It Only Takes One Weak Link in a Chain
I’ve been very fortunate over the past over 4 ½ years since my cancer diagnosis. I had some pain immediately before my diagnosis from my primary tumor but ever since that surgery in June 2012, I have lived a pain-free life. Except for an occasional cough in-between treatment regimens, zero symptoms of cancer.
Sure I have chemo side effects to deal with, especially when I switched over to Full Fury (oops I mean FOLFIRI – a turn of a phrase lasting legacy of my friend Kenny…) – but impacts from the cancer itself? Nope – when not actively on FOLFIRI, I can still run 10k without losing my breath – my cancer has truly just been a bunch of spots on a CT-scan!
Until a spot decided to get too large.
I had my first hints of pain back in August but it quickly resolved and I attributed it to sitting funky in an airplane seat flying back from a whirlwind cross-country trip over the summer. Yes, even with Stage IV cancer – all the standard things that happen to regular folk still happen to us too. Although in our case, every little ache and pain is accompanied with a chilling “is it my cancer growing?” thought… So I had that mental scare but when it resolved, I laughed at myself for being such a worry wart.
Then about 3 weeks ago the pain came back. A very odd pain in my lower back, something I had never felt before. Strong, unyielding to over the counter meds, diffuse as it moved around my lower back and occasionally even reached around to the front. Strong enough to break up my already fragile detente with sleep issues, sleep now limited to passing out at 9 PM, waking up “for the day” at midnight. Me and narcoleptic spontaneous napping later in the day became new best friends.
I have to admit those three weeks were the toughest I have felt emotionally for years. Pain, low sleep, worry about what is causing it and by chance a close friend going through serious health issues simultaneously added up to a mentally toxic negative feedback loop.
It was the first time I have ever “felt sick” from my disease – over 4 ½ years since diagnosis. It was the first time that aside from chemo, it impacted how I interacted with my daughters. Too much pain to lay with them for extended bedtimes. Too much pain to do at all as much with them as I normally like to (although via willpower I still do as much as possible – I did make sure to celebrate Halloween with pumpkin carving and trick or treating with them!). Dusting off the remote (no seriously, it was dusty, I seriously hate laying around & watching TV! ha) I started watching TV while curled up in bed for the first time in years, too tired & in pain to be a fully functional member of the family. Too tired & in pain to work on as many of my beloved advocacy projects as I normally do. But like the Halloween efforts, via willpower I continued to do as much as possible in terms of both advocacy projects as well as my continuing scientist day job. I suspect based upon doing that most people had no idea I was struggling. Since I could do these activities, I didn’t want to say anything until a cause was determined. And I plan on continuing to use the same willpower moving forward, I have a lot I want to accomplish! 🙂
We probably now know the cause.
My disease is in my lungs and lymph nodes. Metastases in different parts of the body can behave differently. Kind of makes sense since they probably have to behave differently just to be able to survive in different, unrelated parts of the body. My lung spots are still fully stable or shrinking from chemo but the disease in my lymph nodes has become FOLFIRI resistant. Looking back carefully to my CT-scan last May, the hints of it were already appearing then. There is now a pretty big tumor that is suspiciously located in my back which quite plausibly could be the source of my unexplained pain.
It is located very close to a number of organs making it very tricky to surgically remove or kill with targeted radiation/ablation – so for now, I and my enemy will just be staring each other down on either side of the demilitarized zone called my abdomen.
My lymph node disease is the weak link in my disease treatment chain – it is the link driving treatment decisions right now. You only need one weak link in a treatment chain to do that!
Because of that weak link, my FOLFIRI chemo treatment card now needs to be retired (at least for now) although anticipating this eventuality, I do have some experimental FOLFIRI resensitization cards to be played if needed, which are sitting lined up patiently on my future treatment plane taxiway.
“Coincidences” from the Universe are Amazing Sometimes
A few weeks before the pain started, the very cool oncolytic virus + PD1 inhibitor immunotherapy clinical trial possibility suddenly & unexpectedly fell into my lap. A few days after the pain started to ramp up, I found myself in LA – with the initial low level pain driving there along with me – being told I had a slot in the trial!! This week, the trial emailed me confirming I was lined up for a dosing start in December. Yesterday, I received the preliminary CT-scan results by a phone call showing chemo resistance & the need for a trial. A trial just miraculously set up.
It all could not have been planned out any more perfectly. Yes, I have a series of “in case of emergency break glass” plans lined up in general – but in terms of perfect timing, even I’m not that good! 🙂
Plans, Plans and More Plans…
So far it does not appear that the troublesome tumor can be taken care of easily, especially in light of a planned near-term clinical trial complicating matters. So what is then is the plan? Well, I am a firm believer that you make decisions based upon good science and although you can’t ignore new facts, you also shouldn’t change plans on a dime. So… I was very excited about my impending clinical trial before the chemo-resistance caused pain and now? I’m even more excited!! The trial uses a completely different treatment strategy than chemo so there is no expected overlap in terms of treatment resistance. If the trial is successful, perhaps the troublesome tumor will be taken care of that way w/o surgery etc.!
Those lymph node tumors have built up a strong defensive line, chemo is no longer getting through – I’m now going to try to outflank them and attack them from the side, before they know what the hell hit them!
In terms of the troublesome back tumor – I received a full analysis of potential options this week from UCSD and as follow-up (working around my clinical trial logistics) also be getting second and third (& maybe 4th!) opinions. I was honored to be invited to give a talk to the GI-oncology department at the world renowned MD Anderson Cancer Center in a few weeks – while there I will be meeting with a top CRC oncologist to review my current situation and options. Similarly, through the WunderGlo Foundation, I collaborate with another top CRC oncologist Dr. Heinz-Josef Lenz at the USC Norris Comprehensive Cancer Center who I will also ask to review my case for options! I will also probably get the opinion at the City of Hope Cancer Center while I am there for my clinical trial.
Between getting opinions at UCSD Moores Cancer Center, MD Anderson, USC, and City of Hope, don’t worry about me… I am in very good hands! 🙂
Most importantly, ironically my spirits are now up. I am mentally back to my old self. Yes the pain is still there and yes I still struggle with sleep – but there is nothing… NOTHING… that gets me more FIRED UP than a challenge. Something not nebulous like unexplained pain… but instead something known, something I can now focus on and react to. Like a weak link.
That pesky weak link in my chain… it had better be ready… I don’t think it will know what hit it. First plan of attack: how about 3 trillion virus particles genetically engineered to seek out and destroy CRC? I like the way that sounds. A lot.