst into complex data issues that can drown most things out. Just can’t let this one go, though. My brain was truly the only thing that seemed to be working correctly, except for the migraines.

@pleu, your sense of humor will be a real asset on this journey!

Researching brain tumors and medical mysteries certainly fall into the category of complex data, and it sounds like your problem solving strengths will be a super valuable resource too. I imagine you'll be able to have productive conversations when you connect with the right docs because they are evidence-based and data driven too.

Can you let me know if you find any comfort for those frustrating hives - just started experiencing them last summer and they seem to come and go with no rhyme or reason? Thanks! 🏵