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Posted 2016-11-08T17:40:29Z

11/8/16 - The Disease Progresses

Happy November and election day, everyone! The last week has shown progression in my disease unfortunately, and below are some updates.

Mobility: The last couple days have presented changes that have significantly impacted my ability to get around. My ankles have swollen, the tumor in my lower abdomen has been protruding out from under my ribcage making it difficult to bend forward, and basic movements are now exhausting. Luckily I have a cane to help me get around the house, but leaving is proving to be increasingly difficult.

Breathing: Up until a couple days ago, my breathing was fine, and I didn't need to use my oxygen much at all. Yesterday and this morning I've found myself using it more, as everything seems to be exhausting to me now, even changing clothes, getting up and down the stairs, and doing basic functions.

Pain: As the tumors have grown, so has the pain, along with my requirements for pain meds. I've found myself increasing the dose daily, because at this point I do want to be comfortable and not have to suffer unnecessarily, but do find myself much more drowsy from the meds.

Sleep: I'm still only sleeping in 45 minute to maybe 2 hour blocks at a time at night, for a total of maybe 5 hours. I'll find myself dosing off during the day as well now, again perhaps due to the pain meds.

Liver Failure: My eyes continue to get more yellow compared to when we started hospice, but in my opinion not by much. Hopefully this means that my liver remains functional in removing ammonia from my body, which is why I'm still not mentally confused. With all that said as mentioned above, the tumors on my liver have grown significantly such that you can see it protruding out of the middle of my chest or middle abdomen.

Conclusion: Although the disease continues to progress, I'm still so grateful to be around on bonus time. Any day you wake up and can open your eyes is a good day, and I'll continue to hold onto that until the very end.

I'll do my best to continue to update the site going forward, but if I'm unable to post again for whatever reason, Sam will take over.

Thanks for reading, and I wish you all Happy Holidays!

- Jerome

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Comments (33)

  • noelle c
    noelle c

    Our love and prayers are ALWAYS with you guys.

    4 years ago · Reply
  • Michalis Tsavdaridis
    Michalis Tsavdaridis

    Keep up the fight Jerome! You are always an inspiration for all of us! You have all our love and thoughts!

    4 years ago · Reply
  • Anna Leung
    Anna Leung

    We love you Jerome! You're always in our thoughts. <3

    4 years ago · Reply
  • Diane King-Mendoza
    Diane King-Mendoza

    We think about you often!!! You are so strong even during these times. Praying for you always my friend

    4 years ago · Reply
  • laricel cambronero
    laricel cambronero

    Thank you for continuing to share. We think of you daily! Know that you, Sam and Caleb have our unconditional <3 & support. - JR & Laricel

    4 years ago · Reply
  • R. Tan
    R. Tan

    You continue to amaze and touch so many people...even people you have never met like me! Your positive spirit and outlook continues to inspire others. Prayers to you and your loved ones. Happy Election Day!

    4 years ago · Reply
  • Nai Saelee
    Nai Saelee

    Thank you for your openness and honesty. We hope to continue to hear updates from you!

    4 years ago · Reply
  • Marissa Scroggins
    Marissa Scroggins

    Sending all my love and prayers!

    4 years ago · Reply
  • Mary Marlatt
    Mary Marlatt

    Continuing to keep you in my prayers. You're an amazing person. God bless you and your family.

    4 years ago · Reply
  • Jon Herendeen
    Jon Herendeen

    Thanks for the update Jerome. I have been thinking about you a lot over the past several weeks. Keep up the good fight and you are in our prayers.

    4 years ago · Reply
  • Marilee Byers
    Marilee Byers

    Hi, Jerome, thank you for your generosity in providing updates and helping us stay in touch. You, Sam and Caleb are in my thoughts and prayers every day.

    4 years ago · Reply
  • Greg Hunter
    Greg Hunter

    Continued prayers for you bro!

    4 years ago · Reply
  • Dawn Liburd
    Dawn Liburd

    Always great to hear of your progress and continued positivity, Jerome. You and family remain in my thoughts and prayers. Special greetings from the Nevis crew :)...

    4 years ago · Reply
  • Lindsey Baumker
    Lindsey Baumker

    Thinking of you, Sam, and Caleb all the time. Sending love and strength to you all!

    4 years ago · Reply
  • Patrick Alfonso
    Patrick Alfonso

    Continuing to pray for you and your family! Keep fighting and God bless!

    4 years ago · Reply
  • charlie hill
    charlie hill

    Thank you for continuing to share your heartening story Jerome! Your outlook and strength you have shown in this fight is incredibly inspiring! It was great to see you at Jan & Kims wedding a couple weeks back. Keep on fighting brotha! Prayers to you and the family. Keep on keepin on!

    4 years ago · Reply
  • Meera Venkatesh
    Meera Venkatesh

    Jerome, great to hear from you today! You and family are in my thoughts and prayers!!!

    4 years ago · Reply
  • Keith Bennett
    Keith Bennett

    Hang in there Jerome. You're an inspiration! Thanks for reminding us all what a gift we have in life. Keith Bennett - worked with you at TMO and teeny tiny bit at Microsoft :).

    4 years ago · Reply
  • Mutya O'Boyle
    Mutya O'Boyle

    Jerome, I don't believe we've met but we seem to have quite a few mutual friends. I came across your site and have learned of your story through various friends on facebook. Just want you to know that my family has kept you and your family in our prayers every night. Thank you for sharing your journey. You are truly an inspiration! Take care, Mutya

    4 years ago · Reply
  • Molly Akers
    Molly Akers

    Prayers continue for your comfort, peace, continued positive outlook and your precious family.

    4 years ago · Reply
  • Kim

    You continue to inspire* Thank you thank you.

    4 years ago · Reply
  • Jenelle Dalit
    Jenelle Dalit

    Love that you continue to pour out good spirits and inspire others! I don't think I've ever met you but, I'm rooting for you and your fam. May god continue to bless you!

    4 years ago · Reply
  • Yuyu Lin
    Yuyu Lin

    Thank you so much for the update, Jerome! You and your family continue in my thoughts and prayers! Sending all the positive energy your way!!!

    4 years ago · Reply
  • Kailee Schrift
    Kailee Schrift

    Keep fighting Jerome! Your family is so lucky to have such an amazing and inspirational person like you. Praying daily for you!

    4 years ago · Reply
  • Jessica

    Jerome, I’m sending you a powerful prayer: PSALM 30.3 God continue to love and bless you. A miracle is on your way.

    4 years ago · Reply
  • Steven Lewis
    Steven Lewis

    Stay strong Jerome. You are a wonderful guy and I am so happy I got the chance to know you, many years ago now. God bless you and your family. -Steve Lewis

    4 years ago · Reply
  • Perng Aw
    Perng Aw

    Keep up the fight! You are always in my thoughts. You are truly a inspiration.

    4 years ago · Reply
  • Teresa Kitamura
    Teresa Kitamura

    Jerome, your courage, strength and love continues to amaze me. I pray for you and your family. God Bless

    4 years ago · Reply
  • JJ Delacruz
    JJ Delacruz

    Keep on fighting, buddy! We're all with you and super proud. Many thoughts and continued well wishes to you, Sam, Caleb, and the rest of many friends and family you've touched. It's an honor to call you a friend. You're truly an inspiration.

    4 years ago · Reply
  • Marcela

    Your strength and positivity throughout this journey continues to inspire us all. Continued thoughts and prayers to you and your family.

    4 years ago · Reply
  • Win Lam
    Win Lam

    Having the opportunity to meet you is a bonus, sir. You are a great orator and writer, it's inspiring the affect you have on others.

    4 years ago · Reply
  • Kel Hidalgo
    Kel Hidalgo

    You're an inspiration to me, I idolize your courage, thank you for putting my life in perspective, prayers to you man.

    4 years ago · Reply
  • Terrence

    Thinking of you, bud. Your strength in this fight is incredible!

    4 years ago · Reply