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Keep on the sunny side

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]

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Room with a View

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]

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Turn, turn, turn

Having not had chemo in nearly a month, I have enjoyed the luxury of feeling well physically without the constant reminder that I am sick. I don’t currently look or feel like a cancer patient, and it’s helped me try to live as normal a life as possible the past weeks. (Chemo restarts Thursday.)

So in my first meeting of my new cancer support group, I feel apart from other members.

Jan is in the group, and she shares that she is going to die in the next four to six months. [oh no…deep breath…] Her cancer is advanced, she has stopped treatment, and she is arranging palliative care. She is sewing up loose threads. And she’s learning what she can legally do to control the timing and method of her passing.

Jan is telling us this through tears. She is not feigning stoicism, nor is she holding back. She knows her fate, and she is scared and horribly, horribly sad. I can only imagine the worries that keep her awake at night.

Despite this, she manages to smile while sharing the progress of her backyard garden project. She is excited with how it is coming along, and she’ll invite us over soon for a small garden party. 

After Jan shares her story, Bridget tearfully tells us about her adult son who died of colon cancer two weeks prior.

This is the First Hour of the First Day of the first cancer support group I’ve ever experienced. I had expected emotion, but I didn’t know it would fall into my lap so soon. I struggle to hold back tears as Jan and Bridget talk.

Meanwhile, as I remember from the introductions, some in the group have had at least one recurrence of their cancer. Brenda has already lost her hair and grown it back. They take turns offering their advice to me. I am a cancer rookie amid veterans. 

This is my first close interaction with other patients since my diagnosis, except for a friend and, fleetingly, the two other people in my chemotherapy orientation. As I come and go for my infusions, I get only brief glimpses of other patients behind curtains.While there, I’m alone in a small room.  

The support group, on the other hand, thrusts all of us into one (virtual) room. The facilitator assures me beforehand that people don’t always talk about their cancer. Everyone has an opportunity to update the group on whatever they like, whether it’s a hobby, travel adventure, family or their own medical situation. The mood is sometimes light.

That’s what I hope for with my first session. But the world turns beyond our control, and my first day isn’t light at all. It is raw and unfiltered.

I sit with it for a while afterward, and I realize it’s OK. This was probably something I needed now anyway—a reawakening to my own bumpy road ahead. 

[Turn! Turn! Turn!, by Judy Collins and Pete Seeger]

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Girl, you have no faith in medicine

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]

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Changes

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 tiptop 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?)]

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F*ck 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. 

“Sorry, but I don’t see myself on your chart.”

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]

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Good Day Sunshine

I’ll be honest. I didn’t really want a steel wire threaded up from my wrist to the inside of my heart. Abundant anxiety as my brother and I tried to find our way through the maze of hallways at Kaiser Walnut Creek. No one seemed to know where I was supposed to be for my angiogram, which didn’t instill a lot of confidence in the whole Walnut Creek operation (as opposed to my Mother Ship, Kaiser Oakland, which is somehow chaotically functional and professional). We make a joke about Igor and a basement “operating room.”

But…after 90 minutes of prep and pep talks by wonderful nurses, it took no more than 10 minutes for them to feed the catheter up my arm and into my heart, inject some dye, look around, and call it a day—all of which I endured wide awake with just a smidge of fentanyl.

“OK, we’re done. Everything looks good,” says the doctor. Good as in no heart disease. Good as in no blood clots or other blockages. Good as in no stent required. And good as in “you can go home in a few hours.”

Good as in a good day.

PS: Nurse Nancy told me that I had to be very careful with the incision where they put in the catheter so that it doesn’t start bleeding. It’s an artery, and if it were to break open, I could “bleed out in two minutes.” I guess that would qualify as a bad day.

[Good Day Sunshine, The Beatles]