Not dead yet.
Greetings friends,
Happy holidays, good tidings, cordial niceties, etc etc etc.
Thought it would be useful to give an update on the state of affairs specifically regarding health, starting at the top since I've been wrongly accused of not discussing such matters.
Sept 1 2022 - Diagnosed with stage 4 colon cancer. Stage 4 means it's spread to other organs, in my case the liver which is pretty common for this cancer.
Very generally, treatment approaches vary but go something like this:
Chemo to get the cancer to shrink or maybe go away. Chemo is systemic and works in the entire body
Radiation to shrink/kill the cancer even more. Radiation is targeted
Surgery - physical removal of the bad bits.
After the initial diagnosis I went through a few machines (CT, MRI, etc), got a liver biopsy which was not fun, and had a port installed which was pretty cool.
The port and biopsy were done at the same time with twilight sedation and fentanyl. So I remember the whole thing well but couldn't feel most of it.
The "port" is quick and easy access for IVs instead of having to stab a vein every time. Useful when doing lots of chemo treatments. The fish a tube down into your heart to mainline the drugs.
The liver biopsy came right after they put the port in (I think....i could be wrong though. I was on drugs) and they took a core sample with a huge needle. Even with the drugs, I still remember feeling that punch of the needle when they took a plug from my liver.
They needed to sample to prove the cancer had indeed spread but it was mostly semantics given the CT and MRI imaging. Biopsy came back confirming it was cancer. No surprise. With the new port installed, I was prepped for chemo.
Oct-March 2023 - Chemo.
There's "Lines" of treatment when it comes to chemo. 1st line- the basic stuff that usually works. 2nd line- alternatives that may be less effective overall but could work. 3rd line- basically a hail mary.
Initially I was anemic, so they injected me with a few bags or iron over the course of a month. Apparently you need red blood cells...
After the blood work was good, I started on a cocktail of the basics.
5-Fluorouracil - Basic chemo drug. There are two forms - You can eat it in pill form (which is what I did this round) or have a tiny football sized pump you stay connected to for 48hrs
Oxaliplatin - has actual platinum in it. Has some serious side effects, namely cold sensitivity and peripheral neuropathy.
Avastin - Cuts off blood supply to quickly growing cells. Also can hurt your kidneys and make your blood pressure skyrocket.
Each "cycle" was a total of 3 weeks. Go in on day one, get hooked up to a bunch of drugs on an IV pole, take the pills 2x a day for 14 days, and then take a week off. Rinse, repeat. I ended up doing 9 cycles, I think.
CT scans showed a good response. the primary tumor shrank, as did the liver ones.
So the focus shifted to fixing the liver. Initially, the place I started treatment thought they would implant some radioactive spheres in the liver tumors to kill them. Then they called me one day and said "No, we're gonna keep you on chemo."
At that point I started looking for a 2nd opinion and by sheer good fortune, stumbled into St. Luke's. They were actually recommended by a nurse from a competing hospital.
Note for context- Stage 4 cancer isn't typically a treat-and-you're-cured deal. Even if it does go away completely (which is rare) it usually comes back. It's like medical whack-a-mole. Some are on chemo for life and never get surgery. I felt like the original doctors were phoning it in. When meeting with the doctor at St. Lukes, it was the first time I heard a medical professional use the word "cure" and even though I know those are long odds (and you should know too those are very, very long odds). I appreciated the intent. So I changed hospitals.
There are not many NCI-designated hospitals in the country, but this new one happens to be one of two in Houston (the other one being MD Anderson).
By the end of this little block of chemo my Blood pressure was so high I had to get on medication for blood pressure. 170/110, at one point. The avastin is known to do it. Avastin also makes you susceptible to bleeding. After talking to surgeons and having my case looked at by a board of doctors, the next major step was liver surgery.
March - July 2023- Heal from the chemo.
Finished the chemo. The avastin has to be long gone before they'll do surgery. So I had some scans, and then I went to girl scout camp and I met with the liver surgeon a couple times. Surgery date was planned for August 2nd I think.
Surgeon seemed pretty confident they could get the job done (not sure why the first dr ruled out the possibility of surgery) but did mention there were two routes to go- robotically through small incisions, but that may make it harder and could leave some bad tissue behind, or an open surgery which makes it easier to work. I told him something directly along the lines of "If we're doing this, just open me up."
August 2023- Liver chopping
Had the first surgery of the day. generally went fine.I woke up some 5 hrs later with 40% less liver but the surgeon seemed pleased. Left the hospital 3 days later. And when I told them to open me up...they certainly did. Got a cool scar that looks like a mercedes benz logo. They put a temporary tube in to drain my abdomen as it healed. Long story short- that tube was touching the nerve that activates the diaphragm. So for 3 days I couldn't take a deep breath to save my life. But as soon as they pulled out 3 ft of tubing...I was instantly healed. Overall it was pretty painful. They have that thing where you hit a button and it shoots you with some morphine or whatever...the nurses came in one morning to check and make their notes and whatever and casually remarked to each other that over the course of the night, I had hit the button some 150 times and been successfully administered the medicine about 20 times (it's on a time delay). I got good at setting my internal clock to the pain medicine clock though.
For the rest of august I took drugs and laid in bed mostly. Cool fact- I didn't get staples. They closed the wound with sutures and then for 3 days in the hospital, it was covered with a negative pressure dressing. Two little hockey puck sized pumps kept a vacuum on the incision site meaning no staples were needed.
Sept 2023- Biopsy results and imaging
Surgeon felt good, but the biopsy results came back questionable. The idea is to cut out the bad stuff with a buffer zone of healthy tissue around it. A margin, as it's called in the business. If you cut a tumor out and the margin is negative for cancer, then that's good. If you cut it out and the margin has cancer cells...then there's prob still cancer cells in the liver.
Biopsy said there were some inconclusive margins for one or two of the removals. I think there were 5 tumors total, one was deep and got microwaved. The others got cut out and removed. Overall they said they took about 40% of the liver out.
CT and MRI scans showed that overall the cancer had grown (but that makes sense, because I was off chemo for 4 months) and that the liver looked okay.
Oct-Nov 2023 Chemo part 2
This time the cocktail was 5FU (the pump version), Oxaliplatin, and Irinotecan.
Widely regarded as the most aggressive and strongest blend of drugs there is. Sometimes avastin is added, but it wasn't in my case.
Did 6 rounds of this, each round 2 weeks instead of 3.
Day 1 - go in, sit for 6 hours, get injected with all the drugs. Have the football pump hooked up to port, go home.
Day 3- Come back in to have them remove the pump and inject me with a needle that allegedly tells my body to make white blood cells (those get killed by the chemo a lot)
Day 4-13 - live
Day 14 - repeat
The first 3 or 4 treatments were accompanied with pretty awful nausea, but I bounced back quicker after each treatment. Last chemo of this episode was Nov 27
Dec - Scans, Chemo-Radiation
Scans following the strong chemo cocktail were...okay. There were no changes in the liver, which is good given the margins were originally suspect. Parts of the primary tumor shrank, and some lymph nodes shrank a tiny tiny bit.
Met with the radiation people and after some initial confusion about what they were treating (secondary liver tumors or the main primary tumor) I went through the process of getting set up to be shot with radiation to treat the primary tumor (liver looked good in scans, no need to radiate).
They vacuum-form a little mattress to your body to make sure you're in the exact same place every time.
The plan is long course external beam radiation which is like...28 treatments or so. Every day, except weekends and holidays. On radiation days I also take chemo pills.
First session was this past Wednesday. It takes about 15 minutes. I lay on a table, a machine spins in a slow circle and shoots beams at me.
Side Effects like nausea, fatigue, etc are cumulative. they say you don't notice til week 3ish or so.
Last session is Feb 5th. So far so good.
Feb 2024 and beyond
After radiation there will be more scans, and then a few things could happen.
1- Scans look good, have surgery to remove primary tumor.
2- Scans show no change - more chemo or diff drugs, maybe
3- Scans show total response, no more tumor visible - carry on with life. get scans every 3 months to see if anything comes back. go from there.
So far I feel like it's working after 3 treatments. We'll see how it goes.
There was one instance in November where I had to do Chemo on a monday instead of being in San Diego. I was able to get to San Diego on Tuesday, though. Aside from that one day none of this has stopped me from doing anything I otherwise would do, or wanted to do.
And though impossible to believe for some, I'm not sad or depressed or mad or upset about it. Mostly I think it's kind of funny but I have a weird sense of humor.
Overall I've learned that the treatment is an inexact science and reactionary based on results, so when people ask me what's next and I say "I don't know..." it's because I really don't know. But generally the roadmap is above.
I think that's everything for now.
See you in 2024.
-C
