Sunday, October 31, 2010

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

Sunday, October 24, 2010

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!

Thursday, October 21, 2010

"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

Wednesday, October 20, 2010

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.

Monday, October 18, 2010

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.