I’m warning my readers now: if you just really don’t want to hear about how unpleasant chemotherapy can be, this post is not for you. Perhaps you have other stressors in your life. It’s ALWAYS ok not to read my cancer blog, but it is super ok not to read this one. I’m pretty sick, and I can understand wanting to stay away from that fact.
So, chemo. I have now had quite a bit of it. If you count my first go around (four rounds of taxotere and cytoxan) and my current endeavor (four rounds of adriamycin and cytoxan, followed by twelve rounds of taxol combined with four rounds of carboplatin), at the end of this I will have completed nineteen rounds of chemo in my life so far. I missed a round of taxol last week because I was too sick. I’m going to describe what “too sick” means, because again, one of the purposes of this blog is to report back from this experience.
To begin, I will never forget waking up the day after I had my very first chemo treatment. I remember sitting up in bed and thinking I’d been beaten with a large stick about my entire body, perhaps while I was drinking several bottles of Jagermeister. I think about that first morning often, even though it was three years ago and I have been through worse, because when I wake in the morning now, I almost always feel that way, only it’s normal and unremarkable. This brings me to an important lesson I’ve learned: humans can get used to anything. We can get used to chemo, or abuse, or living in wildly substandard conditions. Even if something will eventually kill us, while it’s happening, we can be used to it. I have seen this in others. We ask survivors, “How on earth did you survive that terrible thing?” The response is, “I didn’t have a choice” or, “I didn’t know things could be different”, or “That was just the way it was.”
As it turns out, during these past six weeks, I have been pretty sick, and that has just been the way it is. I am ranging from moderately to severely anemic, no matter how many steaks and greens I eat, and I’ve had to have three blood transfusions so far. The most troubling symptom of severe anemia is shortness of breath, because there is not enough oxygen in your body. Carboplatin, one of my current chemo drugs (whose last infusion will be on THURSDAY), notoriously attacks your red blood cells and platelets, which carry oxygen. After I receive carboplatin, the drug itself continues attacking cells for a three-week cycle. I suppose that before I had chemo, I would expect badness in my body to look like being stricken down by some sort of sudden-onset catastrophe. Instead, this drug makes you feel just a little worse, breathe just a little less, every day for about two weeks, until you cannot hold a conversation and breathe, not even when reclining. This happened to me last week. I ended up in the ER, undergoing the usual rigamarole to make sure I don’t have a pulmonary embolism. Thankfully, I never do.
This experience has led me to examine other indicators that indeed, unbeknownst to me, I am super fucking sick. For instance, the other day, two people tried to start IVs in my arm. They found a vein for a minute, but hardly any blood came out. Or, after I had my last blood transfusion, I noticed the next day that my face was “red” and began to panic. But then, I realized that it was just the color of a normal face. It had been so long since I’d seen it! In another gross example, for several weeks, all of my food has been falling right out of me (dig my discretion). I try to maintain a positive attitude while this happens. The entire affair is reminiscent of that odd, unsubstantiated fact that you can boil a frog to death by placing it in cold water and slowly turning up the heat.
In addition, perfect strangers have been walking up to me in public places and announcing that they are praying for me. This is very kind and I’m pretty sure this means I look like I am going to die. Children stare at me. I get long looks from acquaintances, after they realize WHO I EVEN AM, that betray the quick list of questions running through their minds. I imagine it to be something like this, “Holy shit, she looks like shit! Should she be here? Should I stop what I’m doing and help her get back to her home or the hospital? Why is she here? Is she ok? What should I talk to her about? Should I ask her about her cancer? I want to know about it in case she is going to die. Should I ask her if she is going to die soon? What about when my children talk about her bald head? What is it that I am supposed to do or say right now? I have to go.”
Perhaps a better tip off to the degree of my poor health is the level of concern and worry from my friends and family. It is an odd experience to sit in a hospital bed, or anywhere for that matter, and watch your loved ones fear for you. I imagine that this is what it might be like to die, if you’re very lucky and you are surrounded by loved ones when you do. But, again, as I’ve mentioned previously, all of this hardship is coming from the treatment, the ostensible cure, the preventer of death, not from death itself. But, in chemo, dying and not dying can look the same. It has been difficult for me to tell, based on how I feel, whether I am a safe or a dangerous amount of sick. The list of bodily concerns resulting from chemo could easily mirror the list of bodily concerns that precede the end of one’s life from cancer. How is this possible? How is it that both success and failure can look so similar? How is it that I can’t tell the difference?
In any case, I was too sick for chemo on Thursday, and I felt terrible about it. Another paradox of this treatment is that it doesn’t feel better not to get it. Ok, in many physical ways it feels MUCH BETTER NOT TO GET CHEMO. But, mentally, the fear that this one missed treatment will mean the difference between life and death does not feel better than the physical side effects. The upside of missing this treatment was that I got to go up to the family cabin for Memorial Day weekend and feel comparatively well. I left the cabin on at least a few occasions, even making it to the beach, and out onto a pier to watch my kids catch fish. I ate and slept. I watched the sunset over the lake.
This morning, when we were leaving, Vivian grabbed a Powerade Zero out of the fridge and brought it to me (I drink SO MANY electrolyte beverages). Later, in the car on the way home, she said, “Mom, I brought you that drink so you could HYDRATE, because I want you to HYDRATE, so that you can be well again. You have really kind kids.” Again, I’ve been really sick, but in many ways, I am officially the last to know or admit it. At least, it seems that way if my four-year-old is starting to take an active role in replacing my electrolytes.
On Thursday, I have my second-to-last scheduled chemo infusion. I have my last carboplatin and taxol combination, and then the week afterwards, I have my last taxol, my last chemo infusion. I cannot wait to be done. I cannot wait to begin getting well again.