You would think now is the time to read something motivational. Or spiritual. Or just positive thinking. Or all of the above. There is a section in the bookstore dedicated to the subject: Self Help. Every cancer patient has at least one…pile. They all come from good places: a thoughtful friend, cancer survivors, family. I’m sure there are lessons to be learned tucked in those pages, I just need to open one first. The titles conjure images of storms, worry cups, peace and tranquility. I just cannot go all day viewing the world through my GBM goggles, and then read about how to do it better the next day. I have found my own Self Help, but it reads like a list of Self Abuse: memoir of a 36 year old neurosurgeon facing terminal cancer (yes, I know), Roger Angell’s beautiful essay on memories of his wife, or listening to sentimental music. I have found this helps me peer into the abyss for short periods and then remove the GBM goggles for the rest of the day. I balance this heavy consumption with a form of escapism (Homeland or The Walking Dead). I may have read the Self Help book titled This Won’t Help. Hmmm, that sounds interesting. Why won’t this help? Or, You Will Still Have Cancer at the End of this Book. At least it is honest.
I am not above seeking help, whether it is from books, pharmacotherapy, or talk therapy. I’ve seen a psychologist twice, but at a certain point, I just felt like I was becoming a professional patient. Radiation was every weekday for 6 weeks. Add on a couple of DVT scans, lab draws, rad onc visits and Chicago trips, the thought of an extra appointment to talk about everything exceeded any potential benefit in my mind. Maybe I will consider counseling again down the road when I feel less ‘medicalized.’ I have not taken any specific psych medications, either. A little Xanax for an MRI may be nice, but I am not claustrophobic. Still, I may need general anesthesia while waiting for my serial MRI results. So far, exercise has enough beneficial effects on the chemicals in my brain. Maybe I’ll need to run to Chicago 2/9/16 for my first MRI post surgery / chemo / radiation. Google maps states that will take 2 days, 9 hours. That sounds like a challenge to get that under 2 days. And then there’s caffeine therapy. And a small amount of alcohol. And intimacy. And sleep. Mix that all together, and you too can get on the Staci Protocol (well, not with the key ingredient of Staci).
So I am going to review a few Self Help books just based on their cover. I appreciate the thoughtfulness of these books. Sometimes it is the thought that counts, or the personal note on the inside cover.
Figure: my pile of Self Help literature on Staci’s nightstand.
I’ll settle for a fist bump, not a reaching hand. I prefer to stay here for now. Let’s rock this!
Becky and the Worry Cup:
Connor had a ‘bucket’ in preschool that could either be filled or drained, depending on positive or negative interactions with others. Probably works the same.
Happiness in a Storm:
That storm analogy is a recurring theme.
When a Parent has Cancer: a Guide to Carrying for Your Children:
That may be very helpful at some point. Maybe biggest question with all of this. There is no right answer here. They know I have cancer, things have been different because I am around more. My appearance is different. I am dropping them off at school more (occasionally on time, see figure below). We were watching a recap of the 2014 ESPY’s, and Stuart Scott’s speech was replayed:
“I am not losing, I am still here, I am fighting. I am not losing. But I gotta amend it. When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.”
And I looked up, and Allison was looking across the room at me. She is old enough to get the connection. I winked, because I was not sure what else to say.
Connor is grossed out by my scar, finally able to touch my bald head (not that I was encouraging him or anything). He asked if he could ‘catch’ cancer. The answer is no, for the most part. Not this one, anyway. Some are caused by viruses. We even have a vaccine for certain subtypes of HPV which can cause cervical cancer. Connor also asked if I would ever be cancer free. Not exactly, but we have a plan. I did read that much, that kids need to know there is a plan.
And Queen Elizabeth, our most sensitive child, is the most daring with spiders, ducks, and amusement rides. She was also the most adventurous with my staples, greasy hair, and scar. She is just not grossed out. She just states that I have cancer like she was stating my eyes are hazel. Refreshing.
Mia. Who knows what that girl is thinking? She wore underwear for the first time Sunday. Maybe we can just let her remain in denial about the cancer.
Figure: No need for parenting books since we are up to date on appropriate techniques like Time Out. Left two pictures, trying to keep our kids from leaving Time Out early. Middle right, I actually got Allison to school on time for her safety post. She was proud of me. Far right, Connor and Dad selfie as he touches the head. I used to worry about smiling too hard to show wrinkles around eyes. Now, I also need to make sure the lighting is right for my bald head.
Where Self Help books seemed to be unhelpful (granted, that is in their mostly unread state), other media have taken on special significance. Music seems to touch a nerve that was exposed during my craniotomy. It started with Trout Steak Revival, a CD that was handed to me by the proud dad of the singer / banjo player. Brighter Every Day became an anthem of sorts prior to surgery when I needed an uplift. After the diagnosis, but prior to surgery, we were at Katie’s house, and I found a copy of the Trout Steak CD I bought for her a month earlier. Sure, I needed to remove the plastic, but they loved it once we figured out how to use their ancient CD player. We played through the album, and decided it just needed to be Brighter Every Day. I have not asked for much in this whole process because I am literally worried about the generosity that would follow. I asked Rick McNamara for a couple CDs for family, and I ended up with over 10.
Figure: Trout Steak CDs from McNamara. Add this to the list of Thank You cards I have not written. Kate or Rick, thank you. There, done. If they don’t read this, well, I tried. Only 500 or so to go.
But not all of the music that seems ‘meaningful’ is of this quality. Embarrassingly enough, I bought the Mariah Carey song “Don’t Forget About Us” sometime during radiation because I wanted to keep playing it until I did not get emotional. Until I was numb. Or Hamilton, an American Musical, seemed to be talking directly to me. He was a orphan, found himself in the Caribbean, and needed to compensate for this background by doing a little more. So I could relate to this tough background except that I am from Grand Haven, and it wasn’t that tough. My biggest disappointment in high school was failing to break the GHHS 100 yard butterfly record. But, he has a lot of great lines in the musical like, “My name is Alexander Hamilton, and there’s a million things I haven’t done, just you wait, just you wait.” That’s right, Alexander. Just you wait.
I have purchased — and been given — more regular (that is, not Self Help) books than I can read in two years without returning to work. I have never been an especially fast reader. A book is a commitment of several weeks, even months, at a rate of a few pages (or paragraphs) at a time before falling asleep. There are exceptions, but that takes compelling literary classics like Harry Potter or the Hunger Games to keep me awake for a full chapter. I barely passed the Rheumatology course as a second year medical student because I read Goblet of Fire the whole Sunday prior to the test (totally worth it). When this whole thing started, I was reading the Martian which is now a major motion picture from 20th Century Fox starring Matt Damon. This is now available on DVD (I am still trying to find a way to monetize this blog with subtle placement advertising, so bear with me as I sip my Starbucks coffee). It took a while after the surgery to start reading for the moment, for the pleasure, for the insight. For a few weeks, I was just paralyzed, trying to figure out which books were worth my time, and ended up reading nothing. But as I started to get back into the moment, watching the news, sports, and culture, I still could not figure out books. Do I go back through old favorites? At a rate of one book per 3 months, I felt I could not afford to make any bad choices. I leafed through previously read Kurt Vonnegut books. I made it part way through H is for Hawk which was an effective sleep aid. Nonetheless, I have focussed on buying books at a rate faster than I could possibly read. And offering to read any book (at least to page 100) that is given to me (unless it is about miracle cures or Self Help).
I have settled with multiple books, all progressing slowly: An Oliver Sacks memoir, Alexander Hamilton’s biography (to complement the musical), a couple of autographed Chris Crutcher young adult novels via Mary Jane Evink, and the all too close to home When Breath Becomes Air by Dr. Paul Kalanithi. This was the most difficult book to get through on my self abuse list. When Breath Becomes Air is memoir by a 36 year old Neurosurgeon who was diagnosed with metastatic lung cancer while finishing his fellowship, a rare and almost certainly terminal disease. When I explain myself carrying this book, the question that follows is always, “is that helpful?” Ahh, no, but sometimes I need exposure therapy, keep looking at the abyss until it has lost its impact, just like my Mariah Carey song I kept replaying. No two stories are the same, but there were a few moments in that book that felt like Deja Vu:
- He looked at his scan, I looked at mine. We both winced in recognition.
- He tried to calculate life expectancy off Kaplan Meier survival curves, and I traced them as well. Neither of us found an answer, and our oncologists refused to play along.
- Instead of progressing through Kubler Ross stages of emotion during periods of loss, we both first jumped to acceptance and depression, and had to work our way back to denial since you cannot live day to day otherwise.
- I married my high school sweetheart and went to Michigan State and Michigan; he married his medical school sweetheart Lucy at Yale after attending Stanford and Cambridge. MSU beat Stanford in the 2014 Rose Bowl. Michigan has the most football wins in NCAA history. Yale and Cambridge have a combined zero wins in the NCAA basketball tournament. Public vs. Private. Craig 1, Paul 0.
- He had a long time for denial with over a 30 lb of weight loss and unrelenting bone pain. I only had the opportunity to deny symptoms for 4 hours as they recurred in a cardiology office in front of a police officer.
- He could observe his body falling apart around him. My body is fine, it is just maintaining control of it that I worry about.
- Tumor markers: Lung cancer has EGFR, GBM has methylation of MGMT. He was positive, I was negative. Craig 1, Paul 1.
- I could relate to his difficulty in making career plans with such an unclear future. It is tough to decide what to do when you are not sure whether to make a 1, 5 or 10 year plan.
- He pointed out that there is cancer and there is Cancer with a capital C. Paul and I have Cancer. Let’s call it a tie.
- You can read his first essay here from 2014.
So, if you have some reading material that you think would be helpful, do not hesitate to send it on over. Please include an inscription on the inside cover. We may get to all those Self Help books yet, but I am not afraid of a little self abuse each day as well.
How do you prepare to return to work? There is probably a Self Help book on that. I went through a practice run 1/18/16, and had an actual day scheduled 1/25/16. I needed to find my badge: Check (although I look a bit different). Find my pager: Check (although the battery is dead, but maybe that’s fine). Stethoscope: check (although I left for work without it). Find my white coat. Now where is that? Laundered at the office, I think. I was already getting back involved in meetings and social outings to lessen the significance of My First Day Back. I even interviewed a few candidates in the last few weeks as I was circling back to work. What is your thought on covering colleagues with medical conditions? Team effort, right? Just curious. Many hands make light work. See you at the office.
Figure: Top left, my badge with hair. Top right, pretending to be a surgeon on my practice run 1/18/16. Shiny dome, but I could not work in fast food with that chest hair hanging out! Bottom, it is tough being on call 24/7 for a needy patient. I think I will let him sleep for now.