Maybe God doesn't want me to have a tattoo...

OK. So I was supposed to get my first legitimate tattoos (micropigmentation) on Friday, Oct. 14th. Then my plastic surgeon's office called and moved it up to Oct. 7; Dr. Askren was going to be out of town on the 14th. Great. I was  looking forward to getting my breast reconstruction process finished up!

Friday, Oct. 7th: I worked from home, knowing I had to go in to the doctor and not knowing what to really expect. But the office called. You're not going to believe this, but their power was out. Hopefully, it would be back up soon. They'd call back. Not too much later, they called back. PG&E was estimating it could take up to 8 hours. They'd have to postpone. On Monday, they'd call with a new date and time.

Monday, Oct. 10: The doctor's office calls and reschedules for Nov. 16th. OK, I can manage that. I was hoping to have the tattoos in time for a family occasion on the East Coast the weekend of Nov. 11, but that obviously wasn't happening...they'd call me if they had any cancellations and could get me in sooner. No use sweating over it.

Thursday, Oct. 13: I get a message to call the doctor's office. I'm thinking, "Wow, maybe they had an earlier opening," so I'm excited when I call. But here's where God had to have stepped in. This kind of stuff doesn't happen to everyone, just to me. The scheduler apologizes, but she's going to have to change the November appointment. "To an earlier date, I ask?" "No," she says. "Unfortunately the machine that they use for the micropigmentation is broken and has to be sent out to be fixed." They're not sure when it will be back. I'm now scheduled for....December 14th!!!

Empower yourself

    My mother had lung cancer. It was no surprise. She smoked three packs of Pall Malls a day and had her first heart attack when I was 12. My teen years were spent waiting on her, responding to the bell she kept bedside, eating prepared meals delivered daily to the house and resenting the fact that my friends had “cool” parents. Mom spent most of her time in a hospital room trying to coax the nurses into smuggling in a pack of cigarettes — oxygen tent be damned!

   My father had open heart surgery in the early days of the procedure; he was in his early 50s. He, too, was a smoker, but he just up and quit one day. Too late. By my mid-20s, both were gone.

   I figured I was destined to have a heart attack. Three of five older brothers have already had heart attacks, bypass surgeries or stints.

    Imagine my surprise when two years ago I was diagnosed with breast cancer. Just like that, out of the blue. Breast cancer? How could that possibly be? I barely had breasts. (When I was single I had a sign in my apartment: “Small-breasted women have big hearts.” I believed it.) I had mammograms yearly; PAP smears annually; saw my internist for annual physicals and quarterly checkups, went to the dentist regularly, got allergy shots on schedule, took all my medications. I did all the right things.

   Why me? It’s a question all of us who have suffered through breast cancer ask ourselves. And it’s a question no one can answer. With the exception of the 6% of women who get breast cancer because it’s in the family, we may never know why.

   On the day I woke to a swollen and sore breast, I called my doctor immediately and got in that day.

Empower yourself to look after yourself

   Though I’d had a clear mammogram just a few months earlier, I was sent for another and given an antibiotic to address the soreness and swelling. That mammogram turned into a sonogram, too, in search of the culprit. It was just a cyst. What a relief!

   The doctor asked if I wanted to aspirate it. “Of course,” I responded. There was no question in my mind that I wanted it OUT.

   We scheduled the aspiration for a couple of weeks later. It was all quite normal. I’d been through it before. I didn’t think much of it.

   But as I lay on the examining table with the sonogram machine next to me and the doctor ready with needle to aspirate, something went terribly wrong. The cyst couldn’t be located. Instead, a dark spreading mass showed up onscreen. The doctor changed his plan of action. He would take a biopsy.

   The news wasn’t good. From that point on, my life was a whirlwind of activity. More tests, more doctors, more appointments. How was a woman supposed to go to work through all this? My surgeon, Dr. Vassi Gardikas, my oncologist Dr. Christopher Perkins, and my plastic surgeon Dr. Carl Askren, worked together to determine the best approach. My calendar quickly filled up. I didn’t have time in my life for this. How would I manage it all?

   I have a demanding more-than-full-time job with lots of responsibility and a staff that depend on me. I have a husband, a daughter in college on the East Coast, and a home to worry about. But I was determined. I would get through this like any other bump in the road.

Empower yourself to look after yourself

   It wasn’t going to be easy.

   “You had the knowledge base to report it,” says Dr. Perkins “You’ve risen to where you are because you are empowered to do something. Once every woman rises above that list of all the things that come first for the family while they neglect themselves, then we’ll see real change.”

   What made me react so quickly to those early signs and to follow through? Perhaps my upbringing. Even with seven kids running around and parents who themselves weren’t the healthiest examples, I clearly remember that health was always at the top of the list (along with education). We all went to the doctor and dentist regularly, four of us had braces on our teeth, two had major optical issues that required special care, one had intestinal issues that required operations, one lost her front teeth in a bicycle mishap and I bit my tongue in half when hit by a swing as a toddler. All of this in addition to the normal childhood mishaps that require medical attention. None of us ever went without medical care.

    Today I ask myself where I’d be now had I not pursued having the cyst aspirated? My cancer, invasive ductal carcinoma, Nottingham Grade 3/3, Her2 positive, was a fast-growing cancer, positioned right behind my left nipple. So fast-growing that I had to have chemotherapy first to slow the growth.

   Six rounds of chemotherapy over 18 weeks started immediately. A bilateral mastectomy (my choice to take both breasts) came after recovering from the chemo, and was followed by breast reconstruction. Four surgeries in the year 2010. It wasn’t the best year of my life; it set me back in more ways than just my health, but I was determined not to let breast cancer become my life, determined not to let it define me.

    I kept up at work, hoping to set an example for my staff, my peers and friends. I tried to see the humor in the loss of hair, the loss of privacy. I painted my nails and toes with bright aqua nail polish every time I went in for surgery. It was always the rage with the nurses (who aren’t allowed to polish their nails). I blamed my forgetfulness on “chemo brain.” (In fact, I still do.) I wore a blond wig to work just for fun (I was a finely dyed brunette prior to losing my hair). I basically bared it all, writing my story for The Bee’s oped pages last year, adding a personal blog, and truthfully answering the curiosities of any who had the nerve to ask.

Empower yourself to look after yourself

   Perkins, of California Oncology of the Central Valley, specializes in breast cancer treatment so he can stay on top of the latest treatments, the latest clinical trials and the progress made treating breast cancer — and bring that expertise to his patients here.

But he says he still gets patients who are further along in the disease for one critical reason: “I was too busy with the kids, the house, the husband.”

   “We need to encourage women to move themselves up on the list,” Perkins says. “At the deeper core is the notion that women have to take care of themselves. The true essence of empowerment is taking the lead in your health. It isn’t rising up the corporate ladder.”

   Perkins blames conflicting reports in the media about the importance of breast self-examination and the age at which you should start having mammograms for adding to the confusion women encounter.

   The bottom line: “The monthly self breast exam is something every mother should be teaching their girls at a young age, as soon as they have their first period... start the habit at an early age,” Perkins advises.

   “It all comes back to ‘I’m taking care of myself so I can be empowered to go on and do something with my life.’”

    Perkins takes the lead with patients who bring teen daughters with them, using the opportunity to demonstrate self examination..

   “The key is if you find something, report it. Don’t let anyone ever tell you, ‘It’s nothing, we’ll check it again in three months.’ If there’s an abnormality in the breast, you need a biopsy. It’s the only way to tell what it is,” he cautions.

   Dr. Askren, my plastic surgeon, says he’s seeing more and more younger women who’ve had breast cancer coming to him for reconstruction. Younger women tend to think breast cancer only happens to “older” women like me.

   “A lot of people think this can’t happen to them. But your breasts are right there in front of you. You need to be checking for lumps and bumps all the time. It’s a crying shame,” he says. “Because the earlier you diagnose and treat, the longer the survival rate.

   “The most important thing is breast self-examination and mammograms,” he points out. “If your BFF gets breast cancer, they won’t be your BFF forever.”

   I know women who are reluctant to go to the doctor. I know women who haven’t been to a gynecologist in years and in some cases, never. I know women my age who have never had a mammogram.

Empower yourself to look after yourself

   It’s been a tough, long road. But if you saw me today, you’d never know I had breast cancer. There’s no sign on my chest. No pink ribbon on my lapel. Friends say I’ve been so strong, and so courageous. What choice did I have? I suppose I could have curled up in a cocoon and made myself miserable. Perkins says he sees plenty of women who do just that.

    “Some days I feel like I’m more priest or counselor than oncologist, but it comes with the job…. It is a tough road. I have to be my patients’ cheerleader; I love you guys,” he says.

   “But I also have to be honest,” he says when I ask about those who won’t make it.

   “We are so fortunate in the U.S. to have the facilities for mammograms. In Cambodia, for instance, the entire country has only two mammogram centers. Here, any woman can go to any center for a mammogram at any time; you don’t even need a doctor’s order. There’s really no excuse... Again it’s all about priorities.”

Empower yourself to look after yourself

   Breast cancer is on the rise, Perkins says, but that’s because it’s being detected earlier. The survival rate is higher than any other cancer.

   “You’d be amazed at the number of women walking around with Stage 4 breast cancer,” Perkins says. “Stage 4 breast cancer patients live for years now; it’s not like Stage 4 with other cancers.”

More women are being cured. Advocacy groups (mostly women) that push Congress to appropriate money for research are helping to cure breast cancer. New clinical trials are being performed in oncology centers all over, including here in Perkins’ own California Oncology center.

   “Thank God that women are advocates for the community. If it was up to men, we’d still be swinging from trees and scratching our heads,” he says.

   It’s that clinical trial data, he says, that gives him the confidence and knowledge to tell survivors they can decrease their risk for recurrence by doing just this: Exercise three hours a week, maintain a low-fat diet and have no more than three alcoholic drinks a week. A direct result of clinical trials, he says women with breast cancer who follow this advice can see a 20% reduction in the risk of recurrence. “That’s more than I can achieve with chemotherapy, which is 6%,” he says.

   So it’s important for women to continue to be the loud speakers for funding more breast cancer research. But it’s equally important for women to take the bull by the horns when it comes to their own health.

Empower yourself to look after yourself

   For me, 2011 has me moving to the final stages of the reconstruction of my breasts. Askren, my perfectionist of a plastic surgeon and a doctor, much like Perkins, who gets to know his patients in a way that can only make you feel better all around, has improved my self-image. If you’ve gone through a mastectomy, you know how devastating it can be to lose your breasts, no matter the size. Fortunately, plastic surgeons have found fascinating ways to recreate women’s breasts. It’s a slow process, but the care and attention of a good plastic surgeon makes a difference.

   “I expect more than my patients do,” says Askren. “I know what will make them happy….Patients sometimes wind up with something better than what they started with and it’s nice to be able to give something back to them. I only wish I could restore more sensibility, rather than the numbness they’re left with.”

   Quality of life can be restored through the miracle of plastic surgery. The seemingly impossible, making nipples out of your own skin (known as nipple origami, in layman’s terms), is a trade secret Askren refuses to reveal. And though I was awake for this surgery, he wouldn’t let me take a peek. The result, after a few months, brings me closer not to the woman I used to be, but the woman I am now.

   I was supposed to get my tattoos last week. (“We don’t call it that,” Askren admonishes me. “It's micropigmentation.”) Askren works with a color chart (just like a paint chip chart) and like a true artist working with a palette, he demonstrates how he’ll use a little bit of this color and a drop of that color to create the areola and color the nipple. “Will it hurt like a regular tattoo?,” I ask. “I don’t know,” he says. “I’ve never had a tattoo.”    Neither have I. This will be my first “micropigmentation.” But wouldn’t you know it...the day of my appointment, the power went out at the doctor’s office. PG&E estimated it could take eight hours to restore. I wanted to ask, “Couldn’t he just do it by candlelight?” (After all, that’s what cavemen did.) But I didn’t think the scheduler would find it funny.

I don’t get upset about these minor setbacks. It’s nothing after what I’ve been through.

Empower yourself to look after yourself

   Soon, the physical portion of my excursion with breast cancer will be over. The mental portion (the worry of recurrence, the questions) will never be over.

   I don’t have the physical strength I had before. I still come home from work and crash, but Perkins says I’m just “more graciously slower... You have your own private view of breast cancer,” he says. “It’s not about narcissism; it’s about humbleness.” He says I’ll take that humbleness and use it to help others. I hope so.

   Today, I look in the mirror and see myself as I’ve always seen myself. Strong, confident, happy, with a husband who has been by my side through it all, a 21-year-old daughter who loves her “mommy” and who will definitely be doing monthly breast self-exams, and a family that supports me in every way possible. Oh, and bigger, perky breasts that give me a boost in self-esteem.

   I look up. Except for the short salt-and-pepper hair. I’ve kept it short and have resisted coloring it. It’s become a kind of silent badge of courage for me, a reminder of what I’ve been through. Just between me and myself — and now you.

   I humbly ask you to do one thing: Empower yourself to look after yourself.

Fear of ballooning

I'm about to make a cross-country trip via airplane. It used to be fun. Now I've got to wear support hose, lymphedema sleeves on both arms and a lymphedema glove on one hand. As if I don't sweat enough at my age!
Lymphedema will be with me forever. Most days I can't get my watch on my left arm and it's been over a year since I've been able to comfortably wear a ring. I can actually see myself blow up if I do too much with my left arm.
But flying makes it worse. I have to be extra careful. So I'm pulling out the sleeves, the glove and the stockings and off we go. Wish me luck!

Massage, massage, massage

Now that I have had surgery on my right breast again, the key to success, according to the plastic surgeon, is massage, massage, massage---all in hopes of keeping any scar tissue from taking over again. So I do. I massage in the shower, I massage before bed, I even massage while driving to work in the morning. I just have to be on the lookout for large SUVs that might come up alongside me....I hope it works this time.

Am I really an extraordinary ordinary hero?

I was taken by surprise a few weeks back when my niece's daughter called me at work. She told me she'd chosen to write a school essay about me, in which they had to choose someone they considered their hero to write about. She chose me. I couldn't believe it. I was really taken aback. We don't see Carly often. They live in New Jersey, not far from where my daughter goes to college. Maybe we're there once a year now, but we talk often on the phone and Skype when we can.
She only wanted to read the essay to me over the phone. It brought tears to my eyes. It was the sweetest thing ever...
I've copied it here to share with you. Really, all women who have suffered and survived the turbulence of breast cancer are heroes. Remember that as you read this, she's not just talking about me; she's talking about you, too.

My Aunt Valerie... A True Hero

By: Carly Decker

          Not many people my age already know their extraordinary ordinary hero of their life time.  Well, my hero is my Aunt Valerie, a survivor! She overcame breast cancer. My aunt is my hero because she has stayed determined, optimistic, and courageous with her breast cancer treatments. Therefore, her survival has been an inspiration to others!

          Why is my Aunt Valerie courageous? Aunt Valerie experienced five surgeries so far, and is expected to have more. Also, she went through six months of chemotherapy which caused her to feel sick almost every day. Additionally, she shaved all her hair off before the chemo caused it to fall out,and wore wigs in public facing the opinions of those who know her. In conclusion, my Aunt Valerie is a very courageous woman who has experienced very hard times and made it through due to her courage.

          “ Don’t worry, I will get through this,” Aunt Valerie said as she told us for the first time she had breast cancer. She was determined already! Aunt Valerie did what ever it took to improve. She was willing to get as many surgeries as it took to get her body to become better than ever. She even flew cross country because she didn’t want to miss her nieces bat mitzvah , even though doctors didn’t recommend it. She was very determined not to let breast cancer take over her life!

          “Oh, I got my wigs today! Should I be a blonde? Should I be a brunette?” she asked laughingly as she skyped us, showing us how she looked in her new wigs! When my Aunt Valerie called us on the phone telling us she shaved her hair and received the wigs, the first thing she told us  was that she wanted to show us her cool wigs! Also, when we spoke on the phone, she always told us she felt great and then my uncle told us the real deal when she wasn’t around! She feels her mind controls her body. When she thinks she doesn’t feel well, she doesn’t. When she wants to feel better, she believes she has to think it first! Therefore, she continues to think optimistically about how she wants to feel, hoping it will make her cancer improve, and it has!

          Unquestionably, my Aunt Valerie is a survivor of breast cancer. My aunt is my hero because she has stayed determined, optimistic, and courageous with her breast cancer treatments. I am so proud of her that she didn’t give up to a terrible disease. She has taught me never to give up on yourself. I love my aunt very much, and I am so happy to name her my extraordinary ordinary hero!

Coming up for air

I know it's been a long time since I posted. I apologize. December was a hectic month. My daughter came home from college for 4 weeks, we moved to a new home, I had surgery -- again, and we took my daughter and 3 girlfriends toVegas to celebrate her 21st birthday. The move was crazy. All that packing just to unpack. We only moved about a quarter-mile, but it was still a major ordeal.
Then, the surgery, just 4 days after the move. A capsulectomy. It was supposed to be my nipple reconstruction, scheduled for Dec. 27 to get it in while the insurance was still covering 100 percent. No such luck.
My right breast had become hard as a rock, while the left was soft/normal. When I went to see my plastic surgeon, he said there was no way he could do the nipples until we fixed the breast. After a sonogram to determine whether it was fluid (it wasn't), the only other possibility was a buildup of scar tissue.
So, on Dec. 27 I underwent general anesthesia for the 4th time in 2010. The doctor went into the same incision, and according to him, had to scrape a lot of scar tissue out, more than he'd thought....it seems it's always a bigger job with me than anticipated.
Bless his heart, he put some type of medicine in the breast to keep the pain down. It wasn't that bad. A week of recovery, back to work a few days and then off to Vegas. I must be crazy. But we'd promised Lauren that since she was young.
And the girls had a blast! Who wouldn't at 21 in Vegas? Me, I tried my best to do as much as possible. But my strength wasn't completely back yet, though I think I did pretty well.
My legs and feet were killing me from all the packing, etc. but hey, I've been through worse. It was worth it to see the faces on those girls!

Great Expectations

   I went to see the plastic surgeon this past week for my two-month visit after the last surgery. Poor Dr. Askren was grateful for the story in the newspaper but embarrassed at the same time. He says I've made his job more difficult now because everyone expects him to be absolutely perfect. Another patient, he told me, came in waving my story and asking, "Well, if you really do make boobs better than God, how come she had to have surgery twice?" He laughed. He's taking it all in good humor!
   I did have to have surgery twice, but it's not that abnormal. There's no way the plastic surgeon can know from the get-go how the implants will rest in the skin that's been stretched (or in my case, some cadaver skin was added). And if you're going to have brand-new boobs, you certainly don't want droopy ones.
   Dr. Askren insists I wait another month to see how the implants settle. I can't imagine them moving, I told him. They feel hard as rocks now and pretty darn tight. He checked them out, told me to massage them so there's movement of the implants and he'll see me in a month. That was just a few days ago and I can already feel a difference in the two breasts. One is definitely looser than the other, but they look pretty good to me. Who knows what could happen in another month. Dr. Askren says there's something about the three-month wait...that certain things seem to change about that time.
   Who could have ever imagined that doctors would be able to totally re-create a woman's breast like this? It truly is amazing when you think about what goes into it. I'm grateful the science is there for me, and grateful for doctors like Dr. Carl Askren who've made it an art.

Something to celebrate

   As you're enrolling in medical insurance this month, here's something interesting you may want to celebrate. While insurance rates continue to climb and employers continue to push more back on employees, those women who've suffered with breast cancer do indeed have something to celebrate!
  Believe it or not, it was 12 years ago when the federal government passed the Women's Health and Cancer Rights Act (1998). It requires group health plans to offer mastectomy patients benefits for:

•     All stages of reconstruction of the breast on which the mastectomy was performed;
•     Surgery and reconstruction of the other breast to produce a symmetrical appearance;
•     Prostheses; and
•     Treatment of physical complications of the mastectomy, including lymphedema.

   I can tell you that I faced each of these situations and I'm incredibly thankful for the passage of this act. Without it, I'd be deformed the rest of my life. With it, I have the ability to return to a sense of normalcy.
   Just one thing we women can all be thankful for!!!