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
Comments (33)
Our love and prayers are ALWAYS with you guys.
Keep up the fight Jerome! You are always an inspiration for all of us! You have all our love and thoughts!
We love you Jerome! You're always in our thoughts. <3
We think about you often!!! You are so strong even during these times. Praying for you always my friend
Thank you for continuing to share. We think of you daily! Know that you, Sam and Caleb have our unconditional <3 & support. - JR & Laricel
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!
Thank you for your openness and honesty. We hope to continue to hear updates from you!
Sending all my love and prayers!
Continuing to keep you in my prayers. You're an amazing person. God bless you and your family.
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.
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.
Continued prayers for you bro!
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 :)...
Thinking of you, Sam, and Caleb all the time. Sending love and strength to you all!
Continuing to pray for you and your family! Keep fighting and God bless!
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!
Jerome, great to hear from you today! You and family are in my thoughts and prayers!!!
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 :).
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
Prayers continue for your comfort, peace, continued positive outlook and your precious family.
You continue to inspire* Thank you thank you.
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!
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!!!
Keep fighting Jerome! Your family is so lucky to have such an amazing and inspirational person like you. Praying daily for you!
Jerome, I’m sending you a powerful prayer: PSALM 30.3 God continue to love and bless you. A miracle is on your way.
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
Keep up the fight! You are always in my thoughts. You are truly a inspiration.
Jerome, your courage, strength and love continues to amaze me. I pray for you and your family. God Bless
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.
Your strength and positivity throughout this journey continues to inspire us all. Continued thoughts and prayers to you and your family.
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.
You're an inspiration to me, I idolize your courage, thank you for putting my life in perspective, prayers to you man.
Thinking of you, bud. Your strength in this fight is incredible!