MyDyingWish

MY DYING WISH 

I haven’t done an update in a while, mostly because I was hoping to come back with good news in September after my PET scan was completed. I think you can tell by the headline of this message that the news isn’t good. In fact, it’s terrible. 

 

My cancer went from being a fairly treatable throat cancer to an untreatable metastatic cancer. It got into my bloodstream, traveled and, so far, it’s made a home in my liver, lungs, and bones. The most pain is currently in my spine and liver. I’m almost done with 10 more session of radiation to kill the tumor on my spine. It seems to be working.

Unfortunately I had to reschedule my wedding (there’s a story there) this past Thursday, 10/18/23, because it’s not working fast enough and the pain was unbearable that day. Luckily everyone was able to make it to the rescheduled date, Thursday, 11/2/23. Don’t fret if you didn’t get an invitation. Only family, witnesses, the minister, Matt, myself, and a handful  of friends (4) were invited. The ceremony is being done at my house which is the size of a shoebox. 

So what is my dying wish? First it would be not to die, I’m devastated with the thought of Mark-Robert growing up without a mother. I’m a realist and this cancer is terminal. Any study I’ve applied for I’ve been denied because the majority of studies out there are immunotherapy treatments and I have an autoimmune disorder (Crohn’s) that disqualifies me. 

Instead, I need to make sure that my son is set-up in life before I go. I have some assets (not much) like money for his education, bank accounts, 401k, 403B, IRS from prior jobs, property, and stocks. Basically, I NEED A LAWYER! 

My son is 16 and the treatments I’m taking to prolong my life might give me another year of life. I need a will and something like a trust (but not a trust) to make sure that my son, who is on the spectrum, can manage the money he’s getting, and he won’t be taken advantage or that he won’t blow it all in a year. I’ve spent his whole life setting aside little bits  of money and stocks to make sure he would get a  good start to his adult life, but I thought I would be here to help him manage everything. I won’t be. That means that he needs legal protection.

 

I know my dying wish isn’t a sexy one or one that raises a lot of excitement, but my son means the world to me and it’s been eating me alive that I’ll be leaving him so early in his life. I’m making him a box with letters, birthday cards for the bdays I’m going to miss, pictures, stories of my life and happy memories we’ve had together and anything else I can think of that will be a keepsake for him to have so he will know that whether I’m here or in the afterlife that I’ll always love him. I know nothing will replace me actually being here, but it makes me feel like I’m being proactive by doing these things. I feel helpless, and I’m clueless about what to do. I’ve never died before (morbid humor). 

I had my last fundraiser already set-up and it was still active, so I just picked a round number which, when added to the last amount I asked for, equals $3,800. Most, if not all, of that money will go toward a lawyer. If there is anything extra, Matt and I are going on a honeymoon cruise to make some final memories, and the extra money would be helpful.

 

For my next update I will tell you guys how Matt and I reconnected through this fundraiser, and fell in love…