Last Friday marked the one-year anniversary of my eighth and final chemotherapy treatment for breast cancer. Following that I did have five weeks of radiation, five days a week, so my end of treatment was technically July 27 (not including another surgery later on). Radiation, however, was a cake walk compared to everything else up to that point so June 7 just carries more significance for me.
When you embark on chemotherapy they warn you that the medicine — in addition to killing cancer cells, which is sort of the point, duh — will affect you, not only immediately, but also for some time in the future. No one can say exactly how and how long you will enjoy the effects of this venomous intravenous cocktail, because how you react and for how long, like so many things medical, are highly individual.
Of course, a number of “individuals” told me what I was in for, either from personal experience or from what they had heard or observed in others undergoing treatment. Solicited, this is helpful advice, provided you don’t take it as scripture since you don’t really know what you, yourself will experience. Unsolicited, it is, well, not. There are things that you know you will probably have to deal with, such as fatigue, loss of muscle, appetite issues, lowered immunity, hair loss, et cetera. And then there are other things that may or may not strike you, such as oral thrush, loss of finger nails or having a constantly runny nose or watery eyes… I could go on but how long have you got?
The thing is, you just don’t know. What you do know is that you will not feel “normal” for some significant period of time. I was prepared for that, as much as one can be. If I’m honest about it I have not really felt like a normal person ever since I suspected that I might have cancer at age 39, because that in and of itself is not normal and made me feel physically weird.
But what is normal? That’s the question I have been asking myself a great deal lately. Normal is somewhat tricky. It’s a little bit shifty. Elusive.
I am sitting here digesting the last year and a half and thinking about how I felt before, during and after treatment. And how I feel right now. At this very moment.
And I have to admit that I do not know if I feel completely normal, one year out from that final chemo. I am not trying to be cute or philosophical here, people. I don’t mean that mentally I will never be the same because I am “forever changed” by this experience. I am talking physically. I’m talking about how my body feels.
See, about two weeks ago I thought that I felt normal. And then something happened and suddenly I noticed that when I woke up in the morning I had so much more energy. And at the gym I had so much more strength and stamina. And I thought, “gee, I guess my body is still ‘recovering’. I guess the way I felt three weeks ago, although I thought it was pretty good, wasn’t as good as it’s going to get.”
And you know what? A few weeks before that (aside from an unfortunate stint with some unexplained infection which dragged on for weeks and seems to have started with a stomach virus) I thought I felt normal, too. But clearly, if I feel the way I do now, then by comparison, the way I felt then was, if I may borrow a line from Ving Rhames in Pulp Fiction, “pretty fucking far from okay.”
I remember chemo. I remember the first time, which I did before I had a port surgically implanted into my chest for treatments two through eight. The nurse pushed the juice into a vein in my left arm. I watched the liquid flow from the huge syringe gripped by her gloved hands through the line and into my arm. I began to feel the effects immediately. My nose tingled, a metallic taste enveloped my tongue, and when I went to the bathroom my piss was pink because the doxorubicin was red in colour. Let me tell you: this was somewhat less festive than rosé champagne and eminently less drinkable. By the time I went home I was rather grey in the face and very tired. And didn’t have much of an appetite. Which for me is not at all normal. I never refuse food unless I have an acute stomach virus. And even then I try to relish the white toast, flat Coke and sliced banana. Oh wait — I lie. There was one time recently when I refused food on a Bangkok Airways flight because the mystery meat was just a little too mysterious even for me. Ew.
I had a dose every two weeks, and by the end of the second week I was always feeling better, more — yup, you got it — normal. And then they would hit me again. Halfway through I was switched to another medicine (part of the original plan) which was easier to take but had other side effects. And then suddenly there I was in my pink wig and feather skirt (see Zero) for my last treatment. And that was it. Dunzo. So when that third week rolled around and they did not hit me again it was fucking magic. I mean I could not believe how much better I started to feel. It was like someone flicked a switch. In fact, you can actually see it on a graph that reflects the data from this exercise circuit I had been doing at the gym. You see a slow decline over the course of my chemo and then the day I worked out in that third week following my final treatment the graph jerks right up into a steep climb.
I remember how I felt that day at the gym. How much easier the exercise was. How much more normal I felt. I thought, “wow, I cannot believe how good I feel.” But now, looking back, I realise how good I didn’t feel. My reconstructive surgeon alluded to something along these lines last year. He said you think you are doing pretty well and only later do you realise you actually felt absolutely crap. I get it now, dude.
And it isn’t always linear. There are ups and downs and setbacks and gains and the whole thing is linked to mood so it’s really very difficult to measure what normal is.
One morning last summer during our visit to the US I waited in a small, sandy parking lot with my husband to meet our dear friends riding the Pan Mass Challenge (a hard core two-day bicycle ride to raise a hellofalotta money for cancer — see http://www.pmc.org). They would do a quick pit stop before making a hard right and continuing on. I remember standing there, chest all beet-red, enraged from radiation, barely any hair on my head, skinny and certainly a little weak. It was so great to see them. But I did not feel normal. I felt like they were riding for me. It was moving, unnerving.
Fast-forward to two weeks ago Saturday when my older daughter (who is eight) and I did a four-mile walk through Regent’s Park to support people fighting cancer at the school by raising money for Macmillan Cancer Support. The walk was fun and easy and although our legs were mildly fatigued by the end it was great. And it hit me that throughout the walk and afterward I felt as though we were doing it to support others. Not for me. It wasn’t for me anymore. Because I am that much closer to normal. There is a whole universe between that day and the day I stood in the sun on Cape Cod waiting to spot my friends.
So what now? Well, after aspiring to normal for so long I’ve decided to scrap that, regroup and come up with a new plan. Normal, whatever that is, is no longer my end game. I want to feel amazing. I want to feel awesome. Sometimes, already, I do. But I want it consistently and I’m going to get it. By the way, I know many of my friends and family are chuckling and thinking that I have never been remotely “normal.” Very funny, people, but you know what I mean.