Update from Camp Chemo – Day 2

The intoxication has begun.

I am referring, of course, not to drunkenness – that would actually be more fun – but rather reappropriating that word to a more literal meaning – the introduction of toxins into one’s body. That’s really what chemotherapy is. It is therapy, in the sense that its purpose is to heal or at least ameliorate symptoms, but it has little in common with aromatherapy or massage therapy or other a million and one other practices in this therapeutic age that are intended to make us feel better.

Chemotherapy is the intentional introduction of harmful substances into our body, with the intent of harming the cancer cells more. The goal is to do maximum damage to the cancer cells while containing the collateral damage to the healthy parts of your body. Dosages are carefully controlled for this very reason. The idea seems to be to give you as much as you can stand, stopping just short of doing serious and irreversible damage to your healthy cells.

My first day went well. I feel good. I received the E and the P drugs of my BEP regimen (full description here). So far the only thing I feel is a bit of an unpleasant taste in my mouth, and perhaps some ringing in my ears. But my energy level and appetite are pretty good. I was able to go for a walk after I got home yesterday, which felt good after sitting in a chair for 6.5 hours. My doctor said to expect the effect to accumulate over the week, and that the worst days would likely be Sunday and Monday. So I am bracing myself.

I’m getting my infusions at the Ballantyne office of Levine Cancer Institute here in Charlotte. The infusion center is a rectangular room, about 40′ x 25′ in dimension. Along one short wall is the nurses’ station, where the three on duty nurses are seated behind a desk when not actively engaged with a patient. The other 3 walls are where the patient chairs are situated, 15 in all. These are nice, comfortable leather recliners that also have a heating feature which I haven’t tried yet.

The middle of the room has various supplies, including portable stations for the nurses that include a laptop, hand sanitizer, a bracelet scanner, and a few other supplies. With each change of drip, the nurse pulls that over to verify your identity and to record what she’s giving you. When she gives you a chemo drug, they have a policy that two nurses have to verify your identity and the dosage, and make sure there is no chance of making a mistake.

Everything is administered through an IV. In order to facilitate that, I have a port a cath, called a port for short. It’s a small device, about the diameter of a quarter but thicker, which is surgically implanted under your skin, in my case just south of my collarbone on my right side. The port is already tapped into a vein, so for people who need frequent IV treatments, it’s much easier than finding a new vein and setting all that up each day. It also means that the IV lines are connected to the port and not to my arm, which means I have free movement of my arms which is more comfortable.

So that’s what is happening here. I am sitting in a chair most of the day, waiting for these various infusions to complete, and finding ways to pass the time. Each station has a personal TV, which I haven’t availed myself of yet. As long as I have the energy, I hope to spend the time reading, doing puzzles, or writing blog posts. I’m sure the TV time will come.

I’m working on a library book which is really good but really long. It’s called The Power Broker: Robert Moses and the Fall of New York by Robert Caro. Robert Caro is regarded by many as the greatest biographer ever. More people know him, perhaps, for his biographies of Lyndon Johnson, the fifth and final installment of which he is working on now; but his first work was the one I am reading. And not a bad first effort; he won the Pulitzer Prize, and the book was selected by the Modern Library as one of the 100 greatest nonfiction books of the 20th century. It’s a biography of Robert Moses, who I have to admit I have never heard of before coming to this work. He was a public official in New York City from the 1920s through the 1960s who eventually came to be in charge of practically all public works, including highways, parks, and public housing, and wielded an incredible amount of power in that capacity, leaving an indelible legacy on New York’s infrastructure. Whether that legacy should be regarded as positive or negative is a matter of opinion; the author’s can probably be inferred from the subtitle.

Anyway, it’s a fascinating study of the acquisition of power. Moses, an unelected official, was in many ways more powerful than the mayor of New York City and the governor of the state. He acquired that power through a combination of shrewd political maneuvers, manipulation of the media, identification with popular causes, mastery of the inner workings of city government, and an immense personal ability and drive which enabled him to use everything he acquired to deliver results – roads, bridges, parks – that were tremendously popular with people.

It’s a great book, worthy of the accolades, but it delves into the minutiae of municipal government a bit too much for my taste. It would have greater resonance for a New Yorker who would recognize all these public works and the impact they continue to have on the city. Overall, I recommend it. If you’re up for reading an 1,160 page nonfiction book.

The other book I started yesterday, as an audiobook, is The Climb by Anatoli Boukreev. I needed an audiobook to go along with my print book, because for some of my treatments I am wearing cold therapy gloves on my hands which makes me unable to turn pages. I will come back to that in a minute, but let me finish this digression on my reading. The Climb is a book about the infamous 1996 season on Everest in which 12 climbers died. I find this to be a fascinating subject and have read a number of books about it, the best and most memorable of which is Jon Krakauer’s Into Thin Air. Boukreev was a guide for one of the climbing groups, and so his work, like Krakauer’s, is a first-person account of what happened, that was written as a rebuttal of sorts of Krakauer’s account. This whole genre of Dangerous Adventure Nonfiction is one of my favorites, as my wife can attest to as I am constantly searching for another book about shipwrecks, climbing mishaps, nautical disasters, and various other calamities.

To complete the digression, in my morning reading, I’ve been working my way through the edited sermons of Martyn Lloyd-Jones on Paul’s letter to the Romans. I have a time of reading and prayer each morning, and I have evolved a system over the years where I alternate the readings between a “read the Bible through” program in the even-numbered years, and a deeper Biblical study of a book or topic in the odd-numbered years. This year, I decided to embark on this Romans series, which might not seem like a project for an entire year if you’re not familiar with Martyn Lloyd-Jones. But Dr. Lloyd-Jones, who was the minister at Westminster Chapel in London from 1939-1968, was famous for doing incredibly deep, verse-by-verse, sometimes word-by-word studies of New Testament books, and his series on Romans is his best-known. For 13 years, from 1955 to 1968, he preached on Romans every Friday night, starting at the beginning and making it into Chapter 14 (he didn’t even finish!) before he retired from his ministry at Westminster. So I don’t even know how many volumes there in total; I am in the second right now. I think it will take the whole year.

As much as I am a supporter of read-the-Bible-through programs, I always think there is a danger, almost unavoidable, that we become focused on getting through the readings more than actually applying them. Not taking anything away from the value general Biblical knowledge, but it is the application of the Scriptures to our own lives that really makes the difference. The profoundest parts of the Psalms, the gospels, and the New Testament epistles demand to be read slowly, contemplatively, and prayerfully if we are to get maximum benefit. So this is why I alternate reading the Bible through with focusing on deeper works that promote that other kind of slow, contemplative reading. I recommend it.

(End of digression) Getting back to the cancer. Yesterday there was one other guy who, like me, was basically there all day. Other patients with shorter infusions came and went during the day. Not everyone here is being treated for cancer; there are some patients with other blood disorders such as anemia, not related to cancer, who are under the care of a Levine hematologist and are here for an infusion or transfusion.

I call this Camp Chemo because a) I like alliteration and b) it does seem like a day camp. Every day I pack my supplies for the day, including amusements, food, and cold therapy supplies. I’m surrounded by other campers and by camp counselors. At the end of the day, I go home.

I’ve already covered my amusements, in probably too much depth, so let me touch on cold therapy and food. One of the many unpleasant potential side effects of two of my chemo drugs (E and P) is neuropathy, a condition in which nerve damage results in a tingling sensation, loss of feeling, and other disabling effects, first in the fingers and toes, possibly spreading to the hands and feet. There is a school of thought, supported by evidence that is real if not overwhelming, that cold therapy during the E and P infusions can help prevent neuropathy. So I bought some cold therapy gloves and cold packs off of Amazon and am using them during those infusions. It’s really uncomfortable – ever plunged your hands or feet into a bucket of ice water? – but I’m willing to try anything if it will help stave that off. I think I may have overdone it a bit yesterday; I feel like the tips of my pinky fingers haven’t totally recovered their sensation yet. Maybe just a touch of frostbite. So I’m going to try to adjust today.

Regarding food, I’m going to do a separate post on that at some point, but suffice it to say that I have changed my diet significantly, going to a whole foods, mostly vegetarian diet. There is a school of thought that diet has a great deal to do with getting cancer in the first place, and that nutritional changes can actually cure cancer in some cases. Whether or not that is true, it can’t hurt to eat well and try to keep myself in the best possible health, so that’s what I’m trying to do. Since I’m here all day, I need to have something to eat, so I bring it with me in a cooler.

I’m also drinking mass quantities of water. I didn’t keep a record yesterday, but I’m guessing I drank a gallon or so over the course of the day. In addition to the general health benefits, it’s particularly important while taking these drugs, many of which are filtered out of your bloodstream by your kidneys and excreted in urine. The more water you drink, the sooner you get this stuff out of your body. That’s how I look at it. In addition, one of the drugs (the P) is potentially nephrotoxic, meaning toxic to your kidneys. So anything I can do to keep them healthy and functioning well, I’m going to do it.

This is so important that they have us measure and write down our urine output over the course of the day. I don’t like to brag, but I have to say yesterday was pretty impressive. I was disappointed to learn that the practice doesn’t maintain official records. I was convinced that my name would go up on a plaque – “Jake Spencer, 2021, 2.5 liters”. I guess I will have to be immortalized for something else.

It’s about time for me to start my cisplatin infusion, which means I need to put my gloves on. So I’m going to sign off for the day. Thank you all for the continued prayers and good wishes, and excuse my wordiness and digressions. Talk to you next time.