3:52am. I’ve been awake for almost half an hour. The neighbor’s dog and my ruminating thoughts about the ongoing battles with work won’t let me get that last hour and a half of sleep before the alarm clock goes off. I almost let myself cry about it. This happened all last week … and the week before. Being denied REM cycles day after day pushes my more emotional state to the surface, and once again I find this insomnia accompanied by nausea and a headache.
Aa I lie here, pushing back the tears, I remember something: Orange Is the New Black just came out.
At least I will have a mindless distraction from my insomnia this week. Silver lining, right?
WARNING: VIEWER DISCRETION ADVISED
Even though radiation ended on Monday, I was told that my symptoms would continue to get worse for up to ten days following my last session. The area does look pretty nasty: sunburn, more sunburn, splitting skin in three separate spots, blistering in between my two “breasts,” dry patches, swelling, and bruising. In two more days, I have a follow-up appointment with Dr. Walsh (reconstructive surgeon); hopefully, she is more optimistic about how this looks than i currently am. (See below for a photo, but remember that i warned you!)
On Monday night, i got violently ill. I’ll spare you the details, but it involved 2+ days of high temperatures (100.5-102.9), bathroom issues, an inability to hold down and food or water,and infantile crying for extended periods of time. I assumed it was punishment for eating a veggie Whopper and fries from Burger King for dinner on Monday. (Okay, okay! I had a vanilla shake, too.) My roommates assumed it was a reaction to my final dose of radiation. We found out we were ALL wrong when Jenna came down with the exact same stomach bug 48 hours after i did. Clearly, i stopped taking my immunity vitamins a bit too prematurely; my body is NOT yet ready to handle all the germs and bacteria that life throws at us on a daily basis.
Recent illness aside, my body continues to provide me with more strength and energy each week, and for that i am incredibly grateful. I’m still not hiking mountains yet, but i think i will be ready once it starts cooling down in late August.
When Maya and i dated (um, the first time around, ‘cuz you know how lesbians roll), we used to point out and ridicule all the products and services that were affixed with some advertisement showing support for breast cancer research. It became a game to send each other picture messages of the most ridiculous items we saw each week. In hindsight, i can see how this could be perceived as insensitive. At the time, though, we were solely focused on cricizing overcommercialization and the industry’s propensity to hop on the latest marketing bandwagon.
As for the Susan G Komen’s Race for the Cure, i had additional criticisms. A former participant once told me that after you register to participate, there is all this pressure to raise a bunch of money – to the point, she said, where it’s not really about community bonds or personal triumphs anymore. I do *not* like trying to solicit money from people. I do *not* want to bond with thousands of strangers. I do *not* need an audience to validate my personal triumphs. So even after I started going through my own breast cancer journey, i had already made the personal decision NOT to participate in Race for the Cure.
And then *this* guy showed up.
I’ve never been loyal to any particular nail salon before; usually i would just find places on Groupon offering the best deals and then hop around from sale price to sale price. When i was out on FMLA, though, i started going to the same place each month: The Polish Room – at 3632 West Pinnacle Peak Road, in Glendale. It was right around the corner from ADJC, so it was an easy way for me to meet up with some of my coworker buddies after they left work each day. It got me out of the house once every three weeks when i was feeling really shitty, and it gave me a chance to have 1-2 of my hours brightened with Amy’s contagious laughing and Christie’s hyper storytelling.
As we built our reputation for being “regulars,” the staff there started to take more of an interest in us. To be fair, they were *always* polite and friendly, and I already liked the place because they use quality products with their services. More and more, though, i started to notice the little things they would say and do for me/us: bottled water, when it started getting warmer; extra long feet massages, since chemotherapy had me looking HAGGARD on some of those days; and personalized comments, to show they remembered some of the things we had talked about during previous visits.
On one day in particular (March 7), i wasn’t doing so well. I was about to have my 5th chemo session. All my hair was gone; so was the color in my skin. Chemobrain was in full effect. I had my will and advanced directive sitting on my lap, waiting to be notarized after my mani/pedi. Amy, Christie, and Amy’s mom were chatting nonstop, and i was trying my best to keep up with the conversations … but i was having a hard time and could only hope i was doing a decent enough job with one of my favorite pastimes: Fake it to make it. When we finished, I went to pay my bill and was informed that it had already been taken care of. I looked furiously at Christie; her deer-in-the-headlights look confirmed it wasn’t her. I stalked back to the bathroom and waited like a creeper outside the door to confront Amy when she came out. She insisted it wasn’t her either.
It turned out to be Ben, the owner of The Polish Room. I think it was Christie who found out and told me. I had no idea why Ben had done this, especially considering how little interaction i had even had with this man in the three months i had been going to his business. I looked at Christie for explanation, but she just shrugged. I looked around at the sea of faces I had grown used to seeing each month, and they were all looking at me with slight smiles on their lips and genuine kindness in their eyes. Customers were all watching me, watching them, trying to piece together exactly what was happening. I walked up to Ben and asked, “Why?” His only response was, “Because,” as he gave me a quick but sincere sideways hug. I’m pretty sure Amy and Christie were both crying at this point, but all i could do was swallow my control issues, hide my embarrassment at being watched, and hug him back while I said nothing more than, “Thank you.”
Flash forward three months later. I am back at The Polish Room for my monthly mani/pedi. Ben sits right next to me.
“Do you … is it okay for me to ask you about your cancer?”
“What kind of cancer do you have?”
“Could we sponsor you for the Susan G Komen race?”
At that moment, all my aversions about fundraising pressure and overcommercialization and large-group activities went out the window. I was so MOVED by the compassion of this man who barely knows me that i agreed to his offer immediately.
Thank, you Ben. You don’t even realize it, but you motivated me to challenge myself in a new way today.
LINK TO MY PERSONAL PAGE FOR THE SUSAN G. KOMEN’S RACE FOR THE CURE
When you have cancer, it becomes the thing that defines you – to the point where everything else that makes you “you” just fades into the background, unnoticed … forgotten.
- When people ask me, “How are you?” they are no longer offering a meaningless greeting; now, they are asking me how my cancer self is doing. I tell my friends and family all the time, “I hate this question” … so they replace it with, “How are you feeling?” – which is essentially the same thing.
- Despite being in a day and age when everyone is rushing from one place to the next, glued to their phones and oblivious to their surroundings, complete strangers go out of their way to exchange some moment with me. They make a point to give me eye contact and a smile. Sometimes, there is sympathy on their face, or pity. Sometimes, there is kindness. Sometimes they follow this up with an encouraging statement: “You go, girl!” or “Looking good!” or “Keep fighting that fight!” Bald men, in particular, like to stop me in the grocery store, on the streets, at conferences, and in doctors’ offices with some compliment like, “Great hairstyle choice!” I know their intentions are good, and most of the time i appreciate their sentiments. Hell, sometimes i feed off their words, and it gives me a little extra boost that day. … but I also know that most of these people wouldn’t call out these statements to me normally; they’re saying these things to me because i have cancer.
- New people i meet just have to tell me about all the people they know/knew with cancer. “So what do you do?” has officially been replaced by, “You know, my ______ was diagnosed with _________ cancer….”
- One last change I’ve noticed has been on the road. So… my bumper stickers tend to piss a lot of people off. I know this. I love this – clearly, since I have been loading up my vehicles with bumper stickers since 2001. For 15 years, i have dealt with people speeding up to get right beside me in the next lane, finding some way to get my attention (e.g. honking, vigorously waving), waiting for my eye contact, and then making some rude gesture to show their disagreement with something expressed on my car (e.g. giving me the middle finger, shaking their head with a disgusted look on their face, yelling something like “baby killer,” or throwing some small item in my direction and then speeding off). And you know what? I don’t think that has happened one time since i got cancer. Here’s what *does* happen: I see people pulling up closer to read my stickers, changing lanes, speeding up to line up next to me … and then nothing. This has probably happened half a dozen times in the last two months. It’s like there’s some invisible line that these people don’t want to cross: “It’s okay to insult and throw shit at a liberal … but not a liberal with cancer.”
So, yeah, i get it. I’m the girl with cancer. It’s going to be what most defines me for a while. I can’t change it, so I accept it … and when i find myself getting grumpy about it, i just remind myself that i don’t have the power to change this right now, so get over it.
Last night, i had a moment where i was HONORED to be “the girl with cancer.”
It was 6:20 pm. Carissa, Clayton, and i had just driven over an hour to get to San Tan Flats. Christie planned this social gathering because she’s been out on FMLA for 5-6 weeks now, and she hasn’t been able to see her ADJC peeps much. When we got to our reserved outdoor table area, there was a flurry of greetings, introductions between friends and family, compliments about outfits, instructions about how to order food and drinks, and reminders about the gift cards included with the invitations. In the midst of all this, i feel a tap on my lower arm. I look down at an adorable little girl with huge brown eyes, a pixie hair cut, heart earrings, and a pink T-shirt announcing her status as a “princess.”
“Are you done with chemo?”
Something fluttered near my heart as i processed this little girl’s question. I smiled – not that automatic smile you give for pictures or initial greetings, but the kind of smile that lets the other person know you see them, you understand them, you are grateful for them.
“Yes, actually, i am done with chemo. How did you know that?”
“I went through chemo.”
I’m already trying not to cry. “You did? How long did you have to go?”
“For six months … 32 sessions.”
“That’s a lot of sessions! That must have been really hard.”
She nods, solemnly. “But I haven’t had any more chemo for a year now.”
“How do you feel?”
“Better.” She smiles. My heart is breaking.
I ask her if i can hug her, and she lets me. We take a picture together, and then i walk over to her family – a mom, dad, and two brothers all watching the entire exchange. Her mom tells me that Mia came home from school one day complaining about a headache – a headache that was the result of a cancerous tumor in her brain (medulloblastoma). Brain surgery … physical therapy … six months of chemo – all before she even turned eight years old. I look at this incredible little girl and feel humbled just standing next to her. I’m strong? I’m a fighter? No. THIS GIRL is the strong one. I’m an adult; i have the resources and coping skills in place to address adversity. This girl had to fight for her life at seven years old.
I later found out that Mia recognized my cancer self the moment i walked through the door. “Mom, look! I think she’s like me!” When she said she wanted to come over and talk to me, her mother said no, but her dad intervened. “Let her go.” This tiny, adorable mini-human had the observational skills to notice details about a complete stranger; the ability to differentiate between different types of bald people; the awareness that my bald head was from chemo; the additional awareness that i looked healthy enough to be post-chemo; and the drive to reach out and make a connection with someone who went through the cancer journey, like she did.
Forget mere acceptance. Tonight, i was grateful to be “the girl with cancer.”
Today marks the day i officially completed my 5th week of radiation. Five weeks down; one week left. The center of my chest has a slight, pimply looking rash. The right side is a deep purplish red, to the point where it looks less like a sunburn and more like an incident of intimate partner violence. At times throughout the day, i can feel my right “breast” tightening, so much so that if i could get away with going to the bathroom and ripping my bra off for the rest of my workday, i would do it. (Wouldn’t that be fun to explain to security during a sudden facility-wide search….) At other times, i feel this sharp, stabbing feeling in that area, which Dr. Patel assured me was expected at this point in my treatment.
I’m not complaining. None of this compares to chemotherapy. I will gladly take rashes, sunburn, shooting pains, dry skin, fatigue, and vertigo over the four months of chemo-hell – where every day was a new variety of symptoms, and the body weakness was so bad that i sometimes didn’t even bother to get out of bed until i was worried i might pee myself.
Plus, my hair is growing back. I see it. It’s not coming back in blonde, which fascinates me. No blonde – just a mixture of browns, whites, and grays. Lots of whites and grays. Last month, it was growing back in patches, but now there is this evenness to it all. It’s encouraging. Unfortunately, with *that* hair regrowth comes the hair regrowth all over the body … but again, i’m not complaining. I genuinely miss my eyebrows.
When i was at chemotherapy last week, I asked my nurse, Jen, why i have to wait a month after radiation ends before getting a PET scan (which will show how much progress we’ve made in eliminating my cancer). Her explanation made sense: Since i’m getting radiation treatments, there is radiation inside my body, and that radiation will light up all over the place if i get a PET scan right away. For this reason, the doctors have to wait long enough for all the radiation to leave my body; otherwise, my PET scan will show a false positive, which are results that say i test positive for something that i don’t really have (e.g. a drug test coming back and saying i tested positive for heroin/opiates, when really it was just some poppy seeds i ate on my bagel earlier that morning). All in all, it appears that i will soon have a temporary reprieve from doctors’ visits and medical appointments after radiation is over. It’s strange to think about. Since October 28, i have had a total of 112 medical appointments – an average of 3.5 appointments each week. After radiation, though, i only have 2 medical appointments for the rest of June … then nothing until the PET scan in late July.
I just cried for a moment. When i stop running my brain and my body long enough, i can finally see the finish line in the distance. My medical marathon is in the home stretch.
Last week, i went about my days acting as though i didn’t have cancer. Typically, this is not something i can do. Every food i eat … every drink i ingest … every physiological symptom i notice … every social outing i plan … every person i touch … everything about everything requires me to take my cancer into consideration.
But what happens when so much is going on that cancer has no choice but to stop being so fucking narcissistic and step out of the spotlight for a little while?
Last week was rough – not cancer-wise, but LIFE-WISE.
- I watched one of my close friends bury his 29-year-old wife. It was the first funeral i ever cried at – and i’ve been to six, including my grandfather’s. Every single day since May 27, i have called, emailed, or texted Burundi in an effort to give him whatever compassion, support, or information he appears to need. We’ve made plans for me to visit him three times. He’s cancelled all three times. He grieves with me through text messages, and he calls me at 1:00am to process his thoughts … but he won’t let me (or anyone else, aside from his sister and mother-in-law) see him. For 10.5 days now, Burundi has been the first person i think of when i wake up and the last person before i fall asleep. One night i even woke up from a dead sleep with an idea of how to find out (Internet Creeper Style) where he lives so that i can just camp out on his doorstep until he’s ready to let me just give him a goddamn hug while he cries. I’m about two days and four text messages away from doing this.
- My mother confirmed that she, too, has breast cancer. Her biopsy was last Monday. WTF? I was tested for the BRCA gene; i don’t have it … so how are we going through the exact same type of cancer at the exact same time??? She tried procrastinating her treatment, saying she wasn’t scheduling a surgery because she needed to make sure she was available to fly out to Arizona when i get my expanders replaced with implants. I wasn’t having it. I used every argument i could think of to get my stubborn-ass-Aries mother to schedule a consultation with a surgeon. She goes to meet him on Friday.
- I had a falling out with a friend over something stupid. I hate text-based miscommunications.
- I dealt with another friend’s hypersensitivity and agitation as she transitions from a daily routine of uppers and downers used to address every single one of her moods and situations, to a newer routine of caffeine and caffeine only. I remember being a little girl and getting on my mom’s case about giving up cigarettes. Every so often, she would make a half-hearted attempt to stop smoking … and then she would turn into such an uber-bitch that we all wished she’d just go back to smoking, and at least one of us would end up telling her that. I’m not saying i *want* my friend to go back to her substance abuse habits … but it’s been a little rocky dealing with the aftershocks of her newfound harm reduction approach to life.
- I argued with my supervisor at work over some brand new rule that she and HR want to apply just to me and no one else. I spent the week sending long-winded emails that included quoting policy numbers, which resulted in me having to meet with them today. Seriously – do any of the people in charge at my job actually do real work, or do they just spend all of their days finding ways to fuck with people’s jobs and happiness levels?
- I worked my way through Week #3 of vertigo. Driving with vertigo. Sweeping and changing litter boxes with vertigo. Showering and dressing with vertigo. Playing racquetball with vertigo. Being dizzy and nauseous every day for three weeks straight up SUCKS. I went back to taking anti-nausea medication multiple times a day. Zofran stopped me from puking, but it came at a price: one of its common side effects is coughing. My cough is back. I had this goddamned cough for four straight months, had three weeks where i could talk, exercise, and sing without having coughing fits … and now it’s back. I think i’d rather be puking. (Enter inappropriate punch line about bulimia here.)
In case it is not abundantly clear, i am more than a little grouchy right now … and i am even more annoyed that i have to keep taking time-outs from dealing with life, in order to deal with my cancer. “Mom. Mom. MOM. MOM!!!!” It’s like my cancer can’t stand when my attention is directed at anything else. I ignored it all last week, and it’s retaliating in this Borderline Personality Disorder kind of a way. It acts out to get attention, and it wins – every time. This week, i have to go back to giving cancer almost all of my focus and energy, in order to address some of the symptoms and side effects that have suddenly appeared or resurfaced.
And you know what? That’s not helping with my grouchiness.
Historically, light-skinned African-Americans have done it because they understood that living as a White person would give them economic and social advantages that they would miss out on for being Black. (As i write this, i imagine that plenty of ethnic minorities have done virtually the same thing, for essentially the same reasons.)
Womyn have done it during times when it was illegal for them to own property, hold jobs, go to war, or make legal decisions unless they were perceived to be men.
LGBT people have done it in order to avoid persistent acts of discrimination that range from inconvenient (less housing and job options) to lethal (violent hate crimes that lead to disfigurement and/or death).
These people essentially lived a lie because they knew better than to believe the hype that “the truth will set you free.” Day in and day out, these people convinced the world (and possibly themselves) that they were someone other than who they really were.
I don’t know how these people did it. I only have to do it for one day, and just planning it out is exhausting.
Tomorrow, i will attend a funeral. I have to watch a friend i love very much bury his wife-of-only-a-year, while the wife’s three surviving children (9, 7, and 1-week) bear witness to the tragedy that absolutely nobody saw coming. As of a week ago, i hadn’t spoken to this friend, Edwin Burundi Grier, in more than two years. We were coworkers, then friends, then lovers, then friends again … then nothing, when i cut him out of my life for a reason that clearly wasn’t that important, since i can’t even remember what it was. (I am known to do this.) It wasn’t until Friday that he popped back into my life, sending me a message through Facebook that dropped me to the floor crying the instant i read it.
I never even met his wife, but that was irrelevant to why i was on the hardwood floor crying. My poor Burundi. He just lost the love he finally found, after years of consciously refusing to commit to any womyn. He found love gradually, lost it quickly, and was left to take care of their newborn baby.
I called him the second i could choke back the rest of my tears and keep my voice level. I was the only friend of his who actually called. He straight up told me that, and it disgusted me how self-centered some people’s “friends” can be. It also reminded me, for the millionth time this year, how fucking incredible MY friends are. Wow, how i love each and every one of you so deeply, so uniquely.
For the past week, i have communicated with Burundi. He won’t see me – won’t leave his sister’s house, hardly – but he grieves to me through text messages and phone calls. And now, tomorrow, i will see what his grief looks like in person, when i go to his wife’s funeral. He doesn’t know i’m going. He would probably tell me not to; he’s convinced that he is of no use in my life unless he’s the happy-go-lucky, gotta-find-the-silver-lining friend I’ve known since 2008. But missing this funeral is not an option. He reached out to me specifically for a reason … and this is where Tarah’s true light shines, for if there is one thing i truly, absolutely, without a doubt know about myself, it’s that i have a special way of connecting and forming bonds with people who make themselves vulnerable to me. This is not bragging. This is acknowledgment of a gift that i have, one that i value and take seriously.
So tomorrow, i go to this viewing and service and burial, and i continue to support my Burundi as he starts a new, devastating, more lonely chapter of his life.
I know this part won’t be a problem. I can put my game face on, keeping my eyes filled with compassion, my body language mindfully present, and my face tear-free. For me, the problem is going to be hiding my cancer from a room full of grieving friends, former graduate school acquaintances, old coworkers, a previous roommate who did NOT leave our living condition amicably, and a room full of relatives – absolute strangers, to me – who are going to wonder who the heck i am and why i am there.
So tomorrow, when i put on my black dress and black shoes, i will also be putting on a brunette wig for the first time since January. The wig is obvious; every Black womyn in that room will know it’s not my real hair. The one black hat i have to cover the obvious roots from the wig is not suitable for a funeral, and a headband further accentuates that the hair on my head is a farce. Some of you are probably reading and wondering what the big fucking deal is. Here’s my explanation: I have this intense, Type A personality convincing me that i need to go to this funeral passing – passing as a healthy person who ISN’T going through chemo and radiation right now. Burundi and Evelyn (his sister, my college acquaintance) don’t know i have cancer. I am stressing the fuck out about showing up there, all cancered out and bringing unnecessary attention to myself when every single moment of tomorrow needs to be focused on the Griers’ and the Pipers’ mourning. Tomorrow, i have to make sure i get the dress and the wig and the bronzing make-up and the hat/hair accessory all right … because tomorrow i have to successfully pass as someone who doesn’t have some advanced, fucking, medical illness.
And as every single person who has ever met me will attest to, i find it very difficult trying to pretend to be someone i’m not.