Does It Ever End?

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. mandjeffreyThis is my favorite girl today. fullsizerender

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?

 

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tentacles

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.

nettiehorn.com

nettiehorn.com

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.


Shuffling the Pack

Another story from our fine local newspaper. Yes, it’s about cancer, and yes, it’s sad. Consider yourself forewarned.

Last month, there was a wonderful story called “Shuffling the Pack” about a woman, Tina Borja, and her dog Buck. Two years ago, Tina found a lump in her breast and became one of the the “one in eight” women in the United States to be diagnosed with the dreaded disease. She endured the all-too-familiar treatment of lumpectomy, mastectomy, chemo, and radiation to combat her cancer. During the misery that is cancer treatment, as Tina grew weaker, Buck took over as the pack’s alpha. According to Tina, it was no longer her job to take care of him; he decided it was his job to take care of her.

Reminds me of my sweet Maddy, the All Time Ever Best Dog in the History of the World. She and my sweet mama got sick about the same time, and both were going downhill fast: mom’s cancer was eating her alive, and  Maddy’s advanced age (98 in dog years) resulted in some nasty degenerative problems that no pet owner should have to witness. Long story short, my mom knew she wasn’t going to win her cancer battle and was heartbroken about the idea of me losing her and my beloved dog at the same time. The vet gave Maddy a few weeks to live, while Mom was given a few months. Darned if that dog didn’t defy the odds and live nearly 6 months past her predicted expiration date. She held on for several months after Mom died, then quietly let me know it was her time, too.

But back to Buck. And Tina.

After enduring treatment, Tina was pronounced cured of breast cancer. Not “in remission,” Tina says, but “cured.” Big difference. And one that this cancer survivor won’t feel comfortable assuming, ever. As I’ve written about here and here, “cured” isn’t something I consider. To me, “cured” connotes a permanent state, while recurrence is always on the horizon.

Tina looked at it differently, and didn’t think about recurrence. After being pronounced “cured,” she felt safe. She probably figured she’d endured so much hardship that she deserved to have a big payoff, i.e., a long, healthy life. Instead, she was hit with what every cancer patient dreads: recurrence. One day, out of the blue, she started  having trouble with fine-motor skills. Everyday stuff like typing and signing her name became iffy. After the all-too-familiar scans we cancer patients endure, Tina learned she had four tumors in her brain. Her breast cancer was not cured but in fact had spread.

She’s now enduring radiation on her brain, a last-ditch treatment that will most likely buy her some time, but it comes at a great cost. “With this cancer, you never know,” she says. “Will the cortex go first? Will I lose my speech? Or my motor control? Or my inhibitions? I could be running in the streets naked.”
Before any of that happens, Tina wants to make sure Buck has a new home.
So…it’s not enough for this woman to be dying of metastatic breast cancer, she also has to make plans for her dog to go to a new home? That is wrong. Just wrong.
I give Tina a lot of credit. Nowhere in the two articles I read about her is there a hint of “poor me” or “why me?” but instead, she’s focused on taking care of business. According to last week’s article, Tina “believes the right home is out there, that somewhere, someone is willing to give him the place in the world he deserves. A place with room to run, and someone to make him feel secure.”
Isn’t that what we all want, really? When we boil our life’s pursuits down to their essential elements, don’t we all want someone to give us the place in the world we deserve? A place with room to run, and someone to make us feel secure?
While my heart is breaking for Tina and my sense of righteous indignation is roiling over her situation — and that of millions of other cancer victims out there — I can’t help but be really moved by the love she has for her dog. I’m a dog lover and a cancer victim myself, so I’m ripe for the picking here, but even the most hard-hearted among us surely must be a teensy bit verklempt here.
For everyone concerned — animal lovers and “I’m fine without a furry creature in my life” alike — good news. Well, if you can consider anything good about Tina’s situation. After the initial article ran in the paper, more than 150 people emailed the columnist, Lisa Gray, and 100 of them expresed interest in adopting Buck.
Tina read every single email. I knew she was good people. She was reportedly overwhelmed, in a good way, and she replied to everyone who’d inquired about making Buck a part of their family. “Dear all, Your collective response evokes more adjectives than I can name: heartwarming, tender, encouraging, overwhelming.”
One email stood out among the horde, and curiously, it wasn’t even written by the person who might end up with the dog. Brett Felker recently had to put his dog down, and his stepmom, Kristy, emailed Tina. Brett’s dog, Boogie, was a blue-heeler mix, just like Buck. Boogie was a cattle dog on the Felker family ranch in Odessa, and Boogie lived a long, happy life with Brett on the ranch. At age 16, however, Boogie’s ranching days were over. The day that Kristy read about Tina’s plight was Brett’s first day back on the ranch without Boogie. Kristy took action, writing to Tina, “Perhaps we can see if Brett is ready for Buck. I think they both might need one another.”
This was a bold move by Kristy, and one that Brett could have interpreted as meddling. I know this, because I’ve been there. My beloved Maddy girl has been gone from this earth for 6 years, but I can still recall like it was yesterday how much it hurt to say good-bye, and how raw it felt to even consider getting another dog after my heart had been ripped out by her absence in my life. I remember saying I will NEVER get another dog, because the pain was too deep, the loss was too great. But in a matter of days, I knew that I would NEVER live my life without a dog as a part of it. I missed that sweet face in the window as my car pulled into the driveway. I missed that full-body wiggle when I walked through the door. I missed that comforting thump of the tail every time I entered the room. I missed the solid warmth and soothing presence of a furry body next to me as I reposed.
Brett wasn’t there yet when Kristy sent him the story of Buck. It was too soon, and he wasn’t ready. But Kristy soldiered on anyway, like a good bossypants, and emailed Tina. Then she took the bossiness one step further–which I love, by the way–and forwarded the emails between Tina and herself to Brett. Brett decided he was interested in Buck, because the blue-heeler side of Tina’s dog reminded him of his own beloved Boogie, but he wasn’t sure he was ready.
Tina replied in admirable dog-mama fashion, saying no pressure, but think about it because he seemed like a good match for Buck. I love that Tina wasn’t concerned with securing a home as much as she was with making a good match. That’s a good dog-mama for ya.
Tina and Brett are planning to meet soon, and Tina is sure it will be a good match between Brett and Buck. So sure that she’s already planning to take a picture of Brett leading Buck away. She says “it’ll be a brand new pack, each starting over, but each knowing what it means to be loved.” I sure hope Buck keeps this photo in his heart, forever:

That hospital smell

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.

I had hoped the pink labels on the cups would provide a clue as to exactly what this concoction is, but alas, that hope was not to be recognized.

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.

 


Thinking about it

I ran into a friend yesterday who I hadn’t seen in a while and she asked me how I’m doing. Great, I replied, just great. And in that moment, I truly was. I’d just finished a kick-ass workout and had a few minutes to watch my team play tennis against one of our old rivals. I had a bye this week so I could enjoy the two matches going on side-by-side, plus the gaggle of tennis hens flocked in between courts to visit. Those of you living in colder climates would scoff at our gaggle, in the bright sunshine and temps in the low 50s I’d say, bundled up like Texans tend to do when it gets “cold.” There were tights under tennis skirts, gloves, hoods pulled tight around sunglassed faces, and blankets wrapped snugly. The wind was downright nippy, after all. Good thing we have such fulfilling fellowship to help keep us warm.

Anyhoo, I had a precious little chunk of time after the gym and before picking up my carpool for early-dismissal day, and I was surrounded by friends.

Great. Just great.

Big smile.

Despite the sadness that’s permeated this week with the deaths of Rachel and Susan (and the flurry of blog posts, Facebook posts, articles, Rachel’s beautiful obituary, and personal stories about Susan like this), I’m great. My schedule is full but not overwhelming (just the way I like it). My laundry is done (if not folded and put away). My closet is clean and tidy (I can’t think when clothes are draped and shoes are jumbled everywhere). I’m great.

My friend was glad to hear that I’m great, then asked, “How do you not think about ‘it’ all the time?”

By “it” of course she meant cancer. And at that moment, I wasn’t thinking about “it.”

I thought for a minute before answering. This is an important question.

How do you not think about it all the time? While I don’t think about it all the time, cancer does indeed hover around me an awful lot. Sometimes in the foreground, front & center, and sometimes in the background, inching ever closer and waiting for any opportunity to swoop in and crash the party.

I explained to my friend that for me, it’s like this: you know that feeling when you get caught in the rain, or maybe thrown in a pool, and it’s a while before you can change clothes? That feeling of shirt, pants, and undies plastered to your skin? Heavy and uncomfortable, but not debilitating? It’s like that.

When fully clothed and drenched, one can still function. One can remain drenched for a long period of time and still get through the details of one’s day. The wet clothes cling and maybe even chafe a little, but one can breathe. One can move, onward and upward and from the rainy parking lot to the car, or from the pool into the house. Perhaps one’s heart rate jumps a bit as the adrenaline rushes, and maybe one even gets a little short of breath from the shock of the deluge of water or the careening into the pool, but one is still fully functional.

Myriad reminders of cancer assault me every day. Some reminders are overt, like the news of Rachel’s and Susan’s deaths on Monday, or more covert, like the strange dichotomy of my life’s timeline: events that happened before or after cancer. Reminders can be lasting memories, like the chalkboard sign my favorite girl drew declaring “Mom is feeling better!” a day after I was sprung from the hospital after my mastectomy. They can also be tactile, like the weight of the fleece blanket I used during each hospital visit settling atop my weary body.

The visual reminders pack the most punch: the battle lines of scars that crisscross my body, of course. The prescription bottle of tamoxifen that has a long-term lease on my kitchen counter. The drawer full of bras in various sizes, from the totally flat-chested “it’s an utter waste of money” bras to the “I sure thought this would work for the finished product” bras. The humongous stack of EOBs and bills from the various doctors: breast surgeon, anesthesiologist, infectious disease specialist, oncologist, OB-GYN, lymphedema/massage specialist, GYN oncologist.

Cancer changes people. Inside and out. In ways too numerous to count. In ways both miniscule and grand. Not all the changes are bad, mind, but know this: you will never read one word on this blog, now or ever, about cancer being a gift. If cancer is a gift, I sure as hell hope there’s a gift receipt, because I’m going to return it. And if you’re the sort of person who thinks cancer is a gift, you are most definitely not invited to the party.

Cancer encourages weird thoughts. Because of cancer, simple things like hearing Rihanna sing about love in a hopeless place makes me think not of star-crossed lovers in the projects, but the compassion of friends during life’s most difficult period.

Cancer panics me into thinking that any little twinge is a metastasis. Headache? My cancer has spread to my brain. Hip pain? Oh, mercy, it’s in my bones. Cramps? Ovarian or uterine secondary tumors. Just a couple days ago, I tweaked a muscle on my left side, in between my ribs. For an entire day, I couldn’t inhale fully; taking a deep breath hurt, and my first thought wasn’t the rational realization that I should have gotten a stool to reach the shelf in the laundry room, but the irrational thought that the teeny spot on my lung–most likely a byproduct of having pneumonia as a child–has grown into a tumor so big I can’t breathe.

Cancer elicits a full range of feelings and emotions. There’s exhaustion, anger, gratitude, fear, confusion, relief, distrust, joy, anxiety, and sadness. Sometimes all in one day. There are times in which I’m going about my non-cancer-related business and a wellspring of emotion surges up out of nowhere. My brain must be on constant overdrive. Sometimes the wellspring of emotion is bad and overwhelming, like the thoughts of recurrence. But sometimes it’s good, too, like the happiness humming through my heart when my septuagenarian friend at the gym showed me a photo on his iPhone of his golden retriever, Abby, covered up to her neck in his bed. Why does my heart sing at the obvious love this man has for his dog? Because cancer reminds me that life is fleeting and the good times aren’t guaranteed, so savor the small things. Cancer reminds me to be present in the moment, for you never know when idle chit-chat by the treadmill will flow into a display so sweet in its simplicity, yet so rich in its meaning. That Mr McKay loves Abby enough to tuck her into his bed with a down comforter is rich. That he chose to share that with me is even richer, and that I slowed down enough to engage him, instead of rushing off to my next to-do item, is the best part of all. In my pre-cancer life, I would have been in a rush to get out the door after my workout. In my post-cancer life, I know to slow down, listen to the people around me, and drink in their life experiences. While the weird thoughts that cancer brings get more attention, the beneficial thoughts are there, too.

I had a smile on my face all day thinking of Abby and her besotted owner. No doubt my thoughts will soon run amok again, imagining all manner of cancer-related craziness instead of lingering on the pure sweetness of a man and his beloved dog. Before long, I’ll again feel the soggy weight of wet clothes on my back as thoughts of cancer snake their way through the dense thicket of neurons in my brain.


6 years later…

Today is National Metastatic Breast Cancer Awareness Day. Congress said so, and in making such a proclamation, let’s hope we get some action. Action beyond pink ribbons and promotional tie-ins like toilet paper and cups of yogurt. The estimate is that some 160,000 women are dealing with metastatic breast cancer, but I suspect the number is much higher. Metastatic means the cancer has spread. Stage IV. There is no Stage V. Every BC patient’s worst nightmare. Because being diagnosed at all, regardless of stage, isn’t nightmare enough.

I’ll save the mets post for another day, because there’s another commemoration taking place today, and I won’t be able to rest until I get this post out of my head.

Or so I thought.

I sat down at my computer to mark this important day, but I got nothing. I am stuck. The enormity of the topic overwhelms me. I want to write just the right thing, but in my quest for perfection I’m struck down, unable to convey the importance that screams to get out.

It’s not often that I’m at a loss for words, particularly on this little blog. I rarely have trouble thinking of what to write, and most days the topic guides me. Sometimes a topic pops into my head and I have an overwhelming urge to write. My fingers on the keyboard can hardly keep up with my thoughts as they tumble out of my head.

But today, I’ve got nothing.

And rather than make myself crazy on this day, this important yet heartbreaking day, I’m going to re-run the post from last year. I added a few more pictures, because this time last year I was brand-new to blogging and hadn’t quite figured out how to manage the images in my posts. But more importantly, I added a few more pictures because I need to remember what she looked like.

My heart is heavy as grief once again rears its ugly head and reminds me that she is gone, forever. 
It’s been exactly 5 years since my mom died. Lots of people have written about loss & grief, and most of them have done it more eloquently than I. If you knew her, you loved her. Plain & simple. She was one of those people. She never met a stranger and could talk to anyone. The stories are endless, and if I think really hard I can conjure up the sound of her laugh. I have to work hard to remember her voice, though, because her “sick” voice is the freshest one. I also have to think back to how she looked, pre-cancer, before the dreaded disease ravaged her body yet was unable to extinguish her effervescent personality.

My mom was an incredible cook. She grew up on a farm and lost her own mom at age 13, so she assumed more responsibility than a middle-schooler should. She taught me a lot in the kitchen, although I’ll never match her skill with pie crust. I try every year at Thanksgiving and Christmas, and end up exhausted, frustrated and having used a month’s worth of curse words. One year at Christmas she gave coupons for a homemade pie, and those were highly prized gifts for sure.

She was a “white” woman who married into a Greek family. “White” means anyone who’s not Greek. Sometimes the Greeks aren’t happy about “whites” joining a family, because they want their kids to marry other Greeks. My mom didn’t let that stop her. She ingratiated herself into the lives of the Greek women and learned their culinary secrets. It wasn’t long before she was the best cook in the bunch. Not bad for a “white” girl.

My sweet mama was the quintessential suburban at-home mom: PTA president, Girl Scout leader, queen of homemade Halloween costumes. She put a homemade meal on the table every night for dinner, and I was halfway through elementary school before I realized that the homemade cinnamon roll that was my lunchbox treat was a rarity.

She had a love of learning that I see echoed in my own kids. I’m sure she flourished at college, probably thrilled to be responsible only for herself for the first time in years. She was president of her sorority and got this fancy necklace to wear during her reign. The look of pure happiness on her face makes me smile all these years later. In her typical over-achieving way, she graduated college in 3 years, then became an English teacher before she became a mom. My whole childhood, she had us look up words in the dictionary to learn how to spell. I won the spelling bee in 4th grade, and to this day am proud of being a good speller. She instilled a love of words and reading that I’ll carry with me my entire life.

When Trevor graduated from business school in 2004, she was as proud of him as if he were her own child. In fact, once he married into her family, she considered him a son. Not a son-in-law, but a son. She was sick at the time this photo was taken, but hid it well. She didn’t want anything to interfere with his big day.

She had a lot of success in life, but her greatest achievement was being YaYa. She loved her grandbabies to the max, and when she knew she was losing her battle against cancer, she spoke of her sadness in not being able to watch them grow up. She’s missed out on a lot. But loss is a 2-way street, and the 4 kids who were lucky enough to have her as their YaYa, albeit way too briefly, have missed out as well. As each year passes, and her grandbabies grow up, they change and take on new interests and habits. She would have loved every minute of it. Something tells me she would have been quite adept at navigating whatever stage those little darlins are in.

Here they are on the day of her funeral.

Andrew was 8, Payton and his cousin Megan were 6, Macy was 3 when YaYa died. She was 67. Way too young, all the way around.

Life isn’t the same without her. While the pain of loss has lessened over the years, it’s still there, and I suspect it never goes away. No one in your life loves you the way a mother does. And no matter how old I become, I will always miss my mother’s love. Oliver Wendell Holmes said that “mothers carry the key of our souls in their bosoms.” That certainly was the case with my mom.

Milestones are hard when you’ve lost someone so dear. Every year, the week or so leading up to the anniversary of her death has been miserable. I find myself transported back to the time of  illness and all of the unpleasantness that entailed. Taking care of her was both the hardest thing ever and the greatest honor. I went into it knowing it would be hard, but having no idea how brutal. Balancing that with taking care of my young family was grueling, no doubt. But I wanted to come out of it with no regrets, and I’m happy to say that I did.

This year, however, was different. I wasn’t dreading the date. Maybe because I’ve got a lot on my mind and a lot on my plate. Maybe because as I get ever closer to regaining my “normal” life after my own cancer battle, I have a new perspective. Maybe I’m just getting absent-minded in my old age.

For a while after she died, I looked for her in crowds: at the grocery store, at a baseball game, at any random gathering. I knew, of course, that she wasn’t there. At least my rational brain knew that, but I looked anyway. I don’t know when it was that I stopped looking, but at some point, I started to see her. Not really her, but glimpses of people or expressions on faces that recalled her: the woman at the gym who looks a lot like her from the back. The resemblance in my niece to my mom’s photos as a child. My aunt’s hands, which look just like my mom’s.

This year, today, on the anniversary of her death, I wasn’t looking for her, but she was there. Today in my much-anticipated first tennis match since my mastectomy, my opponents’ names were Barbara and Ann. Guess what my mom’s name was? Yep, you got it — Barbara Ann.


Facing the facts

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.

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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.”

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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.

Suck.

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.

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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.

Right?

If only.