Let’s Talk About the Pain

Because Susan’s got a lot of it. Hers falls into four basic categories.

There’s the general lower back pain associated with a kidney infection. It’s uncomfortable and debilitating but seemingly manageable, and lasts only as long as the infection does. Bad, but relatively brief.

There’s intestinal pain associated with digestion, but that also is only sporadic and more irritating than excruciating. Some medications, such as Sevredol (a type of morphine) tend to cause digestive distress. Imagine pooping rock-hard little rabbit pellets out of a butt hole carved into your belly and you have some understanding of the discomfort.

The pain of a blocked catheter is far more intense. The tubes that drain her kidneys occasionally get clogged with mineral salts, slowing or even stopping the flow of urine. When that happens, the pain gets pretty severe as the urine backs up into the kidneys and they become distended, potentially causing permanent damage. Since, according to the Mayo Clinic, “symptoms can quickly move from mild — pain, fever and infection — to severe — loss of kidney function, sepsis and death,” we don’t mess around with blockages. If we can’t clear it ourselves, it’s straight off to the Emergency Room.

But the most intense, atrocious pain is caused by the cancer itself. In Susan’s abdomen, more or less directly below her stoma, lurks a malignant tumor. Although tumors are not, of course, sentient, it’s difficult not to anthropomorphize them. Unlike normal cells, cancer cells can ignore your body’s signals to stop dividing, and blatantly disobey the order to begin a process known as programmed cell death, or apoptosis, which the body uses to get rid of unneeded cells. They are, in effect, giving a huge, hateful middle finger to the rest of your body. Moreover, cancer cells can “influence the normal cells, molecules, and blood vessels that surround and feed a tumor…. For instance, cancer cells can induce nearby normal cells to form blood vessels that supply tumors with oxygen and nutrients, which they need to grow.”

So, yeah, it’s hard not to imbue her tumors with a certain sinister intelligence, a spiteful self-awareness. This particular hateful little shit sits where this whole thing began, in her colon. Or what’s left of her colon, anyway. And it causes harrowing pain. A couple of months ago Susan likened the intensity of the pain to that of childbirth. Obviously, I don’t really know what that’s like. I was present at the birth of both of our boys and considered it pretty painless, although I hear it’s a lot worse for the mother. But after the agony of bearing a child you’re rewarded with, you know, a child. Cancer pain gives you nothing but the promise of more misery.

And what exactly causes this pain? Most cancer pain is caused by “the tumor pressing on bones, nerves or other organs in the body.” I’ve read that cancer pain can be either acute or chronic. Well, Susan’s pain is chronic, in the sense that it occurs every single day, and is acute, in the sense that at times it’s a piercing, punishing, racking pain that doubles her over and sends her frantically scrabbling for her medication.

And she’s on some pretty heavy medication. Her morning begins with a 3 ml shot of methadone – breakfast of both champions and recovering heroin addicts. The abdominal pain normally kicks in after breakfast, when she often takes 133 mg tablets of fentanyl, a synthetic opioid roughly 50-100 times more potent than morphine. Sometimes it takes a few to take the edge off. This is called ‘breakthrough’ pain, which simply means that regular doses of pain meds no longer curb the suffering. Recently her doctor upped the dosage  of fentanyl to 267 mg, and we’re tinkering with the methadone, moving to three doses daily rather than two.

Chronic pain affects your quality of life in ways that I think aren’t easy for most of us to understand. Everyday activities – showering, shopping, taking a walk, sleeping, eating – can all become fraught with fear and suffering. Getting through a meal might be an ordeal. Playing with your kids might not even be possible. Physical suffering can creep like, well, like a cancer into every aspect of your life. Fortunately Susan seems to handle it all with courage, even when the pain takes her breath away and all I can do is tell her to squeeze my hand and remind her to “breathe, just breathe.”

So that’s the physical pain. Forget for now the emotional suffering of sweeping our 10 year-old son out of the room so that he won’t see his mom weeping in paroxysms of pain. Or talking about future plans and knowing that the inclusion of their mother in those plans is wishful thinking. That’s a different kind of pain, and while Susan’s suffering right now falls into four basic physical groups, the other forms of pain know no such categorical distinctions. But I’m sure I’ll get to all of that later.

For now that pretty much sums up what Susan is dealing with on a day-to-day basis. It sucks, without doubt. But there’s nothing that courage, faith in pharmaceuticals, and a shit-ton of opioids can’t handle. Although I hear it’s a lot worse for the person who actually has cancer.

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