Let Us Begin

Feeling utterly wrecked today, so let’s run down this week’s chemotherapy symptoms.

• Persistent (and perhaps permanent?) neuropathy that has spread to the feet
• Swollen ankles accompanied by purplish skin
• Extreme fatigue
• Shortness of breath on light exertion
• Nausea
• Constipation
• Achiness
• Evening fevers with chills
• Torso rash (didn’t see that one coming)
• Delicate nose membranes that bleed.
• And a cough that won’t quit from a cold two weeks ago

I know, the life of the party.

That’s the worst collision of symptoms so far for me. I had no illusions that this would be easy. Sometimes, however, the cure feels worse than the disease. It’s not, of course. But some weeks hit hard.

On the very plus side, courtesy of loved ones, I now have some really great caps for my naked and chilly noggin, including one that we’ll reveal nearer the winter holiday and another that…well, we’re still pondering its public unveiling.

Next update: Can my body handle chemo or should we jump right to surgery? That’s the topic of the moment.

[Save Me cover by Nina Simone]

I work with good people.

[Gratitude by Earth, Wind and Fire]

The long-awaited CT-Scan of the pancreas was today, and well…someone please tell me how I’m supposed to feel about the results.

“There is a subtle vague very approximately 1.4 cm focal rounded pancreatic head lesion abutting the duct and stent suspicious for the patient’s known pancreatic adenocarcinoma. It was not well seen as a discrete measurable lesion on prior examinations making comparison difficult, but it may be mildly increased.”

Translation: “Whoever did the CT-Scan before didn’t get a good tumor measurement, so we can’t really tell if it’s changed in size or not, but it may have gotten a smidge bigger.”

Well hell.

Con: I really would have liked it to have shrunk. In fact, I expected that.

Pro: The status quo is not horrible, and I’m grateful it has not gotten dramatically worse. Something is working.

What does it mean? The oncologist is viewing this as very vague information. She will talk to the surgeon to get his feedback. The point of my chemo, after all, is to help give the surgeon a good canvas on which to paint. Is he getting what he needs?

Meanwhile, my tumor marker (CA-19-9) number has dropped down into the normal range, which means there are fewer cancer proteins running laps in my blood. A swing in one direction or another can suggest whether treatment is headed in the right direction or not.

That my number has dipped is a good thing, and I will cling to that for now—as imprecise a measure as it may be of my overall health.

In the meanwhile, it’s time to better manage the areas I can control—exercise, diet, sleep, etc. I can punch harder, you bastard tumor.

[Stuck in a Moment You Can’t Get Out Of, U2]

“Hey Siri, show me nearby stores with knit caps.”

[Hair, from the movie Hair]

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]