Hello, as a result from talking to people in person, I've realized that this blog hasn't had a good summary of the whole treatment plan and the direction we're going with treatment. There are only bits and pieces here and there, and it's not very clear.
I hope to fix that with a quick update here. Apologies if you've been looking for that detail, and it hasn't been available.
My prognosis is a neuro-endocrine tumor in the colon that has spread to the liver, Stage 4. Originally, we didn't get a good prognosis or pathology report from the first place we went, and it was pointing us in a different direction. Thankfully, we got a good 2nd and 3rd opinion between Vanderbilt and MD Anderson that we now have a recommended course of action that is more deterministic and has a much better outlook. All that to say, some of the initial doom and gloom was driven by a bad pathology/prognosis that didn't offer much certainty besides maybe 2 more years.
Thank God for our doctor at Vanderbilt, who is best described as a geek on the subject and is an expert in GI cancer forms. So far, his treatment plan has seen some immediate results with the bilirubin results I posted a few days ago. The net of all that discussion as I'm not an expert, is a measurement of the liver function and the production of bile. The number was at 1.9, and normal range is 1-1.2. If the number had gone above 2, then they may have to pursue a procedure to insert tubes or something to enable the proper flow to avoid poisoning of the body. So, praise God for that!! Thank you for your prayers. The number dropped to 1.6 in a few days, and another measurement of kidney function made a big improvement.
The key area of battle is the liver, even though it originated in the colon. Therefore, it's the main area under focus. The goal with the chemo treatment I'm getting is to shrink the cancer to a level so other options can be pursued. In particular, the doctor is hoping to move me in the direction of Immunotherapy. I don't recommend trying to become an expert on it and research since there is a lot of doom and gloom on the internet, and I don't want you to get fearful, and also, please don't call me in a panic, and I'm working on keeping my eyes on Jesus!!! :) So many of you have expressed such love and concern and prayer support that we are feeling truly blessed and sheltered in God's hands.
We also are pursuing quite of bit of natural efforts to strengthen the body for the treatments I'm receiving. I've purged sugars, wheat, processed foods and many other things thanks to the help of my live in nurse, my beautiful wife. We have a lady donating some high-end juicing solutions to us to make me stronger. It is a struggle like when I'm at the church pot luck and people eat fried chicken, because it's awesome, and I'm eating lentil soup. I'm happy for them... but also jealous, but it's part of the battle, and the faces of my children and the grace of God are my motivation and strength. My live-in nurse also does an amazing job with supplements and general other care to make me feel better.
As to how I feel, I feel much better than I did leading into the diagnosis. For example, today, I feel pretty normal, and in a sense better than I did the month or two before the diagnosis, like due to the change in diet. However, overall, I'm still about 80% overall. The challenges, of course are the chemo treatments. They will be once every 3 weeks on a Thursday, next one on 8/17. Those are 4-5 hours of being pumped with fluids, and then sent home for 2 days of oral chemo. I've only had one so far, but it went well. The in hospital treatment is easier than the pills, as they do a great job pumping you full of anti-nausea medication, etc. However, at home, I have to maintain my own fluids, and it's an act of the will to down the pills themselves. We learned a lot from the first go-around to make sure to use both forms of nausea medication to minimize the nausea and fatigue (go figure, they gave it to me to be taken... :)). The first round of chemo left me pretty fatigued Thursday through Monday. I will work from home on Fridays, because I have an incredible boss... need to blog on him, and then take it easy that weekend. That Monday, I returned to work, and felt good until about 11, and someone told me I needed to go home, as I looked trashed. They meant well, and they were right... I needed to lie down. However, over the last week, I've been getting stronger and hungrier and thankful for the progress!!
The plan forward is to do 4-6 total treatments, likely all 6 as long as I don't have any major side effects: biggest risk is neuropathy, a numbing of the finger tips and extremities. Then, the doc wants to see where to go from there. He says my hair will fall out sometime in the next couple weeks... newsflash, it's been falling out slowly for the last decade... no big loss. Good news is I won't have to shave... see, always a positive to everything!! I will get a port, my Borg implant, this coming Thursday, 8/10. Need to get that done, and we'll be taking family pictures before I prep my Gollum costume for Halloween, (hair loss joke... anyway...)
So far, I've noticed minor effects of dryer skin, so I use lotion, then need to drink water constantly, and I need to eat every 2-3 hours, or it's like my batteries run out. I've lost a total of 27 pounds since I started exhibiting symptoms. Between the cancer and the diet changes, I've had to buy all new pants since I was starting to look like the guys with the balloon pants and heavily cinched belts. Made me look worse, so dropped some cheddar at Penney's for some skinnier jeans. I haven't been this skinny for 15 years, so it's a little weird, but it's nice to not be as heavy. My energy level is a lot lower. A workout is a 1.5 mile walk, and a lot stairs kick my butt. I've also noticed scratches take longer to heal, so I've cut the live knife fighting out of my daily routine as a precaution, and I've regrettably had to back off from my wife's Wonder Woman style vigilantism at night. I'll sure miss her in that outfit... but anyway.
Other positives is although I've been told many times to expect pain, and lots of it at times, I haven't experienced a lot. I've been able to stay away from the heavier stuff and have occasional minor pills when the swelling of the liver gets a little touchy. It's mostly only felt from time to time on deep breaths or occasional coughs. I'm a wuss when it comes to pain, so I've very thankful for that.
All in all, we're very grateful for where we are at. YOU all have made such a difference!! Thank you for all the prayers and support, like food.
What to pray? #1: we continue to praise God for the regular flow of grace into our lives... been awesome, and our eyes needs to be fixed on Him and know Him as He's revealed Himself to us, and not as the world sees Him. #2: Sara, has a huge load normally, and with me at 80%, the hospital trips, schooling starting... she's going to need special strength and wisdom to navigate it all. Pray she finds rest and contentment in Jesus alone. #3: Kids, that they can live life joyfully and not in fear of losing Daddy. They need to know Their Heavenly Father as a loving Dad Who carries us through pain and difficulty, and allows suffering to reveal our need for Him, and ultimate healing comes through forgiveness in Jesus and an eternal home free of cancer and other bad stuff. Their greatest need is developing a love for Jesus. With His strength, they can march on the very gates of Hell and endure. They're beautiful and need to live life not in fear.
I love you, and thank you for all the joy you bring with your love and support.