Stage IIIB Colon Cancer. T3N1M0. What does that mean?

T3: means the tumor grew far enough into the lining of my colon to register as a 3 out of 4. It did not grow outside the wall of my colon.

N1: means cancer cells were found in one local lymph node. They removed 16 lymph nodes, and one was cancerous. It is good that they were able to get a good sized sample. I wish there was no evidence of cancer anywhere else, but I’m glad they found it before I merrily went on my way assuming it was all gone.

M0: This we already knew from the CT scan. There was no evidence of cancer spread to distant organs/areas of my body.

I got all of this information officially at my post-op today, even though I had already gotten my pathology report on MyChart. My incisions look good. I am cleared to start adding more fiber into my diet, so that will be a fun experiment. I have been off pain medication for over a week. I still take the occasional Tylenol for headaches or hip pain. I have a hard lump under the incision where they had to stitch my muscle together. That one is the most bothersome. I can take short walks, but then I start cramping, so I get to experiment with how much I can tolerate and listen to my body. All in all, recovery from surgery is going very well.

One good note on my pathology report is that the tumor was removed with good, clear margins. So Trogdor has been terminated. But he stayed just long enough to plant a seed to make a baby Trogdor. Chemo is going to destroy the chances of making Trogdor babies a reality.

When will chemo start? What kind will I have? What’s the treatment plan? Those are all good questions for which I have uncertain answers. My appointment with my Medical Oncologist is set for 2/6, so I will have more definite answers then. What I do know is that even if my appointment with the oncologist was sooner, treatment would not start until I am 6weeks post-op. They don’t like to start chemo until I am “fully recovered” from surgery, because, this is the fun part, the treatment could weaken where they reconnected my colon parts together. Basically, I could spring a leak. No thanks! There are a few chemotherapies that are Standard of Care. I only know this from research, not from my surgical oncologist. Folfox is a chemo cocktail and CapeOx is a chemo cocktail. It is possible that I could have only Capecitibine orally, but I’m fairly confident they will want to go with the stronger stuff. Capecitibine is usually an option if the patient doesn’t tolerate the other options. Given my research, I’d likely lean toward Folfox for side effects reasons. Folfox and CapeOx provide similar results and prognosis, but CapeOx can come with hand-foot syndrome. From what I’ve gathered, HFS included pain in the hands and feet and sometimes painful blisters form. Ouch! Obviously I will see what the expert has to say, then I will make my call. Both CapeOx and Folfox are usually given for 6months. Sometimes there is a 3month option, however, that is again usually used for people who do not tolerate chemo well. I guess I hope I tolerate chemo well?

Will I lose my hair? That’s the great unknown. From what I have gathered, hair thinning is more common than total hair loss with Folfox and CapeOx, but total hair loss is not out of the realm of possibility. Being bald is really not something I’m too concerned about, and honestly, if I had to pick one side effect out of all of the options, I’d choose it. Now, check back again if I lose my hair, and I’ll tell you how I feel. I am very likely to do a good short cut pre-treatment. I think the psychological effect of pulling out clumps of long hair would be too much during treatment. I’d rather take some control and deal with having super short hair that grows long again, than assume chemo won’t have any effect on my hair. It will likely be jarring to have really short hair, but we’ll see if I can pull it off. Punk rock pixie? Pixie with bangs? Tapered pixie? Pixie shag? Choppy bob? Asymmetrical bob? Mullet? Bowl cut? Which do you think?

Oh, as for the title…When the first line of treatment was surgery, and I was hearing “we think we got it early.” Or “surgery could be curative.” I told myself I didn’t have real cancer. I mean people have elective surgery. Surgery isn’t a big deal. So if surgery had been curative, I was telling myself that I wouldn’t consider myself a “cancer survivor.” I think really what I was feeling was that cancer doesn’t count unless you have chemo or radiation. Of course that’s not fair, and I wouldn’t diminish anyone else’s experience of being cancer-free through surgery. In my mind, chemo is the worst part of cancer treatment.* I haven’t ever had chemo, so who knows, maybe I have it built up in my head. I know there are people who go through chemo and say, “I just felt some nausea that was treated with medication,” or “I felt a little tired day 1 after infusion.” There are many other varied experiences as well. This is another lesson in “everyone’s body is different.” We’ll see what mine is like when it comes to chemo. But the bar for myself is never the same as for others.

On a related note, I’m also not a huge fan of framing cancer with battle words, “fight cancer,” “beat cancer,” “lost their battle,” etc… I don’t think there are winners and losers when it comes to illness. I don’t think people whose bodies don’t respond to treatment or choose not to undergo treatment are weak. I don’t think anyone really means to imply that when they use that language, but I think it can feel that way to people personally affected by cancer. Again, I’m open to what vocabulary feels comfortable for others; it just doesn’t quite feel right for me. I’m not sure I know what words I would use instead. I’m leaning toward, “Living a semi-colon kind of life**,” “In my survivorship era,” or “Malignancy managed.” I don’t think I have any words for other outcomes at this point, but if I do get there, I’m sure I’ll have some thoughts to share.

*I acknowledge that a cancer that has a more visible surgical impact could feel worse to many. **I know the semi-colon is also used for those living with other illnesses or experiences, but also, can you blame me when the word is right there? And yes “semi-colon kind of life” is supposed to be sung.