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Posted 2016-10-24T17:58:00Z

10/24/16 - Still Here 1 Week Past The Time Given By My Doctor!

Hey Everyone,

I just wanted to provide a quick update on where we are and what has changed with regards to my health over the past week, especially since I'm now on bonus time relative to what the doctors originally said. I also wanted to do a quick recap on how we got to where we are today. Let's dive in!

Pain Management: Without going into detail, the past week included some of the hardest nights I've gone through with regards to pain. I stopped all pain meds when I was on antibiotics in hopes of clearing out my system of the stomach bug and to see if I could go without any additional pills, but I could really feel the tumor pressure in my abdomen and back. However, now that I'm off the antibiotics and hopefully past the stomach issues, I can concentrate on pain management, which I started taking again yesterday and that seemed to help, so I think I have a pathway to comfort going forward.

Weight Loss: Related to the stomach bug, I haven't been able to eat well and have lost over 10 pounds. There were days where my meals would only consist of toast or applesauce, part of the BRAT diet (bananas and rice not mentioned), which clearly isn't enough calories for maintenance. I'm now trying to eat caloric dense foods to maintain my weight, eating frequent but small meals to still take it easy on my system.

Liver Failure: The nurses also noticed my jaundice getting worse, so I'll start drinking Lactulose to clear out any ammonia build up in my brain, also to balance the constipating effect of my other meds.

Insomnia: I've been unable to sleep more than 2-4 hours per night the past week, again perhaps I wasn't on pain management, but now that I am I'm hoping to be able to get some quality rest. The sleeping pills didn't work for me, and made me feel groggy in the morning.

Mentally: I find myself not able to recall things as well as I used to, and find I'm not able to articulate my thoughts as well either, again perhaps because I'm sleep deprived. No episodes of confusion or anything like that, so that's a win!

Exposure to Other Illnesses: My nurses suggested that I be extra cautious around anyone with a cold or flu, as any illness I contract will definitely cut my time shorter, so we've been asking visitors not feeling well to keep distance and when I'm around them, to wear a mask and sanitize. It's best to be sure!

 

Summary Of The Journey Thus Far: Given the recent and wonderful increase in interest, I thought I would provide a quick summary of how we got here with links to the details

  • Prior to an international work trip, I saw the travel doctor and mentioned I had lots of bowel movements, he suggested I do a stool culture, which showed blood and white blood cells, and suggested I get a colonoscopy.
  • The colonoscopy showed a tumor blocking 80% of my colon, and suggested I get a CT scan.
  • Based on the CT scan, I was diagnosed in April 2014, Stage 4B Colon Cancer with a primary tumor in my colon, and metastasis in the lungs and liver.
  • This portal/website was started by our cousins, Jenny and Paul, and I took it and began to update on the journey.
  • Started treatment at Seattle Cancer Care Alliance.
  • Powerport installed to allow a high volume of liquids to be pumped to my heart.
  • 12 Rounds of chemo infusions FOLFOXIRI + Avastin. Side effects were not fun.
  • 1 Surgery on September 25, 2014 (our 4 year anniversary) to remove part of my colon, and to cut/freeze tumors on my liver. Didn't do the lungs, because it's inoperable as the lungs do not regenerate.
  • Maintenance chemo pills.
  • 8 more rounds of stronger chemo when they found recurrence.
  • 3 Y-90 radiation bead surgeries.
  • 1 Clinical trial, was one of the first humans this drug was tested on.
  • Now on hospice care which focuses on my comfort, no more treatment.

 

Although this post focused a lot on the negative changes, I'm still very positive and grateful to be here today. At this point, based on my doctor's initial prognosis, I'm on bonus time, so I'm thankful to be alive, able to move around, albeit at a super slow pace, and type out what I think are coherent thoughts. My time has been spent mostly with family and close friends (and resting up for those visits), and I'm so glad that I'm still able to do so.

I thank you all for the continued support, and I look forward to hopefully giving you some positive news in my next update. Thank you for reading, and have a good Halloween week!

- Jerome

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Comments (23)

  • Terri Schwan
    Terri Schwan

    Thanks for the update Jerome - you continue to inspire with your amazing spirit! Thoughts and prayers continue for you and your beautiful family.

    4 years ago · Reply
  • Jeff Selleg
    Jeff Selleg

    Jerome, as it has been through out this journey your strength and grace are empowering, God bless. Jeff S

    4 years ago · Reply
  • Erica
    Erica

    Jerome, thanks for sharing your journey with us. You continue to be an inspiration to all of us, sharing our your strength and positive attitude. We continue our prayers for you and your family.

    4 years ago · Reply
  • Lesli D Holcomb
    Lesli D Holcomb

    You're such an inspiration!

    4 years ago · Reply
  • Cynthia Gosling
    Cynthia Gosling

    Dear God, You are so incredibly brave Jerome! I'm Justin's cousin Cindi....I remember when you were just a playful kid at your grandparent's house (my god parents) in Newport Hills. I am absolutely crying for you yet unbelievably proud of your spunk! Bless your pure heart & spirit....it is an inspiration! I pray you find peace & are in little pain.... Please let me know if I can help your family with anything. We aren't too far away. Hug Auntie Baby for me too and stay postive. The power of positive thinking is AMAZING which you definitely already know. With sincere wishes, Cindi Nebril Gosling

    4 years ago · Reply
  • Marlene Valdez
    Marlene Valdez

    Keep fighting Jerome, God is good to guide and give you more & more strength, We thank God to your continuing to be an inspiration to all ur family & friends especially to your lovely wife & ur son. just keep praying. God Bless you..

    4 years ago · Reply
  • Lyn Cameron
    Lyn Cameron

    Wow, Jerome, just wow. You are amazing. God bless

    4 years ago · Reply
  • Michalis Tsavdaridis
    Michalis Tsavdaridis

    Thanks for sharing this update Jerome! You really inspire all of us with your courage and power! I wish all the best for your family!

    4 years ago · Reply
  • Marcela
    Marcela

    Jerome - you and your family continue to be in my prayers. Thank you for continuing to share your journey with us!

    4 years ago · Reply
  • Jen St Clair
    Jen St Clair

    Hi Jerome, I'm an old co-worker of Emerita's. I've been reading your posts, praying for your family and being inspired by your courage and strength. Once again I'm reminded how powerful one life can be. Thank you for sharing your story and reminding those of us that have never meet you how amazing life and family is. I will continually to pray for you and your family. Thank you for sharing your story- it has been a privilege to be able to meet you through your posts. Jen St Clair

    4 years ago · Reply
  • Meera Venkatesh
    Meera Venkatesh

    you continue to amaze us in every way and every day!! happy Halloween week to you and family as well!! keep up the great spirits!!!

    4 years ago · Reply
  • Lenard Alvarez
    Lenard Alvarez

    Jerome, we may not know each other but I've stumbled across your journal via the various friends we have in common. I was diagnosed with AML (Leukemia) last January and have been getting treated at SCCA since March. It's gotten to the point where standard care chemo no longer works since my leukemic cells have been very aggressive and now it's up to these clinical trials and other methods to hopefully do their thing. Starting next week, I'm prepping for a bone marrow transplant with my half matched sister as a donor. This is going to be a rigorous task but will have in mind everything you've been through. Thanks for being such an inspiration. It just reinforces how strong I need to be for my wife and young daughter.

    4 years ago · Reply
  • Yuyu Lin
    Yuyu Lin

    Thank you for continuing sharing your journey with us, Jerome! We will continue sending all the positive vibes/ energy and praying for you and your family! Please keep fighting!

    4 years ago · Reply
  • Katherine Wandell
    Katherine Wandell

    I don't know you but I know your cousin Monica. I have been following your story and cheering you on. I love your optimism and it really inspires me. God laid on my heart to reach out to you about eternal life. I know you go to church and I want you to know 100% that you'll go to heaven after this life. If you have the time, I hope you will read this...will take less then 5 minutes of time, but is the biggest decision we all have to make. If you have accepted Christ already then I am joyful to know I'll meet you someday in Heaven. For now, keep up the fight and I'm praying that God will continue to give you strength. www.katherinewandell.com/heaven

    4 years ago · Reply
  • laricel cambronero
    laricel cambronero

    Keep fighting the good fight! We are praying for your continued strength & comfort. Lots of love and support always! Jr and laricel

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

    I'm sure your positive insight and strong fight is rewarding you with the bonus time. Avocado, peanut butter, powdered milk, bananas are some very calorie dense foods that you can maybe incorporate to your small meals. There is also the supplement benecalorie https://www.nestlehealthscience.us/brands/benecalorie/benecalorie-hcp that has 330calories in just the 4 ounce liquid. You don't want to drink it, but add it to things you can tolerate even mashed potatoes! You continue to amaze people everyday with your messages. Thank you.

    4 years ago · Reply
  • Anna Leung
    Anna Leung

    Jerome! Thank you for staying positive and strong. we can't wait to see you when we get back this Monday! <3

    4 years ago · Reply
  • Dawn Liburd
    Dawn Liburd

    Thanks for the update, Jerome! You continue to "win the hand that you were dealt" and you are inspiring so many of us along the way. You and family continue to be in our thoughts and prayers...

    4 years ago · Reply
  • Tanya Lam
    Tanya Lam

    Keep fighting! You're an inspiration! Much love and prayer for you and your family

    4 years ago · Reply
  • Jackie Bagwell
    Jackie Bagwell

    I've been following your story through mutual friends' posts and truly believe you've got such a strong heart and very brave soul. May God continue to bless you and your loved ones!

    4 years ago · Reply
  • J.T.
    J.T.

    Dear Jerome, we met a couple of years ago at a Domingo get-together. Caleb was a little guy, and you had recently been diagnosed. You and your family have been in my thoughts since, though I just recently discovered the link to your blog. Thank you for the updates: your honesty and courageous spirit shine through in your words. I can see that you are surrounded by love and that your love for Sam and Caleb is eternal. I wish joy and peace and deep healing to you in every moment, on whatever path you journey. Best to you and yours, J.T. (aka Jen, Mike's wife-- Mike = Dave's brother, Dave = Cat's husband)

    4 years ago · Reply
  • Heing Lim
    Heing Lim

    Jerome, Keep fighting! I have kept you in my prayers every time I practice yoga. I am sure all this positive energy from your family and friends are helping you with this fight!!!

    4 years ago · Reply
  • Lou Domingo
    Lou Domingo

    We love you, son... always and forever! God bless you... <3 <3 <3 --- Mommy

    4 years ago · Reply