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I’m so sorry to tell you…

by Tom on April 17th, 2011

Tom passed away just after 5:00 PM today.

I still can’t believe it’s come to this. About a week and a half ago, Tom started to get very sick again. His lungs started to get worse, and he got very delirious. We sang to him, held his hands, and assured him there was no evil plot or virus out to destroy him and our phones. It wasn’t enough. His breathing and oxygenation got worse, and he needed to be re-intubated. I convinced myself it would be temporary — a couple days at the most — because his immune system was just returning and he’d be able to fight whatever was in his lungs and come back to start another round of chemo in no time.

This was not to be the case. His lungs continued to worsen, and the doctors started explaining that Tom had ARDS, and they were doing everything they could but Tom may never heal. I still didn’t really listen. I knew Tom could pull it together in time. They put him in the Rotoprone bed which allowed him access to more viable tissue in his lungs. It immediately improved his oxygenation, but still he couldn’t find his way back to us. Dr. Chen, his oncologist, explained to me yesterday that his cancer, though beaten into remission now, would likely come back in a manner of weeks. It was a dangerous, aggressive, take-no-prisoners kind of cancer that wouldn’t give Tom a break long enough to heal. There was no way he would handle another round of chemo, and no way he would breathe on his own again. Out of compassion, the doctor said, we needed to start thinking what Tom would want. Would he want to suffer, knowing his cancer would return before he could wake up and live his life again?

Our family gathered and discussed over the long weekend hours. Tom would be in pain if we weren’t giving him truckloads of narcotics. Anytime he woke up, he would face the terror of being unable to speak, see, or move in the Rotoprone, not to mention the delirium from the Versed. His lungs would stop working if we took him off the bed, and he wouldn’t heal in time to do more chemo, so the cancer would be free to come back to start its torture all over again. We decided Tom would side with logic and reason, and see that he had met his match with this awful lymphoma. He would be sad and scared to die, but would not want to suffer if he knew he had lost his fight.

We thought we’d try to hold off for a day and let everyone come say goodbye. But the doctor wisely asked… do you do this for Tom, or for yourselves? And we knew it was us who wanted the extra hours with him, and that Tom was suffering and we needed to stop it. Our family and legions of caretakers assembled and we all said goodbye… and the doctor pulled out his tube around 5:00 PM. The nurses, respiratory therapist, and doctor all helped us surround Tom and let him go. I can’t tell you how amazing the staff in Virginia Mason’s CCU were. Our nurse Sally actually came and rubbed my back and lifted my hair away from my face so that I could continue to just hang onto Tom’s hand for dear life. He passed very quickly, never even taking a breath after they turned the ventilator off.

This is so hard. It’s so wrong. Tom was a million wonderful things to all of us. He deserved to stay here and keep doing amazing things. I hope he continues to inspire and motivate each of us to keep being better people. Tom wasn’t really religious, but he believed in the goodness of humanity and the existence of something greater that made everything work. I am not religious either, but I like to think that Tom is somewhere… no, everywhere, soaking all the knowledge of the universe right up, and loving it. Learning and understanding things was one of his passions, and loving all of us was the rest of it.

Please join me for a vaguely Irish-style wake in Tom’s honor this Friday night, April 22, 8:00 PM, at the Rat and Raven in the University District of Seattle, where we can raise a glass and say Slainte! and tell tales of the great man we knew.

I also invite you to Tom’s memorial service which will be Saturday, April 23, in the afternoon… details pending.

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49 Comments
  1. Sarai permalink

    Oh, Jana…
    I am so, so sorry.
    Tom was a good friend, & he will be so, so missed,
    But so, so remembered.

  2. Melissa Thomas permalink

    Jana & Family –
    My heart absolutely breaks for you and there are no words to express how sorry I am for your loss, and for Tom’s life being cut so short. I’m greatful to have met him, to know that you (Jana) had the opportunity to be married to one of the truly great ones, that while his life was FAR too short, it had true happiness in it, and that he had such a wonderful group of family and friends to share his life with. I’m certain he is out of pain and in a better place, although that does little to ease it for those left behind. Thank you for allowing me to share some of his last moments with you all. I pray for peace & healing for all of you and that Tom will rest peacefully somewhere beautiful until the time where he is once again with those he loved in life.

  3. Kiki Hood permalink

    I was so sorry to hear the news from Tom B. after the St. Matthew. My thoughts were wrapped up in Tom all day, and for the last several. I know that I was dedicating St. Matt to Tom today, to his wholeness. I’m so sorry you had to let him go. It’s the hardest thing to do, and usually, the only thing you can do. My heart is with you, and I plan to see you on Friday. Let me know if I can do anything, of course. Love to you, Kiki

  4. Hi Jana, I met Tom through Toastmasters and had the priviledge to hear him speak many times. He was a strong spirit and such an inspiration. I am so sad to hear that he has lost this battle. My prayers are with you and your family.

  5. Kris and Ray permalink

    I am stunned…
    Don’t think I have the words yet…
    Jana, I will write to you later.
    Major hugs coming your way…
    Love, Kris

  6. Marian permalink

    Although I never met Tom, I came to love the words he shared and the valiant battle he fought. He will be missed by so many he knew and loved and by those he never met but loved him also.
    Marian

  7. Mark Howen permalink

    Tom inspired me in many ways. His humor, poise, intellect, and compassion were evident in all he did. I knew him through Toastmasters, where his speaking and sharing of ideas was a great stage for his talent. Most of all, he was just a great guy with a great smile and a fantastic wit. We are all blessed to have known him. Thank you so much for sharing as you have and keeping us informed of things. You too, dear lady, are an inspiration. Peace and blessings. Mark Howen

  8. Nathan Ray permalink

    Oh Jana, my heart goes out to you and everyone else who loved Tom so much. He was a beautiful person who will live in our memory for everything he brought to our lives.

  9. Rob permalink

    Jana, Sometimes the best are taken for a different purpose, so I’m sure you’re right that Tom is where he should be right now, everywhere. You will see him in his favorite places and know he is with you. Peace, Rob

  10. Goodbye Tom.

    You made us all better.

  11. Danielle C permalink

    Although I never had the pleasure to meet Tom personally, I was captivated by his words and his spirit. I have been following his story, through his own voice here on the blog and through updates from Mike and Meera on FB, and have been so moved by his grace, humor and dignity in these hard times. The world has surely lost a great person, and my whole heart goes out to the Music family. Peace and Love, Danielle

  12. Dave Smith permalink

    Tom, you inspired me. Thank you. I’ll do my best to pay it forward.

    D.

  13. So, so sad to hear this. :-( It’s just not right.

  14. Candice permalink

    I’m so sorry. This breaks my heart.

    Tom was my childhood next-door neighbor and one of my best friends growing up. Although we didn’t keep in touch after my family moved away save for the occasional letter and email, I never forgot about the Musics. I spent countless hours playing together with Tom and Mike (or Tommy and Mikey as I remember calling them :) ). I feel lucky to have known him–he was so smart and sensitive, always making sure we younger kids were having fun.

    It doesn’t surprise me at all what an inspiring young man he grew up to be. It’s devastating that he was taken from you so soon.

    My heart is with you and your family.

  15. Our hearts go out to you and your entire family.

    I will always remember Tom’s flair for life, his boisterous voice and contagious smile. Thanks for everything!

  16. Regan permalink

    Oh Jana, this breaks my heart. I’ve known Tom for about 15 years and have such wonderful memories of him. He was a great debate partner, mainainer of The History Box, and a true friend. The last time I really got to have a conversation with him was about a year and a half ago, fairly early in his fight against Lymphoma. As soon as I started expressing sympathy he cut me off and said “No, no, don’t worry about me. You just worry about spending extra time with your beautiful little boy and make sure he knows he’s loved. That’s all I need.” He was such a good man. I’m so sorry we all have to say goodbye.

    Tom was so lucky to have you in his life, Jana. Thank you from all of us for taking such good care of him. I hope you and all his family can find peace in his passing.

  17. Rob Heavey permalink

    This last update was hard to read, that is not a decision anyone should have to make. I am so sorry it had to come to this. Tom was a wonderful person and deserved none of this. Tom Music, you and your smile will be remembered.

  18. My love goes out to you, Jana, and your families, through tears shed for your loss and the loss of those Tom has touched in his too brief life. I hope you will find some kind of peace soon.

  19. Jana, I’m so sorry to hear this news.

    I have great memories of seeing Tom at various events around Seattle and enjoyed talking to him and you on the occasions we encountered each other.

    Tom was a kind man. He will be missed.

  20. Alan permalink

    I found this site through a video posted in YouTube which I found when reading reddit.

    After watching the speech he gave, I felt deeply touched, not only by his words but for his sense of humor and attitude. Even though I’d never read of his story before, this story has touched me and inspired me at the same time.

    My thoughts are with you and with Tom, wherever he is.

  21. Larry/Sandy McManus permalink

    To the Music family,
    Larry and I knew Judy when she was pregnant with Tom and clearly remember them bringing him home from the hospital as a days old babe in arms. He loved to pick the flowers in our yard so he could give them to his mom as a “special present”!
    We watched this young boy grow into manhood and marry. It’s so hard to think he’s not with us anymore.
    We can not fathom your hearache and are incredibly sad. May Jesus place his arms around us all and give us peace.

  22. Larry/Sandy McManus permalink

    To Jana and Music family,
    Larry and I knew Judy when she was pregnant with Tom and clearly remember them bringing him home from the hospital as a days old babe in arms.
    We watched this young boy grow into manhood and marry. It’s so hard to think he’s not with us anymore.
    We can not fathom your hearache and are incredibly sad. May Jesus place his arms around us all and give us peace.

  23. missC permalink

    This sucks. Tom is somebody who I will miss intensely. Finding out about his passing today hit me like a ton of bricks. I always considered myself to be a compatriot of his – we both had lymphoma, we were both coders, and we seemed to meet eye to eye on a lot of things that came up on chat on Planet Cancer….
    Though I find myself thinking “why him?”, I know that that is an unanswerable question.
    I wish things were different, but I guess since they’re not I have to work towards accepting the fact that this is what reality is…….
    I will be keeping your family in my thoughts…. Hopefully your umbrella will withstand the current downpour.

  24. Josh Maher permalink

    So sorry to hear this news, he will always be an inspiring person and I will always remember him that way.

  25. I like you too, Tom.

  26. Katie S permalink

    Oh. I am so very sorry. I never met Tom in real life, we somehow became connected via twitter when I was going through chemo for breast cancer last year. His was a voice I needed to hear, someone who was going through the same type of thing- always so encouraging, a bright spot. He will be much missed, but not forgotten. My thoughts and prayers to his whole family.

  27. i’m saddened by the news. your fight was strong. your family is in my thoughts. you’re missed tom.

    jana, though we’ve never met, i want you to know that in high school i remembered tom to be a kind soul. praying for you. i send my condolences.

  28. Ron Francis permalink

    As one of Toms Scoutmasters, I had the opportunity to see him grow from a boy to a man all the while maintaining a impish sense humor and a childlike optimism. His wit and wisdom were far beyond his years and I was always both entertained and enlightened by his responses during our Scoutmaster conferences. He is one those souls that pass through our lives and leave an indelible mark that brightens our day every time we think of them. His love of live and his irreverent look at adversity still inspire me today and although I haven’t seen him while, he still walks the halls of my memory and always brings a smile to my face. They say it’s not the size of the dog, but the size of the fight in the dog…Tom was a very big dog.

  29. Jana (and family),
    I met Tom at a party a few years ago and we were internet friends in that vague way people are internet friends ever since. He was an amazing, openhearted person, and I am so sorry for your great loss.

    Marianne

  30. Roy Leban permalink

    This is so sad. A toast to Tom is the right way to send him off. I know it’s what he’d want. I’ll try to be there. I’m hoping for root beer and chocolate ice cream to toast with!

  31. I’m so sorry to hear of Tom’s passing. I didn’t know him, but our mutual friends, Marissa and Nate Kaiser just donated to my UW Relay for Life fund in his honor. I will be relaying in Tom’s honor this year, on May 21-22 at Huskie Stadium. Just looking at his website and twitter page, I can tell he will be sorely missed. I hope his story will live on through all that knew him, and I am honored to share his name with others fighting for a cure. My heart is with your family. -Siiri Sampson

  32. Kevin Olson permalink

    Very sad to hear. Condolences to the Music Family. I was Tom’s Physics Teacher at Decatur HS many years ago and I just heard about this in an email today. I watched Tom’s video and remembered his ability to tell a story, informative yet entertaining… using his dry sense of humor. In fact, I just dug out an old VHS video that he and Brian Hill made for Physics their senior year, in which they built a rubber ball launcher and turned the video into a creative little movie that they presented to the class… which involved them driving around town with a ilttle bobble head on their dash board and some funky music in the background. Tom’s passing is a tremendous loss but he will not be forgotten, as he has obviously touched many lives.

  33. TL Hines permalink

    I met Tom through the lymphoma.com forums, and was lucky enough to get some wonderful advice from him about preparing an Ignite presentation. As I read your moving account, it became even more obvious that Tom was a rare and special person–and that he was surrounded and loved by rare and special people.

  34. Laura Brewster permalink

    I didn’t know Tom but I know Les, Tom’s Dad. It’s not hard to see the impact his life made during his experience here. I’m truly touched by his remarkable legacy and the tenacious fight he fought so hard. Tom – I celebrate the beauty you brought to this world. Thank You for the beautiful spirit you shared with the collective being of mankind – I know you’re missed. Les, Judy and family – you are in my constant thoughts.

  35. Chad permalink

    Jana, my condolences to you and the extended family on Tom’s passing. It was always a pleasure to see you two come through our doors and this news saddens me deeply. I would have liked to have known Tom better, his humor and enthusiastic outlook were admirable. My best to you all.

  36. Joyce B permalink

    No words to express the sadness I feel for your loss. I felt as though I knew Tom, and I certainly new the challenges he was faced with these past few years. You both went thru the cancer treatment. . . I’m sure you’re exhausted. Allow your friends and family to take of you! Love ya kiddo!

  37. Steve Tivel permalink

    Jana (and Family),

    Our thoughts are with you at this most difficult time. Although I only met Tom a time or two when he visited the office where your worked, Jana, the smile and sense of humor Tom exuded will always be remembered. As others have said, he was a inspiration to all of us.

  38. Brent Arnold permalink

    I’m so lucky and honored that I was able to see you guys last summer at my show in Seattle. Tom, what a sweetheart, you are missed a lot.
    My love to everyone who has given so much to take care of him.

  39. Kimm permalink

    You know a person is very special when a single weekend working together can create such an impact with so many people. Those of us who met Tom at the Startup Weekend Seattle event at Google will probably always remember the voice behind The Decider as he described how the group was already making revenue selling racy underwear.

    His personality was such a tour de force that many of us felt drawn into his sphere via twitter and blog posts, even when the topic turned to the uncomfortable issue of his illness. The last time I was with him in person, it was part of a small group hoping to keep each other on track with various projects – as we went around the table discussing status, he announced that his new project was fighting cancer and I have to say, it sure seems like he did an amazing job with that one even though the outcome wasn’t the one we all hoped for.

    He was a powerful and authentic speaker and writer and I’m glad that his words at least will survive as memory alone can often fade, even with someone as larger-than-life as Tom.

    Perhaps if there is more to our existence than what we know, he’s out there somewhere working out what his next new project will be and how to make it as much fun as possible for everyone involved while fitting all that “larger-than-life”-ness into the equation in a more lasting way. I’d like to think so anyway.

  40. Jim and Patti Halbmaier permalink

    Dear Jana and the Music Family,

    Like Larry and Sandy McManus, we knew Tom since he was born. Our children lived and grew up together on 339th St. in Federal Way. Although, we have not been in contact with Tom in many many years, we still have fond memories of all the good time we all had together. Jim and I and Julia send our deepest sympathies to you and the Music family. Tom will be watching over all of you. He is at peace now and in no more pain.
    Our prayers and thoughts are with all of you at this very sad time.

    Jim and Patti Halbmaier

  41. Theresa permalink

    Jana…

    My heart aches for your loss. And the loss of this planet because of the amazing man your partner obviously was. Never had the good fortune to meet either of you. But… your mom’s stories shine strong, reflecting the good folks you and Tom are. And I say that in the present and future tense deliberately.

    We raise a glass to Tom. Also raise a tree on the Swinomish Reservation dedicated to his memory. I will plant it myself and dedicate that tree, and Tom’s philosophy, to present and future generations, before the summer solstice.

    Looking forward to meeting you in person one day soon I hope.
    Theresa

    Peace your way. Thanks to the universe

  42. Kirk Kosinski permalink

    Jana, I am very sorry for your loss. I knew Tom online (message boards and IRC), though we met a few times in person to play video games. He was a great person, always nice and willing to help out, give advice, etc.. He will be greatly missed.

  43. Jenny Sharke-Fish permalink

    Thank you so much for sharing Tom with us…I am one of his Planet Cancer friends….and your words above resonate very much with my own experiences with Tom…he kept me laughing all of the time!…He loved this site http://hyperboleandahalf.blogspot.com/, and shared it with me because he figured out I was pretty silly and would love it too….I read it often, and when I need a boost – this is where I go….In Tom’s honor, for those who post here or visit check out the site and I know he will feel your laughter and smiles….Rest peacefully and joyfully my friend….

  44. Jana, I just…hang in there. I didn’t come see you last weekend because I didn’t want to bog you down with catching up, when you were full of remembering. You’ve been in my thoughts and prayers these past few weeks.

    *hugs*

Trackbacks & Pingbacks

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