I woke up. I ate breakfast, sliced avocado, scrambled eggs with tomatoes and cheddar cheese, a slice of sourdough toast with appricot jam, and a slice of wheat toast (well Daves to be more specific) as a vessel for my eggs. Then we got things together and headed to my oncologist office. I was told I would have the private room for my first session so when it was offered to me by the receptionist I said yes and made myself at home. I walked past the three walled room with shoulder to shoulder arm chairs and empty IV poles. The private room had an exam table next to radiation machine and a sink, both of which were stacked with those fleece blankets that have the tied together fringe around the edges. They were real big college Christmas presents in the early 2000’s. There was a chair against the wall and a plastic reclining arm chair. Just outside the door is their phlebotomy chair where every chemo patient gets their labs checked before chemo. So I saw the parade of characters sit down and have their blood drawn. The chemo nurse, Lucene, was very nice and friendly. She took my blood relatively painlessly. She also complimented me on my port, recognizing the surgeon who put it in. “Oh yes, I would know his ports anywhere, so well placed, very clean, not a lot of bruising or swelling. It’s a good port.”
My oncologist came by and looked somewhat flustered, although always cheerful and confident. Apparently, over the weekend she was doing more research on adding a biologic chemo agent in case the genetic tests come back reporting that the tumor is sensitive to medication that biologically affect the tumor (attacking blood supply to the tumor, for example). But biological chemo in addition to standard chemo can make things too toxic, too much diarrhea (to the extent of hospitalization, for example). So if we need a biological chemo we would have to drop one of the standard chemo meds. The question this raises is what affects does that have on the tumors resistance or the efficacy of the their chemo meds without it. So she was on the phone all morning talking with specialists at UCI, City of Hope, USC, and the Mayo Clinic. Just because there isn’t anything published doesn’t mean that experiencially doctors don’t have a clue. But I’m a rare patient, the involvement of my liver, as I said before, is also a variable not taken into account during many studies. The goal of our treatment isn’t to irradicate the tumors it’s to get them to a point of resectability as quickly as possible so that too is a variable not accounted for in published studies.
Lucene came in and took the dressing off my fresh, sore, port. She brought out a weird looking thick needle with IV attachment and said’ “This goes into your port. This will hurt.” And basically jammed this needle through my skin into the aforementioned fresh, sore, port. In reality, I’m sure she just slid it into the port through my skin and did not jam it in there but I was still pretty sore. Then she flushed the line with heparin until blood showed up ensuring the line to my subclavian vein was clear. So I was hooked up to pre-chemo drips of anti-nausea medications while we wrestled with knowns and unknowns and weighed costs and benefits and swapped ideas with big deal doctors all over the place. What was amazing is that doctors were calling back my oncologist personally and discussing my case. Lucene came back in and slowed the last pre-chemo drip to allow for more time and to mix the chemo meds. There was a concensus, go with the four standard but aggressive colon cancer drugs. If we need to do a biologic in the future we can but for now let’s stick with what we know shrinks tumors fast and get me to surgery.
I haven’t decicded if it’s good or bad to have your first round of chemo be when you have a head cold. On the one hand, you feel like crap. You have the sore throat and head congestion that makes you feel groggy. On the other hand, do you feel like crap because of chemo? You can’t be sure. Are your cold symptoms just progressing or do you feel lightheaded and dizzy from chemo? There were definite chemo things happening to me like hot flashes (which are so weird! Like an instant fever coming from inside you, but my feet were freezing!) and what I fondly refer to as drunk eyes (they just can’t focus well and are slow to look from one side of the room to the other). Those are the most noteworthy, not, cold like symptoms I attribute to chemo. The rest? Who knows.
So the first drug, izotecan, hung there for two hours, making me loopy and groggy. Then the next two work in conjunction with each other, oxalyplatin and leukovorin, and are hung together, dripping at the same time over two hours. I was assured the next round would go faster. Lucene wasn’t sure how I would tolerate it so she had it drip slowly. The forth drug, 5-FU, was a pump that I would go home with which would deliver the medication over the next 48 hours. The pump was placed in a bag that I wore like a cross body purse and attached to a thin IV line still attached to my port. So basically I look like I have a small space station docked on my chest.
Hopefully we get the tests back on my tumor genes in the next couple of days. With my new cross body purse and space station on my chest I headed home. I had a super relaxing afternoon laying on my bed looking out open windows onto my backyard jungle. It wasn’t until 7pm my old friend the miserable intestinal cramping and corresponding symptoms vamped up. It was one of the worst nights I can remember 7/10 writhing moaning pain with a headache alllllll niiiiight. Goooooodness! It died down to a 4/10 by around 8 am. No nausea though so that’s great. I was instructed to keep ahead of nausea with Reglan and Zofran and keep on top of diarrhea with Imodium. Who knows how I will respond? I might even have latent fatigue and nausea show up four or five days after chemo.
I’m exhausted today, groggy, crampy, but overall doing well. I just needed a day to chill.