Linda’s Liver, Chapter 6
Celebrating our 18th year together, blessed to be a family. Each year we commemorate Sept. 9th, 2001, the date we cleared immigration and began our new lives together.
From: Linda Logan
Date: February 4, 2020
March 15, 2015, is a long time ago when measured in rounds of chemo and doctor visits. But, yes, that's when I was diagnosed with stage 4 colon cancer.
Let's see: Five years is 52 x 5 or 260 weeks. And figuring chemo rounds (transfused or oral) at every two weeks, that's about 130 rounds. I had ~6 weeks off for "good behavior," which turned out to be 6 weeks off recovering from hospitalization for esophageal bleeding, plus ~6 months (25 weeks) off getting into MD Anderson. So, 130 weeks minus 31 weeks... That's about 100 rounds of chemo.
That's quite enough.
We moved the show to MD Anderson after Dr. Xiong, previously a clinical trial doctor at MDA and now current oncologist at the Center for Cancer and Blood Disorders in Fort Worth, threw in the towel. We'd run the gauntlet of available treatment plans and he recommended clinical trials at either MDA or Mary Crowley in Dallas.
We looked into both programs. Unfortunately, I haven't been able to qualify for any clinical trials due to platelets, WBCs (white blood cells) being too low and/or bilirubin being too high. The clinical trial protocols require certain levels as a baseline for comparison across all trial participants. I'm not in that club. And, honestly, I can't imagine someone five years into this fight having normal/acceptable levels of anything. Except maybe patience and persistence.
The current treatment plan through MDA is more of a "re-challenge" plan. Going back to some of the earlier cocktails and seeing if enough mutation has occurred in my cancerous cells to make them once again vulnerable to non-trial (typical) protocols.
So far, not so good:
• Tumor in right lobe of liver has grown a bit from PET scan last fall to now. In fact, it's closer to the size that I started with in 2015.
• Bilirubin level has increased. I had a stent put in my biliary tree (the system of vessels that moves bile secretions from the liver, gallbladder and pancreas through a series of ducts into the duodenum) last October (2019) that initially worked to increase bile output but has since fallen down on the job. Side note: the stent has to be replaced every two-three months. I had a new one put in Jan. 9.… not fun at all.
• Side effects are old friends from the original challenge: Erbitux makes my skin hurt: it's dry and scaly and basically gross; Oxaliplatin increases my cold sensitivity and neuropathy; Fluorouracil tops it off with more fatigue, stomach pain and general crankiness and requires a two-day pump as a part of each infusion. (I'm now qualified to disconnect my own ambulatory pump, so I've got that going for me. And I don't have to hang out in Houston for two extra days...)
• There's a pretty low chance of ever qualifying for clinical trials.
But, ~some~ good:
• CEA (cancer marker) numbers are fairly flat. Once as high as 25,000, once as low as 8 -- currently around 100.
• I'm not losing weight or wasting away.
• Side effects could be a lot worse.
• There's a pretty low chance of ever qualifying for clinical trials. But you saying there's a chance...!
I went on a short-term leave of absence from SiriusXM on Dec. 16, thinking that this first quarter of 2020 was going to be pretty rough. I was right and am now thinking that I may need to extend the leave beyond my original plan of returning to work March 16. Sirius remains extremely supportive of my needs.
The current plan is to change my chemo mix on 2/14, the next time I go in for treatment. This mix would keep Erbitux, remove Oxaliplatin and Fluorouracil, but add Irinotecan. Hopefully, the intense neuropathy and fatigue will lessen and the added Irinotecan side effects (nausea, diarrhea, hair loss, general hatred for all of humanity) won't be too bad..
We'll try this mix for a while and see what the next PET scan and blood levels reveal.
Meantime, going to Houston every two weeks is not so horrifying.
• I/we stay at a very eclectic boutique hotel called Hotel Ylem. It's funky with an Indian aesthetic, and, with an MDA-heavy guest list, very supportive of unique needs. They run a shuttle on the hour to/from the main MDA treatment buildings. They have a nice breakfast and a decent bar where one can meet and lament with like-minded individuals. Next to the Gideon, there's a copy of the Bhagavad Gita. I may try to read it between naps.
• We found a pretty swanky motor coach with convenient service to/from Houston. Comfy lounge chairs, no security lines, no liquid limits, no shoe removal, nice lunch. Half the price of air travel and probably half the contagions as well.
As always, thank you for your friendship, support and continued prayers. These gifts are priceless.
Much love to you...
- Linda
1 Timothy, 6.12
(Jeff note: this is the “final chapter” that Linda created, updating friends and loved ones on her cancer journey. It is also the only installment of “Linda’s Liver” that ended with a scripture reference, which may have been provided by some new/old friends made during “unhappy hour” at the bar in Hotel Ylem.)
1 Timothy, 6:12: “Fight the good fight of the faith. Take hold of the eternal life to which you were called when you made your good confession in the presence of many witnesses.”
(Linda asked Jesus Christ to come into her life, more meaningfully than before, and was baptized in front of many witnesses at Fellowship Church, 4/29/09. When she came before Him on 3/30/20, it is deeply believed that Jesus said, “Linda! I know you.”)