Healing Hurts

“Sin causes pain. Evil is causing someone else or yourself pain.” On the second day of philosophy class, Keith’s definition came as a personal affront. While his definition presents a valid viewpoint, I had just gotten sensation back after surgery, and nerve resurrection is really painful. I raised my hand. “Healing hurts,” I insisted. After some back and forth, Keith conceded the point (maybe it was the crazy opioid eyes), but that thought stuck with me. I set out to explore the relationship between pain and sin, and I found the most detailed explanations in the Bible and the writings of William Blake.

I was raised in a very religious home, so we have to start with scripture. In the Bible, human pain falls into two main categories: the consequence of sin, or a chastening to encourage righteousness.  Humans suffer pain because of sin; sinners should cultivate gratitude because divine chastisement leads to repentance and a reunion with God. The New Testament and the story of Jesus tend to minimize any pain because mortality is such a small part of the larger eternal whole.

Pain as a consequence of sin starts with Eve. In Genesis 3:16, as punishment for eating of the forbidden fruit and getting Adam to partake, God tells Eve that “in sorrow thou shalt bring forth children.” Eve, and all women after her, will have pain in childbirth due to this original sin of disobeying God and eating the forbidden fruit. Pain is a punitive action by God as a result of breaking his law.

The concept of pain as the consequence of sin is so deeply ingrained into the fabric of the biblical society that Job continually assumes that he has sinned and prays for forgiveness. “I have sinned; what shall I do unto thee, Oh thou preserver of men…. Why dost thou not pardon my transgression, and take away mine iniquity?” (Job 7:20-21). The fact that Job hasn’t sinned at all is beside the point: Job assumes that he has sinned, for he cannot conceive of another reason for his pain. This is made explicit in that same book when Job 15:20 states that “the wicked man travaileth with pain all his days.” Wickedness itself is the cause of pain, or as Ezekiel 30:16 so succinctly put it: “sin shall have great pain.”

While sin is the primary cause of pain, so too is it a method whereby God calls His children to repentance. In the book of Job 5:17-18, Job’s friend Eliphaz counsels him: “happy is the man whom God correcteth: therefore despise not thou the chastening of the Almighty: for he maketh sore, and bindeth up: he woundeth, and his hands make whole.” Eliphaz interprets Job’s current situation God’s benevolent reprobation leading to Job’s repentance. Job should be that happy man, chastened by God; for once an individual acknowledges God’s compassionate correction, God can heal all pain.

The story of Jesus seems at first glance to contradict the idea that pain is God’s punishment or God’s way to guide His children. Jesus was without sin, so His punishment cannot be a consequence of sin; Jesus’ punishment cannot be a way to bring about repentance because He has nothing of which to repent. The story of Jesus is a notable exception that must be excluded from this analysis because, while it is indisputable that Christ did suffer pain, both in Gethsemane and on the cross, His wasn’t human pain. Many interpretations of the Bible maintain that Christ’s painful death and glorious resurrection were redemptive; however, since Christ was God and the Son of God, His suffering is unique in its divinity. Jesus’ anguish cannot be generalized to our more mundane mortal pain. 

The only application to human pain in Jesus’ story comes from His victory over both pain and death. Since Jesus’ sacrifice redeemed mankind, the pain suffered in mortality does not signify in the scope of the eternities. The redemption that He made possible highlights the ephemeral nature of physicality. Above all things, pain is as temporary and transitory as this mortal life. Revelation 21:4 states that in the millennium “there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.” Both Christ’s sacrifice and the New Testament’s view of the Second Coming show how mortal pain does not matter, except and unless it is a method whereby men are brought back to God. 

Whenever I am in pain, I always have to get past my first impulse to think that I am being punished for my sins, or that God is chastening me. As a current cancer patient, I find the biblical explanation for pain and suffering particularly unsatisfying; we have laws to prevent fathers from using corporeal punishment to enforce obedience, but many people accept this biblical view of God. As a self-proclaimed evil apostate, I no longer believe in the great leveler of the afterlife: pain on this earth does not lead to some divine purpose or an eternal reward. Fortunately, philosophical writing about suffering has progressed beyond the Bible (and so have I!).

William Blake has echoes of biblical language and values throughout his work, but in his mythos, he goes beyond the biblical definitions of right and wrong and so too the biblical conceptions of pain as punishment or redemption: pain becomes multifaceted. In “the Marriage of Heaven and Hell,” he states that one of the proverbs of Hell is that “joys impregnate” and “sorrows bring forth” (ln 54). His words harken back to the biblical Eve’s punishment that in sorrow and pain she will bring forth children, but this proverb goes beyond to imply that sorrow can be a catalyst for creation. The biblical Eve’s pain and sorrow is a punishment; in Blake, sorrow or pain can be a genesis.

“The Marriage of Heaven and Hell” further states that “the roaring of lions, the howling of wolves, the raging of the stormy sea, and the destructive sword, are portions of eternity too great for the eye of man” (ln 52). In this way, anything that is “too much” for human understanding is just a portion of the vast infinity encroaching on everyday life. This follows the early Romantic idea of the sublime; awe, danger, and pain evoke the strongest emotions from those who experience it, and individuals should chase those transformative glimpses into eternity.

While Blake’s poems in “Songs of Innocence” largely maintain the Bible’s conception of pain, the “Songs of Experience” work to move beyond the biblical explanations of suffering. In the “Songs of Innocence,” the pain of the Chimney-Sweeper is transient and doesn’t matter because the goal of the chimney-sweeper is to be a good boy and go to heaven. The poem maintains that God is always there for the pain and tears, and that the “good” won’t suffer, just like in the Bible. However, in “Songs of Experience,” we get a more detailed explanation of pain as a catalyst for transformation. “Little Girl Lost” and “Little Girl Found” tells the story of seven-year-old Lyca who wanders away from her parents. She has no concern for her disorientation; her only worry is for her parent’s reaction: “How can Lyca sleep / If her mother weep? / ‘If her heart does ache, / Then let Lyca wake; / If my mother sleep, / Lyca shall not weep”. She then beds down, and the animals all watch over her. Her ignorance and sweetness protect her, and the wild animals care for her. Even in a potentially painful situation, Lyca can avoid suffering.

Her parents, meanwhile, spend a week in agony, worrying over their child and trying to find her.  “Tired and woe-begone, / Hoarse with making moan / Rising from unrest, / The trembling woman pressed / With feet of weary woe; / She could no further go. / In his arms he bore / Her, armed with sorrow sore”. The parents encounter a lion at when they are at their weakest and most vulnerable. Their first instinct is escape, but they cannot physically do so because they are too exhausted. The parents are literally brought low when they are borne to the ground by the lion. Instead of savaging the humans, the lion is transformed into a “spirit armed in gold” who leads the parents to their safe sleeping daughter.

Nature is initially frightening and unpleasant, and the parents suffer while looking for their daughter. In contrast, Lyca is full of wonder for the birds’ song and the warm day, and she is cared for and safe. Lyca’s youth and innocence allows her to effortlessly see the good around her and nature responds by protecting her. Her parents, however, must be in physical pain before they can see the lion’s transfiguration. This experience informs the remainder of the parents’ lives, and they can thereafter live free of the fear of the wilderness. Without the physical hardship, Lyca’s parents would not have either waited for or been able to experience the transformative experience that freed them from fear of the natural world.  

Blake’s “Little Boy Lost” shows pain as the consequence of sin, but instead of a natural and just consequence of sin, as the Bible would have it, pain as a punishment for sin is regarded as unnecessarily cruel. First, the sin is a childishly innocent observation about the love of others versus the love of self. For the child, love of self is concrete, and love of others is more abstract. For this imagined heresy, the priest takes the child by the hair to be publicly burned. The poem condemns the priestly zeal and questions the civilization that allows such punishments.

The weeping child could not be heard,
   The weeping parents wept in vain:
They stripped him to his little shirt,
   And bound him in an iron chain,

And burned him in a holy place
   Where many had been burned before;
The weeping parents wept in vain.
   Are such things done on Albion’s shore?

Pain, in the poem, is not a divine consequence of sin; pain is inflicted by an overenthusiastic intermediary, and the poem condemns the punisher, not the punished.

Most importantly, perhaps, is that no one hears the weeping parents or the weeping child. There is no God chastising them for their sins; there is only the human priest causing harm. Further, there is no greater purpose to pain; pain just exists. The line “the weeping parents wept in vain” is repeated twice: once to underscore the absence of sympathy in the priest and again to emphasize the absence of a higher power.

Blake’s acknowledgement of the futility of pain reflects the societal move away from religion and God as the final arbiter of right and wrong; Blake gives that power instead to individuals: either personally or in the collective form of the state. There is no appeal to the divine and no surprise for God’s absence. Blake acknowledges that pain is an unavoidable condition of mortality, both for the boy at the hands of unscrupulous ecclesiastical leader, and the boy’s parents, helpless against the power of religion. 


I embrace Blake’s view of pain, both the meaninglessness and the transformative. Ultimately, I create the meaning that I want from the pain I experience (and the selections that I read). I see pain as an unavoidable human condition in Blake because pain is unavoidable for me right now. I had to go through chemo/surgery/radiation, and treatment HURTS. This isn’t divine retribution or an atonement for my sins. I see that in Blake, pain can be a transformative experience, because if I reject the biblical notion of pain as a chastening by a loving (if non-existent) God, then my pain has no meaning outside what I create. In Blake’s time, the failures of the state as the overreach of the priests; today, failings in the health care system manifest as diseases in the population. “Disease-caused pain” is just a part of life in the early 21st century, just like “burning to death for heresy” existed in 18th century England. Pain is not evil or a manifestation of sin, as Keith’s definition would have it. Pain is a dispassionate, inescapable condition of life, and any deeper meaning can only be constructed by those who endure it.

Battleground vs. Fighter

In our Cancer Semantics episode, we talked about how neither I nor Mimi like the terms to identify ourselves as it relates to cancer. I don't feel like I'm able to fight, much less embody a proud warrior. I don't want to be a cancer patient, patient as the cancer works through my body and the doctors try to get rid of it. Many people find permanence and strength in being a survivor, but for me, that is the lowest bar of achievement: I am still existing. Thriver is a little better, but I am not always thriving. Often I am exhausted and sad and angry and broken and suffering. None of the existing terms resonates with me, so I don't call myself anything.

But not identifying yourself cuts you off in some ways from both the cancer community and a huge part of your life and your self. I am indelibly changed by what I've been through. I wear the marks on my skin and inside my poor battered soul. I carry this experience with me, and see everything with new eyes. I mourn the loss of my past self as I struggle to know my new self. 

Then on Twitter, I saw Helen Sparkles identify not as a fighter, but as the battleground. And the more I thought about it, the more I liked it. My "fight" with cancer has really been marked by passivity. I don't administer my chemo: I sit and accept while the chemo runs through me. I don't cut out my tumor: I lay unconscious as my breast surgeon pares the diseased tissue away. I don't radiate: I keep still while the radiation machine rotates slowly around me. Cancer side effects slow me down (fatigue) or keep me immobile (activity restrictions). All this to say that I didn't see a lot of active "fighting" in my cancer treatment.

But I do identify with the passivity of the battleground. I cannot fight for or against, but I am there for every shot fired. I feel every trench dug, every bleeding soldier. There is no escaping for the battlefield: there is watching and waiting and hoping. There is no volition for the battlefield: even if I wanted to pick up a musket, I don't know how I'd hold it. So I exist, knowing that this war is necessary, that I didn't cause this, I couldn't prevent it. I wait for the fighting to stop.

The best thing a battleground can become is a sacred space. The revolutionary battlefield at Concord, Massachusetts is an expansive park, where people can learn about the past, see the beauty of the river, and imagine a better future. We better ourselves when we recognize the baptism of battle. We grow when we move beyond "cause" and "affect" and build something better out of experiences. We advance when we can learn compassion and humility and love from the unavoidable life-tax of some terrible. The places that see horror carry that memory, but the best ones carry the remembrance of both what was lost and why we fought. The best ones are sacred, peaceful spaces that teach and heal.

I am the battleground.

How to Talk to Your Oncologist

  • Insist on answers to your questions
  • Know your own motivations for asking these questions--ie what do you really want to know and why?
  • You can reframe ways of getting help
  • Tell your team how you want to receive information
  • Share your preferences for receiving bad news
  • It’s ok to change your mind
  • Ask: “Under what circumstances will I see my oncologist?”
  • Ask: “What am I not asking you?”
  • Distill your questions.
  • What do you really need from your doctor?
  • If your doctor can’t help you, ask her who you CAN talk to about it
  • Decide if you want big picture/details/timeframe/bad news, etc.
  • It’s ok to ask again
  • Medical team can be your friends
  • Be selfish--s/he works for YOU
  • State: “It’s hard for me to speak up. Give me a minute.”
  • Take someone to your appointment with you
  • Have a pre-meeting with your appointment friend
  • Bring an asshole (on your side… if you are timid, bring your pushy friend/sister)
  • Write down your questions beforehand
  • Email your questions to the doctor if you can
  • Prioritize your questions
  • Try power poses before the appointment
  • Unsettle your MD
  • Show your personality
  • Be a leader
  • You are in charge, like it or not

What I wish I'd Known Before Radiation Therapy

You are Going to Get a Tattoo
The goal of TARGETED radiation is to get as much of your cancer site as possible and as LITTLE of the rest of you. There is a lot of geometry involved looking for the best angles. They scan your body so they know where everything is, especially your heart and lungs. You REALLY don't want to irradiate your heart. They measure everything down to the millimeter and they tattoo you so that you are in the EXACT SAME position with every treatment. After they get you into the perfect position, they tattoo you with six tiny dots so that you are precisely lined up every time. The tattoos are tiny, like little blue freckles. Since I did my “dress rehearsal” right after my last inflation, it was hard to get into position. My tattoos for the vertical line up aren’t in a straight line in relation to my body, so now every treatment, I’m a little crooked on the table. In that “dress rehearsal” appointment, get as comfortable as possible. Wiggle around a little bit and try to find a good position; you will be lying that way for a month or two.

It's Going to be Uncomfortable
Part of the "down to the millimeter" precision that we love about radiation therapy means that your bed is hard. There is no room for a small pad or a pillow when you need to have your body in the same position every day. So you lay on a hard bench with a hard spot to rest your head and hard brackets to rest your arms (like you are starting the YMCA dance, but you are lazy about it). This is physically uncomfortable, and you have to hold still. The radiation therapists are super efficient, and usually you are in and out of that bed in less than 10 minutes. The radiation itself is maybe 1 or 2 minutes. The rest of that time is getting you perfectly aligned and the machine moving around you to get into different positions.

General discomfort has really marked my time in radiation. I try to keep this in appropriate perspective: “cancer has been inconvenient and uncomfortable for me.” Yeah, that sounds like the best possible thing for cancer to be.

Having a Doctor Appointment Every Day is Exhausting
The point of radiation is that radiation damages cells. The hope is that all your healthy cells recover and all your cancer cells are too damaged and die. And it works! In general, radiation makes recurrence 70% LESS likely. That is huge. In the more primitive days of medicine, they did large doses, and that turned out poorly. Doctors discovered that you get the same cancer-fighting benefit by spreading out your radiation into tiny doses every day. That is good because no radiation poisoning, but getting to and from the hospital every day is time consuming. I am very lucky that I live a 15 minute walk from the hospital, and I STILL think it’s a huge pain in the ass.

You are Going to Have to Hold your Breath (DIBH)
Your rad onc (radiation oncologist, or radonk-a-donk as I call her… she… she doesn’t like that name) does everything she can to avoid your organs during radiation. For radiation of your torso, the worst thing to do is to radiate your internal organs. That is why they have all the scanning: to figure out where you internal organs are, your specific configuration. Usually, your heart is immediately behind your breastbone. When you breathe in, your lungs expand and your heart moves back towards your spine. This gets your heart out of the radiation field during your treatment, and is called Deep Inspiration Breath Holding (DIBH). This is a little bit of a misnomer because it’s not necessarily a deep breath; it’s a deep enough breath to get your heart out of the way, and because of the aforementioned precision, you are supposed to breathe that deeply, that amount, every time.

Practically, this means that you will lay on the slab, and the radiation therapist will say “breathe in.” You inhale into your chest (not your stomach) and hold. If you do it right, the techs will turn on the radiation for 5-30 seconds, then say, “breathe out.” If you do it wrong, they will tell you to breathe out and take a shallower (or deeper) breath next time. Some places have a visual indicator for the patient to show when you reach your “right” breath, but most places, you have the radiation therapists coach you.

This is easier when your body is the same every day. However, through radiation and because of the side effects, your body will NOT feel the same every day. Some days you are “tighter” or “looser.” So during my “dress rehearsal,” the right inhalation was literally the deepest breath I could take. Some days, it is still the deepest breath I can take, but most days it’s an ever-changing percentage of my new lung capacity. It can get tiresome to be re-coached on a regular basis, but this is for your heart. <3<3<3

The Side Effects can get Weird
You hear about the normal stuff from your doctor: fatigue and skin changes. The fatigue is minor, especially compared to chemo; it is cumulative, so it gets worse towards the end of your treatment. I honestly think that most of my fatigue comes from just going to the doctor every day.

The skin changes are also usually minor, dryness and redness. I use aquaphor during the day (doctor’s recommendation) and coconut oil at night.  In some ways, I think of this as my “prayer cream” because the peer-reviewed, scientifically-backed jury is still out on the overall effectiveness of topical creams for radiation treatments. Your skin WILL get dry, and it is good to moisturize, so I am constantly rubbing myself down with something

Always keep your doctor informed, and be very gentle with your poor radiation site: gentle cleansers and loose fitting clothing. You remember the ugly bras from the mastectomy? Keep them, because they will come in handy. You don’t want to ruin your good bras with all those oils and gels.

The Doctors don't Usually Tell you about the Weirder Side Effects.
Tightness: I had radiation post mastectomy and post tissue expander inflation. I was just getting my range of motion back when I started radiation. Radiation treatment made my muscles tight and sore, like after a work out. So I am going to physical therapy to get my range of motion back while every radiation treatment works against me. It also makes the "holding your breath" more difficult. Every day, the same amount of breath feels different, so I can't really tell how deep a breath I am going to have to take until I do it wrong. I do stretching throughout the day to combat this tightness. And if I feel a little like a weirdo for standing against the wall will my left hand straight up while in the office, it’s a small price to pay for mobility.

Fullness: Women describe nursing and their milk coming in as a fullness or heaviness. You get the same sensation with the radiation. Your tissues become inflamed (your body fixing the damage to the healthy cells) and you get a little fuller or swollen. It feels a little bit like an expansion with the tissue expander. Wear loose clothing, and sometimes a Tylenol or ibuprofen works wonders (or use some of the leftover medical marijuana from chemo).

Zings: This is a more rare side effect, and maybe only for those of us lucky enough to keep feeling in the skin of the breast (YAY FEELING!!). During treatment and throughout the day following treatment, I get a sensation on the site of the treatment. Sometimes it feels a little like the tingling of neuropathy. Most of the time, it feels like a strong static electric shock. Sometimes it feels like a dog shock collar or briefly touching an electric horse fence. It's not painful, exactly—just somewhat unsettling and very uncomfortable.

To Do
· Exercise (even if it's just taking the stairs or walking).

· Stretch. If your doctor didn’t talk about physical therapy, ask her. Even if you DON”T do physical therapy during treatment, look online for good exercises, then ask your doctor about it.

· Caffeine or plan your day around your tired times.

· Accept help.

· Use the off days to recover. Rest, stretch, and eat healthy food.

· This too shall pass. Dealing with the discomfort and side effects is way easier when I remember this is a short amount of time. Radiation has short appointments and (generally) usually lasts only weeks. I can do this for five weeks.

· Don't struggle (hahahaha... but seriously, the more you can keep still, the better your treatment can target your cancer and the quicker you are in and out).

Dear Friends of First Descents

I've said on the podcast that the best cancer perk is cancer camp. Last week, I went on my FD1 with First Descents, an organization that provides adventure trips to young cancer survivors. At the end of the trip, they give you a card for you to write a note to "The Friends of First Descents," the people that donate money so that FD can provide these trips at no cost to the cancer survivors. I put down a few sentences, all there was room for. If I would have had more space, here's what I wanted to say:

_______________________

Dear Friends of First Descents,

Thank you for this trip. Before I went, I was excited for the surfing and the delicious food, hanging on the beach and playing in the ocean. After going, I have a few surprising things to add to that list.

Community: The trip gave me access to a dozen or more IRL people who have been through something similar. By just physically bringing people together, this trip connected me to others with a similar diagnosis who've been through my same struggles. The best side effect of cancer is connecting with the community, full of people who pay it forward and give their time and energy to helping others through the cancer journey. Cancer is a team sport, and it can be hard to find your teammates.

Tools: First Descents provided an opportunity to bring out my best self, starting with the simple physical of clean eating, enough sleep, and exercise. The FD trip also sprinkles in opportunities for gratitude, service, mindfulness, and fun. I also got to talk to others about the tools they've used (successfully and otherwise).

Identity: The hardest thing for me through all of this is what cancer did and does to my identity. In a lot of ways, cancer destroyed the old me, and I'm left to rebuild myself with little direction. FD gave me the opportunity to see what I can still do, what fun things my physical self makes possible. My 2.0 is not ONLY a cancer patient/survivor: my 2.0 might be a surfer or a climber. My 2.0 is whatever I want it to be, whatever I make it.

So thank you for doing something tangible to help us here in cancer recovery. I had amazing food and a life-changing experience.

Best,

Trois-D

Can we call ourselves carcinopaths?

I've asked several women IRL what they call themselves after or during cancer treatment, and a few things came up. You are a patient, waitingwaitingwaiting in hospital rooms, but that's not how I want to identify myself, as this passive patient THING that exists only within the walls of the hospital and in relation to my doctors/hospital. I am NOT patient about cancer. I am active and involved and doing this MY WAY, and I'm still me goddamit!

You belong to this new cancer tribe, but everyone who's in it was an unwilling conscription. It took almost a year for me to feel like I was a part of the tribe. There was me, unfortunately going through some temporary cancer and cancer treatment and cancer setbacks, then WAAAAAAY over there are some cancer survivors. It doesn't help that all of the language around identity and cancer seems to be either a rose-colored HeroFighterInspiration, or a besieged PatientSuffererSurvivor. I don't feel like either enough to make it my identity.

The Cancer Community is also this loose coalition of as many personalities are in any group. So sometimes you find your people, and sometimes you find weirdos. After one of my first IRL cancer events, I was feeling bad because there was this guy there I fucking hated. He dominated every conversation with his cancer story and how he had it so much worse than anyone else and he had a book or website or gofundme that he kept pushing and I didn't even want to BE there and then there's this fucking asshole (who I'm sure was going through a lot, but I didn't have it in me to deal sympathetically with anyone else when IJUSTGOTDIAGNOSEDWITHCANCER!). Anyway, my sister on the walk home said "Just because he has cancer doesn't mean he's not also an asshole. It's ok not to like him."

The point is, what we call ourselves is tied up in this community that none of us want to be in. The women I talked to, no one WANTS to really call themselves anything. They don't want to lose themselves in the larger and overwhelming identity of a cancer ANYTHING. Survivor means a lot of things to a lot of people, and trauma has already unmoored you from your identity. That's why I want a new word, one that doesn't have the weight of expectation and history. I want a word that means "I had cancer. That is all." I think words shape how we view the world and ourselves, and I want to create a better word for a world that reflects how I see cancer. I suggest:

Carcinopath: n. a person who's been through cancer. That is all. Gr: cancer+feeling. "I don't like feeling all the cancer feelings, but when you are a carcinopath, there is no way but through emotionally." See carcinescent.

Carcinage: n. a period of time in your life that was affected by cancer, a cancer journey, usually with a negative connotation due to unrelated sound-alike "carnage". Gr: the act, result or state of cancer. "Really? You had a positive carcinage? It was CANCER, right?" 

Carcinal: adj. Gr: relating to cancer. "I love carcinal yoga; it's easier when the teacher knows how to modify for me."

Carcinee: n. one who receives the action of cancer. "Hospitals are full of carcinees: I swear cancer is getting more common."

Carcinescenct, carcinescence: one who is in the process of cancer, or a period in your life characterized by cancer. "I've never liked the label survivor, but I guess I am still in my carcinescence." See carcinage and carcinopath.

How P!nk Helped Normalize My Baldness

I got a pixie haircut the week before my second chemo. I always wanted one, and my doctor said “you are not going to NOT lose your hair,” which is a weird prevarication, but whatever. Some people hang on to their hair as long as they can. They pretend their hair isn’t thinning, that they aren’t losing clumps. I hadn’t even started losing it yet really, but my scalp was tender. It’s going to happen. It usually starts after the second chemo. The biggest deciding factor for me was my mom. She went through chemo, and she held on to her hair. Then one day at dinner she BROKE DOWN in tears and said “I am TIRED of EATING MY HAIR!” So we went in the downstairs bathroom, and Les shaved mom’s head while she cried.

I don’t want to do that. I don’t want my experience to be like mom’s. Most things, she showed me how to handle, but this…. this, I did the opposite. So I got a pixie haircut for a week, then I shaved my head. Well, Kent shaved my head while playing the Game of Thrones Shame app (shame! Shame! SHAME!). I did rock a mohawk in the interrim so I could look like P!nk.

I’ve always fucking loved P!nk. She was my first and best “angry girl music.” I was a junior in high school and I loved her hair and her style and her voice and her strength. She has always been my power music. “Can’t Take Me Home” was the first album I ever bought. She is beautiful and amazing and CUT. I am seriously in love with P!nk and her music has been a part of my life and getting me through hard times. I’m usually not a music person, like I don’t need it or listen to it every day or anything… but P!nk is my exception. I like other music and musicians in a vague way, but I fucking love P!nk. She speaks to my soul. My soul is surprisingly poppy!

So when I had to cut my hair, who did I use as an example? I gave the hair dresser a picture of one of P!nk’s pixie cuts. Life cannot be bad if I look like P!nk. I should have also dyed it, but that sounded like too much work, and P!nk herself says that pinkness is a state of mind rather than a color.

That’s the best part of celebrity culture. P!nk is someone I can point to and channel and say “P!nk would do this” or “P!nk wouldn’t do this.” And I can tell you right now that P!nk wouldn’t give a fuck if she had a shaved head. Plus, got to look like a girl you wouldn’t wanna mess with, heavy makeup and everything. 

This is just a way for to reconceptualize my current life, and it comes with a soundtrack! According to P!nk, I’m not dead just floating. According to P!nk, I’m not scared just changing. Thank you, P!nk, for giving me a way to reframe my current experiences. And for being such a hot, powerful bad ass. Also, you wanna hang out sometime?

Psychological Changes

Here's the thing. We are all changing, all the time, everyday. Each day you wake up a little different than who you were yesterday. That is normal. That is growth. That is "your experiences shape you". People who stay the same are boring.... and non existent. We all evolve a little bit, and that's great. We are elastic, dynamic, interactive, ALIVE.

With a traumatic event, like a cancer diagnosis and everything that comes along with it, we change A LOT. Time is there so everything doesn't happen all at once, but our traumas... they  happen all at once. All the sudden, instead of the invisible incremental changes you expect, you are a whole new person all at once. And it's weirder than that because you are simultaneously a whole new person and the same person you've always been. It's like you get the distance of years to see your current self/situation/life. You are you and you are not-you.

So, how do you navigate this new space as you and not-you? You reach out. You get professional help. You act with love and compassion and gratitude and joy as much as you can because THAT'S the world you want to live in, the world we are living in, the world we can create with our actions.  It might be super shitty right this second, but it won't always be. Tomorrow will bring more change, and that can be a wonderful thing.

What do I ask my doctor about chemotherapy?

Each chemo appointment with the medical oncologist feels the same: we talk about the last chemo, talk about what to expect for the next chemo, then she gives me mardi gras beads so I'll take off my shirt. Before I go, I make sure I know:

  • What are my medication marching orders?
  • What can I eat? What should I avoid?
  • What can I do? What should I avoid?
  • What are common side effects and when should I call the doctor?
  • When should I expect to start feeling better?

Each time, I remember that getting harsh chemicals injected straight into your veins ... it sounds pretty metal.

Small Victories in the Dark

It's important to recognize the small successes, especially when you are swimming in the awful. One of my awfulest awfuls was the ultrasound guided lymph node biopsy to stage my cancer. The breast center for this biopsy was the same one where I had had my MRI biopsy to find the cancer, so there were some bad memories associated with this place. Luckily, my sister Red had just flown out, so I wasn’t alone and crying in the waiting room like last time. The nurse didn’t want my sister to be there, and when I asked for my sister to stay, the nurse said no. When I asked again, she said, “they NEVER let anyone stay. I will ask, but they will say no. I will ask, but I told them you would go quietly.”

“That is right. I will go quietly,” Red said.

“She won’t cry. Or scream,” I add helpfully.

“Or beg. Or go limp,” Red says.

“Cuz dead weight is so much harder to move!” Cue giggling and reenactment of trying to move a limp body.

The doctor comes in. Red is in the corner on a window ledge. Red is sitting against the wall. Red is behind some carts. Red is pretending she is a plant. Maybe they won’t notice her. The doctor turns to her. This is luckily after we had a few minutes of giggling and charming her and generally endearing ourselves. See how adorably positively calm happy we are? Red is 100% definitely a plant.

The doctor turns to Red, not fooled by the plant ruse. The doctor is clever. “Are you going to throw up?” She asks.

“Nope!” Red says confidently.

“Are you a fainter?”

Red laughs, brings herself under control quickly. This is not a laughing place. “No. Absolutely not.”

The doctor gives her a hard stare. “You REALLY want to be here?”

Red gestures to me, lying supine, exposed like a paint prepped French girl. “She wants me here.”

The doctor looks at me as I nod and offer a big hopeful smile. See how strong and brave I am being? She sighs, resigned. “If you faint, we won’t help you. Try to fall on the ledge sideways instead of down on the floor.”

“Absolutely!”

Red stayed, no one fainted, and there was WAY more giggling than expected through lymph node agitation, three passes with the needle is a LOT of agitation. The best part is that AFTER the ultrasound biopsy, the nurse was cleaning off and putting away the ultrasound wand, covering it with a long thin plastic sheath to wait the next stabbing. Since I am an 11 year old boy, I giggle at this, and make a comment on where you’d find these sheaths. The nurse, bless her heart, is a consummate professional and has no idea what I’m talking about and the doctor turns to her and says “Horse condoms. She’s saying that these look like horse condoms.” She rolls her eyes at me. “I grew up on a farm too,” she says.

And now I have a goal: what ridiculous things can I do with my medical team for my own amusement. It’s not about staying positive: it’s about seeing what cancer can’t take away, like love and laughter and sisters. And horse condoms.

Cancer Conspiracies

"People are stupid. They will believe a lie because they want to believe it's true, or because they are afraid it might be true." --Terry Goodkind, Wizards First Rule

When I got diagnosed, everyone wanted to know (or tell me) the cause of my cancer. Everyone but the doctors who were treating me. The research into cancer causes is still in its infancy, and it's a HUGE job, both because there are thousands of different types of cancer and what looks like dozens of contributing causes. Does genetics cause cancer? Sometimes the answer is DEFINITELY YES, and sometimes the answer is maybe. Did deodorant or my phone or my bra cause my breast cancer? Probably not, but the jury is still out on all the contributing factors, which can make it difficult to say for CERTAIN that we know what DOESN'T cause cancer, and these uncertainties provide ample room for all sorts of stories about cancer causes. My doctors were all much more concerned with dealing with treating my cancer NOW than following me down the rabbit whole of what gave me cancer in the first place.

But I can't help but think how to prevent cancer in my future, so I have to look at causes. That's a very human need: the desire for answers when there is no answer available. We will CREATE an answer that feels true, even when we know we DON"T know. We want someone to blame, and we want a clear path forward. That level of clarity isn't available for much of life's questions, so it's no surprise that we don't have all the answers on something as complex as cancer. Do hospitals and doctors know everything? Of course not, and the vast majority of doctors will talk about the distressing gaps in knowledge. You as a patient feel this ambiguity viscerally because your life depends on the doctors knowing things, so the reality that they don't know can be terrifying.

Conspiracies prey on our insecurities, our emotions, our fascination with secrets. Humans are curious creatures. A part of me is glad that people are looking for explanations and demanding answers, even when they end up in conspiracy-land: if we are looking for more things, we will find more things. A hundred years ago, chemo sounded crazy. Cancer treatments have been crazy through the years, and we are constantly improving our knowledge of causes and treatments by wading through all the possibilities. Even the truly batshit possibilities.

The other part of me, the ex-Mormon part of me, is very skeptical of anyone who promotes conspiracy theories. Often the "one simple trick" to cure cancer is a way to make money, while the slow slog of science is not very exciting because that knowledge comes in tiny trickles and with a lot of fine print. I found a great article from 1911 on Cancer, Credulity, and Quackery

"The moral of all the familiarity with cancer and all the quackery associated with the exploitation of those sufferers who would fain find an alternative to the knife is simply this. A secret remedy for cancer is possessed by no man nor woman. If it existed, its success would speedily cause all human endeavour to concentrate upon its divulgence, and no quack could retain it for himself alone. That form of treatment which is public property namely, removal by surgery-has nothing to fear, but, on the contrary, much to gain by comparison with its only competitor, removal by caustics."

I would say that, like with anything, we need to be very cautious of believing what we hope or fear to be true. Do your own research, give more credence to facts than belief, and hold on to hope for a better future.

What to say to someone with cancer

Before we launched the podcast, we sent the beta version out to our Advisory Panel. We included “Dumb Things People Say,” and I had my sister tell me later she had been worried that she would be discussed for all of the dumb things she's said to me. This is the sister who flew out the day I got diagnosed, the sister who sat with me through the trauma and horror of those first days, the sister who slept in my bed and rubbed my back while I cried… this sister had worried she said dumb things. “We all say dumb things,” she explained, “and I know I’ve said dumb things to you about cancer.”  I couldn't even come up with one thing she had said that I could twist into being a "dumb thing."

Then I had my cancer social worker listen to the podcast, wherein she sent me an apology email taking responsibility for something she hadn’t even done! She invented a memory where she said something dumb, and I was upset about it.  None of this was true, at all.

So, here’s the thing. My sister is right. We all say dumb things. I still say dumb things to cancer patients and I am one of them. Us. It’s because a) there is nothing you can say to make it better and b) you don’t know what to say because c) none of us have done this before. PEOPLE WILL SAY DUMB THINGS TO YOU. It is inevitable. Some of them will say dumb things because they are trying to connect and don’t know how. Some people will say dumb things because they are too wrapped up in their own shit that they can’t even see anything else, much less help you. And some tiny percentage of people will say dumb things because they are terrible people and shouldn’t be allowed to converse until they understand empathy. (But this “terrible people” group is really very tiny.)  

What to do as a patient

  • Have phrases you can say to end the conversation:
    • "I can't talk about that right now."
    • “I’ll think about that.”
    • “That’s an interesting opinion, but I prefer to do it this way.”
    • “I’m actually not looking for advice right now”
    • “I’m not going to do that.”
  • Weaponnized crying
  • Double down on whatever silly thing they say: "You are right. I am going through chemo but I'm sure I can't imagine how much your broken arm hurts."
  • Help people say fewer dumb things to you by coaching them (if you are able)

Be gracious. If you can’t be gracious, use it as a teaching moment. If you can’t be gracious nor their teacher, be entertained by it. Seriously, keep a book. It’s pretty hilarious. And it will help YOU next time you are the not-patient. 

What to do as a caregiver/friend

Tell someone you don’t know what to say, or you’re sure you’ll say the wrong thing. Tell them you just want to make it better but you can’t, so you are just trying to help. If you can’t be this open, be extra conscious of what you say. If you can't censor your words, be silent. And if you cannot be silent, maybe send a card instead of visiting.

Cancer Branding

I go back and forth on what I think of social media. On the one hand, it's a great way to keep in touch with your network. I had a private facebook group that was the perfect level of communication from my end (I posted whenever I wanted) and the perfect amount of engagement (comments I could read whenever I needed a boost). On the other hand, I think social media can be truly terrible for mental health, and it can get worse when you are vulnerable from an illness. Each of us has insecurities about ourselves: our physical appearance, our actions. "I weigh too much." "I'm not pretty enough." "I'm not popular enough." "I'm not successful enough in my career, in my relationships, in my life."

You get a few people that post everything all the time, an exhaustive documentary miniseries about their meals, their thoughts, their day-to-day. For everyone else, you get a small, carefully-framed peek into their actual life. Social media is a culled snapshot. Everyone KNOWS this, right? If you think about it, you know that facebook is only a fraction of actual life, don't you? When we are vulnerable, social media reaffirms our worst insecurities, showing that everyone else really is having an amazing life, and your life sucks: you have cancer, after all.

If you are open about this experience on social media, you will get the spectrum of responses.

  • I love you and want to help.
  • You look great! I can't believe YOU have cancer.
  • You look terrible! I can't believe you have CANCER.
  • Why do you only post happy things? People will think cancer is easy.
  • Why do you post so many hard things? This is pretty depressing.
  • Your cancer isn't as hard as what I've been through. Let me tell you what real problems look like.
  • If you'd just (go vegan/eat better/exercise/take this supplement), you wouldn't have cancer.

You'll get condolences, offers of help, advice. This is nothing you don't get in real life, but on social media, it is multiplied... all the time... with hundreds of people. Social media is a tool. Use it as a tool, and gear it towards creating and maintaining the IRL relationships with wonderful people. Your facebook shares won't get you nausea medication when you wake up spinning, but it can be a good way to crowdsource company for an appointment. Your instagram likes won't keep you company while you get infused with chemo, but posting silly pictures can be a nice distraction. Remember you are not your facebook page. You are not your instagram likes. You don't live in the internet. You live in your body. You live in your IRL relationships with the tangible people who are helping you through this. 

SOCIAL MEDIA IS NOT REAL LIFE. I think we could all use the occasional reminder.

So You Have Cancer: Discovery

What do you do when you find out you have cancer? After talking to Mimi, we have a pretty solid list:

  • Tell who you want
  • Delegate who you can
  • Don't make decisions you don't have to make
  • People are going to have crazy reactions
  • Be kind to yourself--you are in shock
  • Let people help you
  • Get over the blame game--it's misdirected anger and a waste of energy
  • Find mindless happiness or distraction--might I suggest 12 hours of silly cats on YouTube?

In retrospect, my own "D(iagnosis) day" was so surreal. I got the call on August 16 at 8:15am. I was getting ready for work, excited to get in early. It was my six month anniversary at this position, and I had a lot to do. The nurse practitioner called to tell me that the breast mass was cancerous and I would absolutely need surgery, probably chemo, probably radiation. I didn’t really hear anything after cancer. Cancer? I didn’t process. I couldn’t process. After she told me, she asked if anyone was with me. I said no. I’m all alone.

We hung up. I couldn’t focus. I couldn’t stop crying. I didn’t know what to do. It’s 8:15 in Boston which means 6:15 in Utah. I am going to ruin everyone’s day with the news. I couldn’t stomach waking anyone up AND ruining their day. So I won’t call family yet. My mind keeps on slipping away from how to tell people. I can’t stop crying.

I can’t go into work, which means that I have to tell them I can’t work. I’ve never called in to this job. Can I text them? Probably not. That doesn’t seem professional. I can send an email. Maybe this is a face to face talk? What do I tell them? I google “how to tell your boss you have cancer.” I get a lot of tell them in person, keep it professional, focus on the job, how this affects the job. My mind keeps on wandering away from the topic. I try to focus on that I have to tell work, how to tell work. I can’t focus. I can’t stop crying. I google, “how to stop crying.”

It’s 9:00 now. I write an email to work about cancer. I write a whole email. Bullet points. But I don’t really know anything. Not really. I know that I can’t work today. When can I work? I don’t know. I should do this in person. This seems like an in person conversation. Which brings me back that I have to stop crying. I have to stop crying long enough to walk to work and tell them in person. It’s 9:30 now. I focus on I have to tell work. I focus on I have to stop crying. I should call someone in Utah. I can’t. What do I say? I have to stop crying. That’s the first step.

I spend another 10 minutes trying to stop the tears. I don't have to look happy; I just have to stop the visible sobs. I put on shoes and make sure I have my keys. I get downstairs and realize I forgot my badge. And I need a tissue. I go back upstairs, get a tissue, walk back downstairs. Remember I forgot my badge. Go back up, get my phone, go back downstairs. Realize I still don't have my badge. Walk upstairs repeating "I cannot get into my building without a badge." Finally get my badge. Walk downstairs, not crying because I am too annoyed at myself for forgetting my badge. Eight minute walk to work, don’t make eye contact, one foot in front of the other. Go into the office, walk into my office, I don’t see anyone, get my laptop. Walk upstairs to talk to my boss without having to see anyone.

As I approach her office, I see my boss leave it, clearly in a hurry, her arms FULL of carpet and paint samples and rushing to a meeting. She sees me. Asks if I’m ok. I shake my head slowly, tell her I need to talk to her and the manager. Right now? she asks. I nod. We walk into the manager’s office, close the door. I sit. My boss is hovering anxiously.

"I say, you know how I’ve been going to a lot of doctors appointments lately? Turns out I have cancer." They are shocked, they are asking questions. I say, "I can’t talk about any of that. I can’t come into work today." My boss says "OF COURSE YOU CAN”T FUCKING COME INTO WORK RIGHT NOW! WHY ARE YOU HERE?"

I tell her I have appointments tomorrow. I don’t know anything, if/how it will affect work, that I will do my best to minimize the effect on the lab. I say, "When I said I could have this job for the rest of my life, this is NOT what I meant." They are horrified. I am amused. My boss says, "let me walk you home." I say that isn’t necessary. She insists. It’s probably a good thing she walked me home. I’m pretty clearly in shock. Probably. I don’t know, can’t focus.

I come home. Next step: tell the family. Who do I call? My mind keeps on slipping away. Most of my conversations go like this from my end:

"Hi. Uh, where are you at right now? What are you doing? Who’s with you? Are you in a place where you can talk for a couple minutes? Ok, so … so I’m going to ruin your day. I have breast cancer. Yes, like mom. I mean, hopefully not dying like mom. Maybe? I don’t actually know. Probably not. I should say definitely not, but I don’t actually know that. Maybe I should say it anyway for the positivity of it, right? Ok, it sounds like you are having a lot of emotions about this. You should… you should talk to someone about this. Not me. I can’t handle this. Call…. call someone else. Ok, I’m gonna go. Have a nice day. No, social niceties are inappropriate here, right? No social niceties. Call someone to help you through this. Ok. Bye."

No matter what, the diagnosis is going to be surreal. You are going to feel like your life got turned upside down, like you don't know who you are or what your future holds. This disconnect is reinforced by how weird you act and how weird everyone around you acts. Everything is just off while you deal with this new shape of the world around you. My dark humor and making everyone uncomfortable got me through. I'm sure everyone wishes I would have picked another coping mechanism.

Why I want a cancer podcast

Who am I to have a cancer podcast? I could run down my cancer qualifications, such as they are: stage III, mastectomy, chemo, radiation. The bottom line is that I am someone who has been through it. That is all.

When I got diagnosed with cancer, I wanted my mother DESPERATELY. I mean, everyone wants their chosen maternal figure when life goes to hell, and those who’ve suffered the death of a parent know the feeling of everything being worse because mom’s not there. I wanted mom for all those reasons, but I really wanted her for her ability to talk me through cancer. Mom was diagnosed with metastatic breast cancer in October of 1998, and she died two and a half months later on January 1, 1999. I wanted to sit down with mom, and not talk; I wanted to just listen, listen to her talk about how her treatment went, what she did/thought/felt. I mean, I was able to talk to people about cancer. Once someone finds out you are diagnosed, they will tell you ALL the people they know who had cancer (maybe even the same kind!) and they are more than happy to put you in touch. And that’s wonderful, that cancer has it’s very own de-centralized phone tree. But… I didn’t WANT to create new relationships. Sometimes (most of the time!) during diagnosis and treatment, I didn’t have the energy to maintain existing relationships, never mind creating new ones. I didn’t want to engage, but I still wanted information, I still wanted support from this new cancer community. What I wanted was Mom, sweet understanding Mom who would tickle my back while talking to her girlfriends about her own cancer journey: what she did, how she coped, what she knows now with the benefit of hindsight. Mom wouldn’t have expected me to do anything but listen. If I thought it would help. On my own schedule. Mom would have helped me think through all these new situations I never thought to have: dealing with the diagnosis, telling or not telling people, getting wigs, managing side effects. Mom was very practical: that which cannot be avoided must be embraced, and she would have held my hand as we figured out how to navigate this strange new landscape.

That’s what I want to be for someone else. I want to be your no-effort cancerfriend, ready with amusing anecdotes and understanding. I want to be the person who knows a little bit what you are going through, that provides some information on how to think about this experience . We are a community, this terrible club of people-who’ve-had-cancer, conscripted into this army we never would have willingly joined.

Note that:

  • I am not the spokesperson for everyone with cancer. My experiences and opinions are my own and not necessarily generalizable to the cancer community as a whole. 
  • I don't know how to talk about cancer without being explicit. Cancer is graphic, and I want to represent that candidly. Sometimes, swearing and laughing is how I get through. 
  • I have a dark sense of humor. I think sometimes LIFE has a dark sense of humor.

I want you to know that you are not alone, and not just because of me or Mimi. You have a depressingly high number of people who have been through something very similar to what you are now going through. People have faced what you are facing, people have made it through, and you can read their stories and learn from their experiences. You can see that there is a way through, even if you haven’t found yours yet. I am still searching out my own “way through” path, falling in crevices and getting soaked in streams. There is no “one way”; there is also no way around, no way but through. You can do this because you are doing this, right now. What does “dealing with cancer” look like, anyway? Whatever it is you’re doing is dealing with it. There is no set path, but there are ways to deal that make you (and others) happy, and there are ways to deal that make you (and others) miserable. I want to share the benefit of my hindsight.