#nofilter

Posted: November 6, 2014 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , | 10 Comments

What kind of moron schedules an appointment with a new specialist while recovering from yet another revision to breast reconstruction? Probably the same moron who thinks yet another revision is no big whoop and expects recovery to be swift. Will I never learn??? And the post-surgery antibiotics are wreaking their usual havoc and using black magic to cause me — a non-meat-eater and pet-pig owner — to crave ham. Ham. Of all things.

Dr E, the neurologist I saw yesterday for the mystery neuropathy I’ve been having in my hands, offices in the medical plaza adjoining the hospital to which I was admitted in early June 2010 for the nefarious post-mastectomy infection. A small PTSD episode may or may not have occurred inside that plaza at 8:30 a.m. yesterday, in which I stepped on to the wrong elevator en route to Dr E’s office and found myself not in the plaza but on the 9th floor of the hospital. I was transfixed and rooted in place, knowing I was not in the right spot but temporarily unable to grind the right gears and get out of there. I stood there, sweating profusely and shivering alarmingly near a giant window overlooking the freeway that leads from the hospital back to my home, in the Land of Sugar. The dregs of a rainy-day morning rush hour in Houston creeped along that freeway as I watched it, momentarily paralyzed with the searing memory of looking out that window on day 6 or 7 of that hellish hospitalization. My kids had just finished their second- and fifth-grade years of school; I had turned 41 just a week before that hellish hospitalization. Summer glistened ahead of us as I began a protracted and ugly battle against a rare and nasty infection following a cruel and unexpected cancer diagnosis. If someone had predicted that nearly 5 years later I would be paralyzed simply by being in that same hospital, I would have rolled my eyes and scoffed at that lame-0 idea. Suffice to say, no eye-rolling or scoffing occurred.

All these years later,  just being in that same hospital brought it all back. It took a few moments to snap out of it and load my shattered self back into the elevator to retrace my steps into the medical plaza and away from the hospital. Why was I catapulted back to that unpleasant and unwelcome era in this long, ugly cancer “journey?” I’ve no idea. No matter, I suppose, as the take-away is that after many hours and a full sleep later, I’m still reeling.
Arriving in the neurologist’s office, I dutifully handed over my new patient paperwork and was briskly admitted into an exam room. I read most of this article in Men’s Journal about when to say no to your doctor. Ironic. When Dr E walked into the room, I joked about that irony and was met with stone-faced silence. Perhaps the newest doc in my tribe doesn’t find me, or that article, very funny. I briefly considered ripping out the article, to reread it later and decide if it was indeed ironic, but then remembered I brought a small purse and would have to fold the ripped-out article. Not worth it.
Within mere minutes of meeting me, Dr E proclaimed that I have no filter (’tis true, although I thought I was on my best behavior). So he doesn’t get my humor (wouldn’t be the first man to find himself in that situation), and I briefly and un-filteredly considered whether he could tell I was contemplating lifting his magazine article. No time to explore that, though, because he asked if I’ve been evaluated for ADD, then moved on to ask a series of pointed, unpleasant questions about the exact nature of and appearance of the neuropathy (e.g., when was the exact moment I recall experiencing neuropathy? How would I know — I have ADD.) He delved into my complicated, checkered medical history. After a thorough scouring of my history and timeline of current symptoms, he vowed to get to the bottom of my problem. He asked if I could submit to a series of tests in an hour and directed me to the coffee shop in the lobby. I filtered myself by just listening instead of telling him I know exactly where the coffee shop is and why I possess that knowledge. How ya like my filter now???
Forty-five minutes later, I returned to his office and was shown into a small, airless room and instructed on how to take a computerized test to gauge my attention span. I can’t recall the exact acronym of this “continuous performance tests” (hellooooo, I have ADD, remember??) but the point is a very simple response (in this case, clicking a button) is required after a simple stimulus (in this case, a rapid-fire series of black rectangles appeared on the computer screen in random order. Each rectangle had a small white square in it; sometimes the white square appeared in the top of the black rectangle, and other times it appeared in the bottom of the black square. Each time it appeared in the top, I clicked the button). This went on for 20 minutes. For 20 minutes. For 20 interminable minutes, my eyes watered and blurred. My thumb clicked the button. I slumped and straightened in the seat. I wrote and re-wrote a blog post, then promptly forgot what it contained.
squirrelI sweated and cursed the small, airless room. I wondered how much time had elapsed. I wondered if clicking that button was contributing to the neuropathy in my hands. I rebelled against the test directions to avoid looking for a pattern and guessing when to click the button. I composed a grocery list. I fashioned a crude fan from a piece of paper to stir the hot, stale air, not once taking my eyes off that blasted screen. I thought about what to serve my kids for dinner that constituted a nutritious meal yet required little or no work from me. I vowed to ace that test, but grew bored of and distracted from it post haste. Hence the no filter.
My 20-minute penance done, I entered the next level of hell: the shock test, aka the nerve conduction velocity test. Yuk. I’ve endured some pretty yukky medical procedures in my day, but this one was yukky in its own special, unique way. Long story short, the nerves must be toasty warm to be shocked and measured, so I had to get under an electric blanket while wearing a paper gown. I had to keep my feet covered, which is one of my versions of personal hell, and I suppose Dr E would categorize that revelation as further evidence of me having no filter. Fine, that’s fine. I don’t like my feet covered. And I don’t like being under an electric blanket preparing to have my nerves shocked. Whatev. Personally, I believe filters are way, way overrated.
After I told the the nurse that putting a menopausal woman under an electric blanket is seriously not cool, she hooked up electrodes to my fingers, palm, wrist, forearm, bicep, and neck and shocked me repeatedly. Think of hitting your “funny bone” again and again while sweating under an electric blanket with a moist paper gown stuck to you and your feet protesting the claustrophobic conditions, and you are there. You get the gist. Except it’s not just your “funny bone” that smarts from the shock; it’s more of a full-body twitch. When the larger nerves were to be shocked, the nurse instructed me to take a deep breath and let it out slowly. Nothing good ever follows being told to take a deep breath and let it out slowly. Nothing. I defy anyone to find anything good. With those deep breaths, I wanted to be like this:

googleimages.com

googleimages.com

But instead, I was like this (pardon the profanity; it’s fitting and again, another example of me having no filter):

googleimages.com

googleimages.com

Shock after shock. And I submitted to this test willingly and within my right mind??? One or two shocks is doable. But nearly an hour of it, on both sides of the body? Filter this, people. I kept thinking, at least there are no needles involved.
Once the shocking was over, the nurse said to relax and wait for the doctor, but please stay covered up because he had one more test to administer. I honestly thought about shucking the blanket off, peeling the sodden paper gown from my stanky body, and getting the hell outta there before Dr E had a chance to reappear. However, I was a bit curious about how I did on that computer test, so I stuck around.
Remember the foolish, filterless goofball who thought, at least there are no needles involved? Guess who ended up with a needle stuck in a nerve ranging from fingertip to neck on both sides of her body? Yep. At that point, I was exhausted, my eyes hurt, my body pinged from having been shocked, and my dignity had long left the building.
Dr E pronounced me to have been through the proverbial wringer, both that day and for the last several years. He described the extensive nerve damage I have to both wrists, as well as a lingering muscular issue in my right shoulder. He gave me solutions, both pharmaceutical and holistic. He talked a lot about genetics and its role in our ongoing health, and asked me to come back in two weeks. I agreed, as long as there were no shocks involved. I wanted to ask him to commit to that in writing, via a binding contract, but was trying to use my filter.

Resilience? Not so much.

Posted: February 5, 2014 | Author: | Filed under: Uncategorized | Tags: , , , , , | 9 Comments

Today has been such a sad day.

My friend suffered a tragedy, and I can’t get it out of my head. He had to put his 10-year-old dog down a couple of months ago because she had cancer (stupid fucking cancer, can’t even leave our beloved dogs alone). Lady, his 3-year-old dog, was moping and lost without her companion, so my friend decided to get a puppy.

He did everything right: researched breeds and breeders, readied their home for the new arrival, and began training the pup the very day he arrived. My favorite girl and I had the honor of driving to the airport to pick up the new puppy while my friend worked (we have puppy fever…bad!). We bonded with that little darling in the car, and my girl picked out a squeaky toy a few days later for the pup. My friend and I discussed the pup at length, every day. We oohed and aahed over puppy pics and laughed at his antics. I’ve never seen my friend so elated and so happy.

When he got home from work yesterday, he noticed that Lady and the pup didn’t greet him at the gate. He went into the house and noticed that Lady and the pup weren’t wiggling in anticipation at the back door. When my friend went into the back yard, he found out why: the pup had drowned in their pool. He was floating belly-up in the cold, unforgiving water.

I’m so sad. My friend is devastated. Crushed. Beyond sad.

He and I texted back and forth 100 times today. He vented, and I murmured words, worthless and meaningless words. He expressed his anguish, and I texted back trite blobs of nothing. He admitted his guilt at having stayed late at work instead of rushing home to check on the pup, and I sent blah-blah-blah back to him. He confessed that he couldn’t stop crying, and I texted back virtual hugs. He raged at the unfairness of the situation, and I replied with “life’s not fair/there’s no meaning/nothing makes sense/it’s so cruel, etc etc etc.”

This man lost his father — to cancer, of course — nearly 25 years ago. He and I have an understanding about hard times and grief and the random cruelty of life. We can talk to each other in that way of members of the same club: stripped away, raw, honest, and brutal. We are both shameless animal lovers who have been accused, more than once, of liking critters more than humans. This is a terrible, terrible blow.

Beyond the text-a-thon, I felt helpless. My brain won’t stop returning to the terror that was the pup’s last moments of life. The startling plunge into the pool. The cold water. The frantic flailing. The fear and the struggle. The pain and the terror. The image of that lifeless pup floating in the pool has haunted me all day, and knowing just how anguished my friend is adds insult to injury. I did the only thing I know to do in the midst of loss and tragedy: I got in the kitchen and cooked. Chicken noodle soup, jalapeno cornbread, fruit salad, Greek-style green beans, and insanely fudgey brownies for the family, and sweet-potato dog biscuits for Lady. She needs a treat, too, after the senseless death of  her new best friend.

Recently I wrote about the idea that what doesn’t kill you makes you stronger. I’ve been thinking about this, too, today. As I drove to my friend’s house to deliver the food, I was struck by something: I would expect that having traveled down some rocky roads (my mom’s death 8 years ago, my own cancer “journey”), I would be steeled to tragedy. I would expect to be hardened to the shitty things life throws at us. I would expect to be stronger. Tougher. Better-equipped. But I’m not.

If anything, just the opposite is true. Hard times, ugly challenges, and crushing loss are harder, not easier, to handle.

Rest peacefully, sweet pup. We didn’t know you very long, but we loved you gigantic paws, your piercing blue eyes, your high-pitched howls, your feisty spirit, your stubborn streak, your easy-going personality, and your sweet, sweet self.

Dear Me,

Posted: April 7, 2013 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , | 11 Comments

Day 6 of the WEGO Health Activist Writer’s Month Challenge nearly made me give up on the daily task of blogging about my “condition.” I don’t like my “condition” and I don’t like the touchy-feely side of dealing with that “condition.” I like to keep my word, though, and I said I would take on this challenge, so here goes.

Today’s prompt: Write a letter to an older you. What lesson do you want to make sure you remember?

Well, with my dilapidated body, blown-out knee, and menopause-induced lunacy, the older version of me scares the hell out of the current version of me, so I’m going to write a letter to the younger version of me.

Dear Younger Me,

Listen up, missy: that college dream of yours to light Madison Avenue on fire with clever advertising campaigns isn’t gonna happen. You don’t like the Big City — too many people and way too many germs. That other dream of writing children’s books isn’t going to happen, either. You do end up reading a whole lot of good ones, though, to a couple of precious kids who look so much like your baby pictures it’s scary.

Your smart mouth will get you into a fair amount of trouble. I’d tell you to be careful, go easy, and use restraint, but we both know you’d flip me the bird and keep right on sassing. I can tell you that eventually you do learn the fine art of holding your tongue, but it will never come easy.

That sweet, loyal, smart, cunning and unmatched yellow dog who grips your college-aged heart will never let go. She will protect you, and then your children, for nearly 15 years. She will guard the entrance to the nursery and sleep under the crib. She will show you her back when you get out your suitcase, because she knows you’re leaving, if only for a few days. Her time on this Earth will grow short but she will stick it out longer than anyone expects because she will insist on seeing you through an even rougher patch: the death of your sweet mama.

Guess what, girlie? Your sweet mama keeps a tight grip on your heart, too. Not a day passes without you feeling the loss, in big ways and small ways. (Note to self: don’t give up on trying to make her pie crust. It won’t ever be like hers, but keep trying.)

Just about the time cancer steals your beloved mama, you’ll start getting an annual mammogram. You’re ahead of the schedule thanks to that mama-stealing cancer, and every year the mammogram will come back funky. Don’t settle for the “dense tissue” rationale. There’s a tumor growing, and it ends up taking up a lot of space, both in your body and in your life.

Look, I know you’re going to be busy living your life and raising those two little kids when the diagnosis comes, but please, brace yourself, because it’s going to get ugly fast. And say a little prayer to the environmental-services gods who control your operating room on the day of your mastectomy; maybe we can avoid that post-mastectomy infection that will reorder your life. And BTW, the bilateral mastectomy was totally the right choice. Good girl for following your gut. There will be no hint, not a single whiff, of cancer in your left breast, but it’s there.

Give up right now on thinking your cancer “journey” will be “one and done.” It will be more circuitous than you can ever imagine, and it will change you in ways you won’t discover until years later. Oh, and before you even begin that circuitous journey, you’re going to have to deal with melanoma on your right foot. I know, who puts sunscreen on their feet, right? Hate to tell ya, that even though you catch it early, the surgery to remove the melanoma will be the most painful thing you will experience. Yes, it’s worse than childbirth and a bilateral mastectomy. Oh yeah, about childbirth–when your water breaks, the baby is coming. Yes, he’s early. No, you haven’t finished the birthing class or packed your bag, but it doesn’t matter. And you’re going to get teased for decades for reading ahead in that “What to Expect” book on the toilet in the middle of the night when your water has broken and your much-better-prepared spouse sleeps peacefully, unaware of your foolishness.

It turns out fine, the baby is healthy (but hard-headed). Even the cancer thing is manageable. Not easy, but manageable. I think we both know you can handle it. You’re going to learn a lot, whether you want to or not. Your limits will be tested. You’re going to make some true and life-long friends along the way. You’re going to unload friends, too, in one of many hard-learned lessons. You see, there are people who are willing to give what they want to give, not what you need. This is a very important distinction. Trust me, you’re much happier without ’em. A couple more pieces of advice: first, don’t ignore that knee pain while you’re running. Stretch before and after you pound the pavement. Listen to your body. Pain is its way of saying something is wrong. Ice your knee after each run. I know it’s a hassle, but so is living with constant pain. Years down the road, you’re going to be embarrassed by how you hobble down the stairs like a woman twice your age. You’re going to be frustrated by the ways in which your body fails you. I don’t have an answer for how to deal with that, because I haven’t figured out how to deal with that. I do recommend drinking champagne as often as you can. I don’t have to tell you to never, ever pass up an opportunity to drink some bubbly. The lesson I want you to remember is that the sound of that popping cork will soothe your soul, every time.

Love,
Me

 

 

 

WEGO HAWMC

Posted: April 2, 2013 | Author: | Filed under: breast cancer, menopause | Tags: , , , , , | 5 Comments

day2

 

The WEGO HAWMC is quite a mouthful! WEGO Health describes itself as “social media’s most active online health community — Health Activists. These influencers, organizers, connectors, leaders and contributors are passionate about helping others lead healthier lives.” WEGO Health Activists have thrown out a challenge: the HAWMC, or Health Activist Writer’s Month Challenge. It’s a post-a-day challenge taken on by several bloggers I greatly admire. One of them asked if I was planning to participate, so here we are.

I missed Day 1, so will start with Day 2, which is pretty scrambled logic for this Type-A girl, but part of the challenge is thinking — and blogging — outside of our comfort zones so I guess I’m in.

Today’s prompt:

Introduce your condition to other Health Activists. What are 5 things you want them to know about your condition/activism?
Yikes. I hate to think of breast cancer as “a condition” but I suppose it is. I certainly don’t think of myself as an activist, but for these purposes I’ll assume I am.
Ok, so introducing y’all to breast cancer. Y’all, this is breast cancer. Breast cancer, this is y’all.
It’s safe to say that everyone knows about breast cancer, thanks to the pink-ribbon brigade, so on to the 5 things you need to know about breast cancer. Those who have it already know. Those who care for/care about someone who has it already know, too.
#1 — “Early detection is key.” Yes, and no. Early detection is important in that it can prevent breast cancer from spreading and progressing to a more complicated prognosis and a less favorable outcome. But it also leads to overtreatment and contributes to our skyrocketing health-care costs.
#2 — “Breast cancer is a “good” cancer. This is rather loaded. Yes, it is “good” in the sense that it occurs in a body part that is nonessential to sustaining life, and in a body part that can be removed, ostensibly also removing the cancer. But let’s face it, no cancer is a good cancer. And while have a lumpectomy or mastectomy is perhaps easier than removing a lung or other vital organ, the aftereffects for women are brutal, both physically and emotionally.
#3 — “Taking Tamoxifen every day for 5 years is a pretty easy way to manage the disease.” Tamoxifen is rough. Its side-effects are numerous, and even if a women suffers just one or two of those side-effects, they’re quite disruptive. And quite sucky. For those of us diagnosed before menopause, Tamoxifen fast-forwards us to the land of hot flashes, night sweats, mood swings, and other lovely challenges. Within days of starting my Tamoxifen, brown spots appeared on my face. My skin grew noticeably thinner while my body tried to grow fatter. My anxiety level soared while my endorphins crashed.   Having to remember to take my little white pill every day stresses me out: taking it ensures these awful side-effects, but stopping it puts me at risk of recurrence. What part of this is easy??
#4 — “Your breasts don’t define you.” True. Very true. This is true for all women, whether they have breast cancer or not. Huge strides have been made in women’s rights and it’s a wonderful thing that society “allows” us to be more than window dressing. But pick up any magazine and look at the ads or watch any random commercial or walk through any suburban grocery store and notice the boobs. They’re everywhere. And they’re big, round, and perky. If we aren’t defined by our boobs, then why is losing them so traumatic? If we aren’t defined by our boobs, then why do more than 300,000 women a year in the United States undergo elective, cosmetic surgery to enhance their breasts?
# 5 — “Being diagnosed with cancer makes you stronger.” Perhaps in some ways it does. I am no longer afraid of needles after the bazillion shots and injections I’ve received, and can now give myself a shot if need be. I barely flinch when the phlebotomist pierces my skin with a wide-bore needle to extract a blood sample. I know that I can endure an awful lot — physically and mentally. But did I need to be diagnosed to become stronger? Doubtful. And that newly gained strength is a pittance compared to the things that cancer costs me — physically, mentally, and financially.

 

48

Posted: March 20, 2013 | Author: | Filed under: cancer fatigue | Tags: , , | 20 Comments

 

Apologies if you receive this post twice; something went wonky and the post disappeared. Here it is again. IMG_1031

On this day 48 years ago, an accomplished and driven schoolteacher from humble, rural beginnings married a confident, athletic Greek who was making his way in the petroleum engineering industry. The mother of the bride had passed away nearly 15 years before this wedding. The father of the groom, who had immigrated to the United States from Greece with limited funds and even less English in his vocabulary, died before being able to watch his son’s life unfold with his new bride.

That bride’s life was cut short, too. By cancer. Stupid cancer. While that bride lived to see her son and her daughter into adulthood and she welcomed and adored four grandchildren, her life–and her marriage–ended too soon. Stupid cancer.

That bride was my sweet mama, and I miss her dearly every single day. I’ve written about this topic in this space a lot. And I will continue to do so. I know my dad misses her every single day, too. He still refers to her as The Bride. In caps. I’m sure he’s missing her even more than usual today. Because today he should be celebrating with The Bride. They should be celebrating 48 years of marriage and a life full of happiness. She’d be laughing right now, recalling her simple wedding and her sweet pale yellow suit and pillbox hat. She’d be self-effacing about the number of years that have passed and the wrinkles etched in her face and the extra pounds settled around her middle. She’d be tempted to surrender the battle against the grey hair, but would continue seeking the ash-blonde color. And she’d be infusing our lives with her unique blend of meddling, hovering, and loving.

Happy anniversary, Mom.IMG_1032

Words of wisdom for the newly diagnosed

Posted: October 29, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 23 Comments

A dear friend of mine asked me to compile a list of things to know when facing a cancer diagnosis. A friend of hers is newly diagnosed with breast cancer, and so my friend turned to me for advice for her friend. While I am by no means an expert, I have walked a mile or two in the pink shoes, so here’s my list. Readers, please chime in with your advice.

1. Don’t panic. I know, easier said than done. Hearing the words “You have cancer” is scary, no doubt about it. No matter where you are in life, it’s the one thing no one wants to experience, and yet more and more people are finding their lives turned upside-down by cancer. The American Cancer Society estimates that more than 200,000 women in the United States will face a breast cancer diagnosis each year. Looking at your diagnosis, treatment, and surgery options may seem overwhelming, so break it down into manageable pieces.

2. Keep a notebook. Being a cancer patient is a full-time job, and like many other jobs, it involves a lot of paperwork. Get a 3-ring binder and some divider tabs and set up an organized system to track your pathology reports, insurance statements, notes from doctors’ appointments, and research. Ask for copies of everything from your doctors. Like it or not, you need to become your own advocate.

3. Figure out how much information you’re comfortable with and go no farther. I’m an info junkie and have a deep-seated need to know as much as I can about my cancer. I ask lots of questions at my doctor’s appointments and want to look at the ins and outs of all the issues. I watched videos on youtube of the different surgeries I would have (bilateral mastectomy with tissue expanders then DIEP reconstruction and several revisions to the reconstruction.) While a deluge of info works for me, others may prefer to work on a “need to know” basis and to take sips instead of gulps when it comes to the facts & figures of cancer. Decide what level you want and don’t venture beyond that unless you’re comfortable doing so. Also figure out how much of your story you want to share. I didn’t set out to write a blog, but found it to be the best way to update my peeps on my status. Once the cancer morphed from the star to more of a supporting role in my life, I realized that blogging about it is incredibly therapeutic for me. That’s a personal choice, however, so don’t feel that you need to broadcast your status.

4. Educate yourself so you can be the decision maker, then follow your gut. This is your show, for better or worse, and you must be the one to run it. While it’s perfectly acceptable to solicit opinions and to ask your docs what they would do if in your shoes, ultimately the decisions that must be made are yours. And there will be a lot of decisions to make. I remember wishing there was a manual for this part of the cancer “journey” that would tell me what to do. Alas, no such manual exists, so it was my job to weigh the facts when deciding on surgery and treatment. The decisions (lumpectomy vs mastectomy, chemo or no chemo, Tamoxifen for 5 years to reduce recurrence odds or roll the dice?) are big, and the stakes are high. Do your homework then trust your instincts.

5. You gotta love your doctors. Or at the very least, you gotta respect them. Even if your personalities aren’t aligned, you want to feel confident that he/she is the best at what they do. If you don’t love him/her or feel unsure about his/her abilities, keep looking. Ask for recommendations from people and doctors you trust, but then decide for yourself if it’s a good fit. One of the oncologists I visited came very highly recommended; everyone and their brother had been to this guy and respected him to the moon and back. I wasn’t crazy about him, though, and didn’t relish the idea of a long-term relationship with him. And his office was depressing — morose decor and outdated, muted colors that dragged me down every time I was there. This made me realize that I needed to look at the whole picture — does the office make me more nauseated than the proposed chemo? are the front office staff members courteous? does the waiting area suggest chaos or tranquility? what is the average time spent waiting to see the doctor? how responsive is the nursing staff to your phone calls, questions, or concerns? what system is in place in the event that my doc is unavailable? Remember that they work for you, not the other way around, and if you’re not getting the care you feel you deserve, you have every right to speak up.

6. Avail yourself of another set of ears. As much as I hated being dependent on others (see number 8 below), it was crucial to take someone with me to my doctors’ appointments. In the beginning, especially, there’s a ton of information being bandied about, and most of it is very emotionally-charged, technical, or hard to process (or maybe all 3); having someone else there to listen and take notes was a must for me. Even now, 2 1/2 years later, I still take my trusted sherpa with me to my checkups and often have to text her after the visit to confirm what the doc said about a particular issue. My brain gets very full very fast with all the cancer business, so I need my sherpa to lend me some of her brainpower, and my memory took a beating from the stress & strain of all the cancer fallout. Having someone else along to recall all the little details makes a big difference.

7. Talk openly with your kids, if you have them. They’re more observant–and resilient–than you think, and conversations about cancer will dominate your life at first, so trying to hide it from them is a bad idea. Explain it to them according to their age and ability to understand. My kids were 8 and 10 when I was diagnosed, and I told them that my doctor found a cancer in my breast that needed to be removed with surgery, but that once the surgery was over, the cancer would be gone and I would be around for a long, long time to harass and embarrass them. I said that I would need to lay down and rest a lot, but that it was temporary and once I healed, I would be ok. My 8-year-old accepted that as fact, while my 10-year-old asked repeatedly if I was sure I wasn’t going to die. He needed more reassurance, so I took him to my breast surgeon, who explained the same thing I’d explained, but hearing it from her, in a more clinical setting, reassured him.

8. Let people help. Man oh man this one was so hard for me. I don’t like depending on others, and I don’t like accepting help. However, I learned real fast that I needed to let go and get comfortable with delegating and giving orders. It was hard, hard, hard for me. But I realized that many people wanted to help, and that because they felt powerless in many ways, allowing them to bring a meal or pick up my kids allowed them to participate and made them feel good for helping. For those who are the ones wanting to help, a little piece of advice: don’t ask what you can do to help, and don’t say, “Let me know if you need anything.” I was so bamboozled by all things cancer that I didn’t know what I needed some days. Volunteer something specific, i.e., I’ll come walk your dog, or I’ll drive you to your doctor’s appointment, or I’m coming over to vacuum your house and fold your laundry.

9. Nix the pity party. Another great piece of advice from my amazing breast surgeon. She allowed that there would be days in which I didn’t want to get out of bed, but she put a time-limit on it. She gave me 3 days of wallowing, and said if I felt like I needed more, to come see her and we’d talk. It’s tempting to wonder, and even ask, Why me? But the answer inevitably will be Who knows? so ya might as well get up and get on with it.

10. Limit your exposure to anyone in your life who is negative or not supportive. Trust me, people will come out of the woodwork when they hear through the grapevine that you “won” the cancer lottery. You will likely hear all manner of advice and anecdotes, most of which are neither helpful nor amusing. Also trust me that you do not need to hear about how your next-door neighbor’s brother’s boss’s wife had the same kind of cancer you’ve been diagnosed with, and she was sick as a dog and bald as an old man all through chemo and then died a year later. I repeat: you do not need to hear this kind of talk. Distance yourself from anyone who brings that kind of junk into your yard. I had to tell a few people flat-out that their diarrhea of the mouth was not helping me and that if they couldn’t think of something constructive to say or something banal upon which to comment, they could just keep on walking. You will learn who your real friends are, you will likely make some new friends, and you may even find yourself outgrowing some friendships along the way. All of this is ok. Don’t be surprised if you have friends who can’t be bothered to listen to you vent or who are afraid that your bad luck will bleed over onto them. Don’t be surprised if you have a friend who backs out of a commitment to help you in your cancer “journey.” The sad truth is some people are fair-weather friends, and cancer can be a blustery wind that uproots the seeds of friendship. The good news is that cancer can also bring people into your life just when you need them most. Two of my dearest friends are those I was merely acquainted with pre-cancer, but whose kind hearts and fine character led them to me in my time of need, and by my side they have remained.

O-O-O-Oprah!

Posted: October 9, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , | 12 Comments

My bestie Yvonne and I went to see Oprah on Friday, and wow, wow, wow, what an event! The Queen of the World brought her road show to Houston to tape 4 episodes of LifeClass, a show on the OWN network. Lifeclass is described on her website as “a program that showcases all of Oprah’s lessons, revelations, and aha moments over the past 25 years broken down to help make your life better, happier, bigger, richer, and more fulfilling.”

Sounds good, right?

She and her crew travel around the country and, along with a co-host who is the resident expert on the topic du jour, teach the rest of us how to live our best lives. It’s a social networking explosion with participants joining in from across the globe via Skype, and the audience members are heartily encouraged to post on Facebook and Twitter while the shows are being taped.

Yvonne spotted the chance to enter the lottery for tickets to the 4 shows being taped last week in Houston, and when she came up the big winner she invited me to be her date. We had such a fun day — in typical Texas fashion, we started early and ended late.

About our pre-Oprah lunch at the Backstreet Cafe, I have one word: yum.

We both chose the crab salad, and I’m so glad we both ordered it or we might have come to blows over it. I love Yvonne way too much to fight her, but yes, it was that good. It reminded me of the famous crab towers our dear friends the Cremers fed me on one of my first outings after my double mastectomy. The Cremers’ version has more avocado and more citrus, which gives it a slight edge, IMHO. 

Tummies full, we headed to the Hobby Center for the main event. We were instructed to arrive early and wear bright colors, which look best on TV. Audience members have the opportunity to fill out a questionnaire and share things from their personal lives in hopes of being part of the show and interacting with Oprah and her co-host. Yvonne and I declined; I figured I get all the therapy I need by spilling my guts and ranting about life’s injustices on this little blog. I don’t need to be on TV with Oprah and her resident guru.

The set was rather minimalist, with a simple white table and 2 white rolling chairs that look like something you’d see in a home office. Several screens lit up the backdrop: one devoted to the live Twitter feed, one for the Facebook posts, a couple for quotes as the show progressed, and a big one for the Skype participants. The lights were quite bright, and I kept thinking they would dim as Oprah and her guest came onstage, like in the movie theater. They did not. 

Before Oprah came onstage, her senior audience supervisor, Sally Lou, came out to read us the fine print and go over the rules, then get us fired up for Oprah! Sally Lou was perky and funny and incredibly energetic, especially considering they had already taped 2 shows with Joel Osteen that morning. She wrangled the crowd and had everyone hootin’ and hollerin’ when it was time for Oprah to appear. 

The moment in which the announcer introduced Oprah and she took the stage was no doubt one of the most powerful things I’ve ever experienced. 

The crowd was in a frenzy. Everyone was on their feet, and the cheering was deafening. I can’t even imagine what it must be like for Oprah to experience that everywhere she goes. 

Yes, the photo is blurry, but it’s Oprah!! In person!!

For the first segment, she wore a cute magenta dress and heels. Her look was very simple, as if she wanted the color and cut of her dress to speak for themselves. She looked trim and healthy, and was full of energy despite the fact that it had already been a long day before she started our taping. She changed into an orange dress for the second segment, which I didn’t bother photographing because I could tell the iPhone pic of the magenta dress was going to leave much to be desired.

Watching her do what she does was quite simply fascinating. She is just as polished and professional as you might imagine. She is warm and funny, and her interactions with the audience were personable and fun. Her co-host for our tapings was Rick Warren, author of The Purpose-Driven Life and pastor at Saddleback Church in Southern California. I tried to read his bestselling book when it first came out and was all the rage, but it just didn’t work for me. I’m pretty much the only person it didn’t work for, though; Oprah says it’s sold some 30 million copies worldwide, has been translated into more than 50 languages, and is the bestselling nonfiction hardback book ever, second only to the Bible.

That’s ok, I’m used to marching to my own beat.

Anyhoo, Rick Warren is similar to Oprah in that he’s very, very good at what he does. He seems quite personable for a multi-millionaire, and has no trouble filling the air space with his parables and personal stories. He’s a bit too preachy for me, and there were times in which my attention lagged while he ventured off on yet another sermon-y lesson, and the majority of the advice he dispensed seemed very much based in common sense. Yvonne and I felt like quite the smarty pants because we were way ahead of Pastor Rick’s advice to the struggling and lost souls who sought solace from his folksy, common-sense wisdom.

Both tapings we witnessed are scheduled to air in January 2013, so Oprah said “Happy New Year!” a lot. I’m sure glad she didn’t slip up and make reference to the fact that it was 90 degrees in Houston Texas that day! That would have been a bit incongruous with a January airing. The first segment centered on Rick’s update to The Purpose-Driven Life, which will be published soon. I didn’t get the exact date because frankly, if I couldn’t get through his book the first time, the updated version holds little interest for me. The theme is how to manage the cards you’re dealt, which is something everyone can likely relate to, regardless of whether they find Pastor Rick a bit too preachy and a bit too sermon-y. The one thing he said that really stuck with me, out of the hundreds of soundbites and cleverly packaged sayings he shared, is this: “A wise person can play a bad hand and still be a winner.” True dat. He’s also a big believer in happiness being a choice and reminded all 3,000 of us in the Hobby Center that we can be as happy as we choose to be.

I was happy when Oprah delivered this pearl of wisdom in regards to the practice of comparing ourselves to others and trying to keep up with the Joneses: “You can only wear one pair of shoes at a time.”

I like that little reminder and find it quite timely in our world of ever-increasing stuff and the pursuit of more of it.

She also said “I know a lot of famous people, and I know a lot of wealthy people, but I don’t know a lot of powerful people.”

There’s an aha moment for ya.

The second segment focused on what our reason for existence happens to be. Pastor Rick seems determined to make sure each and every one of us finds out why we’re on this Earth. He spoke a lot about a life of service (which, as an at-home mom I feel quite well-versed in, thank you very much). His idea of a life of service is a bit more big-picture and a bit more mission-oriented than mine. Personally, I don’t think one must dig a well in Central America or teach English to Indian children in a primitive village to serve. In my small-world application, serving others might mean parenting my different-as-night-and-day children in the manner that suits them rather than the one-size-fits-all approach that may be easier for me. It might mean speaking openly and honestly about the ugly truth of breast cancer instead of tying yet another pretty pink ribbon on it and adding another coat of glossy pink lipstick.

As Oprah finished the second segment, she spoke directly to us, the audience. The first thing she did after the show ended was take off her shoes. She stood at the edge of the stage and thanked us for taking the time to get dressed up and for coming to see her. When someone from the audience yelled out to ask if she’d take a picture with them, Oprah flat-out said no and went on to explain that if she took a picture with one person, everyone else in the Hobby Center would want to do the same and none of us would ever get out of there. I really respect that, and it demonstrates that she practices what she preaches when she counsels her viewers to stand up for themselves, to do the right thing even if it disappoints someone. As someone who lives and dies by ratings, it would be easy for Oprah to get caught up in the idea that if she says no to a viewer’s request, they might not like her anymore, and her livelihood and her very existence is predicated upon people liking her and tuning into her shows. Granted, at $2.7 billion she can afford to have a few people be ticked at her. I was perfectly content to leave without a picture of myself and Oprah; I’ve got plenty of good memories of our time together on Friday afternoon.

Trying to decide what our purpose on Earth is generated a powerful hunger, and our delectable crab salad seemed long gone by the time we crawled through traffic in downtown Houston and away from Oprah.  Several roads around the Hobby Center were closed in preparation for the next day’s Komen Race for the Cure — how ironic that Komen impeded progress even as we tred to get to dinner. After navigating the detour for the cure, my foodie friend and I headed straight to Brasserie 19 to fortify ourselves. We talked the whole way out of downtown about what we think our reasons for existing may be. Yvonne’s seems easy: she’s a therapist and she helps lots of people with real-world problems. Mine seems more elusive. She suggested my little blog may be part of my purpose in life: to blab ad nauseam about breast cancer truths or any other topic that flits into my head. Perhaps.

While we may not have figured it all out, one thing is for sure: with all of Oprah’s talk of Happy New Year, we decided that our purpose in that moment, after a glorious day in a once-in-a-lifetime arena with Oprah, was to celebrate life and drink champagne. 

Happy New Year!

A pretty pink piece of mail

Posted: October 2, 2012 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , , , , | 14 Comments

Because it’s October and we’re awash in all things pink, I got this cute little notice in the mail from my health insurance company. 

Of course it got my attention, amidst the heaps of junk mail, because it’s pink and because when I see a pink ribbon, my brain immediately goes into fight or flight mode as visions of Komen’s money-grubbing dance in my head.

Ok, that’s a bit harsh; Komen isn’t just about money-grubbing. But Pinktober does that to me. I jump to conclusions and get all snarky.

I sat down to read this pink piece of mail, expecting to roll my eyes at yet another meaningless and offensive bit of  “awareness” propaganda. Plus, the headline imploring me to put myself first made me think I had free reign to be totally selfish and say, go get a mani-pedi instead of cooking dinner for my people. I had to read more!

Sucked in by the pink haze and the make-me-be-naughty headline, I read on. Page 2 asked a pressing question:

Why, yes, as a matter of fact, I did know that. I also know that mammograms aren’t all that effective at detecting a lump in one’s breast, as I’d been having a mammo every year and at various levels for 5 years before my lump was detected, and even then, it wasn’t detected by a mammo at all but rather by my uber-vigilant OB-GYN, who I credit with saving my life, or at least saving me from a much more protracted and undoubtedly less pleasant cancer “journey.”

Oh, boy, there goes the snark again.

I love the images used in this: the radiantly healthy, young, smiling patient with her gown perfectly draped around her non-cancer-infested body. The state-of-the art screening equipment. The competent and in-control technician. And last but not least, the perfectly round, plump, healthy breast on the screen.

Sigh.

Now I’ve moved straight from snarky to sad, and I’m only on page 2.

Page 3 gets a little more serious, but I’m still sad. That image of the round, healthy breast stays with me. I like that page 3 imparts a serious note, taking care to provide a few snippets of facts & figures to prod one but not scare the bejeezus out of one. The sympathetic tone of, “We know you haven’t scheduled your mammo and we understand, you’re busy taking care of everyone under the sun” is really effective. It’s also very reassuring the way the text suggests “Hey, if the worst does happen and the mammo we suggested you schedule shows that you do in fact have breast cancer, it’s ok; you’re good. We caught it early so you’ll survive.” (You’ll survive, but  your life, your wallet, your mind, and most of all, your body will never be the same.)

It goes on to list the signs & symptoms of breast cancer, just in case you aren’t sure. And another suggestion to schedule that mammo today. I love the line about how it won’t cost anything but time. I guess they decided against full disclosure, and nixed mentioning that the smooshing of those nice round breasts is  uncomfortable, and that the hospital smell and presence of nightmare-inducing germs everywhere may make you want to run screaming from the building, it might freak out the intended audience and one might decide to chuck the pretty pink pamphlet onto the recycle pile without a backward glance.

I did a double-take at the statistic at the bottom of the page: Did I know that BC claims last year totaled $4.3 million? No, I didn’t know that. That’s a lot of cake.

At first blush, I thought: what kind of nutter is running the accounting office, if they don’t know that I’m one of those claimants? How can they overlook the fact that I’m likely responsible for a quarter of their 2011 claims costs? I’d think that my name is at the top of the list, perhaps with a yellow highlight or maybe an alarm bell that rings, or who knows, a nuclear-reactor type meltdown when my name and ID number are associated with yet another costly claim for United Health Care and Baker Hughes. It’s been a while since I’ve kept an eye on the amount of my claims, but it’s safe to say that it’s up there. Not crazy expensive, like the dresses Ann Romney continues to wear for public appearances, seemingly clueless to the fact that this thing called the Internet exists and it’s easy to check on which designer created her frock and how much it cost, all while she and Mitten claim to be regular folks who don’t consider themselves filthy rich.

Oh good grief, the snark is back. Let me go back and look at that sweet image of the round, healthy, never-to-be-seen-again-on-my-body breast.

Ok, all better.

Thankfully, before I could call the health care PR folks and cuss them out for sending me–me, of all people–a mailing asking if I knew how much my claims had cost them, the Hubs saved me from embarrassing myself and owing a hard-working corporate soul an apology. Just as I was getting really worked up about how in blue blazes could they NOT KNOW that I’ve made hundreds of thousands of dollars in claims because of breast cancer, the Hubs reminded me that we didn’t have United Health Care during the shitstorm of mastectomy, infection, hospitalization, endless labwork, multiple stabs at diagnosing that damned infection, surgery, surgery, surgery, hospitalization, not one but two infectious-disease teams, at-home IV antibiotics, debridement, debridement, home health care, more debridement, more at-home antibiotics, wound vac, the Big Dig aka DIEP reconstruction, ICU hospitalization, more antibiotics, 2 revisions to said reconstruction, and at least 100 visits to the plastic surgeon, yadda yadda yadda.

My bad.

United Health Care got me once the bulk of my spending frenzy was done. No wonder they send me such nice, pretty mail. Whew, I am SO glad I didn’t get on the horn and issue a blistering diatribe to the first person to answer the 800 number. That would have been soooo embarrassing.

The pinky mail wraps up with one final statistic:

 

I guess I should be moved by the fact that United Health Care is looking out for the many women who are eligible for a smash-&-snap but who didn’t schedule one last year. And I am. Yes, I know that it’s in UHC’s best interest to have their insured women get their mammos, because screening is cheaper than mastectomies and chemo and radiation. I do like the gentle statistics employed in this publication–nothing too in-my-face, not all gloom & doom, no hint of “do this now or burn in BC hell.” I appreciate the assumption that I’m a grown woman who can decide for myself; personally I’m not one who needs to be told twice when it comes to doing something necessary but unpleasant, but I can forgive the repeated pleas to schedule that mamno now, because not everyone shares my “get ‘er done” mentality, and most women have less flexibility in their schedules than I.

This piece of mail struck the right balance of “you need to do this even thought it might uncover your biggest fear and thrust you headlong into a medical nightmare” and “that said, we’re here and are gonna take care of you.” I give high marks to the copywriters who straddled the idea of scaring us enough to schedule that mammo but not keeping us awake at night wondering what it will be like.

Before I was diagnosed, I didn’t give much thought to breast cancer. Sure, I saw the pink ribbons everywhere and thought the women whose bald heads were under cover of a pink bandana are mighty brave (I still do think that, BTW). Even when I got picked for the melanoma lottery, and even when my sweet mama died a not-so-pleasant death from a reproductive cancer at the still-too-young age of 67, I didn’t think much about breast cancer. I still didn’t think much about it when my awesome OB-GYN learned of my sweet mama’s death and said let’s go ahead and get you started with a baseline mammogram, even though you’re nearly 5 years away from the recommended screening age. Every year my mammo came back funny (not funny ha-ha but funny peculiar, because there’s not a damn thing funny about a funny mammo). I still didn’t think about breast cancer. The radiologists chalked it up to dense breast tissue and said, let’s see what’s going on next year. Then the next year, the images still looked funny, and maybe even a bit more unusual, so I saw a breast specialist and endured a series of biopsies. And still, I didn’t think about breast cancer. That breast specialist said the biopsies didn’t show anything overtly cancerous, and I was young for the cancer beast to come calling, so let’s just keep an eye on it and continue the annual screenings. Even then, I didn’t think much about breast cancer.

Fast forward to the present day, as I sit with a well-done mailing imploring me to schedule a mammogram.

Now I feel the need to call United Health Care, not to cuss anyone out, but to tell them thanks for the pretty pink mailing, but to kindly remove me from the distribution list for future mailings. See, I won’t be scheduling a mammogram this year, or any year in the future. Instead, I go see the unflappably darling Dr Dempsey twice a year for a chest and lymph node ultrasound. It’s not a breast ultrasound, because my breasts contain no breast tissue. Nope, they are made of 100 percent belly tissue, and breast tissue and belly tissue look totally different in a mammo. As far as I know, there’s not a smash-and-snap procedure for the belly. In addition to my twice-yearly screening by my favorite breast surgeon, I get to see my cutie-pie oncologist three times a year. Blood work checks my tumor markers and hormone levels, and I submit to a thorough exam and lecture about my champagne habit.

Maybe I will call United Health Care, to tell them that I appreciate them putting out such a fine piece of mail. The best part about the mail? Not once is there an image like this

ort this

or this 

or this

or this

or this

or this

or good-golly-miss-Molly this

And for that, I’m grateful.

 

A tale of 4 cousins

Posted: June 19, 2012 | Author: | Filed under: kids | 16 Comments

I had every intention of waxing poetic about my dad for Father’s Day, but the words aren’t flowing in a way that will allow me to do justice to the topic. Instead, I’ll resort to letting pictures do the talking for me. A picture is worth 1,000 words, right?

My brother and his kids arrived from New Jersey on Saturday for a long-overdue visit. My dad is in hog heaven with all 4 of his grandchildren together. My parents waited a long time for grandkids, then got 4 in 5 years. My brother and I both had a boy followed by a girl, just as my parents had. While these 4 kids have never lived in the same state, they enjoy each other’s company as if they have grown up next-door to each other.

In the beginning, there was Payton (far left), Andrew & Megan.

Then came Macy, and the cousins were complete.

They don’t often sit down for a meal together, but when they do, they have a ball.

This visit has been full of fun. Nothing makes my dad happier than being surrounded by his grandkids. It’s a mutual adoration society.

Splashing in the pool, riding amusement park rides, and hanging out — good times.

This was the day of my mom’s funeral. Words fail me when I see this photo. The looks on each kid’s face speaks volumes.

We miss you, YaYa, but promise to have fun and to love each other nonetheless.

Becoming Benjamin Button

Posted: April 5, 2012 | Author: | Filed under: breast cancer, cancer fatigue, drugs, menopause | Tags: , , , , , , , , , , , , | 26 Comments

I haven’t seen that movie, but I feel Benjamin’s pain with premature aging. I don’t recall anyone telling me in the early days of this cancer “journey” that being thrown into menopause a decade earlier than normal would be such a bear. In fact, I don’t recall hearing anything at all about being thrown into early menopause. Yet another lovely bit of fallout from a cancer diagnosis, for sure (insert a boatload of sarcasm here).

Menopause is a bitch on any level. It’s certainly not a contest, and some women have it way worse than others. I’m thinking of one darling friend in particular who’s been dealing with the ‘pause for 10 years. Yuk. It just sucks, and I’m because I’m officially old and crotchety, I’m not in the mood to look on the bright side or try to find something positive about this shitty situation. Correction: I just found something positive — it gives me an excuse to use the word shitty, one of my faves in the cursing arsenal.

I first came face-to-face with chemically-induced menopause two summers ago when my favorite oncologist recommended hormone suppression since my breast cancer was fueled by estrogen. Get rid of the food supply, starve the cancer; makes perfect sense. Suppressing the estrogen for me was achieved by the dynamic duo of Tamoxifen and Lupron. For the lucky uninitiated, Tamoxifen is a pill-form of chemo that we members of the pink ribbon club take every single day for 5 years, minimum. The Lupron is delivered once every three months via a gigantic needle that left me bruised for weeks.

Enduring the injection was a piece of cake, though, compared to the side effects of Lupron: constipation, joint pain, bone pain, general body pain, dizziness, hot flashes, fatigue, stuffy nose, nausea, sweating, insomnia, weakness.

Great.

Add that to the side effects of Tamoxifen–bone pain, hot flashes, loss of balance or coordination, persistent fatigue or weakness, among the highlights–and you’ve got a hot mess.

No wonder I feel bad.

Then I look in the mirror and I feel even worse.

Side effects of menopause are just as fun as the drugs’ side effects: hot flashes, osteoporosis, hot flashes, mood swings, hot flashes, changes in your female gear, hot flashes, mood changes, hot flashes, change in vision, fatigue, hot flashes, night sweats, hot flashes, joint pain, hot flashes.

Did I mention the hot flashes?

The combination of the drugs’ side effects and general menopause side effects are mind-boggling.

The unsung side effects from all this mess are mostly vanity-related but no less troubling. A thinning of the hair on one’s head accompanied by a growth spurt in the hair on one’s face. Decreased collagen in the skin. Dry skin. Dark circles under the eyes. Brittle nails. Wrinkles. More wrinkles. Changes in hair color and texture.

Any part of this would be unpleasant enough when dealing with it at the “normal” time, whatever the hell normal is anymore. Going through the ‘pause with girlfriends could be fun: let’s stay up all night, sweating and hot-flashing, while watching our moustaches grow. Sure, we’ll be extra tired and grumpy the next day, but hey — we’d be tired and grumpy anyway, right? If I’m going to become an old bitty before my very eyes, I want to do it with my BFFs.

But wait, I’m on an accelerated schedule. I’ve got the Fast Pass to menopausal hell, while the women in my peer group are still relishing their early 40s. Botox is for fun, not necessity, and plucking billy goat chin hairs is reserved for grannies. 40 is the new 20, right? Except for me; 40 is the new 60. I am the granny in this scenario. I’m feeling more kinship with Betty White than with J-Lo.

To quote Sheryl Crow, “No one said it would be easy. But no one said it’d be this hard.”

 

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