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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