We can ignore even pleasure. But pain insists upon being attended to. God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is his megaphone to rouse a deaf world.
— C.S. Lewis
I’ve put off writing this post for a while.
When people learn about my battle against Lumpy or come to my blog for updates, I want them to see how my faith, family and friends have allowed me to weather this setback with grace and humor. I want them to be inspired. I want them to laugh. I don’t want anyone’s pity. What I’m dealing with is not ideal, but it will also (God-willing) be largely conquered by the time summer rolls around. I’ve often found myself wondering what right I have to feel down or negative when I have so much support and such a good prognosis.
But my other goal for this blog is to be honest and open about what I’m going through and how I’m feeling. So in the interests of full disclosure, I have to admit that it’s been a rough week and a half. This is getting somewhat difficult for me.
Before I get into an examination of my current psyche, let’s get caught up on where I stand in my treatment right now. My counts were high enough a week ago Monday to receive my second dose of chemo, delayed significantly by my hospital stay the week before. The process of actually receiving the chemotherapy has thankfully not been a problem for me. Once they get the IV into my port, it just means getting really tired from the Benadryl and then eating food and watching Netflix for a couple hours with Theresa while the poison courses into my veins and finds its way to Lumpy. (Incidentally, have you seen my neck lately? The lump is basically completely gone. It’s awesome! Can I be done now?)
When I got home from chemo, however, that old familiar feeling came roaring back. I think I’ve tried to explain it here before, but it’s almost beyond words. Imagine that you’re trying to go through your daily routine and there’s a small creature residing in your stomach and he’s constantly running around so you can never forget that he’s there. Nausea is not the right word for it, because I’ve never been even close to throwing up. It’s just a stomachache that seems to have no cure and no immediate end.
The last time I had chemo, this stomach issue began to subside, then turned into acid reflux symptoms (for which I started taking Nexium and basically cured), then went away and I began feeling good enough that I could classify myself as chasing normalcy. Not so this time. The ever-present stomachache evolved into a constipated/bloated feeling that remains with me even now. Feeling “normal” has become a game of “how well can I ignore my stomach.” While I fortunately can still taste all of my food and no tastes are making me sick (as I’ve heard some chemo patients experience), my appetite is pretty much gone. It’s hard to eat when you always feel full.
I went to the doctor on Monday for a rather uneventful appointment, where he gave me the glad tidings that my white blood cell counts were still at safe levels. On the heels of that good news, however, I hit a particular low point yesterday evening when I started getting chills and–with recent history as my guide–decided to take my temperature. I had a fever of 99.5. I took Tylenol and it subsided, but then it returned in the wee hours of this morning at a temperature of 100.5. If I reach 101 degrees, it’s off to the emergency room. Fortunately the Tylenol helped again and I’ve been fever-free all day, but the specter of returning to the hospital is haunting me constantly.
I would rather be forced to lie around and feel awful in my own bed than feel relatively good and spend a few days in the hospital with a fever. I can’t go back there once every two weeks. I’ve been living the life of a shut-in to avoid infection–working exclusively from home, never going anywhere, canceling visitors if I find out they’ve recently been sick–but somehow something seems to have crept into my system to bring on a fever. I spent today feeling exhausted and listless. Just walking around my house is leaving me incomprehensibly winded and even watching the action-packed adventures of Sydney Bristow on Netflix couldn’t fully distract me from the creature’s jumping jacks in my bloated stomach.
In other news, “chemo brain” is also a very real symptom. There are times when I’ll be talking to Theresa or phoning into a work meeting and I will completely lose track of what I’m talking about or be unable to think of a word that I just used a few minutes earlier. For those of you who are playing me in the timed-word-search smart phone game Ruzzle, I blame any of my losses on chemo brain. If you’re not playing me and you would like to win, my username is DownWithLump.
The hardest part about any of this goes well beyond my symptoms though. It’s mostly about my complete lack of control. Management of symptoms can only go so far in making you feel good and there’s no pill I can take to make sure my fever doesn’t hit 101 or ensure that my white blood cell count doesn’t slip back into the neutropenic danger zone. I am at the complete mercy of the doctors, the chemo, and my body’s reactions to all of this. As I’ve gone through this recent rough patch, I’ve tried to focus on surrendering to God and to trusting in the process that He has working in me right now. I’ve also tried offering up my own discomfort for others, but I often wonder if I even know how to do that. These are things that I think I need to further investigate and really work on mastering. I guess Lent is a pretty good time to figure that out…
Regardless of all of the above, I know for sure that I still feel completely blessed about my situation, as well as a newfound kinship with others who are often dealing with conditions far worse than mine. When I heard the news that Cardinal Francis George was admitted to the hospital in the latest stage of his longtime battle with cancer, it struck me in a way that it never would have before. I have a new (admittedly less intense) insight into what he is going through. When I learned about twenty-something Joe Hall, who was diagnosed with a rare and fatal abdominal cancer, I realized that there but for the grace of God go I. My prayers for these people and others like them have become somehow more specific and fervent because I have experienced some of the same things that they have gone through. I’ve moved from sympathy and pity to a keen sense of empathy.
I believe one of the greatest blessings of this illness will be in the way that the pain and discomfort I will feel for the next several months will continue to be God’s way of shouting to rouse me in my deaf world. It’s a wakeup call that I never asked for, but will happily accept. As I sit in my house for the fourth day in a row without leaving it, I often find myself daydreaming of the summer to come. I’ll be outside. I’ll be healthy. I’ll be alive. But I’ll remember all of this and I’ll never see things the same way again. As the wise G.K. Chesterton once wrote, “Every instant of life is an unimaginable marvel.” I have no doubt that it will feel that way once I’ve come out OK on the other side of this thing. It’s already starting to.