Dying, as it turns out, is incredibly boring. I expressed this thought to my boyfriend earlier today who pointed out that some people are bored with living too. That is much worse, I imagine. I am rarely bored. I always feel like I have a million things to do and not enough time to do them.
I’ve thought about checking out, and then people follow up and ask if I mean checking out of life permanently or checking out of hospice and I don’t know. I realize that I feel good enough to check out of hospice because I’m in hospice, with constant fluids and pain medication and electrolytes. There were times last week when I didn’t think I would make it to surgery, I was so weak and exhausted and in pain. Now everything is controlled, and I feel better, but on the outside I would be weak and sick again.
So far, one doctor and at least one nurse don’t like me. Someone likened it from going to first class to economy. I’m not used to making so many enemies now that I’m not in my 20s and I’m not drinking.
It’s strange to be the healthiest person in hospice. If I stopped taking my potassium and electrolytes and fluids, I wouldn’t be able to walk or control my lower body and eventually my heart would give out. It will probably take about a week or so to die. But I’m not there yet, so it’s odd. I want to sneak out to see the cats and do stuff. I’m also not well enough to be among the rest of the living, though. I’m in between.
I need to check out or check out. I probably need to do the permanent check out but I am scared. I have been resistant to home hospice but now I’m in a Libra conundrum of indecisiveness.
Josie, we do not know each other, but I have followed your blog since not long after I was diagnosed with stage 4 thymic carcinoma, sometime around early 2016.
Reading your words has taught me so much about how to handle the ups and downs of living with cancer with grace and humor. You have made it through my greatest fear, which is saying goodbye to my dogs and my cat, and being aware enough to know that I am really saying goodbye. If that doesn’t deserve at least a day of sobs, I don’t know what does.
My thoughts are with you, and whatever you decide to do as far as checking out will be the right choice for you.
You will be in so many people’s memories. Even someone like me, who you never met. I hope that you have peace and are surrounded by your good friends and that you continue to have awesome pain control!
I wish I could say it better than all this, but long story short, thank you for being a wonderful guide, through such a difficult part of life.
Thank you for reading and for reaching out! I never know what anyone reads and I often assume my words just fall into the online abyss. Saying goodbye to the cats was really hard, but two people have agreed to adopt the trio and I know they’re going to have a wonderful new home, and that is a relief. They’re going off to a new adventure in a new city soon. I wish they knew how it wasn’t my choice to leave them, but I like to think they can sense how much I love them. I wish you the best for living through cancer.
I only discovered this website today, as I was searching for ICE treatment and auto transplant experiences, as I’m suspected to be refractory Hodgkin’s.
I’m very sorry about your new tumor and the way it is turning out. Myself, as facing potential relapse (or new cancer, we don’t know yet), am thinking to end my life in a more radical way – suicide by gun. I’ve already begin searching for gun, but that’s another talk for a later moment.
By the way, as far as Hodgkin’s go, are you in remission from it after auto you did? I think transplant gives a 40-50% of long term remission and cure, but I don’t have hope anymore.
You seem to be very smart and perceptive, I hate reading that you are dying. Your writing is very good too – shows a highly intelligent person.
I hope you have peaceful days, if there’s anything I can do – maybe a chat or smth, please let me know, you have my email.
Reading at some of your posts truly touched me. I’m very sorry it went this way for you.
The cancer I have now is not related to the Hodgkin’s lymphoma at all. It’s just bad luck–two types of unrelated cancer. If you have Hodgkin’s lymphoma again, what are they going to do? An auto transplant? I have to say it wasn’t my favorite thing in the world, but it really wasn’t that bad–the ICE and the transplant. It was tough, but I was sedated for the worst part. I can’t emphasize enough that while a transplant is daunting, it really is amazing when it works and you get a new lease on life. I am not an expert on mental health or suicide, but I don’t think it’s worth killing yourself over. In a morbid way, your body is trying to kill you so try not to let it. I’m probably days away from dying and I’m still emailing doctors to see if there’s anything I can do. I don’t know you well enough to say that cancer didn’t destroy your life but I don’t think it has to be that way. Don’t let it win! I’m here for now if you need to talk/email about it! My opinion, not really knowing you, is to do the ICE and transplant and keep going. I did it and even though I am dying now, I don’t regret the extra time I got.
Thank you for sharing this journey.
I’ve tried to comment before but your blog thought I was spam. Just wanted to let you know that more people are reading than you think.
Just thinking about you, and hoping that if you decided to stay, it’s at least a little more comfortable for you in hospice now. And if you decided to sneak out and see the cats, then hell yes.
Just thinking about you, and being amazed and in awe of your resilience and grace through all of this.
Oh Josie, I’ve tried and tried commenting on your posts but I keep getting blocked. I hope this one will go through! I agree with Sarah. We’ve not met but you have given me strength and encouragement beyond words. You will be remembered by so many. Not all of us know you personally, but through your writing. Be true to yourself and I believe that we know when we’re ready. I hope, for you, that is true.
I left you a brief note on Twitter and you were kind enough to like it—the internet version of tipping your cap as we walk in opposite directions and look for a moment at each other’s eyes. My brother died in 1995 at the age of 43. Cystic Fibrosis. I can tell you he does indeed live on in MY memories. I cherish his pottery and drawings and memories. He was religious; I am not. He wrote a song about dying—Short Mourning—that was filled with his Christian worldview. Back in the day when Christians weren’t insufferable asswipes. That song is on the interwebs somewhere. I’m following from afar. Godspeed.
Josie – I discovered you and your writing only recently, when I read your dating while dying essay in the NY Times. You write with such integrity. And you convey so very well the emotional fullness of life–gut-wrenching sorrow, relieved by humor, softened by comfort, set aside by indecision, and even subsumed by boredom! Who else could weave all that real stuff into a beautiful, familiar essay?
You are so incredibly kind and talented and beautiful, Josie. You are admired and loved
Josie left us the early morning of December 3rd, 2019. She was 42.
I hope you are at peace now, and that your words will continue to live on.