Author: Michael

The body humbles you. Just a few days after expressing relief at my body’s reaction to the new drug regimen, I’m brought to my knees by an on-again off-again fever.

For the second Saturday evening in a row, I found myself in the ER because anytime you mix the words chemotherapy and fever, alarm bells go off in doctors’ offices.

Last week was fever, chills and bladder pain. This Saturday evening was the same post-infusion fever and chills. Both times, I was told that if I have a temperature above 100.5 or above, which I have, I need to rush to the ER to guard against sepsis.

I know the drill by now. Even before I walked out my front door, I saw how the evenings would play out—hours in the ER with myriad pokes and jabs by apologetic nurses. Visits by concerned but friendly doctors who refer to patients as “my friend.” A gown that never ties correctly in the back. (Will some entrepreneur please disrupt the hospital gown industry!)

I have nothing against the Kaiser Oakland Emergency Department. The facility is nice. The people are nice, and all the nurses I talk to say they love working there. On quiet evenings, you feel looked after. It’s a medical oasis of efficiency amid a giant health system. But there will never be a day when I wake up and think to myself, “I sure would love to go to the Oakland ED.”

Last week, they treated me to my fifth CT scan in three months (with a sixth scheduled later this month), two blood draws, a prostate exam, urinalysis, and IV antibiotics. This week: more blood tests, a chest x-ray to rule out pneumonia, and a consultation with the on-call oncologist.

In between all of this activity are interminably long waits—for the test results, for the doctor to be done with other patients, for the IV to finish its work. Even with good company, you find yourself staring blankly at your room’s gaudy-patterned curtain and impatiently checking the time. 9 p.m….10 p.m….11 p.m….Midnight.

(This week, they kindly tried to rush me out because I was aiming to make a dinner date on time.)

In the end, none of the tests turned up anything. As of today, fingers are pointing to one of the chemotherapy drugs whose side effects include fever. The biology behind that eludes me. But I’m wondering now whether the old drug regimen wasn’t so bad after all, because a three-day fever, chills and aches is a pretty lousy way to spend your weekend.

The irony is that my two most recent chemo infusions had gone well, with no nausea symptoms, an unexpected and hopeful bright spot amid this journey.

But my body couldn’t abide a smooth sail. It had to conjure up a new problem just to remind me who is helming the boat.

[PS: The colloquial term is ER, right? But it’s not really an emergency “room.” Kaiser refers to its urgent treatment space as the Emergency Department, or ED. That’s an unfortunate initialism. But here we are.]

[Midnight at the Oasis, Maria Muldaur]

I now have a second course of the new drug regimen under my belt.

The not so good:

• Neuropathy (tingling in appendages) is showing itself
• More fatigue, but for a shorter period, than under the old regimen (could fall under either category)
• Tender gums
• Some weird post-infusion fever thing that is curious

The good:

• None of this so far, which is pretty remarkable
• Shorter infusion sessions (just one hour)
• No cold sensitivity

The lack of nausea is huge. It means I can eat and move about and ride in a car without feeling sick. And it might mean I can take less anti-nausea medicine, which has its own unpleasant side effects. This may trump everything else right now. I’m hoping the neuropathy doesn’t emerge too strongly since that is something that can persist past treatment.

Next up: an important CT scan on the 28th that will show whether the treatment is making progress. I’m am embracing positive thoughts about that. But expect a sleepless night or two heading into that day.

{Keep on the sunny side, The Whites]

Moving up in the world. Take the small victories where you get them.

Also, the new chemo regimen is just a one-hour infusion as opposed to three. Praise be.

[Room at the Top of the World, Tom Petty]

Dear Big Pharma,

It’s time to talk. We’ve known each other for so long. Yes, I hang around with Supplements sometimes, and cruise the natural food store, and spend time eyeing better diets. I even exercise. But you are always there when I need a dependable helper.

Lately, though, you’ve been coming on strong, and I don’t like it. You’re pushing your way into every corner of my life. It’s embarrassing to see you lying around the house everywhere—with your gaudy orange outfits—whenever visitors come over.

You’re unreliable. You say you’ll do one thing, and you do another. You fix something over here, but make a mess of things over there. You follow me to work, in my car, on hikes, at every meal. I schedule my time around you. I wake up and go to sleep with you.

You need to back off and give me space—give us space.

Your friend,

Michael

Pictured:
Zofran: Nausea
Compazine: Nausea
Edibles: Nausea
Lipitor: Cholesterol 
Chewable baby aspirin (yum!): So I don’t have a heart attack
Metoprolol: Blood pressure
Creon: Mealtime pancreatic enzymes
Oxy: For pancreatitis pain
Naloxone: For when I overdose on Oxy
Flagyl: Antibiotic
Cipro: Antibiotic
Lamictal: Epilepsy
Docusate: Constipation
MiraLax: Constipation
Imodium: Diarrhea (Make up your mind.)

Every day:
Creon: Pancreatic enzymes with every meal
Lamictal: For epilepsy
Metoprolol: For blood pressure (for the time being)

As needed during a chemo cycle:
Zofran: Nausea
Compazine: Nausea
Edibles: Nausea
Docusate: Constipation
MiraLax: Constipation
Imodium: Diarrhea
Tylenol/Ibuprofen

[Girl, you have no faith in medicine, White Stripes]

Great Pumpkin, we hardly knew you. But we’re kicking you to the curb!

Because of the Heart Issues, The Oncologist is switching me to “non-cardiotoxic” drugs, even though my heart seems to be in tip–top shape. The concern, The Oncologist says, is that one of the former chemo drugs, 5-fluorouracil, was causing vasospasms, which can mimic a heart attack, and also cause a heart attack. She is solidly in the anti-heart attack camp.

So, the new chemo regimen switches from every other week to three weeks on-one week off. Downside: more chemo cycles, of course. Pluses: No Great Pumpkin and a regimen that is supposedly better tolerated.

In the meantime, cardiologist Dr. Brian is still convinced that something might be amiss with the heart-lung ecosystem, so we get yet another CT Scan tomorrow (I’ve lost track how many I’ve had) to check for a blood clot in the lung. I expect/hope/pray they find nothing.

Onward.

[Changes, by Charles Bradley (you were expecting Bowie, weren’t you?)]

[Why I hate the pancreas and you should too.]

The pancreas is the crybaby of organs.

Take its neighbor the liver, for instance. You can beat the hell out of the liver (“Bottoms up!”), but if you ask for forgiveness early enough and pinky swear to be nice, it will sometimes give you a do-over and actually regenerate its own cells. How polite is that?

Colon cancer is bad, but you can detect it early, and it progresses slowly (good), and they can cut out a chunk of your six-foot long intestine and you’ll still be fine. Hodgkin lymphoma, prostate, testicular, melanoma, breast and thyroid cancer—I wouldn’t wish those diseases on anyone, but most people survive with the proper treatment.

But the pancreas is a little asshole of an organ. Most of us don’t know what it does and where it exists in our bodies. So it’s burdened with resentment that manifests as bad behavior. If you asked someone to tell you where the pancreas was, it would be like watching an American trying to find Ukraine on a map. If you asked someone to tell you what it does, it’d be like asking them to explain what this contraption is. The pancreas is not one of the popular kids, so it pouts in the corner of the schoolyard plotting its violent revenge. (“It was such a quiet organ. We never saw this coming.”)

The pancreas is very important. It secretes enzymes that allow the body to absorb nutrients. So technically, you could find pancreatic cancer very early. Losing weight unintentionally, especially muscle mass, could be a sign of pancreatic problems. In fact, the weight loss can sometimes emerge years before other symptoms. But who connects weight loss to emerging pancreatic cancer? No one. And the asshole pancreas hides its cancer cells so well that when you eventually find them, it’s already angrily shaking its fist at you. 

The pancreas is such an asshole, when it gets angry, it can unleash a sudden torrent of pain that reaches an 11 on the hospital “how-would-you-rate-your-pain” scale. If you like morphine or Dilaudid, show up at an ER with pancreatitis and they will fix you right up. Three times my pancreas has swelled up, laying me low in a matter of minutes. Twice I went to the ER; the third time, I curled up on the floor of my office and waited an hour for the Tylenol to kick in. The thought of it returning haunts me.

The pancreas is such an asshole that its pain will sometimes trick doctors into first thinking you have gallstones (I wish) or liver problems (I sort of wish). The pancreas is such an asshole that it will sometimes hide its tumor behind other organs—the harder to find you, my little dearie.

The pancreas is such an asshole, it even makes it hard for us to fix. Its head sits near critical blood vessels that can block the surgeon’s scalpel. And when you can do surgery on the pancreas, it’s so squishy and pudding-like that the surgical stitches sometimes slip apart. This was such a problem decades ago that one in five pancreas surgeries was unsuccessful. 

To be fair to the pancreas, when it works, it does its job quietly and efficiently. Without it, you’d have diabetes. But I’ve got nothing nice to say about my crybaby pancreas and its defective little bastard cells. Just the two words that title this post.

[Fuck you, by Lily Allen]