Breast Cancer Prevention

Let’s talk about this. There is no way to prevent breast cancer. None whatsoever. Not now. Maybe in the future. But not now. The only exception is if a person has a BRCA 1 or 2 mutation s/he can have a double mastectomy (a barrel of fun) and a salpingo-oophorectomy (tubes and ovaries removed). This minimizes the risk of breast and/or ovarian cancer in this small population. Somewhere between 5-10% of breast cancers are due to BRCA mutations. That’s about 12,000-24,000 newly diagnosed cases each year. People used to say the only way to prevent breast cancer was by being a man. Not true. 10% of breast cancers are in men.

Every now and then, well meaning friends will post something in my Facebook messenger account asking me to put a heart on my timeline in honor of Breast Cancer Prevention Week. The first couple of times I received the request I ignored it. There is no such thing as Breast Cancer Prevention Week. Or at least, I have not been able to find any information about this. The next wave of requests hit me when I was feeling snarkier. I probably pissed off some coworkers when I went on a rant about why I would not put a heart on my timeline.

That was a few months ago. I recently saw another wave of red hearts peppering timelines and wondered what hidden cause was making the rounds. Then I received another request to put the red heart on my timeline and share the message about Breast Cancer Prevention Week. I told my friend it doesn’t exist. I decided I had to post something about it.

So, here is what I do know about preventing breast cancer, per the Mayo Clinic website:

1. Don’t smoke.
2. Don’t be fat.
3. Exercise.
4. Limit alcohol consumption.
5. Breastfeed.
6. Limit hormone replacement therapy.
7. Minimize exposure to radiation and environmental pollution.

Considering I did 1-6 and can only hope that my environment was as safe as possible — and I still had breast cancer — my takeaway is that the list is flawed. While I was being treated someone told me that cancer is a matter of bad genes, bad environment, or bad luck. For me, it was bad luck.

Maybe I was a bit more peeved this most recent time I received the request because I had just found out that one of my breast cancer buddies received bad news. Her cancer came back as a free floating belly mass. WTF?! I hadn’t considered that possibility. I have only been thinking about the liver, lungs, bones, and brain as possible metastasis sites. They are the most common, but they don’t have exclusive rights, apparently.

You might be wondering what in sam hell you can do.

You can do breast self-exams (BSE) monthly, preferably at the same time each month. Gentlemen, this includes you, too.

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If you have any doubt you are doing it correctly, ask your doctor or check out some videos on the internet. It’s a good thing to know your breasts when they are healthy so you have a point of comparison. It’s also nice to know what you’re missing when they are chopped off. Your breast tissue covers more area than you would think. Here is a good visual. Don’t forget to check all the way into your armpit. That is where cancer likes to hang out on its way to other organs. Since my mastectomy, my breast exam instuctions are to palpate to the bottom of my ribcage. Go for it. What do you have to lose other than a minute?

You can get genetic testing if you are high risk. This is currently covered under the ACA; don’t count on it if Trump gets his way with insurance. Preventive medicine for millions of people will no longer be availale and there will be a spike in breast cancer (all cancer) deaths because some people (everyone else besides the 1%) will not be diagnosed when they are Stage I or II and their cancers will be more advanced, hence more lethal.

You can get mammograms. Sure, I know they are about as much fun as slamming your finger in a car door, but they do help detect tumors.

You can be proactive. If you think something is amiss, push for testing. Push for answers. I did. It saved my life. For now.

And, for the love of god, don’t do your BSE with a bra on or have talons like this model.

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WTF! Take off your bra.

You can exercise, eat well, keep your weight under control, don’t smoke, limit alcohol. There is a wealth of information about healthy diets. I’m not a dietician. I know what works for me. Find what works for you.

And, if you do get cancer, it’s not the end of the world or your life. It’s just the end of life as you knew it.

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Three Years and Counting

Three years ago, I was lying in bed wondering if the biopsy I had had would prove to be nothing or something. And, if it was something, how big of a something would it prove to be. I woke up on December 20th with a sinking feeling in my gut. I knew. I knew the biopsy would change my life. I just didn’t know how much.

Now that cancer is in my rearview mirror most of the time, I can catch my eyes in that mirror and know that not much has changed, yet everything has shifted.

I am alive. Jake is alive. My mom, brothers, family, and friends are all alive — at least those who were alive when I was diagnosed are still alive. Dictionary.com defines alive as “having life; living; existing; not dead or lifeless.” That’s a weak way of looking at alive. I want to do more than just exist or not be dead. It is also defined as “full of energy or spirit.” I’ll take that. There is a huge difference between existing and being full of energy or spirit. I get it, though. There are many days when I feel like I’m merely existing. dead-alive

When my son was in high school, I used to look forward to him going to college so I could go out and meet a man and perhaps think about getting married. I was diagnosed during his senior year of high school. My goal shifted from meeting a man to meeting a really good oncologist, surgeon, and radiologist.

So, tomorrow, in the early afternoon, on the anniversary of my diagnosis, I’m going to sit someplace quiet and take a few deep breaths and think about how lucky I am that I am alive. Then, after I survive all the holiday hoopla, I’ll make plans to really take care of myself: yoga, run, eat well, and try to sleep. But, first and foremost, I am going to write every day and finish my memoir. writing-600x400Everyone else in my life is old enough to take care of themselves. It is time for me to look inward and close out the distractions. Other than work and writing, I won’t surface much except to exercise. My social needs are few. Perhaps being a massage therapist helps narrow my needs. After touching people for a few hours, I have hit my limit. After the holidays, I will have definitely used up my quota. In a good way, but I will need some days off.

I’m fairly sure I won’t have time for another post before the new year, so I wanted to thank you for following my blog and hanging with me through the ups and downs of these past three years. I am looking forward to many more.

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Grateful Schmateful

Yesterday was Thanksgiving, a day I should have spent feeling grateful for everything in my life. Instead, I was resenting the fact that I had to work on a day when so many people get to spend time with friends and family. I wasn’t really in the mood to spin my grumblings into something positive. I think if anyone had told me to be grateful for my health, I might have lost my shit.

I am grateful for all the obvious reasons:

My son. Wow. Jake. I can’t say enough about him and how much he has changed my life for the better. I think the Chinese start counting at conception for how old someone is, so for twenty-one years he has enriched my time on earth. He was an old soul at birth and continues to amaze me with his insight and wit.

My mom. She has always been there for me, sometimes, too much. Like most moms, she would have rather taken the cancer bullet than watch me deal with it. I’m grateful that we’ve had fifty-five years (in the Chinese tradition) to learn how to live. She taught me so much about dealing with adversity and always looking for a silver lining. It’s hard to watch her age. I wish I could put my head in the sand and remember her as a braless gay divorcee telling fortunes and dancing to whatever was on the turntable instead of seeing the inevitable toll that time is taking on her.

My brothers. Pat and Terry. I got choked up the first time we told each other we loved each other. Thank heaven it was on the phone so I could have that moment to myself. I still get choked up thinking about these two wonderful men and how blessed I am to have them in my life. At times, we fought like dogs, but a pan of warm brownies was always a welcome peace offering.

My friends and extended family. This post isn’t long enough to single out each one of these amazing women and men, and I don’t want to hurt anyone’s feelings by not including them. The emotional and financial support I received during my treatment meant the world to me. We have had adventures, heartbreak, meltdowns, fun, partied like there was no tomorrow, woke up knowing there was indeed a tomorrow and it came with a headache, quiet times, shared confidences, and much, much more. My life is richer because of them (or you, if you’re reading this.)

My mentors and teachers. They are also friends. Actually, there is overlap from friends into all the other categories. But, really, my writing and my focus have been deeply impacted by mentors like Katey, Patty, Michelle, and Raymond.

My dogs. They have been my snuggle bunnies. They did not mind my cancer because it meant nap time on the couch or bed. They are my shadows. My yin and yang. Sophie is thirteen and getting confused. Some would say she has always been confused, but it’s more obvious now. Rowdy is my fierce protector.

I am also grateful for intelligence, wit, job, roof above my head, beautiful garden, travels I have done, books, creativity, and so much more.the-universe-is-testing-me-i-am-grateful-for-l-ayo_a3

But, what I am not grateful for is cancer. I am, indeed, grateful that it gave me a wake up call–a kick in the ass to write my memoir. But, I am not grateful for what I have lost and how my body has changed. I’m not sure if anyone besides other breast cancer survivors understand what it’s like to look in a mirror and see a chest/breast. Yes, it was my choice not to do reconstruction, and I don’t regret it. A reconstructed breast still wouldn’t look or feel real. I miss feeling sexual and/or sensual. Since I have no estrogen thanks to my oophorectomy and aromatase inhibitors I have no desire and no lubrication. The idea of sex–once so gratifying and fun–now sounds like hell on earth. First, I would have to deal with how someone looked at my naked body. I don’t want pity or revulsion. Who would? Then, there’s the fact that my vagina is like the Sahara desert. Sure, I could buy gallons of lube and have containers in every room on the off chance that we (hopeful) would want to do it in the kitchen or wherever, but estrogen also influences desire and I don’t have it.

I could continue to list all of the things I am not grateful for when it comes to cancer, but what’s the point. What I am grateful for is that I did push to have an ultrasound which resulted in a diagnosis of Stage II or III depending on which reports I read. If I had listened to my doctor, the tumor would have continued to grow and would have invaded my chest wall. I would have been deformed from a radical mastectomy and unable to do massage. Since it was already in four axillary lymph nodes, it would have metastasized if I had waited much longer. I am grateful that my prognosis is good and that my Her2 diagnosis – somehow missed at the beginning – came to light so that I could take Herceptin which buys me years. Before Herceptin was developed, most Her2 positive patients died within a couple of years. I am thankful for the amount of money and energy that is poured into breast cancer research. Breasts are loaded psychologically, sexually, and culturally. So, if I had to have one cancer over another, breast cancer was a good call. Other organs are just not that visually accessible to the non-cancer public. How sexy is a bladder or a colon? People don’t write poems about gallbladders or livers. Unless the scene is a battle scene, painters don’t paint pictures of intestines or kidneys.

So, as the three year anniversary of my diagnosis approaches, I will continue to be grateful for each and every day on earth. I just have to remind myself that all of the petty bullshit doesn’t matter — and I have to finish my memoir so it can be published and help create a silver lining out of my cancer.silver-lining

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Cancer Free?

Every now and then friends or people who find out I had cancer will say, “So, are you cancer free?” I have had no idea how to answer this question. Online searches haven’t been helpful. Popular wisdom is that if you go five years without a recurrence you can be considered cancer free. I had an appointment with my primary care physician last week and asked her. I told her I knew about the five year benchmark, but wanted to know five years from what? Five years from surgery? Five years from chemotherapy completion? Five years from the end of radiation? Five years from the end of taking aromatase inhibitors? She said it was five years from diagnosis if there is no evidence of disease. She said it’s a conversation I could have more in depth with my oncologist

Five years from diagnosis. So, that means December 20, 2018, I will be cancer free if I have No Evidence of Disease (NED). A little more than 2 and a half years. 977 days.five years

But, really, once you have had cancer, you’re never free of cancer. It’s there. Always. Like your shadow running alongside you.

My scars remind me every time I look in the mirror, look down, try to reach for something beyond my grasp with my left hand, surprised that I still can’t straighten my arm. It’s there when I talk with a new client at the spa and he looks at my chest like some men do when they talk to women and he gets thrown off by the odd pucker of fabric where my breast used to be. It’s there every morning when I hobble out of bed, wincing with every step I take as I cross my bedroom to turn off my alarm. It’s there when I find out a fellow cancer survivor has decided to cease treatment and live gracefully until cancer has its last laugh with her. It’s there when I think about making plans for the future and hope that there is a future. It’s there when I think about dating and think that I just don’t have enough desire to get undressed in front of someone anymore. It’s there when I look at my mom and see her worry and desire to keep me close to her. It’s there when I drive up to my doctors’ office building and see Cancer Center emblazoned on the building. It still takes gives me pause every time I see it. It labels me.

Sure, I know I am more than my cancer. I will always be more than that. But, it changed how I define myself in so many ways. Before I was diagnosed, I was a mom, a runner, a massage therapist, a daughter, a sister, a friend, a smart-ass, a wanna-be writer, a photographer, a bibliophile, and so much more. I am still all that, but cancer caused a shift. One good thing is that it spurred me on to write in earnest. To really set aside time to give into the creative process. Every self-definition was colored and modified by my relationship to cancer.

So, maybe the next time someone asks me if I’malong course cancer free, I’ll turn the tables and say, “I don’t  know. Are you?”The Boston Marathon is today. I’ll be there again. Maybe next year. It can be included in my five year plan–to run it a few more times. I want to get there by qualifying. I want to earn it again. I want to leave the shadow of cancer behind me, no longer running with me.

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Leveling

It has been a couple of months since I posted. Blogging and working on my memoir don’t seem to go hand in hand. They are two different mindsets. Maybe two different audiences. Definitely different tones/voices. I don’t really edit the blog. Maybe a quick read for grammar and spelling, but it’s usually a first draft and hit publish sort of thing. I don’t want to obsess or overthink. That is reserved for my memoir. I don’t want to obsess or overthink it, either. However, that is why I signed up for a coach. Katey force mes to continue to delve and develop. It sucks sometimes. Not being coached, but knowing that I can’t just shimmy into publishing with a raw first draft.

For years, I have been able to rely on the fact that I can spit out a reasonably well-written first draft, free of punctuation and spelling errors, and it is mistaken for a well-crafted story. My teachers have always encouraged me to go deeper and keep revising. I have boxes of drafts that I can mine and rework . I think I will revisit a lot of the “fiction” I have written and rework it into memoir. The key now will be to think about how the childhood stuff relates to the cancer stuff.

Ages ago, during my first semester at Columbia (not NYC), one of my classmates asked me if my writing was like a series of vignettes. At the time, it probably was with my whole first draft being the final draft thing. I was trying to fictionalize aspects of my childhood. After reading Jeannette Walls’ The Glass Castle I realize that I was onto something. That is exactly what she did. There was very little introspection, merely a chronicling of a fairly dysfunctional family. It made me feel like I was a member of the Brady Bunch.

I have just passed the two-year anniversary of my diagnosis. So much has changed. So much is the same. I have a few less body parts and a lot more pain and discomfort. My radiation oncologist gave me the all-clear for a tattoo. We briefly discussed reconstruction. I said that nobody’s going to dig under my pecs. He said that there are flap surgeries and said that their plastic surgeon does DIEP. Then he looked at me and said that I didn’t have much extra weight. I nodded my head in agreement, then shook it. I really don’t want that surgery. It would put me out of commission for work and exercise for months. This is what TRAM flap and DIEP flap look like on a sketch:tram-flap-vs-diep-flap

This is what a DIEP flap looks like on a person.diep post op

I’m sure it was worth it to this lady. But, it’s not worth it to me. I doubt she is a marathon-running massage therapist with two crazy willful dogs and nobody else helping pay the mortgage. I think Mary Shelley was ahead of her time and had probably visualized breast reconstruction surgery in the 21st century.

I told him I was thinking about a tattoo and asked him if he had a problem with that. He shook his head and asked what I was thinking about. I told him a crab. He tried his very best to hide his surprise. This should be fun. Having my doctors palpate a giant crab on my chest.

One thing I have wanted to discuss  on this blog, but haven’t is the new guidelines for mammogram and breast self-exam. It pisses me off that the new suggested minimum age is 50 unless a woman has some risk issues. I think a lot of women are going to die unnecessarily with this new guideline. They also think that having doctors do a manual exam is minimally effective. I might have to agree with that. The area my ob-gyn had flagged as suspicious was not and the tumor site was completely not on her radar. Yes, I have lumpy breasts, rather I did have lumpy breasts. Now I just have one lumpy breast and a left chest that is stretched taut and hard like a flat pink dummy.

My life has kind of leveled out. All the scurrying around to medical appointments has given way to quarterly visits with my doctors. I try to exercise, eat well, and sleep. The medication I’m on contributes to insomnia. There are so many days I wish I could take a nap on a warm, sunny beach. Once I get past this holiday hoopla where I work, I will be able to focus on just being and writing. The bad thing about working in the hospitality industry is that the times of year that everyone else enjoys just suck. Summer is my favorite season and I’m too fucking busy to enjoy it. Christmas – even though I’m not into organized religion – also sucks. I’m not trying to be Debbie Downer, but I have come to dread the holidays. I really don’t like being inauthentic and it really bites to have to pretend to be joyful when I’m just looking forward to not touching anybody for two days straight in January.

I need to think about the concept of level some more. Equilibrium. Balance. Give and take. level bubble

 

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Mona Lisa

I had a client the other night who had had a lumpectomy eight years ago. She had the same type of cancer that I had. ER+/PR+/Her2+. She could barely remember which breast her tumor had been in. She had a lumpectomy. Probably a little easier to forget if all you have is a tiny scar. Her husband is a surgeon and keeps up to date on recent developments. She had done five years of Tamoxifen and then switched to Letrozole. I told her I had been on Letrozole, but had disliked the side effects – the bone, joint, and muscle pain. I told her I was doing five years max of the drugs and then that was it. She said that my doctor would probably want me to continue for an additional five. I said, “Done. Done. Done. Five years is all I will do.” The benefit is so small. The cardiac risk and bone loss outweighs a slight benefit.

The client mentioned the menopause side effects and said that there is a laser treatment for them. Needless to say, I Googled laser treatment for menopause. A plastic surgeon developed a laser treatment he calls Mona Lisa Laser Therapy. A wand is inserted into the vagina and causes the dead cells to be removed and encourages the formation of new cells and production of collagen. It was first done in Italy and has now been approved by the FDA. Insurance companies might not cover it yet. So, if I ever have sex again then maybe I can put on my best enigmatic Mona Lisa smile.

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I took this photo at the Louvre back in 2012. When I first saw the Mona Lisa in 1993, we were able to get much closer to it. It was moved to a different gallery where it has center stage and is much more protected. I wonder what Mona Lisa would have though about a vaginal laser being named after her.

I am not a big shopper so I have been able to avoid most of Pinktober so far. My local grocery store has pink plastic bags with a drawing of a pig. The tail is the breast cancer ribbon. It makes my blood simmer every time I have to get groceries.

Over 230,000 women will be diagnosed with invasive breast cancer each year in the U.S. About 2,350 men will be diagnosed with invasive breast cancer. Approximately 40,000 women will die from breast cancer each year. Pink merchandise does not raise awareness. Pink ribbons do not raise awareness. Having your yearly mammogram raises awareness. Breast self exams raise awareness. It is important to do them early and regularly. Having access to health care raises awareness. I will get off my soapbox.

I haven’t been blogging frequently. For one, there isn’t much to talk about now that all the exciting stuff has happened. I toy with the idea of reconstruction. Or maybe a tattoo. I have been allowing my skin to heal. Apparently, radiation continues to wreak havoc for about a year. Reconstruction is probably not going to happen. I would have to have multiple surgeries and be unable to work for a couple of months. I am the only person paying my bills. This is where a husband would have come in handy. I forgot to get one along the way. Oh well. Also, since I am writing my memoir the focus is very different and I don’t want to dilute my story.

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Another Lap Completed

Whew! Herceptin is finished. I had a few appointments today: lab, Dr. Cheng, bone density, Herceptin, and a check-up with my dermatologist. I was a little cranky with Joyce and Dr. Cheng. I told them that I was tired of being achy and sore in the morning and that I had never had problems with my joints, bones or muscles until I started taking Letrozole. I told them that I have a physically demanding job and cannot abide not being able to give deep pressure. He wants me to take a week break then start a different aromatase inhibitor. If I am still sore in the mornings after a month, we will have to try a different aromatase inhibitor then Tamoxifen if all else fails. I said I would not take a bisphosphonate and that the orthopedic surgeon I had seen about my knee had said to not take them. Last night, I read that some doctors prescribe statins to address bone loss. I am certainly not taking them. Not after Paul.

The thing with starting these drugs is that there is the fear that goes along with them. The fear of being the percentage that doesn’t respond to them. The fear of not taking them and having a recurrence. The fear of the crappier side effects happening.  I told Dr. Cheng that I am done after 5 years. From what I have read, 5 years is standard of care and any additional time on the aromatase inhibitors has negligible benefit. I forgot to ask about the blood test I had read about. I will bring it up with Dr. Walker when I have my port removed.

It’s odd. I don’t mind taking supplements, but I hate taking prescription drugs. I have no intention of being one of those old people who have to take heart meds, anti-diuretics, cholesterol lowering meds, arthritis, anti-anxiety drugs for all the side effects caused by the rest of the medications, etc., etc. When my little fun run with cancer is finished and I have collected my final clean bill of health trophy – that’s it. No more medicine. I am so over dealing with cancer. I don’t want to even say it is someone else’s turn. I don’t want to jinx anyone.

Mom, Terry, and I went to Coquette Cafe to celebrate the final Herceptin. David (mom’s favorite waiter) came in midway through our late lunch. He said to come back when I could have a celebratory drink. Drinks are on the house. I figure two weeks will let the Herceptin get out of my system. Mom began to feel unwell and had to go sit in my car. Terry went with her and she puked several times by the side of the car. I think something is wrong, seriously wrong, with her, but nothing definitive is showing up on the tests yet. She did have a blood test today – ordered by her endocrinologist. Normally, she is slim. She has puffed up like Tweedledum or Tweedledee and looks uncomfortable all the time. I wish she would have a scan or an ultrasound. She had a CT scan at St. Nick’s, but nothing showed up. One of my friends had a rare type of cancer – PMP – so, of course, that is what I think about when my mom says she feels like she has a jelly belly. PMP is nicknamed jelly belly. Symptoms include rapid weight gain and change in girth as well as low appetite and fatigue. All of which she has. No matter what, I hope she gets answers soon. Limbo is not a fun place to be.

I have designed a new service at work called When Life Hands You Lemons. I specifically thought of people going through or healing from cancer as well as people suffering from depression. I just ran across this image. Perfect. So, ladies – and gentlemen – do your self-exams. Otherwise, your breasts could look like these lemons  – which are a pretty good metaphor for my breasts.

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