Burning Man-di

Lately I have been working on #TheMandiList. Beyond checking items off, I have also been deciding on what items I want/should add (I would love to make it a fun list that people challenge each other to complete). I ran into a minor snafu on THE BIG ONE this year. Last year it was Europe. I wasn’t going down without completing my dream trip to Europe and we did it! Italy and Greece, the two big places I had always dreamed of visiting. We explored the heck out of them!

I cashed out a chunk of my 401k at the end of last year so that I would have “fun money.” You can do it without the big tax penalties if you have a terminal illness. I wouldn’t recommend draining your retirement money, unless you don’t expect to live to see retirement age. In that case, YOLO, have a fun money account – so that you can pay bills and be responsible, but do the fun things that are important to you. You can only do this if you are no longer working.

This year my big list item was Burning Man. Unfortunately, I had on my calendar to get online and buy tickets on the right day, but I had missed the part that I needed to sign up for the sale of the tickets a couple of days before. I hadn’t been spending much time online (I may have gotten the info if I had been since people were chattering about the right process among my friends), but I was on vacation and was trying to focus on being on vacation. I got through the long awaited line online – and COULD HAVE bought tickets, but I didn’t have the code from preregistering. My heart dropped. This was the big one. The thing I have always wanted to do, but time and life didn’t allow for it. I screwed it up. I was so sad.

I got my name on every possible list for getting tickets from people who weren’t able to attend. Luckily, someone out there saw my sad broken heart that was wishing and a hoping for a miracle (lots of people didn’t get tickets this year, so I wasn’t alone in my ticket begging). I found a special amazing someone and I have resale tickets with Mike and my names on them! So we do have tickets!

Researching costumes and prep are a great way to entertain myself as I try to mentally not deal with my possible cancer progression (I have been feeling like crud lately). Prepping for the version of me that will be in the dessert, embracing my artistic side, the bits of me that don’t have cancer. My inner child that just wants to go and take in new and amazing experiences… this has been my outlet. I am excited to take Fifi to the desert.

Garden party Mandi!

Garden party Mandi!

I have been adding bits and pieces to my Amazon list. I added goofy stuff for “The Playa” which is the lovely home of burning man, if you want to help out, or just want to check out the things I am thinking we are going to need, check it out: https://amzn.com/w/3VPYFX8Q76GGY – Amazon knows my address, so if you buy off of the list for me, it should ship to me <3 (don’t feel like you have to buy us anything, just sharing). Let me know if you recommend stuff I may have forgotten or should add.

I have created a Pinterest board: https://www.pinterest.com/advertisinggeek/burning-man/ it is pretty empty right now, but I am working on it! Please send my suggested pins, beautiful things I should add here!

I am on my way to Philadelphia for the Thriving Together metastatic breast cancer conference put on by Living Beyond Breast Cancer (I attended last year as part of the Hear my Voice Program).

When I get home I have my PET-CT scheduled (Wednesday of next week). I then see my oncologist and get my results (Thursday of next week). I am also supposed to have chemo on Thursday, so I am fretting whether or not we will be sticking to the regimen or if I have progression and what that means for my treatment. Tuesday the 19th is my brain MRI and appointment with my radiation oncologist. Hopefully we will be planning another round of SRS radiation and that the only growing tumor in my brain is the new one we found a month ago (cross your fingers), at the rate these things pop up… who knows. One day at a time. One day at a time.


Author: Mandi

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