https://jakeseliger.com/2024/08/04/starting-hospice-the-end/ Search [ ] [Search] The Story's Story Menu Skip to content * Home * Subscribe * Contact * About * Essays * Interviews * My Novels Starting hospice. The end August 4, 2024 By Jake Seliger in cancer Tags: cancer, Essays 35 Comments I'm entering hospice. It's time, and realistically past time. The squamous cell carcinoma tumors are growing, and the two doses of spot radiation I got on June 10 and 12 have utterly destroyed whatever quality of life I had. This weekend, a nurse came by and did some planning with Bess and me. Our extensive efforts to find and start another clinical trial have turned out to be futile, and I've withdrawn from the next-best potential clinical trial, BGB-A3055 in Dallas, at NEXT Oncology, because there's no feasible way for me to do it (the people at NEXT, however, are and have been amazing: if you're looking at clinical trials or live in Dallas, schedule a consult). HonorHealth in Scottsdale, where I live, has a TScan slot, but my physical condition remains terrible for essentially the reasons I've written about so extensively that there's no need to belabor them. My days and nights are filled with unrelenting coughing, hacking, and pain. My whole jaw area is numb, likely from tumor growth. I wonder how much (or many?) of the headache I'm experiencing actually come from tumors, rather than coughing and other problems. Why hospice? Bess wants the support, after I'm done. There are rules and bureaucracy even in death, and although she admits to being bad at asking for help, she feels overwhelmed now, and certainly will be later. Her bandwidth, she says, is only for me. The details about what comes after are too much, and too distracting. I'll keep reading messages until close to the end, though I may not have the strength or presence of mind to reply. I exist in a hazy, druggy fog. I've heard Tyler Cowen say in podcasts that he finds the fascination with people's last words to be overblown, because at the end of life people are rarely at their cognitive peaks and often forget the constraints and desires that drove much of their lives (I'm paraphrasing and have probably gotten some nuance incorrect). One virtue of a prolonged end is that I feel like I've said everything I have to say. I don' t know that I have a favorite, but I'm fond of "I know what happens to me after I die, but what about those left behind?" Same with "How do we evaluate our lives, at the end? What counts, what matters?" I'm tempted to keep citing others, but if you scroll down into the archives you will find them. I meant to turn these essays into a memoir, but that is a project never to be completed by me. Bess assures me that she's going to complete the project and do her best to get it published. We've created so much together in the process of building our life, and Bess says that doesn't need to stop just because I'm not physically here, and that putting both our baby and our book into the world gives her immediate future the purpose that she'll badly need. Though having my life cut short by cancer is horrible, I've still in many ways been lucky. Most people never find the person who completes them, I think, and I have. I've been helped so much. Numerous oncologists have gone above and beyond. Many people, friends and strangers, have asked if there is anything they can do to help. The # 1 thing is to support Bess and our soon-to-be-born daughter, Athena, whatever "support" may mean--the most obvious way is the Go Fund Me, as any remaining funds will go to Athena. I wish she could grow up with her father, but that is not an option. Being a single mom is hard;[1] growing up without a parent is hard; I cannot see what Athena's future holds, except that I think and hope it will be bright, even though I will not be in it, save for the ways in which friends and family promise to keep me alive for her. If you want to donate to research, I don't know the absolute best place, but one good-seeming choice is the Arc Institute: "Arc researchers pursue both curiosity-driven exploration and goal-oriented research. The institute will initially focus on complex diseases, including neurodegeneration, cancer, and immune dysfunction." They don't have a turn-key donation page up yet, however, so send them an email and ask: "Why not?" I also got a lot of care under Dr. Assuntina Sacco at UCSD's Moores Cancer Center, which does have a turn-key donation page. Let's make the future better in every way than the past. Donations can be made in memory of someone who has passed. I wrote earlier, in "How do you say goodbye?", The gift must be given back, sooner or later, willingly or unwillingly, and sadly it seems that I will be made to give it back before my time. I have learned much, experienced much, made many mistakes, enjoyed my triumphs, suffered my defeats, and, most vitally, experienced love. So many people live who never get that last one, and I have been lucky enough to. One friend wrote to me: "You did good--when the time comes, I hope that brings you additional peace." Many of us don't get what I've had: the opportunity to live a full, generative life with people who I love and who love me back. Yet I was able to have all of it, for a time. --------------------------------------------------------------------- [1] Though if anyone can do it, and find a way to do it successfully, it will be Bess. [hospice-and-the-end] Share this: * Share * * Email * Facebook * Reddit * Twitter * Print * Like Loading... Related Post navigation << More isn't always better: death and over-treatment as a downside of agenticness "No Salt" >> 35 responses 1. wistful_firefly says: August 4, 2024 at 6:17 pm Thinking of you and Bess and Athena. Thank you for sharing your life, your words; may the road be easier for those after you. Have learned so much from following you this past year. You shall be remembered for a long time to come. LikeLiked by 1 person Reply 2. neontree65540dfaaa says: August 4, 2024 at 6:28 pm I hope you frame that picture for your daughter. All the words. And none of them. The look says it all. Unconditional everlasting and forward love. Thank you for sharing with us strangers. My world, at least, is better because of you. LikeLiked by 1 person Reply 3. Irv says: August 4, 2024 at 7:00 pm Thank you for your blog. It's been an exquisite pleasure to read for the last couple of years or so. I'm subscribed to about 200 blogs, through my newsreader, but I was always looking forward to your next post. Except for these last two.Thank you both for sharing your journey with us, through the hell that is head and neck cancer. Hope that Bess keeps on blogging. She too is immensely talented. Thank you for your posts regarding the FDA bureaucracy that prevents experimental treatments to reach metastatic cancer patients, and for trying to help fellow cancer patients. You made the world a better place. My heart goes out to both of you and your family. I'm so sorry that you won't get to see your daughter. She will be very proud of who her father was, I'm sure. I can totally understand why Bess loves you so much. You are special, and won't be forgotten. May you dream of your loved ones forever... till you meet them again. LikeLiked by 1 person Reply 4. daniel22ddda5e3b says: August 4, 2024 at 7:08 pm Jake, thank you for your writings. You have been helping me confront life in ways that I've been avoiding until now. I don't know what happens after death, but until then and whatever comes after, I hope for the best for you. LikeLiked by 1 person Reply 5. pauldcao says: August 4, 2024 at 7:12 pm Dear Jake - reading this post filled me with both sadness and admiration. Your courage and honesty are deeply touching. Thank you for sharing your journey and reminding us of life's true essence. I'm learning to be a better writer and love your writing style, so I've been learning from it, and will continue to do so through your archived posts. I'll remember you for a long time. Wishing you peace and comfort. LikeLiked by 1 person Reply 6. nathanmelby says: August 4, 2024 at 7:15 pm Jake, You have likely heard this thousands of times, but it won't hurt to repeat it. I am sorry to read this piece and every other posting since you revealed your diagnosis. I hope you find solace at the end. I was thinking about you earlier today as I drove across Wisconsin with my wife and 1-year-old son in the back. My thoughts kept returning to my inevitable death and your excellent framing of "the gift." I suppose I will think about life forever altered by your words and experience. Existence really is a beautiful thing. Please don't reply even if you have the energy. Your time should be spent elsewhere. LikeLiked by 1 person Reply 7. Tom Nieboer says: August 4, 2024 at 7:36 pm All the love in the world to you, to Bess, to Athena. It's been an absolute privilege to know you in life and through your writing. Thank you. LikeLiked by 1 person Reply 8. quegringo says: August 4, 2024 at 8:02 pm Thank you, Jake. Thank you for taking us all on this journey with you. We have all been changed by the experiences you took the time and effort to delicately articulate. LikeLiked by 1 person Reply 9. Vera Bergermann says: August 4, 2024 at 8:17 pm Jake, I am sorry that you have reached this point in your health. I hope, too, that you and Bess take comfort in the knowledge/ belief that people can communicate even when they are no longer Earth-bound. I look forward to the day when I am acquainted with both Bess and Athena. The insight, humility, and sense of humor that are so uniquely Jake Seliger will be missed by all who have known you personally and through your writing. Wishing you peace, Vera Bergermann LikeLiked by 1 person Reply 10. MLiles says: August 4, 2024 at 8:19 pm Thank you from someone else who has danced with HNSCC. You leave us all better for having known you. [?] LikeLiked by 1 person Reply 11. Katie Howland says: August 4, 2024 at 8:20 pm Jake, Your words have informed, inspired, and broken my heart (at times). The words I wish for you are peace, comfort, and freedom from pain. You have accomplished so much. Thank you. ----------------------------------------------------------------- LikeLiked by 1 person Reply 12. marcoalfonso48c22da494 says: August 4, 2024 at 9:07 pm Thanks for sharing your story. Have loved reading your writing. Sending you good vibes from Australia. Cheers. LikeLiked by 1 person Reply 13. coveringhome says: August 4, 2024 at 9:42 pm You.are.a.brave.man. Tears fill my eyes as I know the drill... having been diagnosed and treated with radiation and chemo last year about the same time as you with tonsil cancer. But tears and a smile for you, your wife, your love, your child, your mother ( my friend from high school) your writing, your bravery.... Your life. Blessings on you sir. LikeLiked by 1 person Reply 14. denizb33 says: August 4, 2024 at 10:15 pm Sending {{{hugs}}} to you both [?] LikeLiked by 1 person Reply 15. Angel says: August 4, 2024 at 11:27 pm From one stranger on the internet to another, peace be unto you and your family. Thank you for sharing your journey. Best wishes to all. LikeLiked by 1 person Reply 16. Gerard Visser says: August 4, 2024 at 11:45 pm Thank you so much for sharing so much of your mind-blowingly difficult and terrible journey. You're words have been a big inspiration, your courage and honesty are incredible. Wishing you peace from The Netherlands. LikeLiked by 1 person Reply 17. Paul Holden says: August 4, 2024 at 11:50 pm Your words over the past year have left their mark on me, and presumably many others. I'll carry your words and your example with me. I wish I had more to offer than stock phrases, but please know that they're heartfelt. LikeLiked by 1 person Reply 18. Kimberly Riggin says: August 5, 2024 at 12:50 am Jake and Bess, my heart hurts for you. I've read and cried. I've felt. My boyfriend has the same cancer as you. He's in remission for the moment with keytruda. You gave me hope when I had none. You've made me a better person. All my love to you both. Kim LikeLiked by 1 person Reply 19. Alex Toskey says: August 5, 2024 at 4:36 am Jake, You are an incredible person and a truly talented writer. What I've learned from your essays will better my life and help me contemplate the inevitable setbacks. Your record of treatment and navigating trials will be particularly useful for me if my melanoma ever returns. You've also inspired me to prioritize my own writing and read Brooks' book. Thank you, Alex LikeLiked by 1 person Reply 20. meghanmcfadden15 says: August 5, 2024 at 5:48 am Jake, I have been following you for several months now, and I want to join the others in thanking you for sharing your experiences and your reflexions. Your writing has positively impacted me in a profound way, and I am sure my loved ones would thank you as well if they understood. Your contribution to the world has been an undeniably positive one, and that is more than can be said for many. I am wishing you and your family so much peace. LikeLiked by 1 person Reply 21. L Watson says: August 5, 2024 at 6:14 am Happy you are getting the support you and Bess need. I hope they make this transition period as bearable as it can be. I remain angry at the various systems and processes that failed to get you help in time and grateful for the many humans that helped you. We sugarcoat cancer stories too much. Too many ribbons, too many "fighters." It's a goddamned brutal disease. Thank you for always telling the truth even though I know it must have hurt. I hope your willingness to tell the truth moves the needle for future patients. Bess, if you ever set up a 529 for Athena. I'm sure people here would give. I wish there were more we could do. LikeLiked by 1 person Reply 22. xtinetravers says: August 5, 2024 at 6:27 am I'm sorry someone so valuab LikeLiked by 1 person Reply 23. Turtle says: August 5, 2024 at 6:36 am Praying for you Jake. May you find eternal peace in Jesus Christ our Lord and saviour. Thank you for all you've given in your writing and your advocacy. I wrote a book review of the Emperor of all Maladies. I was thinking of you and Bess when I wrote it. LikeLiked by 1 person Reply 24. Summy says: August 5, 2024 at 7:18 am Good Luck Jake. Your dignity and bravery moves me. I will think of you. Summy LikeLiked by 1 person Reply 25. douglasbain says: August 5, 2024 at 7:43 am Thank you Jake / Bess for your words over the last 9 months since I discovered you. You have re-invigorated myself and many others into taking action in preparing better solutions to find and participating in clinical research. It is your honest and brutally frank words that have woken us up to 'do better'. Thank you. LikeLiked by 1 person Reply 26. Jim Grey says: August 5, 2024 at 8:16 am I hope you can be reasonably comfortable in hospice, and reach a peaceful end. You are fortunate that Bess will be by your side all the way through. If you don't write again, thank you for your excellent writing all these years. LikeLiked by 1 person Reply 27. shana says: August 5, 2024 at 8:45 am I just learned about you this morning. What a gift of your time and attention and care you have given your readers with these words and what seems like vigilant updates on your journey. I wish you the best for your remaining time here and on the other side. I wish the best for your growing family. You have left them with so many gifts. Peace be unto you (all)! LikeLiked by 1 person Reply 28. Henry says: August 5, 2024 at 8:54 am I'm so sorry for the pain and suffering you've had to endure. You write beautifully - thank you for sharing your story with us. I wish your loved ones all the best for the years ahead. LikeLiked by 1 person Reply 29. Pingback: Monday assorted links - Marginal REVOLUTION 30. Vickram Pradhan says: August 5, 2024 at 10:35 am Thank you for your writing Jake. We're all blessed to be able to share in this gift you have given to us. LikeLiked by 1 person Reply 31. Ryan Ackley says: August 5, 2024 at 12:35 pm I read one of your earlier blogs on your health struggles. It was just idle afternoon reading one day. It touched me and I carried around your story in my head. Several times in the last six months or so, I've found myself thinking about you and your story out of nowhere. It's not much but I thought you would like to know. Thanks for sharing your story. LikeLiked by 1 person Reply 32. AnonIl says: August 5, 2024 at 1:41 pm Thank you for writing, and my sincere prayers for you and your family. LikeLiked by 1 person Reply 33. Sanford says: August 5, 2024 at 2:02 pm I'm sad to read this. I lost my wife to pancreatic cancer on Memorial Day this year. She, like you, fought like hell while maintaining an amazing attitude. She was only on hospice for 4 days but they did provide tools and support that helped us greatly. I have followed your story from a distance and will keep you and your family in my thoughts. LikeLiked by 1 person Reply 34. Emilie says: August 5, 2024 at 2:17 pm I imagine a world where an entirely private and secret blog exists, one that you and Bess have created and have been contributing to for months and have password protected in some tiny cave of the internet, just for Athena to read one day. On birthdays, milestones, when she needs to know more about you, her dad, and your love as a couple navigating all this. I know those writings will be even more glorious than the ones you've graced us all with, strangers all over that have been thinking of you often. Thank you for sharing yourself with us. LikeLike Reply 35. bobbudd says: August 5, 2024 at 3:36 pm Thank you for all your words. I'll see you in the fabric of the universe. LikeLike Reply Leave a comment Cancel reply [ ] [ ] [ ] [ ] [ ] [ ] [ ] D[ ] Email Subscription Enter your email address to subscribe to this blog and receive notifications of new posts by email. Email Address: [ ] Sign me up! Join 3,700 other subscribers Contact me: In Anything You Want, Derek Sivers says: "The coolest people I meet are the ones who find me through something I've written." Reach me at seligerj@gmail.com. Recent Posts * "No Salt" * Starting hospice. The end * More isn't always better: death and over-treatment as a downside of agenticness * Links: No one wants to talk about death, deep takes on the human condition, and more! * Links: Slowness as a problem, kinds of conversations, curing cancer, and more! 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