I got a tattoo; I got a tattoo; I got 2 tattoos!

Finally, Dec. 14th arrived! I'm headed for work, scheduled to have my micropigmentation later that day. The phone rings. It's the doctor's office. He isn't feeling well today (I'm thinking, OMG, I can't believe they're going to cancel on me again!)...but he must have known better. They just wanted to move the schedule up so he could get out earlier since he wasn't feeling well. Great. I can handle this. I turn back toward home.
Then I start to think: Geesh, if he's not feeling so well, can I trust him to draw a circle and fill it in? I'll take the chance. In less than an hour, it was all over. An anesthetic injected to numb the already numb area (but it does help keep the bleeding down; whoever knew tattoos bleed?)
Then the artist goes to work. He's definitely got his system down. He shows off the multiple needles and explains what will happen....I don't feel a thing. It sounds like the whirrring of the polisher when you get your teeth cleaned.
Before you know it, it's done. Keep some Neosporin on it with light bandages to keep the Neosporin off my clothes. Sounds easy.
I don't look till later that evening as I change the bandage. It's red, blotchy looking at this point. I'm calm; I'm sure the look will improve over time.
It's been a couple of days now and it's starting to look more normal. Whatever that is ....what's normal about having fake nipples, after all?
I'm sure it will look fine...from a distance....but who's looking anyway?

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.

Damn, damn, damn it all

  Last week as I was reading The Fresno Bee, I opened to the obits and was shocked. My heart dropped. There in front of me, was an obit for a young woman I partnered with on a painting for the Art of Life project (I wrote about it back in 2010 on this very  blog), sponsored by my oncologist, Dr. Chris Perkins. It was about a year and a half ago, January 2010.
  I remember meeting her and hearing her cancer story. She'd been going to Dr. Perkins for about 10 years.  Younger than me and oh so vibrant. Lori Budd. After hearing her tale, told not with sadness, but with a liveliness that I took away with me. I recall vividly how vivacious she was, despite what she'd been through. And I remember her saying, "I told Dr. Perkins that if I'm dying I want to know, and so far, he hasn't told me that, so I'm just living the best I can."
  She left an impression on me. You wouldn't have known at the time that there was anything wrong with her at all. She was working, caring for her family and running a mile a minute through life. It seemed like nothing could stop her. I was impressed with her attitude and grateful to have been paired up with her.
  I remember telling my husband about her and what a great attitude she'd had, facing cancer with no fear, facing recurrences as if it was nothing. Her spirit and vitality couldn't be stopped.
  About 8 years younger than me. A strong professional woman like me. A woman caring for a family, like me. A woman keeping her life together through it all, like me.
  Our painting, titled "We Never Walk Alone," was a hit. It hangs in the hallway at Perkins' office.
  I pray Lori held that thought through it all.
  Damn, that obit hit me hard.

 
  

No boobs, no asthma!!

It's that time of year when my asthma usually kicks in, I can barely breathe and I end up with a hacking cough that sounds like I have the croup. It lasts for months on end. I usually end up at the doctor with walking pneumonia at some point after I'm forced to go to the doctor by my husband, who can't stand any longer to listen to me cough like I'm choking to death.
Well, no more. Thanks to my bilateral mastectomy, it is no more.
No more breasts, no more asthma.
What an incredible solution. Who would have thought it so?
I swear that when I went in for my bilateral mastectomy last February (2010), I was clutching an inhaler. I'd been told by the doctors that I could not be coughing like that during surgery, so I took my last puff before they put me under.
I haven't had to use an inhaler since, knock on wood. Nor have I had to take my twice-daily inhale of my Advair inhaler. I do still take my daily Singulair and my daily Claritan and I still go for my allergy shots every other week, but I was doing all that before the surgery, too.
What on earth was this all about? I sort of made a joke of it when I went on my more-than-regular doctor visits: "Hey doc, you're not gonna believe this, but ever since they cut off my breasts, I don't have asthma anymore??" Mostly, they were shocked.
Finally, my oncologist suggested it might be that the hormone blockers I'm now taking have some steroids in them that might be compensating for the inhaler action. Aha!! Say it's so!
So, if you live in this polluted Valley of ours, I now have the solution. Breast cancer, a bilateral mastectomy, months of chemotherapy, and viola! You may rid yourself of asthma.
But no, I wouldn't recommend this remedy to anyone, not even my worst enemy (I'm not sure I even have one of those!). But I have to say, it's worked wonders for me!

The Art of Life in calendar form!!!

California Oncology of the Central Valley proudly presents

The Art of Life™

2011 Wall Calendar

featuring 12 works of art by women cancer survivors in celebration of LIFE

$20/ea or 2 for $30

*All proceeds benefit The Art of Life™ 2011 Project: COMING SOON!*

Calendars are available at California Oncology’s Front Desk

(6121 N. Thesta,

Ste. 205

near Bullard/41).

Reserve yours today by calling 559.438.7390

or email jenelle@california-oncology.

A great gift for family, friends

 and co-workers!

“What a wonderful surprise to open such a powerful, creative Art of Life calendar from California Oncology!

  The concepts of the women are so intuitive ... awesome really.  Each month captures such a different Spirit.  Aren't women absolutely amazing? 

Especially in the face of crisis and fear .. so often our strengths seem to shine even brighter.

 I am walking through my own cancer journey, but every time I look at this calendar I am reminded that it is going to be a GREAT 2011.

Thank you for giving me the gift of HOPE!”  -Mari

 

 

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!!!

Notes to me

   A shortened version of my initial blog telling my story published in The Fresno Bee last Sunday. The response was overwhelming. I received some of the most heartfelt e-mails I've ever gotten, many from breast cancer patients, who felt that connection with me. Some were just from readers who were openly grateful that so many others might see my story and be more aware of watching their bodies for signs of anything abnormal. It was a great feeling to know I did some good by revealing so much of myself.
   If you missed it I've attached the link, but the story here on my blog has a lot more detail. http://www.fresnobee.com/2010/10/22/2128741/breast-cancer-i-wont-let-it-get.html#storylink=misearch

The full-size Bra Banner

   If you didn't get a chance to see the entire Bra Banner, here's a photo of it, taken at the Susan Komen Race for the Cure Saturday morning. I stood near the banner for awhile just to see what people were saying. Everyone wanted their photo taken with it, even the men! And most everyone approached pointing and saying, "Look at the one with the cones." They were all great bras, made with all kinds of sentiments. If the cones got them to take a close-up look, then it was well worth it!

"Under ReConstruction" makes it onto The Bra Banner

    Last weekend, my friend Kathy and I decided we'd make a bra for KSEE24's Bra Banner for Breast Cancer Awareness month. Last year I wasn't up to doing it as I was right in the middle of chemo treatments and my energy level was low. So this year, we were determined to do it. And lucky me! I had collected three reconstruction bras since February (they are the worst, like a corset, with a zillion hooks in the front and when you can't really use your upper body muscles, it's no fun!). I could easily give up one.
   We gathered last Sunday with no great ideas in mind, but with the intention of shopping for what we'd need and completing it that day. Kathy was thinking of a Wonder Woman theme; I had researched some other bra banners to get some ideas. Then all of a sudden, it came to me. I've been going through the reconstruction process since my bilateral mastecomy in July; in fact, it's become my life...what if we did a construction theme. Immediately, the ideas burst forth. Mini tools, Matchbox contruction trucks, yellow and black duct tape...
    We headed to Joann's Fabrics, then to Target, then to Michaels. In fact, we determined we spent more time finding the stuff we'd need than building it. We hit the gold mine at Target. When I saw those orange traffic cones, I couldn't resist. This was going to be fun! We tried to find smaller ones, I swear, but this was it. We knew it would make it even funnier. We laughed as we gathered up Matchbox trucks, stickers, tape and trim. Of course, we had to hit all three places before we had everything we needed.
    We laughed our heads off when we got home and dumped it all out on the kitchen table. We were like two little devils hard at work. After a couple of hours, and a few stumbling blocks with ensuring the cones wouldn't droop, we were done. Unfortunately, we couldn't use the Matchbox trucks; they were too heavy for the cones! And looking at it now, one boob is definitely a little higher than the other, but of course, that can happen in reconstruction, so we let it go!
    We had a blast. Kathy's husband, Kevin, who's a photographer for KSEE, took it in to work. It got a lot of attention.
    Then, when I walked into California Oncology this week for my checkup, the Bra Banner was on display. The staff was talking and laughing. I started to look the banner over. The nurses said, "This one here's our favorite; everyone loves it." I looked at the bra they were pointing out. How could you miss it? It was ours. I admitted it was ours and they all cracked up, and called every nurse in the office out to tell them I was part of the "ReConstruction" bra. What a hoot!

     The Bra Banner will be on display at The Pink Show Friday night, at the Komen Race for the Cure at Fresno State Saturday morning and at City Hall for ArtHop on Nov. 4. I hope you get just as much of a kick out of it as we did contributing to it.
    Also check out KSEE24's video of the Bra Banner at http://www.ksee24.com/news/video/Bra-105307648.html

Why I'm blogging about this now

  I probably should have started blogging about my cancer journey when it first started, but I was so overwhelmed at the time, and I knew so many others had done the same, I needed to find a way to make my message different.
   Over time, I've come to recognize what has helped me through this battle -- a sense of humor and good friends -- and that's the message I want to get across now. So I'll be reminiscing here a little. My first blog below will give you the overall picture of the past 13 months.
  I'll continue by relating both past tales and what's happening now as I continue through the reconstruction process.
    For other patients, I hope this makes you stronger and more aware that you're not alone, and for those of you who know someone with cancer, I hope this makes you more compassionate and understanding. Most of all, I hope it helps you to help others.

My breast cancer journey

My hair stylist did the initial shave out on the patio.

   It was just 13 months ago when I received the call at work. After some small talk about how the newspaper business is suffering, the radiologist laid the bad news on me. “It’s cancer. Do you have any questions.” Questions? Who could even think?

   Just two weeks prior, during a Zumba class, my breast started to feel a little sore. I imagined it was just from the exercise, but the next morning, my breast was swollen and sore to the touch. I called my gynecologist and was seen that day. The pain was excruciating by the time she saw me. She measured a large lump behind my nipple that was not there the day before, got me on a strong antibiotic and sent me for another mammogram. I’d had my annual mammogram just five months prior; it was clean. At the same time, the gynecologist made an appointment for me with a breast surgeon, as a precaution, she said, and to get me in as soon as possible. Looking back on it now, I suspect the gynecologist knew at the time that it could be something that would require surgery.

   The thought of having a mammogram on a very tender breast was worrisome enough, but by the time I went in for it, the antibiotic had done its work and the swelling and pain had subsided. The technician was gentle, but the mammogram again didn’t show much. She took me across the hall for a sonogram. After quite some time exploring the breast area and up into my armpits, she called in the radiologist. He told me it was a complex cyst (not uncommon; I’d had cysts in both my breasts before) and asked if I’d like to have it aspirated. Of course, yes! I’ve never liked to leave those in.

    A week later, after taking my daughter back to school on the East Coast, I returned to have the cyst drained. After several minutes of searching for the cyst, the radiologist said it had disappeared, but in its place was a dark shadowy area that he felt he should biopsy. He took a needle biopsy and told me he’d call after 4 p.m. the next day with the results. It was a pretty weird experience; how does a cyst just disappear and something else appear in its place?

    The worrying begins

   My husband and I worried all through the night.

   It was just before 11 a.m. the next day when the call came from the radiologist. He explained that I should look at this as a true God-send. If the cyst hadn’t disappeared, they wouldn’t have seen the cancer.

    It wasn’t but about 10 minutes after that shocking call that my gynecologist called. I hadn’t absorbed it all yet; I hadn’t even called my husband yet. “I don’t have time for this in my life,” I said, in the middle of my tears of fear. “You’ll have to make time,” she said. “This is more important than anything else.”

    She knows me too well. She told me how important it would be for me to focus on myself now, to make beating this a priority, to let work take a backseat to my own needs. She told me I could call her to talk anytime. I was overwhelmed with a fear of the unknown. I sat at my desk, stunned, crying, not knowing what to do next.

    One of my managers came in just then. “What’s wrong?” she asked. I told her I just found out I had breast cancer. I could see the look of fear on her face. Later, I remembered that her mother had just passed away ­two months earlier – of breast cancer that had metastasized in her bones.

   I called my husband, not knowing how to tell him. I kept it simple. After all, at this point I knew little, just that it was cancer. He reassured me that we would deal with this together and everything would be all right.

   I broke the horrific news to just a couple of close friends at work, then stopped the tears and proceeded to finish up production of the football preview section. I had planned on a late night at work; there was no way I could just walk out. I pushed the cancer aside and worked. I felt fine; there was nothing about me that would have screamed Cancer.

   The appointment with the breast surgeon was the following Tuesday. We’d have to wait out the weekend, not knowing anything.


Clean-shaven: My husband, Andrew, used his
 own razor to make my head shiny and smooth.

   Breaking the news

     With no family here (we’re from the East Coast), this wasn’t going to be easy. We broke the news to all of them by phone, except my daughter in college. We didn’t want to tell her much until we knew more. One of my brothers, a physician in Miami Beach, was demanding. He wanted to know and see everything. I sent him the films from the earlier mammogram, the new mammogram and the radiology report. He was all over it. He was going to have “his people” look it all over. He insisted I have the doctors call him. He worried that Fresno was some “podunk” town and I wouldn’t get quality care.

     The breast surgeon, Dr. Vassi Gardikas, herself a breast cancer survivor, was blunt. “You’re going to have a mastectomy,” she said. That didn’t scare me. Surgery is surgery. It was far from my biggest fear.

   She explained the diagnosis: invasive ductal carcinoma, Nottingham Grade 3/3, Her2 positive. A fast-growing cancer, positioned right behind my nipple. She was kind, thorough, answered all my questions and made me feel completely comfortable. She recommended I have chemotherapy first to shrink the mass and sent me to Dr. Christopher Perkins at California Oncology. And yes, she was kind enough to call my doctor brother the next morning to explain her plan. He was impressed!

   Dr. Perkins saw me within a couple of days. He, too, entered the examining room and his first words were, “You’re having a mastectomy.” By now, I was used to the idea. 
   But what really scared me was the chemo. I was afraid it would debilitate me, change my life, make me useless. I was afraid of everything I’d seen on TV and in movies. I didn’t want to be that person. He was confident. He assured me he would do everything to make sure I didn’t get sick. But he also told me I’d need to slow down, take care of myself for a change. Six chemo treatments, one every three weeks, spanning 18 weeks. He told me all the truths, when exactly I’d lose my hair (and he was absolutely on the mark), other reactions I might have, the meds he’d give me to keep me from being nauseated, just enough info to get me started without divulging the long-term aspects.

    My life changes, but it's still mine

   Pretty soon, my calendar was filled with doctor appointments, PET scans, MRIs, heart tests… I was constantly at one doctor or another. The chemo treatments each took a full day. My husband came with me for the first one; after that I wouldn’t let him come; he was too nervous and jumpy and I needed to relax. I quickly got used to all the needles: needles to draw blood, needles for the chemo, needles for followup injections five days in a row after the chemo. It became routine.

   I vowed early on not to let cancer overtake my

My daugther, Lauren, and I goof it up at "Avatar."

life. Like anything else, it was just a bump in the road. Cancer was not going to beat me; I was still me. I went to work every day except for chemo days. Even when I didn’t feel that great, when my energy level was low, I dragged my ass to work. If I couldn’t drive, a friend would drive me. I wasn’t going to succumb to this beast.

    I remember telling my staff that I had cancer. The thought never occurred to them. They were more concerned that I was gathering them to tell them I was leaving the company. I looked around the room. With breast cancer striking one in eight women, the odds were one of us would get it. It just so happened to be me. I told them the treatment plan, answered their questions. I told them I had nothing to be ashamed of; I didn’t do anything to cause this to happen to me, and I would be happy to answer any questions they have about it along the way. Be prepared, I said, because you know I’ll tell you the truth and I’ll tell you the details should you want to know. Interestingly, many friends and co-workers did want to know the details. It was as if they finally knew someone who would tell them what it was really like, someone they could ask without being embarrassed. And I found it was good for me, too, to be open about it all. It made it feel more like a process -- and less like a potential killer.

  Looking for laughs

    I tried hard to see the humor in it. Cancer’s not funny, but things happened along the way that struck me as funny: 

n  When the gynecologist pulled out a tape measure…it just wasn’t something I expected her to carry in her pocket. It reminded me of a friend who never leaves home without his Swiss Army knife.

n   When I went for the breast MRI, they had a woman help me get situated (you have to lay on your stomach and position your breasts through two holes).  That, in itself, is pretty funny, but a male tech handles the test. When they needed me to turn over, the male tech said he’d just turn his back while I adjusted myself. Why bother, I thought, he’s seeing all of me on the scan anyway.

n   Unplugging your own IV machine and walking with it to the restroom during chemo treatments.

n   Doing a Mohawk first when shaving my head, just for pictures. (It’s an emotional time, but letting it fall out in clumps is disgusting and you feel better once it’s over.)

n   Friends telling me I looked great bald, that my head was the perfect shape.

n   Friends fighting over who would be my chemo buddy each time.

n   Buckets of KFC for lunch during chemo.

n   When a friend went with me to the plastic surgeon and she asked his advice on what would be better for her: liposuction or a tummy tuck. Quick as a wit, he responded: “Diet and exercise.”

n   When the assistant brought in the largest implant to show me what it looked like. It overfilled her palm. I was aghast. I couldn’t even imagine being that large.

n   The plastic surgeon sharing photos of his vacation to Greece and drawing on the paper on the exam table to explain where he went. I’d never had a doctor do that before! It was funny and comforting at the same time.

n   The oncologist telling my husband it wasn’t his decision if I have one or two breasts cut off. It was my body.

n   Sometimes the chemo nurses had to stick me twice to get the IV in. I told them if they didn’t stop, we were going to have to change my day from Two-stick Tuesdays to another day of the week.

n   When some people came to look at a car we were selling, my husband brought them in the house without even thinking that I was sitting there in the room bald as can be. I wanted to strangle him. I’d only let close friends see me bald. They laughed.

n  Taking photos of bald-headed me with my friend’s bald-headed son.

n   Going to work with a blond wig on (I was always a brunette) just to get a reaction.

n   When a friend sent me a joke about Apple’s new Itit, a breast implant that stores and plays music, a social breakthrough because women are always complaining about men staring at their breasts and not listening to them. He thought I’d be offended. I thought it was hysterical.

n  Making a bra for KSEE 24’s bra banner this year, my friend and I chose to do an “Under ReConstruction” theme since that seems to be my life right now. Black and yellow duct tape, orange traffic cones, you get the picture.

 

      Out with the old; in with the new

     My last chemo was Dec. 29, 2009. After weeks of thinking about it, I chose to have a bilateral mastectomy. I didn’t want to go through this again. Reconstruction would start at the time of the mastectomy so both Dr. Gardikas and plastic surgeon Dr. Carl Askren would work together. It was Feb. 18. My husband’s 81-year-old aunt came from Florida to help us. Now that was funny. I couldn’t get up from a prone position after surgery. She’d pull me up by the back of my pajama pants!

     The reconstruction sounds easy, but it’s not. Week after week of injections stretching your skin. Your ribs ache for days after each injection. Then you’re ready for the implants. Another surgery, this one outpatient. All goes well, but there’s recovery to deal with again. Then we wait for the implants to settle.

   Meanwhile, I’m working on my ability to extend my arms, which isn’t good. The breast surgeon took out lymph nodes under my arm that had dead cancer cells. And while it doesn’t happen to everyone, of course it happened to me. Lymphedema in my arm: That’s swelling from my hand up my arm. After months of physical therapy, wrapping my arm in six bandages every day, then progressing to compression sleeves on both arms and a night sleeve that looks like a giant tight potholder from my fingers all the way up to my shoulder, I’m better. I’ll have it for life and will have to monitor it and bandage as necessary, but for now, the swelling is down and I can get my wedding ring back on. Having your husband, who is definitely not a morning person, spend 20 minutes every morning before work, bandaging you up according to very specific instructions, is not a pretty picture.

     The reconstruction continues. My implants dropped (I say my boobs fell and they couldn’t get back up) so I had surgery again just a few weeks ago to sew more muscle to skin underneath that had stretched. This surgery feels much like the mastectomy. More pain than I thought. Now we wait again, for the settling, and then, hopefully before the end of the year, Dr. Askren will do the nipple reconstruction. I’ll actually have a tattoo of some sort within the process. I’m trying to figure out how to explain this to my daughter, who we’ve forbidden to get a tattoo until she’s paying her own bills. That doesn’t keep her from asking every few months, though.

    What I've learned from cancer

   When I look back at the past year, it seems like it’s gone by fast; other times it seems like so much has happened to me I can’t believe it’s only been a little over a year.

    But here’s what I’d like to share with you from this difficult, yet enlightening situation:

    1. You really find out who your friends are. Those people (employees and friends) who brought meals to the house, who visited, who took me to doctor appointments, who sat with me after surgeries, who called to check up on me, who sent encouraging cards and gifts, who drove me around, those are my real friends. With no family here, we worried about how we’d get the help we needed, but my friends and co-workers were my angels.

    2. Some people just can’t deal with cancer. At work, some people felt entirely comfortable coming to me to see how I was doing, talking to me about the specifics, checking up on me. Others, who I thought cared about me, barely spoke to me. It was as if they were afraid they’d catch it. You wonder why someone can’t pick up a phone, send a card or come over to visit…but I’ve learned to accept that some people just can’t take that step.  To those of you who did stand by me, I can only say thank you. Thank you for caring and for sharing yourself with me.

Wearing a wig at a friend's wedding just after my second chemo treatment.

    Along the way I was asked to to paint a piece of art for California Oncology’s annual Breast Cancer event with two other breast cancer patients. It was themed “You Never Walk Alone.” And that’s true; what’s amazing about all of this is that you find out how much people care for you; how much people are willing to help and share with you. Even strangers: A dean and his partner at my daughter’s college used their frequent flyer miles to send my daughter home to Fresno to surprise me last November when I was still going through the chemo. What a joy and what a generous and thoughtful gift.

     3. You can’t let cancer get the best of you. While it is a pain, while it does turn your life somewhat upside down, interfering in your routines, in your work, in your life, you can’t let it take over. You’ve got to continue to work, stay involved and absorbed in something other than the cancer. I’d rather be occupied doing something I love than sitting at home commiserating about how tough life is. Life would be tough with or without cancer. It’s just one more curve ball that you’ve got to hit back.

    4. You have to find the support you’re most comfortable with. I’ve not joined a support group. It just isn’t for me, but I’ve tried to help other individuals one-on-one. I feel like I can better help others who may be going through what I’ve gone through on a more personal level. But to each his own; just know that whatever you do, it will help you and someone else.

     5. Humor helps to drown out all the suspicions, all the negativity that can so easily rise to the top of your mind. I tried hard to joke with my doctors, to have fun with the chemo nurses, to tease my friends about the size of my implants, to use laughter to put out the flame of cancer.

     6. Breast cancer gets a lot of attention, especially now during Breast Cancer Awareness month, but there are so many other cancers that don’t get quite the same attention. We’ve all been touched by cancer. We’ve all known someone, friend, family, co-worker, who has suffered from the hand of cancer. Research on breast cancer has come a long way. There are, fortunately, known treatments, but there are so many other cancers out there that have few treatment options. These are killers that attack and take lives in little time. There aren’t enough months in the year to have a Cancer Awareness Month for each type. But something needs to be done. Sure, I want breast cancer research to continue (I have a daughter, after all), but I want to be sure we pay attention to all the other ugly cancer beasts out there to which we lose far too many good friends and family.

     7. Go to the doctor at the first sign of anything, and I mean anything. Don’t put it off, thinking it will go away. Listen to your body. Better to be a fool and question it than end up too late to the game. Don’t depend strictly on mammograms. While controversy looms over at what age and how often women should get them, let me suggest that you keep a watchful eye on your own body at all times. Anything odd, anything that doesn’t feel right, should be checked out immediately. With cancer, early diagnosis always gives you a better chance at survival.

     8. Fresno is not Podunk when it comes to cancer physicians. I feel like I’ve had a core team of the best: Dr. Vassi Gardikas, whose humor and experience and personal tales made me feel like I was always in good hands; Dr. Christopher Perkins, whose entire oncology office is filled with cheerful, uplifting nurses and staff who make every effort to know the person behind the cancer, and Perkins himself, who is always positive and confident (and who has cured my hot flashes!), Dr. Carl Askren, my plastic surgeon, whose reputation (“he makes boobs better than God”) holds true and whose interest is purely in making you perfect again; and Lynn Gilbank, my lymphedema physical therapist at Clovis Community, whose caring attitude, expertise, and general concern for my health and well-being was amazing. And there’s also my ob/gyn, Dr. Lura Reddington, who was there at the first call, who made all the right secondary moves and made sure I was in good hands. Even my regular internist, Dr. Roger Gong, reached out to me as soon as he found out. Those of you who believe Fresno is missing the caliber of physicians and health care professionals of larger cities are wrong. I’m sure my team isn’t the only great cancer team in town, either. But having lived in large cities most of my life, I can only say that I am deeply grateful for the expertise and care I’ve received here.

    9. Don’t Google everything about cancer. If you’re going to use the Internet to research whatever it is you think you have, be specific. It’s easy to get overwhelmed by all the information out there and to start guessing at what you might have or how you might be treated. After my first Google error, a close friend offered to research specific questions for me so I wouldn’t see or be tempted by all the other scary stuff out there. It was the smartest thing I did. She culled through lots of info, and gave me only what I needed. It definitely toned down the “scare” factor.

      10. Life is precious and while it sucks at times, while it’s easy to ask “Why me?”, the most important thing is still family and friends and a belief that we’ll all get through whatever it is we’re suffering. I’ve been fortunate to work for a boss who really cares and a company that reached out to help me. I have a husband and daughter who love me. But we all have our own issues. Believe me, breast cancer isn’t my only tough predicament right now. But I’m not going to let it overwhelm me. I’m not going to let it get the best of me. The best of me is still reserved for those I love, for my friends, and for my work and my future. I intend to be around for awhile and should the cancer come back, I’ll deal with it then -- if it does.

    In the meantime, I’ve got virgin hair (curly at that!) and new perky (almost finished) breasts. And at almost 55, I’d say that’s pretty damn good.

 

With my "virgin" curly hair and my precious daughter.