Over the weekend, my favorite girl asked me to help her with a project for her biology class. She’s a freshman in high school now. This is what she looked like at age 8 when I was diagnosed with cancer. I took this photo the day before my bilateral mastectomy. This is my favorite girl today.
I know, right??? How does that happen???
Anyhoo, back to the story: my favorite girl is doing a project for her biology class on a disease or disorder that has a chromosomal component. She chose breast cancer.
She needed the basic info of my cancer: stage, treatment, etc., as well as ancillary materials (photos and such) that tell “the story” of her subject’s experience with said disease or disorder. I pulled out my bulging “cancer catch-all” — my binder that holds all my paperwork, like pathology reports. That was easy because it’s all facts: this scan was conducted on this date and found this. Then she asked for the not-so-easy part: details on how my cancer affected me. While there are indeed facts involved with that part too, something else is involved as well, which is what makes it, for me, the not-so-easy part.
Feelings. The dreaded feels.
I don’t like feeling the feels associated with my cancer experience. (I refuse to refer to it as my cancer “journey” because to me that word implies an end point. With cancer, there doesn’t seem to be an end point. I don’t like it, so I’m not gonna use that word.)
Six years out, I don’t think about my cancer experience nearly as much as I used to (hence the loooooooong periods of radio silence from this blog). As with most calamities, time does smooth out the rough edges. But with my favorite girl asking me for all the gory details, that dark period of my life surrounded me, again.
When, exactly, do we “get over” this? At what point does the calamity of cancer lose its potent punch? I’d like an ETA on the return of peace and tranquility. Can someone please tell me when to expect an easing from the powers of the cancer calamity? Because I need to know that at some point, cancer will no longer upend my day like a sucker punch and leave me reeling, wondering why I feel as I’ve been run over by a truck.
That will happen, right?
Even though my cancer experience is no longer the petulant toddler whining for a pack of Skittles in the grocery-store checkout area, apparently that cancer still packs quite a punch. The simple act of flipping through my medical binder to locate information for my girl’s project sent me on a one-way trip through bad memories and scary places. I see myself from a distance, as if I’m watching myself on a screen. In the blink of an eye, I’m no longer a survivor whose scars are a badge of courage. Instead, I’m instantly transported back to that time. Those days. That period.
I hate that cancer has the ability to do this. I hate that cancer still controls me. Like a bad habit or a selfish lover, my cancer has a hold on me. Other people’s cancers have that power over me, too. Like my sweet mama’s cancer. That rat bastard smiles and licks its lips, knowing it is the puppet master and I am the puppet.
I should know better than to expect to be “done” with cancer. After all, I’ve been thinking about it and blogging about it for years. As I wrote early in 2011:
Another things I’ve learned on my “cancer journey” is that someone keeps moving the finish line. I’ve only been at this for 10 months, yet have seen my finish line recede, sidewind, and fade into the distance. It starts even before diagnosis, with the testing that’s done to determine if we do indeed have a problem. Get through those tests, which in my case were a mammogram, an ultrasound or two, and a couple of biopsies. Then there’s the actual diagnosis, and getting through that becomes an emotional obstacle course. Following the diagnosis are lots of research, soul-searching, and decisions. But even when those are through, the real work is only just beginning. After the big decisions come still more testing (MRI, CT scan, PET scan, blood work, another biopsy), and that’s just to get to the point of having surgery. Get through surgery, then through recovery, and just when I think I may be getting “there” I realize that even after recovery, I gotta learn about re-living, which is kinda different when “normal” has flown the coop and there’s a new status quo involved. You might think that finding the new normal would be the end, but guess what? now there’s the maintenance and screening. If you’re the kind of person who makes a list and takes the necessary steps to reach the conclusion, you’re screwed, because there is no end. I can’t even see the goalposts anymore.
I should know damn good and well that there is no end. So why do I keep looking for it?
I read two articles this week that have stuck with me. Both are about cancer, and living with it. One might think that being four years out from the cancer “journey” that I would have “put it behind me,” but as those of us in Cancerland know, that is a misnomer. As the distance between us and cancer becomes greater, the instances of cancer smacking us in the face become fewer, but they are never gone. The opportunities to be bitch-slapped by the beast are plentiful. We reside in the “middle stage” of the cancer “journey,” as author Susan Gubar says.
Gubar is an English professor and ovarian-cancer club member. Her writing cuts to the chase and speaks to the very essence of my soul, a trait I greatly admire (and sometimes covet). To wit:
“But for some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it — unless you are first hit by the proverbial bus — but not now, not necessarily soon.
The word “chronic” resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated. At times, the term may seem incommensurate with repetitive and arduous regimens aimed at an (eventually) fatal disease. For unlike diabetes or asthma, cancer does not respond predictably to treatment.”
Cancer does not respond predictably to treatment.
True dat. The unpredictability of the beast gives it tentacles with potential to bitch-slap us at any time. Those tentacles may float benignly under the surface, or they may reach out and grab us sight-unseen.
Gubar writes of us Cancerland residents: “No matter how grateful these patients are for their continuing existence, it requires not the spurt of sprinters but the stamina and sometimes the loneliness of long distance runners. When repetitive and arduous regimens weary the spirit, it may be impossible to value the preciousness of life, to visualize one’s harmony with the universe, to attain loving kindness, to stay positive, to greet each day as a prized gift.”
This, my friends, sums up the conundrum those of us in Cancerland face: Yes, I am happy to be alive. But dammit, living under the cloud of unpredictability is hard. It’s stressful. It’s lonely. It’s scary. It’s rife with bitch-slaps.
Article #2 is by Lani Horn, who blogs about her cancer “journey” here. She wrote a piece that was picked up by Time magazine online about the movie The Fault in Our Stars and how it represents cancer patients. Having read the book but not seen the movie yet, I was intrigued by her take on how the movie would portray the reality of cancer patients. Or, as she more deftly puts it,”Is cancer simply a storytelling device — shorthand for eliciting sympathy and turning up the heat on the issues in a character’s life — or do the filmmakers take it seriously as a situation to explore? This question sorts the cancersploitation from real cancer art.”
Horn explains that people who watch movies that deal with cancer are in two distinct categories: “outsiders, wanting to understand an experience beyond our own, or insiders, coming to see our own lives reflected.”
She and I are in the latter group. Unfortunately. Horn makes it very clear that “the world looks different after you have spent time pinned to the mat by death. The gaps between reality and representation are no longer theoretical. They are contentious.”
Oh, but to reside in the land of theoretical gaps between reality and representation. To never worry about being bitch-slapped by a tentacle.
Horn asks: “So what does it mean to use cancer as a backdrop to a story? To be sure, a prolonged or terminal cancer experience is a crucible of one’s character, as well as the characters of those around you. The fractures in our relationships break or heal under the strain of mortal threat. Cancer is an economical dramatic device.”
Yes, cancer certainly is dramatic. And unpredictable. And bitch-slappy.
That hospital smell. Yuk.
It’s been a while since I’ve smelled that familiar and powerful smell. Yet as soon as I walked through the sliding glass doors for my CT scan, the smell of sickness, helplessness, confusion, fear, uncertainty, and anxiety flooded my senses. I’m back at the hospital for a scan of my chest and abdomen, to peer into the inner workings of this body of mine to determine if that wily cancer beast is setting up shop again.
As much as I hate being here, smelling that hospital smell, I’m strangely comfortable here. Although I haven’t had my all-important cup of coffee or one bite of breakfast, and although this is the last thing I want to be doing this morning, I’m not too grumpy. I know exactly where to park to get me closest to the Outpatient Imaging area. I proceed effortlessly to the hospital registration desk, the payment cubicle, and the Imaging reception area. The ubiquitous white ID bracelet circles my wrist like an old friend slipping her hand into mine. I recognize some familiar faces. There’s the kindly, grandfatherly volunteer who guides lost patients, so eager and proud in his dapper red vest and jaunty bow tie. There’s Christy the phlebotomist who remembered that I have young kids, and asked how they’re doing. There’s Mary the nurse who took pity on me when this cancer “journey” first began in May 2010 and I was in the imaging area all day for tests. She took pity on me and presented Amy and me with a pink Astros jersey, just in time for Mother’s Day. Another familiar face: Lily, who was my nurse in the OR during one of the many surgeries to try to contain the infection and clean up the swath of destruction it left in its wake. I first wrote about her a while back, and was tickled to see her smiling face today at Methodist. Lily is a breast cancer survivor herself, and she showed Amy and me the scars from her mastectomy years ago. Choosing to forego reconstruction, she put her cancer in the past and bore her horizontal scars with a quiet dignity and strength that often pops into my head. Imagine my delight when I see Lily ‘s face on a poster announcing her as the recipient of the 2011 Care Award. Well done, Lily, and well deserved.
Of the 12 others in Outpatient Imaging Waiting A, I’m the only one without an AARP membership. One woman is in her house coat, napping in her wheelchair. One is reading a large-print edition Agatha Christie novel. I’d be willing to bet I’m also the only one who packed kids’ lunches and juggled two different school drop-offs with my early morning appointment. Such is life as a “young” cancer patient.
I’m well prepared for my visit today, and look like a walking Apple ad with my iPhone, iPad, and iPod. The phone is the constant companion every mother of dependent children during school hours. The iPad is to distract and entertain, and the iPod is vital to block out the blare of the morning news show coming from the hanging TV. Today it’s Concerto for Violin and Orchestra No. 4 in D Major. Mozart reminds me to stay calm, don’t focus too much on the germ breeding-ground that is a hospital. Those of us who’ve contracted strange hard-to-treat infections after surgery tend to be on edge in the belly of the beast.
All set up with my personal electronic devices, I wait to be summoned to the back rooms of the imaging area. This is not my first rodeo, so I know what to expect: I’ll get an IV inserted in the crook of my arm (always a pleasure since my veins are so tapped out and reclusive after all this mess), then I’ll have to drink two big cups of gross-tasting liquid contrast that somehow goes down my gullet and lights up my belly for the abdominal scan.
It is not tasty.
Both times I’ve had an abdominal scan and had to drink the non-tasty drinks, I’ve been the only person in the entire waiting area to be served a beverage. The other patients waiting for their scans always stare, perhaps wondering why I’m so special as to get not one, but two special drinks.
I have one hour in which to drink this vile stuff, but I chug it down as fast as I can to get it over with. Christy, my phlebotomist/comedienne, quipped that if I had come after 3 pm she would have spiked my drinks for me.
After I’ve ingested all the non-tasty drinks and they’ve had time to light me up from the inside, I’m called back for my scan. Of course it’s freezing in the scan room, and because I’ve just chugged a 40 of cold nastiness, I’m a bit chilly. Christy makes my day by giving me a warmed blanket, and tells me to lie on the narrow “bed” of the CT scan machine. Once covered, she tells me to pull my jeans down to my knees — under the blanket — so the zipper and button don’t interfere with the scan. After drinking those awful drinks and enduring yet another needle stick, I’m not going to do anything to mess up this scan.
The machine starts clicking and whirring, and Christy and Lucas the technician tell me to raise my arms above my head, stretching them out as much as I can with the IV inserted. I do as I’m told, and Christy and Lucas leave the room. I’m all alone, except for the chugging of the machine and the computerized voice that tells me to breathe in, hold my breath, then breathe. This goes on for several cycles, then Christy comes back in to push the contrast dye into my IV for the chest CT scan. While this isn’t nearly as unpleasant as drinking the yucky drinks, it has the strange side effect of presenting a gross, warm sensation that is reminiscent of wetting your pants. Thankfully, this side effect was explained to me the first time I had the scan, so I didn’t panic.
It’s a weird feeling to actually feel something going into your veins. For this IV, I literally felt the needle entering my vein, and am happy to report that after all the needle sticks over the last 20 months, I’m not nearly as freaked out by this as I used to be. I don’t like it, but I don’t get sweaty palms over it anymore. I also felt the contrast push as it entered my vein, and I could feel it as it coursed through my bloodstream. Strange, unpleasant, and draining. I haven’t seen any clinical evidence to support this, but this whole experience wears me out, big time.
After the contrast spreads throughout its intended path, the computerized voice tells me to breathe in, hold, and breathe out a few more times, and then I’m done. By this time, my blanket is no longer toasty warm, and I’m more than ready to leave. Christy comes back in to remove my IV, and I’m all done. I feel a little woogity from all the junk that’s been injected into and ingested by my body and from the fact that it’s now getting close to lunchtime and I haven’t had a sip of coffee or a bite of breakfast. No matter, I’m done. I’m outta there, blowing off the stink of the hospital as fast as I can.
But here’s the rub, people: the fasting, the absence of coffee, the disruption of my morning routine, the sharp stab of the IV, the gross drinks, and the unpleasantness of the IV contrast are the easy part. Now, the waiting begins. Waiting to hear what shows up on those scans. Now that I’m well acquainted with my fellow cancer-chicks in the blogosphere, I know a lot more about breast cancer and recurrence than I used to. I’ve left the security of “we caught it early and think we got it all” for the real world of recurrence. Getting a glimpse into the harsh realities of metastatic breast cancer is a sobering experience. Through intrepid bloggers like the beloved Rachel and the eminently wise Susan and the witty Sarah (who had ovarian, not breast, cancer), I’ve learned first-hand that while being diagnosed with cancer, especially at a young-ish age, is scary, the really scary part is recurrence. We may think we’ve dodged a bullet or done our time or earned our freedom or whatever metaphor applies, but the truth is, it’s random and it’s scary. The periodic scans that make up the fabric of a cancer patient’s life are unnerving. There’s a delicate balance between wanting to be normal and being realistic. We hold our breath for the “all clear” while awaiting the blow that once again knocks the wind out of us and shatters our fragile peace.
I get a daily email with a breast cancer truth every day. Daily. Every day. Like when someone says 8 a.m. in the morning — daily every day. Today’s truth was about the rate of mortality being higher for African American women. I’m not African American, but I read the details anyway, because anything having to do with breast cancer has to do with me.
The emails come from the National Breast Cancer Coalition, and there are some interesting facts. Well, interesting to someone whose life has been affected by breast cancer. I’m unfortunately in that camp. Boo. I don’t want to be in that camp, but I can’t unring that bell. No one asked me what I want, sadly. Once you’re diagnosed, no matter how much you fight it or try to ignore it or don’t want it, you’re in that camp. So ya gotta deal with it, and one of the ways I’ve dealt with it is to immerse myself in fact, figures, and information. Not saying that’s the right way for everyone, because I know some people like to stick their head in the sand. I’m not judging the ostriches, just saying that they do in fact exist.
Because I’m not an ostrich, and I feel the more info I have the better armed I am, I like all the facts, figures, and information. Even the scary parts. I tell my doctors all the time, just give me the info, including the ugly stuff. I can handle the hard truths, I just need to know that I’m dealing with. I do much better having the information. Like the statistic that says 65 percent of those diagnosed with breast cancer will have a recurrence. It’s scary, but I like knowing it. I need to know it. For me, the unknown is much scarier. The permutations my wild imagination comes up with are way scarier than the actual facts.
I fully expect a recurrence.
Not because I’m looking for the Grim Reaper or because I’m negative — neither of which is true — but because I’m realistic. Being diagnosed at age 40 with what was for me my second cancer (melanoma was the first), I fully expect to have to face this beast again.
With both the melanoma and the breast cancer, I got off easy, relatively speaking. The post-mastectomy infection gave me a run for my money, but the cancers were easy to treat; the surgeries were awful but temporary. Man, that infection was a bitch. Who’d have thought it would be worse than the cancer and subsequent treatment? But it was.
But back to recurrence.
I fully expect it.
In fact, I recently mentioned that among a small group of my besties and was met with utter silence. Not one person piped up to say, “Nah — you’re crazy. You beat it and you’re done. Nothing to worry about.”
Chirp, chirp, chirp went the crickets in the abysmal silence of no one sticking up in disagreement with recurrence.
I’m no fool. I know that having one cancer puts a person at a much higher risk of contracting another type of cancer (exhibit A: melanoma >> breast cancer). I expect that it’s coming. At some point, at some time, it’s coming. I can do the math and know that I will spend more years fighting cancer than I’ve been alive. That’s one of the many things that just plain sucks about being diagnosed young. Or young-ish, in my case. Yes, there are tons of people who are much younger than I was at the time of diagnosis. Hell, some of them are even kids. Little bitty kids, fighting a big, nasty disease. Plenty of people are young, not young-ish, at the time of diagnosis. And they will spend even more years than I fighting the disease.
I had a fancy test shortly after my diagnosis, to identify the characteristics and risk factors of my cancer. The Oncotype gave very specific and very personalized information about my cancer. The test looks at a group of genes (21 genes total: 16 cancer genes and 5 control genes) to see what their activity level is. This test provides additional information — beyond the usual standard measurements such as tumor size, grade, and whether lymph nodes are involved — to give each woman a score that correlates to how likely it is that her cancer will return. The idea is to help make decisions on cancer treatment (chemo? no chemo? if so, what type and for how long?). Very useful information. Expensive (nearly $5,000) but useful.
My risk factor for recurrence of this same cancer, according to the Oncotype, was low. Really low. Single-digits low. But that’s little consolation to me. It’s nice to see that low number on the report, but I’m no fool. I know how haywire cancer cells can be, and how one cancer cell is all it takes to wreak havoc in one’s body.
I think it’s safe to say that most people who have stared down cancer think about recurrence. I remember wondering how in the sam hell I would ever get through what was the worst thing in my life, and once I was through it, thinking how nice it would be to consider myself done, but no, there’s the thought of recurrence. I think about it every day. Even after everything I’ve been through.
Every single day.
The current pinkwashing that permeates every October gives the impression that once you fight your cancer battle, you’re done. It’s a glamorous, sexy disease, wrapped in blush highlights and tied in with lots of fun products, all wrapped up in a cute pink ribbon. Sure, you may lose your breasts and your hair, and you will most likely gain lots of weight from the hormone therapy necessary to fight this bastard. You may lose any shot at positive self-esteem and a happy body image, and your life will never be the same. You may well make yourself crazy with the wardrobe challenges involved in dressing around a mastectomy and reconstruction, and you may well be bankrupted from the surgeries and treatments (even with good insurance), but once you’ve slayed that beast, you’re done.
I’ve had this snazzy little grouping of prescription drugs on my kitchen counter for months now. Yes, the lids are pink, because my Walgreens had them for the pinkwashing that comes every October for Breast Cancer Awareness Month. Cute, huh?
These are the drugs I take every day, like a little old lady. My old standbys. The usual cast of characters.
There are the two big stars sharing top billing, Bactrim and Minocycline. My darling antibiotics that course throughout my body twice a day, every day to kick some mycobacterium butt. I would be lost without them. Or perhaps I would lose the all-day morning sickness feeling without them, but that’s just wishful thinking. Maybe I’d be dead without them, who knows? There was a time when I was almost sure I was dying from them, but I got over that.
Next we have the Florastor, the one thing that besides coffee that keeps me upright every day. I’m forever indebted to Susan Christopherson for turning me onto this probiotic that helps restore peace and order in one’s digestive system after said system has been under attack by the slash & burn tactics of an antibiotic regime. There have been a few times over the last 6 months of living under this regime in which I’ve either forgotten or willingly neglected the Florastor, and I paid dearly for that mistake. It’s not a prescription, but is kept behind the pharmacy counter for some reason. I don’t have to show my driver’s license to buy it, though, so I guess you can’t make meth out of it.
There’s the Ferrex iron supplement, since I’m a bit anemic and because I need uber-healthy blood vessels to harvest during reconstruction. Because I don’t eat any meat, I need a little help getting my iron; I get some from all the dark, leafy greens I eat, but not as much as my carnivorous friends ingest. My sweet, Peruvian oncologist can’t for the life of himself understand why someone would willingly forego meat. He shakes his head and looks at me a little funny every time it comes up, and he tends to bring it up every time he sees me. I’m done expecting him to compliment me on my plant-based, cancer-fighting diet. It didn’t help much, anyway, so I guess everyone is free to go on ahead and eat a big-ass, nasty, extra-rare steak. Might as well add some fries, or a loaded baked potato. You can see how far the healthy eating thing got me. Harumph.
Then there’s Tamoxifen, my daily cancer-battling bad-ass. It makes sure that there’s no estrogen flowing to feed any remaining cancer cells. While the side effects are troublesome (early menopause, hot flashes, leg cramps, decreased fluid in the joints, to name a few), I like the idea of starving those bastards. Tamoxifen is my first line of defense against recurrence. It makes me feel like I’m doing something every day to keep this beast from re-entering my life. It’s a daily pill that I’ll take for 5 years, then reassess to determine if I should stay on it or switch to another, similar drug.
And today I stopped taking it.
That scares me. More than a little bit. But since Tamoxifen can promote blood clots, it’s counterindicated with surgery. So I stop taking it for 3 weeks and hope that nothing goes haywire with my bloodflow. No clots, no bloodletting, no drama. That sure would be nice for a change.
Although I’m subtracting one prescription from my snazzy little grouping, I still feel like a little old lady whose life revolves around her meds. Ya know the old wisecrack issued when someone asks what time it is, and someone else smarts off, “Why? Ya gotta take a pill?” In my case, the answer is yes, smart ass, more than one pill. So zip it and get me a big glass of water so I can choke these guys down. While my life may seem to revolve around my meds, I refuse–I mean, dig in my heels and refuse–to get a plastic pill organizer. I’m all about accessories, but not that.