If You Die in An Elevator, Be Sure to Push “Up”.


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. πŸ™‚ 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.Β 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 ❀

 

https://www.giveforward.com/fundraiser/cld6/support-mary-buell-s-fight?utm_source=facebook&utm_medium=graph&utm_campaign=vanity_page

10 thoughts on “If You Die in An Elevator, Be Sure to Push “Up”.

  1. Going to add a few more prayers for you guys…. You might want to add to your bucket list… Publishing your blog…. Cause its so GREAT!!!!!!!!!! LOVE to ALL of you……

  2. Once again – in case you didn’t know it – you rock! I love your attitude … even when it turns dark! I have forwarded your blog address on to Ellen – asking that she take the time to read it and hopefully be able to connect with you and your family. I’ve posted your charity page link on my FB because I know there are so many people that haven’t heard of you and your family, but need to!!! I have never met you but you will always be a part of my life & heart! xo

  3. Mary,

    I’m so sorry this is still happening.
    I had hoped that the bone marrow transplant would work.
    I will continue to pray for you and your family for peace as you face this .

  4. Let me help you with with one of those items – check out Wish Photo Company on FB and website. Professional family photos for you, on the house. P.S. I was friends with Kris – this is how I found your blog, after Kris passed. And I’ve been checking up on you ever since. It’s been a while, I thought about you, then I saw that crap ass cancer won’t leave you alone. I was going to offer photos to you anyway, as I do this often. When I saw your bucket list, I realized that our connecting has Kris written all over it. When you’re ready, give me a holler. I’ll be checking on you more often πŸ˜‰

  5. Mary, I have commented a few times before and went to high school with Derek (1 year younger). I have been following your journey for some time now and am blown away by your spirit and determination with this battle. You are such an inspiration! I mentioned in a comment last year sometime that I would be honored to take family photos for you + Derek. I live in Colorado but am coming home in early December (3-8th). If you’re up for it, I would love to make this happen. Shoot me an email and we can talk more! Big hugs, girl. ashbethlaugh AT gmail DOT com

  6. First off, you are truly amazing. You are one of the strongest women and I hope and pray that you get your happy ending.

    Have you considered getting a 2nd or 3rd opinion from Dr Owen O’Connor? He is in NYC in Columbia University Medical Center. I know it is far from you but he is one of the top if not the top lymphoma specialist in the world. He has successfully treated many many difficult cases with clinical trials. Just putting it out there you may want to give him a try and cover your bases.

    http://www.cumc.columbia.edu/lymphoma/our-physicians-and-nurses/owen-o-connor-md-phd

      • Mary, if you pursue the doctor in NYC, you are more than welcome to stay in my apartment in Manhattan (even if we can only offer a couch or air mattress–I’m sorry, it’s small!). Swear I’m not a weirdo–just an old friend of the Mannings. Please DO NOT HESITATE to take me up on this if you come here.

  7. You are just incredible, and your writing is helping so many people πŸ™‚ I know first hand how this can impact a family and your documenting of your life and your process is such a gift to people that have gone through this. My heart is with you and your family, stay strong! You inspire.

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