
I never knew.
I’ve always thought of myself as “strong,” “tough,” or “able to withstand adversity.” When I was younger I was a brawler. I would start fights, finish fights, win fights, lose fights. I would break bones – mine and others – and laugh at the blood flowing from my mouth. I’ve felt the sting of a blade against my skin and the blunt force trauma of a wooden stave to the ribs.
Two months ago I went under the knife for a radical neck dissection and now have a 10-inch scar on my neck. I had my tonsils removed at the same time. I couldn’t walk, talk, eat, or sleep following that surgery. And yet I smiled and bore the discomfort like the strong man I knew I was.
I have met my match – my personal demon, my bane; the thing which brought me to my knees and for the first time in my life made me question if I could go on. Made me wonder if I could endure and was it even worth it.
Chemotherapy.
I went in last week positive that this, too, would be an indignity to be suffered but one from which I could, and would, emerge the victor. I sat down in my chemo chair blithely, chatting with the nurses and other patients – joking even. I was young. Strong. I was the man they all wished they could be – my strength would provide comfort to my fellow cancer patients. I was in control.
And I emerged, six hours later, confident that I had handled this as only I, a strong man, could.
Until the next day. The nausea started as soon as I woke up. It didn’t relent for six days. 24 hours a day the pain and nausea was my constant companion. The drugs I had been given stopped me from vomiting (much) but the nausea was with me. Even in my sleep.
I couldn’t escape. Not one second went by when I did not wish for relief. I didn’t cry out in pain – no, I’m not the kind of guy to wallow and weep, but the pain of my nausea became my entire universe. From one second to the next I was comparing the flavor, intensity, location, and effects of my nausea. In my sleep I dreamed of being sick on a boat, choking on a tiny morsel of food.
I couldn’t eat. The only food that I could keep down at all was plain white rice. I managed half a bowl a day. I didn’t drink – I became dehydrated – and that made my nausea even worse. I couldn’t get comfortable. One second I would be sitting in a recliner, the next I had to lie down. A moment later I would sit on the edge of the bed, hunched over, rocking slowly in front of my ever-present puke bucket.
Only I had nothing to puke. I was empty. All I had was a constantly-increasing supply of stomach acid – which served only to exacerbate my nausea and to irritate my radiation-irritated throat and mouth.
Then came the diarrhea. Painful. Explosive. So intense that it caused me to have dry heaves. I would lean over the tub while I was sitting on the toilet just to cover my bases. It worked – mostly. Don’t ask.
If it were just a physical toll I think I could have handled it. Maybe. What I didn’t expect was the mental and emotional toll this would take on me.
Without food and water for a week, sick near to death, something happens to you. Something changes inside. Maybe it’s hormonal. Maybe it’s natural. Whatever the cause, I began to seriously despair.
Yes, I chose that word correctly. Despair. A state in which all hope is lost. My future was gone. My past, non-existent. I had now. This moment. Nothing else. And that moment was filled with nothing but pain, misery, and a hopeless wish that the pain would go away.
I could barely have a conversation with anyone – although I tried for the sake of Carey and the kids. I found it had to look at anything for more than a second. Nothing could hold my attention as I focused almost exclusively inwardly.
And finally – the fatigue. I lost 8lbs in a little under 6 days. That’s a lot of weight and it doesn’t come off without a terrible price. I couldn’t walk across the room without wheezing as much from pain as from general weakness. The thought of getting into the shower caused me anxiety at the effort it would take. Anticipating a conversation that I knew would happen caused me to cringe in dismay.
For the first time in my life I asked myself, “Can I go on?” Should I? Was it worth it? My answer was, always, a gritting of my teeth and a “YES I CAN, YES I SHOULD, YES IT IS.” I was always determined – but I never, ever, anticipated that my emotional state would be reduced to the point where I would even ASK myself that question.
But ask it I did. I faced my demon – the one who beat me so badly that I had to reach deeper inside myself, deeper than I ever had before, to find a new wellspring of strength and perseverance.
The good news is that I learned a lot about myself. Even at my darkest, my most hopeless, I am not truly a pessimist. I can, and will, surmount and survive. I didn’t understand that this battle would test me to the limits of my endurance and beyond.
I was naive. I also learned that I have much deeper reserves than even I expected. I reached deep – and found there was more to me.
My partner, my love, the light in my darkest hour through all of this has been Carey. Her quiet support and acceptance of my condition, her constant attention and touch, her strength (which I suspect is far greater than mine) has been simply amazing. She effortlessly nurses me, manages the family, and takes care of our days-to-day. She selflessly gives of herself day in and day out. I honestly don’t know how I would have fared without her.
I learned today that my experience with chemo is atypical. All patients call or go back in for IV liquids and anti-nausea medication the week after chemo. I didn’t. I was told to expect nausea. I was told to expect to be sick. I just accepted it and waited it out. I shouldn’t have.
I was told I am on the MOST toxic of all chemo drugs – it’s a mustard gas derivative – and that I should have called when my symptoms got bad. They did tell me that before chemo, but I figured they would proactively schedule me for an appointment if they knew it was going to happen. Why wait for me to get sick first, right?
Anyway – I survived. I have some kidney pain still. Some muscle cramps from dry heaving. I am so weak a feather could knock me over. But I’m back to work – recovering.
I have two more chemo treatments scheduled. I won’t lie. I’m terrified of them now – but I do know that I have it in me to prevail.
Jesus.Eric might have said this already. Or maybe it’s just an awful idea. Or maybe you’re adverse to it. But have you considered marijuana? I’m sure I’ve never experienced your degree of nausea, but maybe it’d help with that?
Yeah – Eric and I discussed it this morning as a matter of fact. It’s definitely an option – but limited because I’d have to smoke. That would seriously mess with my throat which is already sore, swollen, and tender from my daily radiation treatments. My doctor prescribed more anti-nausea meds for next time and, of course, I’ll go in for IV fluids next time.
White rice huh…What was it Mitch Hedberg said about rice?.. oh yeah..”Rice is great if you’re really hungry and want to eat two thousand of something. “
Man, that is rough. My treatments were bad, but really a walk in the park compared to your suffering. My experience with the smoke was good. I felt stronger, I could eat, I even enjoyed food. I would be a bit lower the next day, but it was nice to feel good for a little while. It might be worth the irritation to your throat.
I was speechless after reading this the day you posted it, but I still want to tag a comment so you know that I’m reading. 🙂
Ron, I’m reading your blog for the first time in 2013 and this entry has left me with tears and the compelling need to write a reply. My 45-year-old husband was diagnosed with tongue cancer with 4 positive lymph nodes this past spring. He underwent a hemi glossectomy, reconstruction of his tongue with a supraclavicular flap, right sided neck dissection, and a temporary tracheostomy. As of today he has also endured 14 rounds (of 30) of radiation and on Tuesday he will undergo the 2nd dose (of 3) of Cisplatin. Your details of how you were after your first chemo was him to a T! We take things day-by-day and now know what’s coming around again in a few days. Thank you for this blog as it continues to help others through this horrible bump in their road!
Hi Lori;
Sounds like you and your husband are in the middle of a massive battle. I am so sorry you both have to deal with this, and I am glad my blog is helping at least a little. It is really hard right now, but it will get easier. I promise. Please feel free to friend me on Facebook if you want more personal and real-time discussion. A number of cancer fighters who have found my blog are now my Facebook friends. http://www.facebook.com/ron.sparks . Regardless; you and your husband stay strong! There will be good days, bad days, and REALLY bad days; but they do pass and they never last too long. If you need anything at all, don’t hesitate to reach out. Good luck.