RIP, Steve
Posted: October 6, 2011 Filed under: cancer fatigue | Tags: Apple, cancer sucks, commencement speech, iPad, iphone, iPod, losing loved ones to cancer, postaday2011, Steve Jobs 9 CommentsThe world has suffered a huge loss today. Not because he was famous, or rich, or any of those externalities. But because he was a game-changer. Steve Jobs set out to change the world, and he did just that. In ways big and small, he did just that.
Not only did he bring to the general public some of the most useful products of my generation (iPhone, iPod, etc), he encouraged a nation of people to be better. At whatever they do. He gave commencement addresses that inspired me, and I’ve never been in his audience. Speaking at Stanford to the class of 2005, he said:
“Your work is going to fill a large part of your life, and the only way to be truly satisfied is to do what you believe is great work. And the only way to do great work is to love what you do. If you haven’t found it yet, keep looking. Don’t settle. As with all matters of the heart, you’ll know when you find it. And, like any great relationship, it just gets better and better as the years roll on. So keep looking until you find it. Don’t settle.”
And don’t sit still — he wasn’t a fan of resting on one’s laurels (and if anyone could have rested, it would be him). But that shows just how special he was, that he wasn’t satisfied with having done enough, he wanted to do more. On the news one night in May 2006 he said, “I think if you do something and it turns out pretty good, then you should go do something else wonderful, not dwell on it for too long. Just figure out what’s next.”
Sadly, there is no “what’s next” for Jobs, but his legacy will live on.
To say that he was a visionary seems trite, insufficient, but it’s true. I love that he knew what the public wanted, in terms of Apple products, so well but wasn’t cocky or full of self-importance. This quote in BusinessWeek in May 1998 sums it up: “It’s really hard to design products by focus groups. A lot of times, people don’t know what they want until you show it to them.” True, so true. If someone had described the iPhone to me before I had one in my hand, I wouldn’t have gotten it.
I’m not a gadget-y person. I don’t like stopping long enough to learn how to use something but prefer to dive in and figure it out as I go about my busy day. I’m not a reader of manuals, but that’s the beauty of the Apple products, and of Jobs’s insight into product design: you don’t have to figure it out because the device figures it out for you. Jobs truly understood how to show us what we want and need, without it being about him, about Apple, about financial success. He seemed to really care about doing great things. Way back in 1993, when I was a newlywed without a cell phone, an iPod, or an iPad, Jobs told the Wall Street Journal: “Being the richest man in the cemetery doesn’t matter to me … Going to bed at night saying we’ve done something wonderful … that’s what matters to me.”
My most favorite thing about Steve Jobs was his attitude toward the innovators all around us. You don’t have to be CEO of one of the most successful companies in the world to be an innovator and affect change in your life, and Jobs spread that message far and wide. I happen to live with a 9-year-old who follows the Jobs model. While I admit I’ve often thought if she were more like other little girls, it sure would make my life easier, but that’s short-sighted and temporary. Yes, buying a Disney Princess costume would be much easier than figuring out how to bring Domo to life, but that’s not her. 
And I’m glad. Just like it’s not her to choose a “normal” job to research and present to her class in a career day speech. While the other kids see themselves becoming nurses, MLB players, dancers, and electrical engineers, my little innovator chose the lead singer for KISS. In all seriousness. It never even occurred to her that this is wacky or unusual or “out there” because that’s how she rolls. She wasn’t looking for giggles or shock value; in fact, she probably wouldn’t care if others thought it weird or unusual or shocking that she wants to be the lead singer for KISS. She can’t sing, but that doesn’t stop her from thinking this way. It was hard to keep a straight face as she practiced her speech in her jammies the night before delivering it, as I marveled at her “outside of the box” self.
I think Steve Jobs would have approved. I think he and my girl would have liked each other. I can see them hanging out, talking about crazy stuff like a tiny device that can hold all your music, so you can listen anywhere as you do whatever you want. Like a home computer with a processor half the size of a shoebox but with plenty of computing power. Like a computer application that allows you to make and edit home movies good enough to be shown on the big screen. Like a fully functioning personal computer you can carry in your pocket. Like a Japanese anime character costume that weighed 20 pounds, was covered in industrial-strength carpet, and induced heat strokes in small trick-or-treaters but was so kick-ass, so rockin that it inspired people to hand out extra candy, to give a big handful of the good stuff as a means of awarding extra credit for creativity.
Sadly, my girl will never meet Steve Jobs. Not because he’s rich & famous and we’re ordinary people. Not because he lives all the way across the country. But because he’s dead. Because cancer stole him from us at age 56. I’m so sick of cancer. I’m sick of it in my own life and those of my friends in the blogosphere. I’m sick of it in the lives of the rich & famous whose deaths from it become magnified on TV, on the Web, and in magazines. I’m sick of it in my own family, where it stole my sweet mama and two of my favorite aunts (happy birthday, Thea Sophia; you may be gone but I still remember October 6th. Miss you).
And Steve Jobs, I miss you too. Thanks for changing my world, and for making it ok for people like my little girl to be different. May she follow your lead and change the world in her own way. I will share your quote about the crazy ones with her as she grows up and (hopefully) remains a square peg. RIP, Steve.
“Here’s to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes…the ones who see things differently — they’re not fond of rules. You can quote them, disagree with them, glorify or vilify them, but the only thing you can’t do is ignore them because they change things. They push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.”
businessinsider.com
Welcome to funk-ville, population 1
Posted: September 27, 2011 Filed under: breast cancer, cancer fatigue | Tags: breast cancer statistics, cancer battle, cancer diagnosis, Carl Sandburg, Eleanor Roosevelt, mastectomy, psychological effects of breast cancer, Robert Frost, Winston Churchill 10 Comments
If you’re looking for a laugh or an inspirational story, you’ve come to the wrong place. I’m in a funk and there’s no amount of lipstick that’ll pretty up this pig (the funk, not me). My thoughts are scattered like leaves falling off a tree (if only that conjured up visions of the russet colors of fall, of leaves parachuting off of trees as they ready themselves for the change of season. That does happen in some parts of the world, but here, in the land of eternal summer, and in this infernal record-breaking, never-ending summer, the only leaves falling from the trees are brown and crackly, dead from the drought. How’s that for a cheery thought?).
I’ve been struggling the last few days. I’m frustrated with the pace of the healing from the latest surgery–yes, I’m a whole lot better, but I want to be done. I’m madder than a wet hen about the effect of the last surgery on my tennis game, and wonder if I’ll ever get my serve back. I’m worn out from the swirling, worrying thoughts of whether I’ll ever have the results I want. I’m both impatient for and dreading the next round of revision. I’m tired of being tired. I’m pissy about the fact that I’m still battered and sore. I’m ready to rip the port right out from under my skin because it catches on my clothes and shoots a sick sensation up my neck that reminds me the damn thing is sewn into my jugular vein. Oh, and it looks weird, too. I’m sick of cancer and all its many fallouts.
Normally, my solution to such a funk is alcohol. Lots of alcohol. Every night is ladies’ night when the funk shows up at my house. But there’s a niggling voice in the back of my head reminding me that alcohol is a major contributor to breast cancer, both initially and in terms of recurrence. And since not a day goes by that I don’t think about recurrence, perhaps I should avoid using alcohol as a balm for my beat-up soul. Dammit. Yet another way cancer has wreaked havoc in my world. If I can’t in good conscience comfort myself with booze, I’m in real trouble. This is no fun.
When I was diagnosed last year, Dr Dempsey gave me a stack of play money. She handed it to me and said it is very important currency. Each “dollar” bill was a free pass to be in a funk. To throw a fit. To have a pity party. As she put it, “to lay in bed watching Lifetime and eating ice cream.” I laughed and thought, pfffft! I won’t need that. I got this. Me and my positive attitude can kick this cancer no sweat. 
While I am happy to report I’ve spent not one day in bed watching Lifetime and eating ice cream since cancer shat upon my head, I’m thinking I may need to pull out one of those dollars. How crazy is that — after all the crap I’ve been through, after seeming like I was finally getting close to the finish line, now I fall into the funk?
Don’t worry, I’ve already run through all the reasons I have to be happy: I’m alive, the worst is behind me, I’m not in the hospital, I have neither drains nor a wound vac attached to me, I’m cleared for exercise, I have great doctors and comprehensive insurance, I have a stellar support network, blah blah blah. Yes, all of that is true, and I know in my heart of hearts that there really is more good than bad in my life. I know that one day this whole “cancer journey” will be a speck of dust in my rearview mirror as I travel along the grand highway of a happy life. But right now, the funk rules.
Those of you who are within shouting distance have been hearing about it. The frustration, the impatience, the pissy-ness. What you won’t hear, though, is “Why me?” because really, does it matter why? Not so much. What matters is how ya sweep up the mess that’s dumped on ya, and most days I’m armed and ready with the broom & dustpan. But for now, I’m frustrated, impatient, and pissy. And mad. I’m mad, too.
I’m mad that this damned cancer “journey” has to be so hard for so long. I’m all for rolling up my sleeves, gritting my teeth and getting through it. I fully support Winston Churchill’s idea of “If you’re going through hell, keep going.” I believe Eleanor Roosevelt 100 percent when she said “A woman is like a tea bag — you never know how strong she is until she gets in hot water.” I gather strength from Robert Frost telling me “The best way out is always through.” But geez, does it really have to be this arduous? The ways in which cancer robs us are seemingly endless, and breast cancer in particular is a repeat offender, a pathological thief.
I just read this article, “What’s It Really Like to Live Through Breast Cancer?” Today especially, I needed to hear other women’s stories. Valerie, age 52, said that “she needed symmetry. She needed things to be as they should. She needed, after two years of surrendering to the opinions of doctors and the input of the cancer Web, to have an ounce of control over her body.” Yeah, me too.
Renee, age 47, said that “when I had her mastectomy sutures taken out, I asked the surgeon to remove the Sharpie mark she’d made—the black line that went across my ribs like a big smile—and the surgeon asked what line? I pointed. Her eyes got big and she said, ‘That’s your incision, Renee. We opened up your body. We removed a lot of tissue.’ ”
There are lots of Valeries and Renees out there. One in eight women will be diagnosed with this dreaded disease in the United States alone. Worldwide, there are 1.3 million new breast cancer diagnoses a year. That’s more than a million women who will endure this disease. Of them, some 465,000 will die from it. But even those who survive it, like me, will carry the weight of the disease. The physical scars Renee spoke of are nothing compared to the emotional ones. People say we’re lucky that our cancer occurs in a body part that can be removed. True, but it also means that we see evidence of that cancer every day; if I had a kidney removed, I wouldn’t be confronted by the railroad tracks of a long, harrowing journey every time I undress.
Sure, it’s better to be scarred than dead. No question. But being alive doesn’t mean I have to be happy all the time. It doesn’t mean I won’t get in a funk and be frustrated, impatient, pissy, and mad sometimes.
But the funk will pass, hopefully sooner rather than later. Like in Carl Sandburg’s beautiful little poem, the funk, which can come in like a herd of elephants or on “little cat feet,” will overlook my city “on silent haunches,” and then move on outta here.
(thanks to google images for making it so easy to pretty up my blog today)
Daymare
Posted: September 23, 2011 Filed under: breast cancer, cancer fatigue | Tags: artificially induced menopause, breast cancer and young women, hormone suppression, Jorge Darcout, psychological effects of breast cancer, PTSD 5 CommentsWhat do you call a recurring nightmare that happens while you’re awake? Recurring daymare doesn’t sound right at all. Whatever it’s called, I’ve been having it. Guys, you may want to click on over to espn.com or continue searching for pics of Minka Kelly in a bikini because I’m fixin’ to talk about some lady stuff.
This blog has been my outlet for all things cancer-related: the good, the bad, and the ugly. Sadly, the latter two categories way outweigh the first in this trilogy, but that’s when you grit your teeth and plow right through it. There’s been much discussion on this blog about highly personal things, and lots of talk about boobs (sorry, guys; not the Minka Kelly type of talk). Such discussion is brutally honest and at times of the sort that makes people uncomfortable, but that’s how I roll. I could no more ignore the elephant in the room than root for the Yankees (dang, even the thought of that makes me sick to my stomach). I never learned how to sweep things under the rug or look the other way, and I’m not one bit sorry.
So, with the disclaimer out of the way, it’s on to the recurring daymare. Several times in the last few days I’ve had a moment of sheer panic when I think I’ve started my period. Not sheer panic in the sense of it’s gonna be a gusher and I’m in my white tennis skirt far, far away from any feminine hygiene products. No, this sheer panic is in the form of a stark realization that if I were to start my period again, after 17 months, that would signal the end of my chemically-induced menopause.
And that would be bad. Very bad.
Not that I love menopause, not by a long shot. I especially do not love menopause at the age of 42. Going through the ‘pause a decade early is cruel and unusual on many fronts: it’s yet another reminder of having been diagnosed with a potentially deadly disease while my kids were still in grade school; it sucks to be enduring it years before my peers; and it forces me to face all the unpleasantries of how breast cancer can destroy one’s self-confidence and body image at a time in which one should be living large in the prime of one’s life, to name of few.
But menopause for me means that the hormone suppression — which comes at quite a cost — is working. It means that the hormones that fueled my cancer are gone. There one day, gone the next. Hormone suppression causes me a litany of problems, but it means instant famine for my cancer.
If I were to start my period, it would be a red flag (pun intended) that my ovaries were pumping out the hormones that cause a technically-she-should-still-be-fertile woman to start her cycle. And while I’d love to return to that carefree time in which my ovaries pumped out whatever hormones necessary to keep me from being the withered husk of a woman that cancer tries to make me, it would be very bad news. I’m already on the short list at my doctors’ offices (plural) for being a troublemaker. The last thing I need is to ring my onco-crush, as Trevor calls him, to say, “Guess what? The ‘take one pill daily for five years’ Tamoxifen and the quarterly shots of Lupron aren’t working anymore.” I think that sweet man might have a heart attack. And I’d never hear the end of it from Dr S, who not-so-secretly thinks I invent symptoms to have a reason to go see my onco-crush, all the while shaking his head and muttering about what anyone could possibly see in a young, handsome, fit Peruvian doctor when there’s a much-older, much wiser plastic surgeon to adore.
This latest daymare is a perfect example of the PTSD that cancer patients endure. I imagine there are some cancer patients out there in this big, wide world who finish treatment and declare that chapter of their life closed, never to be stressed over or fretted upon again. I’m clearly not one of them. I hear tell that one day, this nasty cancer business won’t be in my forethoughts all the time but will be demoted to a back-burner status. I’m not there yet, but I’m hopeful. For now, though, the thoughts are there, and the fears are many. Things that used to scare me don’t scare me anymore (namely needles, but having been poked so many times I’m over it. In fact, I gave myself a shot the other day, like it was a normal, everyday event) but things I never knew were scary now scare the fool outta me. If that makes any sense.
The other day I was chatting with a friend in the parking lot in the brutal and ongoing Texas sun, and suddenly I felt something that flipped the switch from “I’m a normal person having a normal, non-cancer-related conversation with a friend” to full-blown panic, just like that. The feeling? Something wet was collecting, not quite pooling but definitely collecting, under my newly constructed right breast, site of the infection of the year that turned an average bilateral mastectomy recovery into a shitstorm, for lack of a better word.
I went on with my normal, not-cancer-related conversation, hopefully as if nothing was wrong, but was seriously panicked inside. Visions of hospital beds filled my head; the hospital smell that I dread more than words can say infiltrated my nose; and I could almost feel the 20-gauge needle puncturing my skin to access my port so the army of big-gun antibiotics could get in and fight the enemy. In my mind, I had been admitted and diagnosed with a recurrence of that damned infection within the span of a couple of heartbeats. In reality, it was a simple bead of sweat.
Ahh, yes, a simple bead of sweat. Such a common character in the land of perpetual sun, magnified a few million times by standing on a blacktop surface. A simple, everyday occurrence in the life of millions of Texans and citizens of other hot (but not as awesome) states in this fine country. One little bead of sweat that most people don’t even notice had the power to instantly transport me back to the hell that is included, free of charge, with a post-mastectomy infection.
Somebody wake me from this daymare.
I’m expecting a big fat “rejected!” notice
Posted: September 21, 2011 Filed under: breast cancer, cancer fatigue | Tags: cancer diagnosis, life after breast cancer, life insurance and cancer, mastectomy, post-mastectomy infection, psychological effects of breast cancer, young women with breast cancer 9 Comments
Trevor is trying to get life insurance on me. I’m sure that should make me nervous on some level; however, I think he knows that even on my worst day, his life is a bit easier with me in it. Right?? Right??
Here’s what’s funny: I had to fill out a bunch of online forms, knowing I don’t have a snowball’s chance in hell of being accepted. It’s ok, I have really thick skin. I don’t worry too much about rejection.
The online application has a big section on heath issues, conveniently divided up into categories: physical exam; common conditions; skin, hair & nails; musculoskeletal; women’s health; and “other.”
I’m sure I would pass the physical exam, as long as they give partial credit for having partially finalized body parts. The common conditions section included questions on whether one has had problems with things like colds, flu, allergies, as well as kidney stones and appendicitis. Since when did the latter two become common? I hope I never have either.
The skin, hair & nails section sadly had nothing to do with how fastidiously or fashionably maintained one is. I would pass with flying colors on exfoliated, moisturized, and sunblocked skin, as well as highlighted hair and a nice mani-pedi. But no, they want to know about boring stuff like shingles and psoriasis.
Musculoskeltal was a little more interesting with queries about back pain, bone spurs, fractures, and plantar fasciitis. No, yes, yes, and yes. That was easy.
Women’s health dealt with exactly what I’d expect: birth control, menopause, hormone replacement therapy. In other words, some of the most depressing topics on the website. No need for birth control when you’ve been thrown into early menopause. The baby-making department has not only been downsized but is out of business and closed for good. Menopause? Yep, in spades. Every symptom under the ‘pause banner got a big, thick checkmark from me. Hormone replacement therapy? No chance. The damn hormones fed my cancer machine, so there’s no way I’m going to replace them. Not even if they begged me to come back. 
The “other” section inquired about a smorgasboard of topics: concussions, cycts, hernias, and plastic surgery. Hmmm, seems strange to throw the plastic surgery one in there. I can’t wait to tell Dr S that his exalted specialty is lumped in with such ordinary things. 
After checking the boxes and reading the laundry list of symptoms and conditions, I had to give specific detail about any “health concerns.” This is where I’m expecting the giant red “rejection” stamp to hit. The questions:
“#1. During the past three years, have you for any reason consulted a physician(s) or other health care provider(s), or been hospitalized? #2. Have you ever had, or been treated for, any of the following: heart, lung, kidney, liver, nervous system, or mental disorder; high blood pressure; stroke; diabetes; cancer or tumor; drug or alcohol abuse including addiction?”
No amount of creative writing or playing fast & loose with the facts is going to help me here. During the past three years, I have indeed consulted a physician(s) or other health care provider(s) and been hospitalized. Further, I have indeed been treated for cancer or tumor; the jury is still out on the mental disorder and the drug/alcohol abuse issues. I’m thinking those could go either way. 
The phoenix
Posted: September 15, 2011 Filed under: breast cancer, cancer fatigue | Tags: body image after breast cancer, cancer fatigue, DIEP flap, psychological effects of breast cancer, reconstruction, revisions to breast reconstruction, uniboob, young women and breast cacner 10 CommentsYesterday’s visit to the doctor was the usual highlight of my day. We laughed, we sparred, we talked about my new Fiat, and I once again stood buck-naked in front of his omnipotent eyes for my three-week post-op checkup. Here’s where it got interesting: I told him that while I appreciate his valiant efforts in the OR, I’m not happy w the results. Shape, size, asymmetry, bumpiness…. I’m sure I wounded him deeply, but had to get it out there. And of course, it goes without saying that I’m not dissatisfied with his work, quite the opposite, but with the ongoing, multi-step drudge that is reconstruction.
I asked about options if the fat transfer doesn’t yield good results. It’s a relatively new procedure and data is scarce, so it’s hard to predict the final results. But I need options. Can he suck out the fat he’s transferred? Can I go back to being totally flat-chested? Because honestly, I’d rather be flat as a board than have an elliptical uniboob. The cleavage line looks great, but only from a distance, and I’d sacrifice it to get back to the point of being satisfied with my chest.
photobucket.com
I know it’s hard for a plastic surgeon to grasp that a woman in the USA doesn’t want the biggest knockers she can possibly get, but I keep hammering away at the fact that I am indeed that woman. I’m all for a curvy silhouette but do not want big boobs.
To fix the aspects I’m dissatisfied with, we need to inject more fat, which results in a bigger bust. I don’t want that. I’ve said from Day One that I don’t want that. In fact, I think my exact words to the doc in my consultation right after diagnosis were “If I wake up from surgery with DDs I will kick your teeth in.” Direct quote. In fact, I need to get him a little pillow for his office couch with that message needle-pointed on it. That, and my other recurring message to him, also uttered at that first meeting: I know I’m not your only patient, but I’m your most important patient. I have threatened to get that needle-pointed for him, too.
All this talk we Cancerchicks hear about how lucky we are to get new boobs is utter horseshit. I’m on the record saying that is a humongous load of crap. I was perfectly satisfied with my pre-cancer body, and there’s not one thing I can name that is better now. Ok, except for the absence of the tumors that would have eventually spread and killed me. That part is definitely better. And I’m no longer afraid of needles. Having been poked and shot up more times that I could ever count, and with a boatload of port flushes and blood draws and monthly B12 shots and quarterly Lupron shots and injections for scans ahead of me, I don’t even flinch anymore. Not even the thought of a 20-gauge needle piercing my skin and extracting my lifeblood scares me anymore. But conquering the fear of needles doesn’t really count as a way in which my body is better after my cancer “journey.” 
Sausage casing
Posted: September 8, 2011 Filed under: breast cancer, cancer fatigue | Tags: breast cancer in young women, breast cancer reconstruction revision, Medena compression garment, psychological effects of breast cancer, side effects of reconstruction 6 CommentsIt’s been 2 weeks since my revision surgery; the good news is I’m healing. The bruising that I subjected y’all to seeing is much, much better thanks mostly to my stellar lymphedema and massage specialist, Tammy. She did some manual lymph drainage on my bruised areas Friday, and by Sunday the bruising was almost gone. For real. The bad news is that the healing is ongoing. Why is that bad news? Because I’m impatient, man, and I’m ready to be done with this stage so I can get back to my regular life — albeit temporarily, in between revisions — and pretend to be a normal person who’s not affected by cancer.
Yes, I know, I’m far from normal. And yes, I know I’m waaaaaay affected by cancer. And furthermore, I know it’s never over. But I’m impatient nonetheless.
In addition to being an impatient patient in general, I’m so super ready to be done with this latest round of healing for two rather large reasons: it’s perfect weather for tennis, yet I can’t play; and I’m sick to death of the compression garment.
This is what mine looks like — although that’s not me in the photo; it’s someone from googleimages. My garment, which I refer to as sausage casing, comes up higher beyond my waist and goes down lower. It’s basically a thick fabric (mostly spandex but way thicker than workout clothes) with a 4-inch-wide waistband that sits just under my newly plumped breasts and ends mid-calf. It has a zipper on each leg that extends from mid-thigh to the top of the waistband, and multiple hook & eye closures under the zipper. Lovely, huh? I’m not sure which is worse, the fact that it is HOT or the fact that I have to wear it 24/7. It’s still summertime in Houston, with highs in the mid-90s. The sausage casing is not a warm-weather accessory. Both of those facts are sucky to the nth degree.
What’s the purpose of the sausage casing, besides an instrument of cruel & unusual punishment for the unlucky recipient of random gene mutation that causes breast cancer in an otherwise healthy 40-year-old woman? That’s a question I’ve pondered a lot over the last 14 days. The last LONG 14 days.
The theory is that the sausage casing reduces movement of the skin that’s been traumatized/sliced & diced/sucked out/reallocated, et al. Ideally, the skin needs to stay in a compressed state and it needs to avoid any unnecessarily movements, because unnecessary movements can affect internal wounds and get in the way of healing. The garment also decreases swelling and promotes the flow of blood and lymph fluids, working to move the yucky stuff (blood from the massive bruising and other toxins) out of the body.
That’s all well and good, but let me tell you people, the sausage casing is not comfortable. Not one bit. It’s HOT (did I mention that??) and while the spandex helps it look and feel sleek and soft, it’s still thick and tight. It also irritates the back of my knees when they bend, and sometimes it bunches up like old-lady pantyhose and has to be yanked and tugged back into place. I try not to do that in public, but sometimes I can’t stand it. The damned thing is snug enough that one spot on my right hip is caved in (see the right hip area in the photo above). Yep, caved in. And yes, it can be permanent. Dr S was a little concerned about it during my visit yesterday, and if he’s concerned, so am I. He had a solution, of course, but I’m still a bit concerned. His solution? Extra padding, because the sausage casing isn’t enough to deal with. So now, in addition to the sausage casing and its bulky zippers, I have a wad of soft cotton stuffed in the casing, between my caved-in skin and the second-skin of my garment. The wad of cotton shifts around a bit, so I’m constantly having to adjust it to make sure it stays between me and the point of the garment that is caving me in. This means that I’m not only yanking and tugging the sausage casing, I’m reaching in over the waistband to rearrange the wad of cotton. I know, it’s mesmerizingly attractive, right? Stop the ride, I want to get off. Enough already.
I guess it could be worse — I could have the sausage casing on my face:
5-0
Posted: September 5, 2011 Filed under: breast cancer, cancer fatigue | Tags: Boston Red Sox, Jon Lester, non-Hodgkins lymphoma, remission from cancer, Terry Francona, young people with cancer 5 Comments
Red Sox pitcher Jon Lester is one of my heroes. Not only because he’s a bad-ass left-handed pitcher who delivers for my favorite team but also because he’s just celebrated a milestone worth coveting: 5 years of being cancer-free.
Lester was just 22 years old when he was scratched from the Sox lineup in late August 2006 because of back pain. At that point in his rookie season, he was 7-2 and his pitching was on fire. After a few tests, doctors at Mass General determined that his lymph nodes were enlarged, and a few days later they delivered unthinkable news to an uncomprehending pitcher: Lester had anaplastic large-cell lymphoma, a rare and fast-spreading cancer. The Red Sox announced the news on September 2, 2006, and manager Terry Francona said that Lester was beginning a “journey that few us can comprehend.”
I’m almost embarrassed to type the words “being diagnosed with cancer is devastating.” Duh. If only I could invent new words to convey the devastation. If only. For a 22-year-old major league pitcher, I imagine the news was shocking and gut-wrenching, to say the least. As a 40-year-old non-pro athlete, the news of my own diagnosis was shocking and gut-wrenching. Duh.
Lucky (?) for Lester, his type of cancer is non-Hodgkins lymphoma and is highly treatable, with a cure rate of upwards of 80 percent. I’m sure his youth and his physical fitness helped, too, but no matter who you are, the diagnosis is a bitch, and Tito was right, Les was on a journey that few can comprehend.
No one thinks it’s going to happen to them, but cancer bulldozes through millions of people’s lives every single day–atheletes, celebrities, and regular people alike. Sometimes I think: if someone like Jon Lester isn’t safe from cancer, who is??
Not me, obviously.
Lester and I have a similar attitude toward our cancer. “It sucks,” he said in more than one interview. “But you can’t let it define you.”
“I hate hospitals to begin with,” he says. “I hate needles. I hate anything related to doctors. Getting blood drawn every 10 days [during chemo] … it drags on. You’re tired all the time. You want to do stuff, but you can’t. You’ve got to watch where you go because of germs. It’s not something you would wish upon anybody.”
Yep, that’s right.
Lester says as a pro athelete, his pursuit of excellence helped him demand a willingness to accept constant physical challenges, something with which cancer patients are quite familiar. He spoke of his frustration of feeling weak, of wanting to be active but his body saying no. He learned to listen to his body and to accept that he wasn’t in control of every aspect of the treatment and recovery process. I’m no pro, but I know that feeling — of wanting to overcome but being thwarted at every turn but none other than your own body. Suck.
Lester endured 6 cycles of chemo and lost his hair but not his drive. He wanted to pitch again, and to be known as a great pitcher, not as a cancer survivor.
On October 28–barely more than two years after being diagnosed–Lester started and earned a win in the final game of the 2007 World Series against the Rockies. The following May, he pitched a no-hitter against the Royals.
taking the mound for the final game of the World Series
no hitter for Lester!!!
I’d say Lester did it. He’s a pitcher first, and a cancer survivor second. Throw hard, Les!
The penguin and the polar bear
Posted: September 2, 2011 Filed under: breast cancer, cancer fatigue | Tags: cancer battle, courage, e.e. cummings, Mary Ann Radmacher, psychological effects of breast cancer, young moms with breast cancer 8 Comments
Someone very nice sent me a card with this message a while back. I enjoyed the simplicity of the words: matter-of-fact and purposeful without being overly froufy or cheesy. I wasn’t familiar with Mary Anne Radmacher but liked her message enough to find out if she was someone with whom I should be familiar.
She and I have something in common: we love words. On her website, she says: “i have a history of fascination with words, starting from a very young age. my writing reflects philosophies inherent to my being. these include: a commitment to passionate, intentional living; valuing wellness; and embracing the moment.” (she also writes in all lower-case letter, like one of my favorite poets, e.e. cummings.)
I was afraid she was going to get all touchy-feely on me — something I really don’t like, but she reigned it in. I’m so glad. Because I really like her statement on courage, and it’s something I’ve been thinking about a lot lately during recovery mode. This last surgery was harder than I expected, and the recovery has been way more arduous than I imagined. Knowing that this surgery isn’t the last one is rough as well, but I’m trying to be a brave little soldier.
I’ve always equated courage with bravery. To me they go hand-in-hand and seem like very good friends, and they also seem like something one is born with but can develop. Being diagnosed with cancer at a young-ish age is a challenge that draws on all of one’s resources, and courage is at the top of that list. During this “cancer journey” I’ve had a lot of people say things like “You’re so strong,” and “I don’t know how you do this,” and “I’m not sure I could do it.” While I’m very appreciative of the support, being strong or being able to “do this” isn’t for me an acquired skill or a specific endeavour. It comes down to a very simple fact: whether you’re strong or weak doesn’t matter much in a cancer battle. The cancer will do what it’s going to do, and curling up into a little ball isn’t going to make it stop.
Courage, however, does play a role. Not so much in the facing the bad news or dealing with the endless heaps of unpleasantness that comprise a cancer battle; that’s more a question of strength and endurance. Research. Appointments. Decisions. Testing. Pain. Fear. Worry. Medical bills. The heaps are indeed endless. While it certainly does take strength to face a diagnosis, the fact of the matter is that you will hear the doctor’s words and you will see the summary on the pathology report whether you do so with eyes wide open or while sobbing uncontrollably. You will deliver the most unwelcome of news to your circle of friends and family the same way: with a quiet strength or in hysterics.
The message you hear and relay — that you have cancer — is the same regardless of how strong you are. While curling up into the fetal position upon diagnosis definitely is an option, it doesn’t change the message. Perhaps it buys you some time, but the message remains the same. Living with that message and putting its effects into play takes courage.
Fever-free, finally?
Posted: August 31, 2011 Filed under: breast cancer, cancer fatigue, drugs, infection | Tags: Houston medical center, infectious disease, long-term antibiotics, Maria Pace-Wynters, post-mastectomy infection, psychological effects of breast cancer 7 CommentsYesterday was the first day since my surgery–exactly one week ago–that I didn’t have a fever for most of the day. I wasn’t exactly fever-free, as my temp peaked at bedtime, but that’s the best it’s been for one very long week, so I’m claiming it. After coming this close to needing IV antibiotics — again — I’m beyond thrilled to have been (mostly) fever-free yesterday. I’m guessing that the docs in my life would laugh a little, shake their heads, and maybe massage their temples a bit at me claiming yesterday as fever-free. I’m guessing my friends in the white coats would consider my being almost fever-free akin to being a little bit pregnant–it’s an all-or-nothing condition. That’s fine. They can chuckle and shake their heads at me, I’m still claiming it as a victory.
See, fever can indicate infection, and after my surgery last week, the fear of recurrent or new infection abounded. That fear was thick in the OR and it was pervasive in the days after surgery as we waited to see what would happen. It’s still lingering, in the back of my mind and on the fringes of my daily activities. I’m not a big fan of that loss of control. We did increase my course of oral antibiotics — both in duration of course and milligrams per dose. The usual suspects in the roster of awful side effects are back, but that tells me the abx are working. If there was a niggling infection trying to re-establish itself, the mounds of abx I’ve been taking for the last 7 days have contained it. I’m almost afraid to say this out loud, but I think I’m out of the woods.
Can it be? Like the joyous girl in the gorgeous Maria Pace-Wynters art, coincidentally titled “Out of the Woods,” I want to smile big and enjoy the view of the woods from the other side. I want to feel the relief that washes over me as I realize that the 6-day fever has broken, the pain & redness & swelling in the original infection site have abated, and I may be able to breathe easily now.
My infection-induced PTSD makes me wonder if I really can believe that the tide is turning, that I may be out of the woods. It’s been a long, long haul. A super-long haul. Reflecting back on the havoc that the post-mastectomy infection has wrought makes me very uncomfortable. I’m not yet in that happy place, and the calamity is not far enough in the rear-view mirror yet. Instead of feeling enormous pride, accomplishment, gratitude and general kick-ass-itude that it’s over, I’m gun-shy and untrusting.
This time last year, I was fresh out of the hospital, having just served day 27 of intermittent, back & forth hospital stays and at-home IV antibiotics. The last hospital stay to treat the infection was at Methodist in the Med Center, so I’d served time in 3 different hospitals–Memorial Hermann Southwest, Methodist Sugar Land, and Methodist Med Center–which allowed me to sample Houston’s best. I recall the direct-admit to the Med Center for the last stay, late on a Sunday night just before school started. Sweet Dr S had handled the details for me so I had a “fast pass” to get admitted quick, which allowed me to circumvent the circus that is a Med Center ER on a weekend night. Dr S and I were texting back & forth during the speedier-yet-still-complicated process so he would know that I was in the room before he had to get up and leave his family to come see me and get all of our ducks in a row.
I remember being furious about having to go back into the hospital. At that point last year, I’d been on antibiotics all summer, oral and IV, in every imaginable combination. Biaxin. Cipro. Minocycline. Zyvox. Vancomycin. Cefapim. Doxcycline. Bactrim.Vancanese. Levaquin. We were on the cusp of finding the magic bullets that would target the slow-growing and slow-to-kill infection (Bactrim & Minocycline), but it would take time to decimate the wily bacteria, so the infection still had the upper hand. As I settled into my room after navigating the maze that is Methodist Med Center, I was completely and utterly pissed at the ugly-ass artwork in my room. The shoddy impressionist landscape was hideous, the colors were barf-inducing, and the mere site of it reminded me that I was once again a prisoner — of my failing body and of yet another hospital. I couldn’t avoid that uproariously unpleasing “artwork” because it was in my face and I had nowhere to go to avoid it. That framed print became a symbol, a poster-child if you will, for all that had gone wrong last summer, and I was stuck staring at it. If I hadn’t been so ticked and so upset, I would have taken a picture of that “artwork,” and one day it will make me laugh instead of making me want to punch someone. But not yet.
Here’s what I wrote upon settling into that room; note the frustration surrounding the words that described the room but actually meant a whole lot more:
So I got through the masses in the ER pretty quickly and got into my room and thought, yuck, this place is a dump compared to my lovely one-bedroom suite at Methodist Sugar Land. Call me a snob, but I like those hardwood floors and new, unchipped paint. I don’t really need the laminated sign on the wall here reminding me not to leave my dentures on my lunch tray. The view out my dirty window is of a wall, with patient rooms too far away to spy into [one of my pastimes at Methodist Sugar Land]. The chair I’m sitting in to type this is vinyl, and there is a lovely faux-cherry-wood desk with ornate colonial drawer pulls. I could sit there, but the desk chair is super scratched with dingy upholstery on the seat cover. And don’t even get me started on the artwork on the wall across from the 20-year-old bed covered in ultra-scratchy sheets. No wonder people get sick in hospitals. It’s from the decor as much as the bacteria.
I was one unhappy girl.
I was coming to terms with the fact that the infection superseded the cancer in every way. For a while, that was a good thing — being so focused on the infection kept me from thinking about the fact that I was a 41-year-old mother of 2 young kids battling cancer. The cancer was easy compared to the infection. While a cancer diagnosis is one of the scariest things ever, the treatment for and eradication of that cancer was, for me, much more logical and linear than the infection. The cancer left me flat-chested, but once the tumors were removed and the lymph nodes declared clear, it was done. My game plan was defined: a 5-year course of Tamoxifen for adjuvant therapy along with hormone suppression to snuff the cancer’s fuel. The cancer battle was over and the treatment had begun, but the infection war hadn’t even revved up yet. Little did I know that more than a year later, I’d still be fighting that war, and that sometimes the infection would gain ground and force me to retreat.
The infection left me with a hole in my newly flat chest — literally. The excised tissue created a wound that measured 5.6 cm long and 3 cm wide. Grab yourself a ruler and feast your eyes on those dimensions. That bad boy took 8 weeks to heal, almost double the healing time required by my bilateral mastectomy. I’d faced my diagnosis, done my research, made the hard decisions, endured the systematic removal of both breasts, and was still standing. The infection, however, was a whole ‘nother ball game. There was no logic and nothing was linear — it was a guessing game. Educated guesses by a crack team of infectious disease docs, but a guessing game nonetheless. Will this combo of antibiotics work? How long will I need to stay on them? How will we know if they’re working? What are the side-effects of long-term abx therapy? Will I ever get my normal life back? The questions were many, the answers were few. I wrote this after one particularly frustrating day in the infection war:
All this talk you hear about being a pro-active patient, being your own advocate, researching and digging up as much info as you can and thinking for yourself — forget it. Today is one of those days that makes me wish I was a sheep. I just want to follow along and do what I was told. Except I can’t. It’s not how I’m made. So I continue to ask questions and solicit advice, all the while feeling like I don’t have all the puzzle pieces. Sometimes there are a few pieces missing, or you have to wait a while for them to fall into place. You can’t force it, although I want to. I am impatient and a forcer. An impatient forcer.
And I’m still waiting for the pieces to fall into place.
Meanwhile, I will feast my eyes on another gorgeous piece from Maria Pace-Wynters’s collection. This one is titled “Unseen Beauty,” and my eyes are open. 
Slacker mom
Posted: August 23, 2011 Filed under: breast cancer, cancer fatigue, kids | Tags: back to school, Domo, first day of school, kids dealing with mom's cancer, moms of young kids with cancer, psychological effects of cancer, Red Sox, slacker mom, Tooth Fairy 7 CommentsThat’s me. I admit it.
Yesterday was the first day of school, yet did I take one photo of my kids before they descended into the joys of another school year? Nope. Not even with my iPhone camera. How lazy & shiftless is that?
It occurred to me at some point last night that this will be the first year on record without a back-to-school photo, and I suppose I could have hauled Macy out of bed and pried Payton away from ESPN long enough to recreate a photo. But it would have been dark on the front step, where we always take the photo, and Macy would have had to change out of her jammies and back into her school clothes, which were no doubt in a heap on her bedroom floor. I had to admit defeat and accept that it wasn’t going to happen this year. A second-day-of-school photo seems too lame to contemplate, so this will be the year with no back-to-school photo. Macy’s entre into 4th grade and Payton’s into 7th will go unchronicled for time immemorial.
And yet, I think we will survive.
I’ll throw in a classic back-to-school photo, from Macy’s kindergarten and Payton’s 3rd grade year. That’ll do, right?
Chalk it up to cancer fatigue, or to pre-surgery jitters, or to me being a slacker mom. Either one. The reason isn’t all that important, really. The kids don’t really care if we have a photo, and I’m pretty much over it as well. I will state for the record, however, that Payton did indeed wear a Red Sox shirt for the first day of school, as has been his tradition since kindergarten. Some things never change. 
If you thought I was done with my slacker mom antics and were ready to forgive me, hang on. True, it’s been a rough ride. It’s been a long year, full of medical drama and pain & suffering. I feel perfectly comfortable saying I deserve a free pass from juggling all the balls, getting everything right, and catering to everyone’s individual needs (ok, maybe that last one is going a bit far; I’m not much of a caterer).
However, life goes on and I’ve yet to find the slot into which I insert my free pass. I’m looking for something like the coupon slot at the grocery store self-checkout, but I haven’t found it. Also curiously absent is the “make it so” button — push the button and make it so, whatever “it” happens to be. In this case, it would be the back-to-school photo. I would push the “make it so button” and a photo would fall out of the sky, into my cupped hands. If only.
I certainly needed the “make it so” button last night, when Macy’s loose tooth came out just as she was getting into bed. She has been wiggling it for days, and it was hanging by a thread, or a root, or whatever loose teeth use to hang on. She emerged from her bedroom clutching a slightly bloody molar, grinning hugely and aquiver with anticipation about the upcoming visit from the Tooth Fairy.
Uh oh.
Slacker mom was not prepared for this. See, Macy and the Tooth Fairy have a “special bond” as she described through her tears this morning. The Tooth Fairy doesn’t just leave a few bucks or some loose change, like she does for most kids. Her Royal Dental Highness knows that Macy isn’t at all concerned with or motivated by money. She likes stuff. She’s funny and quirky and a bit outside of the box. And the Tooth Fairy is usually well-stocked. Lip gloss, a stuffed animal, a stationery set…things like that rock Macy’s world. The Tooth Fairy usually picks up such items throughout the year, as she’s running her errands and comes across something that she knows Macy would like. But the Tooth Fairy was ill-prepared this time. Even though she knew that tooth was loose, the light didn’t come on and make her think, hmmmm, I better make sure I have a nice prize for Macy when that tooth comes out.
So the Tooth Fairy was forced to resort to the lowest common denominator, and she left a $5 bill. Macy was not amused. See, she had written a note to the Tooth Fairy, which she always does, and asked for a unicorn Domo. I imagine the Tooth Fairy said WTF?? I know I did. I’m fairly certain that a unicorn Domo does not exist. Or it does, but only in Macy’s imagination. I guess it would be a cross-breed between a unicorn and Domo. Interesting. But not readily available, and certainly not at 9:30 at night. 
See my dilemma? I had no problem finding images of these guys on googleimages. I even found a t-shirt of Domo riding a unicorn, which I was all set to order pronto but it’s sold out online. Of course it is. Who wouldn’t want a t-shirt like this? 
If I find one for Macy, I may have to get one for me too.
I can see why the Tooth Fairy flubbed this one, big time. Some requests are too tricky and unique, even for the TF.
Macy wrote another note, which she expects the Tooth Fairy will collect tonight as she makes her rounds. The “special bond” between Macy and the Tooth Fairy is splintered, but not beyond repair. 
The Pink Underbelly 