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?

 


Still an impatient patient

I’m a terrible patient.

A very impatient patient.

I’ve written about this topic a time or two. Just the other day, I reported on my status after the summary removal of my last remaining girl parts.

Nick Bantock

Nick Bantock

Now, a few days further into the healing process, I feel good but not great. Truth be told, I’d much prefer to see and feel a lot more progress. The days are long when I’m forced to sit and heal. I’d like to say I’m a better patient than I used to be; crikey, I certainly should be given all the practice I’ve had during the last several years. But I’m not. At least not noticeably better.

In “Wisdom from the DL” I labored under the mistaken impression that I was getting better at being a patient:

I’ve been on the DL — disabled list — an awful lot since cancer came to town, and I don’t like it. I don’t like it, but I think I’ve gotten better at it. I’ll never be good at being a spectator in my own life, and I’ll never be one who enjoys the journey in my haste to get to the destination,but I have learned the value of time & place and that sometimes you have to be instead of do. I’ve learned to chant “It’s temporary” a thousand and one times to remind myself that while this is my life, it won’t always be like this.

In “Recovery mode” I was perhaps more realistic and came clean on being a terrible patient:

Recovery is tough, and it’s not one of my favorite things. It’s nowhere to be found on the list of my favorite things. I’m a terrible patient — impatient, restless, and intolerant of my dependent state. However, I’m quite the pro at the recovery process now, after multiple surgeries, and don’t fight it as much as I did in the beginning. I’m not going to win patient of the year award in this lifetime, but I’m not gnashing my teeth over the process this time around. Baby steps.

Here I am again, on the DL and in recovery mode. And I still hate it. I still suck at it. I’m still a very impatient patient.

Amidst a previous recovery–for which surgery, I don’t even recall–I explored some words of wisdom on the topic of patience. A few of my faves:

From Shakespeare’s Othello: “How poor are they that have not patience! What wound did ever heal but by degrees?” By excruciatingly slow degrees, that is.

Alexandre Dumas chimed in: “All human wisdom is summed up in two words — wait and hope.” I’m pretty sucky at both of these.

And from Leo Tolstoy: “The two most powerful warriors are patience and time.” Well, that confirms it: I’m hosed.

Then this from Ben Franklin: “He that can have patience can have what he wants.” Franklin. What a smart ass.

What I want is a time machine. Set to “fast forward” so I can speed through this infernal healing process. Or perhaps a home lobotomy kit, so I can fashion myself a new personality. One marked by patience.

 


Girls Love Mail

Throughout my long and arduous cancer “journey,” I was lucky enough to be on the receiving end of lots of mail. As much as I love email and texting for their speed and efficiency, there’s something just lovely about getting a piece of “real” mail. One friend in particular, a breast cancer survivor herself, sent me a card every week for a very long time, and seeing her familiar handwriting among the stack of junk mail made me smile every time (thanks, Jenny!). There were plenty of days in which that piece of mail was the highlight of an otherwise crummy day.

tumblr.com

tumblr.com

Imagine my joy when a commenter on this little blog alerted me to a wonderful effort for cancer patients called Girls Love Mail. Founded by fellow breast cancer survivor Gina Mulligan, GLM collects handwritten letters of encouragement and distributes them to new members of the pink ribbon club and those going through cancer treatment. It’s simple and brilliant: you write a note and mail it to GLM, where it goes into a special envelope and is passed on to someone whose day needs brightening.

I just sent my first two cards to GLM and signed up to send something every week. Check out the GLM website; there are sample letters and ideas on what to say. If you’re impatient like me and want to just get right to it, here’s the address: Girls Love Mail 2330 E. Bidwell Street, Suite 200
Folsom, California 95630. Drop a card or note in the mail; it’s such a simple thing but it has the power to make such a difference.


Wordless Wednesday, HAWMC

Day 3 of the Health Activist Writer’s Month Challenge:

“Wordless Wednesday. Post a picture that symbolizes your condition and your experiences.”

My first thought was of the many powerful images in David Jay’s The Scar Project. I’ve written about this amazing body of work here and here. The photographs are raw and real, just like cancer itself.

David Jay Photography

David Jay Photography

 

 


In 30 years…

Yesterday walking out of yoga with my favorite girl, I was relaxed and refreshed and thoroughly enjoying the first day of spring break. On our way to the locker room, the woman walking ahead of us turned to compliment my girl on beginning yoga at such an early age. My girl beamed in her ineffable way and chatted politely with this woman while I, the eternal germophobe, washed my hands. My girl gave me a look that said, “Seriously, Mom, the only thing you touched was your own personal yoga mat, so why are you scrubbing your hands like that?” Such is life after a nosocomial infection.

My girl and the woman discussed their most-favorite and least-favorite yoga moves, and after a short debate on the wheel and the crow, the woman told us that she’s been doing yoga for 30 years. My girl’s eyes grew wide at this, and I imagined her picturing herself 30 years from now, a most experiences and tranquil yogi.

Rather than smiling at my girl’s fledgling love for yoga, I was struck by a moment of panic and a most unwelcome thought: Will I even be alive to do yoga in 30 years?

Not to be morbid, but this is life after cancer.

When I was diagnosed at age 40, my breast surgeon told me something that has stayed with me through the worst parts of fighting this disease. Worse than facing the reality of losing both breasts as I faced a bilateral mastectomy at a time when most of my peers were reclaiming their bodies after years of childbearing and breast-feeding. While many of my friends were undergoing elective cosmetic surgery to perfect their post-baby bodies, I instead was looking at pamphlets illustrated with grey-haired grandmotherly types considering their surgery options.

My sweet breast surgeon imparted a fact about my life after cancer: that I would spend more years fighting this disease–whether actively (swallowing an estrogen-blocking pill every morning for 5 or 10 years) or inactively (chasing fears of mets from my mind on a daily basis)–than I had been alive.

And that’s the best-case scenario, in which I actually live more than 40 years with this disease rather than succumbing to its terror, as is the case of some 40,000 women in the United States every year. Of course my sweet breast surgeon was thinking best-case scenario when she told me this, and at the time I had no earthly idea how much mental havoc this disease can wreak. Had my sweet surgeon predicted or warned me that on any given day, even years after I had allegedly slain the beast that is cancer, that beast would have the power to plant such thoughts in my head as that which brought me up short yesterday after yoga, I would have likely run screaming from the room.

Would I even be alive to do yoga in 30 years?

charmedyoga.com

charmedyoga.com

What kind of thought is that??? That, my friends, is the power of cancer. It can erase the calming, centering effects of yoga in a single bound. It can swipe the joy of the beginning of spring break in one fell swoop. It can plant a seed of recurring fear and doubt with the greatest of ease.

The Social Security Administration estimates that the average life expectancy for a female in the US these days is 85. Simple math tells me that best-case I’m looking at 45 years post-cancer. More years fighting it than years I’ve been alive. Even with low recurrence-rate predictors and stellar care from top-of-their class physicians and access to always-improving tools that monitor my cancer’s efforts to reinstate itself, the recurring fear and doubt prevail. Within two minutes of bidding my yoga instructor namaste, cancer had infiltrated my thoughts and led me to wonder what my chances are of being the grey-haired grandmotherly type rolling up my yoga mat and heading to class.

charmedyoga.com

charmedyoga.com

I know, I know, we residents of cancerland are supposed to think positive. We are advised by all manner of sources–both sought-after and unsolicited–to assume the best. We are told to visualize it and believe it and it will happen. We are told that what’s meant to be will be.

But that doesn’t stop the automatic response that cancer brings. I can think positive and assume the best and visualize and believe all I want. I can employ every cancer-fighting weapon from pharmaceuticals to superfoods. I can hope and wish and pray to the anti-cancer gods. But cancer will do whatever it damn well pleases, and if it wants to come back and rudely interrupt my life, it will. If cancer wants to cut short my plans of doing yoga for the next 30 years, it won’t think twice.

That, my friends, is the power of cancer.


Distance traveled

I didn’t fall off the face of the Earth. It just seems that way. The Belly is still in business; thanks for your concern.

I had every intention of sitting down for a nice, rousing blog post over the last week, but life got in the way. It tends to do that. While the days were whizzing by and I remained blog-less, several ideas for posts meandered through my brain, but because I didn’t write any of them down, they’re now a swirling mish-mash of disjointed words and unattached ideas. Probably best to just start fresh. That’s what the New Year is for, right — starting fresh?

Being an overachieving busybody, I have tons of plans rattling around in my head. Yucky but necessary plans, like cleaning out my study and purging the stuff I don’t use anymore. Like touching up my kitchen paint, which has been nicked in many places as this busy little family has gone about its business over the last few years. Like repairing the wallpaper in the powder bathroom, which has started to peel in a few spots. It’s the only wallpaper in my house and I love it: big, lush banana tree leaves. Those giant leaves wrapping around that small space makes me smile, 8 years later. Lots of projects on the to-do list in addition to the everyday hub-bub of keeping my family up and running. After a long, leisurely winter break, my kids went back to school today (a somber affair that remained heavy and dreary despite the oh-so-rare appearance of a warm Pop Tart on each kid’s plate. Yes, I am that mom — the one who deprives her kids of sugary processed pastries for breakfast. Poor babies).

Besides a fresh start and umpteen projects, the New Year brings me perspective. Before looking forward and lurching headlong into 2013, I want to take a mo to reflect back on 2012. While 2012 had its challenges, it was a far cry better than 2011; that year and the one that preceded it were pretty stinky, with a cancer diagnosis followed briskly and cruelly by a nosocomial infection that would. not. go. away. Looking back on those dark days makes me shudder.

Many parts of that “journey” remain hazy in my  mind. When I think back to that time, it’s almost as if I’m watching a movie. A really bad, really scary movie. I know that it was I who endured it, yet my brain tries to protect me from conjuring up the details. Thank you, brain. I remember bits & pieces of it all, but not the specifics. It’s not as if I’ve erased all the unpleasant memories; they’re just faded. When I go back to the month I spent in and out of the hospital because of that damn infection, I can recall the exact look of each room in each of the three different hospitals, but I can’t really remember what that time was like. I know there was a lot of hopelessness and fear, but if I had to describe it, I would fumble. If you were to ask me what it was like to undergo a bilateral mastectomy two weeks before my 41st birthday, I’m not sure I could come up with more than, “It was hard.”

If you ask me how it felt to have a wound vac attached to me 24-7 for weeks on end, my answer would be that I can’t really say. I remember how loud that damn thing was, and how cumbersome it was to lug it around. I remember my home-health nurse coming four times a week to clean the wound; I know she measured the depth, length, and width of that wound every visit, and compiled the stats in a handy chart that we used to hang on to a semblance of hope that progress was being made, that the damn thing was healing. I know she used an oversized, medical-grade Q-Tip to clean the wound, and that it was horrific enough that she recommended a xanax before each visit (for me, not her). I remember her using that giant Q-Tip to gauge how deep the wound still was, yet when I try to recall how it actually felt, I can’t. I guess that’s a good thing.

This time last year, I was trying to regain my footing as I negotiated life after cancer and that awful infection. I didn’t make any New Year’s resolutions that year, or this year. I’ve never been one to inscribe grandiose plans upon my new calendar. Perhaps it’s an effort to fly under the radar. To live a normal life. To step lightly around the sleeping beast that is cancer recurrence. To put as much time and distance as possible between then and now.

education.com

education.com

 

 


Giuliana Rancic

I wasn’t planning on writing about Giuliana Rancic’s breast cancer diagnosis in October or her decision to have a double lumpectomy or her announcement  that her double lumpectomy has morphed into a double mastectomy. Much has been written about it, and she’s done the talk-show circuit, and I didn’t feel the need to comment on the latest celeb to begin a cancer “journey.” However, the more I read about her story, the more compelled I am to comment.

First, when her cover issue of People magazine hit the newsstands, it nearly caused me to have a heart attack. I was mindlessly unloading my loot from my shopping cart and putting it on the conveyor belt when I caught a glimpse of this:

I didn’t notice the photo or her name, but was drawn in by the bold yellow headline and wondered, who’s that and what’s she got that is serious enough that she has to fight for her life??? Imagine my shock when I read the fine print and realized that it’s Giuliana Rancic and she’s got what I had — breast cancer. After the shock wore off, I thought I’d better see how serious her diagnosis is; after all, if she’s fighting for her life, it must be bad. I’m thinking stage 4 with mets everywhere.

The article in People, titled “The Fight of My Life,” speaks of her “devastating cancer diagnosis.” I’m thinking this is really bad.

As I read on, though, I learned that her BC was caught early and had not spread.

Whew!

So does this mean that early-stage, non-metastatic BC qualifies one to be deemed “fighting for one’s life”? If that’s the case, what does that mean for women whose BC is not early stage and has spread?

This kind of overwrought journalism really bugs me. I know that People has to sell mags, but good grief, how about a little truth in advertising? The cover story of  “I’M FIGHTING FOR MY LIFE” in big, bold letters nearly caused me to stroke out, and left me thinking I really underplayed my BC story. My cancer was in both breasts, not just one, and I never declared that I was fighting for my life. I’m thinking I seriously mishandled this.

I’m certainly not one to kick a sister when she’s down. That’s not my intent at all. I wish her the best; I truly do. Cancer is a terrible thing, no matter what age or what stage one is when diagnosed, and I certainly don’t mean to give Rancic grief — she’s enduring enough of that as is. However, I do wonder about some of the comments she’s made. I was hoping they were taken out of context, but ….

She said that the double lumpectomy didn’t get all the cancer so she was moving forward with a bilateral mastectomy, and I totally support her saying that deciding to have a mastectomy “was not an easy decision but it was the best decision for me.” Agreed. But when she went on to say  “Not only can it [mastectomy] save your life, but you can come out feeling healthier and with a positive self-image”

Really?

Ladies, raise your hand if your bilateral mastectomy left you feeling healthier and with a positive self-image.

Come on, show of hands.

Anyone? Anyone?

Maybe I’m the odd girl out, but the process of lopping off my breasts certainly didn’t make me feel that way, and 18 months later, it still hasn’t. I’ve talked to more than a few BC gals, and never once has the topic of feeling healthier or having a better self-image come up. Not once.

On The Wendy Williams Show the other day, Rancic spoke openly about her surgery and how she thinks it will affect her: “Listen, I love my girls, but I’m gonna feel more like a woman when this is all done.”

“I’ll be able to say that I survived something major and it’s made me stronger. I will be a better woman for it.”

 Oh boy. More like a woman and a better woman. Yikes.

I hope she’s not setting herself up for a very big, very traumatic fall.

Rancic went on to say that “scars are beautiful. I think scars tell a story.”

Yep, there’s a story there all right. Millions of women can attest to that. There is most definitely a story there. Hopefully not a horror story.

I wonder if she’s seen any images from The SCAR Project. I was blown away by photographer David Jay’s shots the first time I saw them, and receiving The SCAR Project book is one of the best gifts ever (thank you, Trevor). The women are beautiful, and their strength and kick-assed-ness is beautiful.  The scars, not so much.

thescarproject.org

thescarproject.org

thescarproject.org

thescarproject.org

Giuliana Rancic speculated of her breasts after reconstruction: “They might come out looking even hotter. You gotta have fun with this. We find the humor in everything. Bill helped pick ’em out. I’m like, ‘Bill, that big? Really?'”

They might come out looking even hotter.

I’m gonna have to linger on that idea for a minute.

And when I’m done, I will contemplate the damage that occurs when people say things that imply that facing breast cancer is a tidy event that requires surgery and treatment then fast-forward on to the happily ever after. While the happily ever after certainly can, and does, happen, I think it’s misleading to say that BC is something you deal with and move on. The idea that after cancer comes transcendence is flawed. The idea that all you have to do is wrap a big pink ribbon around a cancer battle is flawed. The idea that everyone comes away from breast cancer a better, stronger person is flawed. It’s not that easy, it’s certainly not pretty, and it doesn’t always result in the kind of change you would consider positive.

In speaking of Rancic’s mastectomy, her husband Bill said, “Our goal is to be done with this by Christmastime and not look back. We’re taking the rear view mirror off the car and we’re not looking back, because we’re going to be done.” Well, considering she had the surgery two days ago, and is still in the hospital, I hope she’s “done” by Christmastime. It’s good to have goals.

Maybe the whole cancer thing is still too fresh for me, too raw, but the idea of not looking back is weird and foreign and borderline incomprehensible. Maybe there’s a pair of magic “don’t look back” glasses that gets passed out upon diagnosis, and I missed out on that. I can see how that might happen as I’m always in a hurry and might have scooted out of Dr D’s office before anyone had a chance to give me the “don’t look back” glasses. Or perhaps I was supposed to get them from my oncologist, but was so freaked out by the fact that I have an oncologist that I ran out of his office before I got the magic glasses. Maybe Giuliana got her glasses in advance; one of the perks of being a celeb and having cancer. Personally, I don’t know how one can experience a cancer “journey” and not look back. I hope it works out for her.

Giuliana is definitely on the fast-track. She says, “I hope for a full recovery by New Year’s Eve. We’re planning to be in Times Square!”

If any of y’all are going to be in Times Square for New Year’s Eve, look out for Giuliana. And be sure you don’t bump into her. Those mastectomy scars and JP drain holes take a while to heal.