Had our onc meeting today. Went better than expected, but here is the long and short of it. I am going to die. Well we’re all going to die, right? It’s just that I’m probably going to do it sooner than I anticipated. And well, I don’t have anything to say about that except that it sucks. And that I’m terrified. That I’m mad because I don’t even feel sick yet. That there are like thousands of pedophiles and rapists who should probs have cancer over me, but who am I to judge, I guess. And that I have so much more that I want to do with my life.
They are going to start my treatment with Rituximab. We’re hoping that this will keep my cancer at bay for quite some time. There is no way to know how long…could be 2 years, could be 5, hell could be 20! No one knows because it’s a relatively new drug, and well…I’m just a special ass mother fucking cancer case. So I’m shooting for 50. 🙂 In the mean time, my onc has a call in to a doc at MD Anderson in Texas. We are hoping to fly down there some time in the next week or so, to get a second opinion. There may be an option for a clinical trial for me, but if not, we’re hoping that they have some other ideas of how to treat my (what normally is a very cureable, slow moving cancer, and clearly is not in me) fucking bullshit disease.
Additionally, it should be noted that Derek’s father, before passing away from non Hodgkins Lymphoma, lived for 19 years with the disease! And that was long before the types of treatment that they have available now. Which means there are ALWAYS new treatments developing because lymphoma is typically slow-growing, and therefore easier to research. So we are keeping all appendages crossed that I can maintain myself with Rituximab for a few years, and within that time, some smarty pants doc is totes going to come up with a totally new treatment plan and a cure, and I’m going to live until I’m 130, because by then, I’ll have so many drugs in me that I will be bionic.
But. Just in case. I have decided to create an actual bucket list of things I want to accomplish, because of this quote: “The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time”.
Maybe I’m so afraid to die because I haven’t lived fully. There is still an awful lot that I’d like to do. Here are just a few that I can think of. I may not make it to see all of these, but I have also decided to write letters to Mack to mark those milestones that I’ll have to miss. But maybe not. Because I’ll be bionic. Obvie these things cost money, so we may not get to all or any of them until we figure out our situation with Texas, but whatevs. A girl can dream.
1. Take a honeymoon (we’ve never actually had the chance to do that because..well..I got knocked up and had a kid before we were married)
2. Take professional family pictures, as well as some professional wedding photos back where we were married because we really never got many of those. at. all.
3. Take a family vacation–somewhere super fun that Mack will remember. Disney maybe? Have never been.
4. Have a kick ass 40th bday party
5. See Mack go to Prom (and she better not be a bitch. Or be slutty. Or be a slutty bitch.)
6. See Mack graduate high school
7. See Mack graduate college
8. See Mack get married
9. See my grandkids. See what I look like old; what Derek looks like old; See what retirement is like; Watch my friends’ kids grow up; See Gen 3 at Memorial Day playing flip cup; finally move out of our starter home—These. These are things I know I wont get to see. At least not from an earthly perspective. Here’s to hoping for a good view from above. (Note: UNLESS of course, as stated above, some smarty pants doc is going to come up with a cure for my bullshit disease).
Dr. C. is leaving me, that whore. jk. I love you. But she has taken a new job at the University of Michigan. I’m sure she forever regrets the day that she gave me her personal cell phone number, but I still plan to call it on the regular, just FYI. I will have a new onc named Poalo. He’s from Chili I think. Subsequently, Poalo is pretty hot. I hope he doesn’t start reading my blogs because I just said that. I mean if I AM going to go out….might as well go out looking at a pretty face, eh?
On a serious note, I really wanted to thank Tara O’Brien, who set up a fund-raising website for our family, as well as to everyone who has so generously donated, and planned fundraisers and events for us. I can’t tell you how much this means to us. My husband won’t be able to work this winter, and my days off will likely be a-plenty. We have no idea what is going to happen with Texas; if I will get into a trial; how long we will have to be there, etc. etc. If I get worse and start to show symptoms, I imagine I will have to be in-patient, and so then theres that, child care, etc. etc. etc. Some of the trials that may (in theory) work for me are technically for non hodgkins lymphoma, and which also means that I wouldn’t qualify for those. That means the money would have to come out of pocket. Obvie there will likely me a number of post death expenses, but I’m hoping that is like 100 years from now, so I’m not even going to discuss that. Also by then, Ellen Degeneres would have heard our story, and paid off our debt, so we’ll be fine. So although I hate to accept charity from other people, this is one time where I will not allow money to stand in the way of life or death (potentially), and we could really use all the help that we can get. Honestly, the outpouring of love and support has been so overwhelming. Its very humbling to know how many people care about me…about us, and I promise every single one of you that I will try to pay it forward.
Just don’t forget. Life is short, and it is precious. It’s amazing how much detail you see in something as simple as a flower petal once you realize that it could be the last time that you see it.
PS. It’s not your fault dad. It is simply the cards I was dealt. I love you ❤